Well, this year continues to be one to remember and the weather is no exception. As I sit here in our living room writing this birthday update, I'm also watching the snow blowing sideways in record amounts. I guess Mason's first winter will follow his lead and be an exception to the norm.
Once again, this past month has seen ups and downs. We have spent much of the month in the hospital because of breathing problems or surgery, and are so thankful to be home in time to spend the holidays together outside of the hospital. Mason seems to be recovering well and has an ever present smile that just warms my heart. We are in awe at how he continues to fight, continues to struggle, and through it all, continues to have a smile at all times.
Lungs/Heart: In preparation for Mason's surgery this month, we once again tried to wean him off of the steroids for his lungs. Unfortunately, this was once again unsuccessful and ended up with him back in the hospital just after Thanksgiving. During this stay, we determined that it was worth the risk for Mason to be on a low dose of steroids up to, during, and after surgery so that his breathing and oxygen need stayed in check. The doctors were nice enough to let us come home for a few days between that hospitalization and the surgery so we could go out and get Mason's first Christmas tree. It's so great to have such a "normal" holiday experience!
Our biggest worry this month was how Mason was going to fare after the surgery. We didn't know if his lungs would decide that it was much easier to work on the ventilator than off. We were so excited when within an hour after surgery, they were able to take the breathing tube out of Mason's throat, and he was able to breathe with just oxygen through a mask and nasal cannula (nose tube). Mason has continued to improve day by day and is now needing 0.5-1.5 liters of oxygen at any given time. He appears to breathe much easier now that the feeding tube is out of his nose and throat.
Eating: We are now nearly 2 weeks since surgery and things seem to be going fairly well. We are slowly increasing the amount of milk that Mason takes in each feeding - we're up to 2 ounces every 2 hours during the day and continuous pump feeding at just under 2 ounces per hour during the night. He seems to be tolerating it very well and it's wonderful for Mommy and Daddy to be able to play with Mason without the food being attached continuously during the day. We are so thankful for the success of the surgery!
Weight: Tomorrow we are supposed to have Mason's 9 month baby check at the doctor's office (though it might be canceled because of the weather). At that point, we'll get new information on Mason's growth and get his percentile information. For now, I can assure you he is growing. As you can see from the updated picture taken a week ago, his double chin is ever present. We are so proud of our little chunky monkey! The 6 month clothes are becoming shorter and shorter (or maybe he's getting longer and longer) and we'll soon be completely out of the 3-6 months stuff.
Development: As expected, Mason lost a little bit of strength from lying on his back or side for a week after his surgery. Before going in, he was able to sit on his own with very little toppling over. He is just now getting strong enough to sit up on his own again, but is toppling over quite a bit. Over the coming weeks, I'm sure he will regain all of his strength and surpass what he was able to do prior to surgery with no problem. We are so proud of our little fighter! After the 1st of the year, we'll get back into PT to see how we can help him to meet his next milestones.
Thanks again for everyone's prayers and support! We couldn't get through this without all of you!
Love,Christi, Bill, and Mason
Sunday, December 21, 2008
Sunday, December 14, 2008
Neither Surgeon Nor Snow Could Keep Us From Home
The driving conditions were treacherous, but we braved the ice and the snow so that we could be home by late afternoon!
Mason is doing well overall with his feedings (now up to his full 36 mL per hour without too much trouble) and his breathing (sleeping and needing only 0.75 liters of oxygen). With smiles all around, we decided that we needed to go home today and the surgeons, with a little coaxing, agreed.
The surgeons were worried once again that Mason was becoming dehydrated since he wasn't peeing enough. After compromising with them - they wanted to start IV fluids, we didn't - to increase his milk intake, they felt that he was stable enough. We then asked if we could go home today. We know it will be tough to manage feeding him through a syringe every hour around the clock, but it's got to be better than staying in the hospital as more and more sick kids come through with colds and flus.
So, here we are back at home, hopefully for more than a month this time. Mason seems to enjoy being able to be moved around some and being held more often than was possible at the hospital. We do have to watch his grabby hands a little more now that he's got another tube within reach, but we're learning. Just another step in Mason's road to recovery.
Thank you every one for keeping us in your thoughts and prayers. We feel so blessed and so lucky to have made it through this surgery and off of the ventilator without too many complications. I'm off to unpack my month's worth of clothes that I brought to the hospital just in case.....
Mason is doing well overall with his feedings (now up to his full 36 mL per hour without too much trouble) and his breathing (sleeping and needing only 0.75 liters of oxygen). With smiles all around, we decided that we needed to go home today and the surgeons, with a little coaxing, agreed.
The surgeons were worried once again that Mason was becoming dehydrated since he wasn't peeing enough. After compromising with them - they wanted to start IV fluids, we didn't - to increase his milk intake, they felt that he was stable enough. We then asked if we could go home today. We know it will be tough to manage feeding him through a syringe every hour around the clock, but it's got to be better than staying in the hospital as more and more sick kids come through with colds and flus.
So, here we are back at home, hopefully for more than a month this time. Mason seems to enjoy being able to be moved around some and being held more often than was possible at the hospital. We do have to watch his grabby hands a little more now that he's got another tube within reach, but we're learning. Just another step in Mason's road to recovery.
Thank you every one for keeping us in your thoughts and prayers. We feel so blessed and so lucky to have made it through this surgery and off of the ventilator without too many complications. I'm off to unpack my month's worth of clothes that I brought to the hospital just in case.....
Saturday, December 13, 2008
Onward and Upward for Feedings
Well, the prayers for poop must have been plentiful - you can stop now. This morning's 5 AM blowout confirmed that everything is moving through as it should.
Last night, Mason had to go back on IV fluids to supplement his eating. The surgeons felt that he wasn't getting rid of enough fluids, so must have been getting dehydrated from the slow increases in milk. So, we had another night of restless sleep as the IV pump repeatedly would alarm saying that it couldn't pump the fluid. The IV site that Mason has is in his neck. Great for IV access and drawing blood (no needle sticks for his many blood tests), but very tempermental. If Mason moves his head in the wrong direction while he sleeps, the IV gets blocked a little. I will be so happy when that's gone!!
So far, Mason seems to be tolerating his food pretty well. They put the food into a syringe above his head (they call it a chimney), attach it to the feeding tube, and let gravity lower it into his stomach. They, then leave the syringe hanging above his head to let his stomach "vent" when it needs to. Since he's got air blowing into his body through the oxygen tube, the stomach fills with air in addition to food. Leaving the tube open to the syringe allows the air to escape instead of building up - we all do this by burping, but because of the reflux part of the surgery, Mason can't burp. So, we have to help him a little. So far, he is up to 24 mL of milk every hour (about 30 mL is an ounce) through the tube and our goal is 36 mL per hour before he can go home. They are increasing the feedings by 3 mL every 6 hours I think, so it will be tomorrow before we know whether or not he can tolerate the full feedings.
Overall, his lungs continue to do very well. He is down under 2 liters most of the time and even got down to 1 liter for a little while last night. Hopefully this pattern continues so that he can gradually decrease his oxygen need.
Last night, Mason had to go back on IV fluids to supplement his eating. The surgeons felt that he wasn't getting rid of enough fluids, so must have been getting dehydrated from the slow increases in milk. So, we had another night of restless sleep as the IV pump repeatedly would alarm saying that it couldn't pump the fluid. The IV site that Mason has is in his neck. Great for IV access and drawing blood (no needle sticks for his many blood tests), but very tempermental. If Mason moves his head in the wrong direction while he sleeps, the IV gets blocked a little. I will be so happy when that's gone!!
So far, Mason seems to be tolerating his food pretty well. They put the food into a syringe above his head (they call it a chimney), attach it to the feeding tube, and let gravity lower it into his stomach. They, then leave the syringe hanging above his head to let his stomach "vent" when it needs to. Since he's got air blowing into his body through the oxygen tube, the stomach fills with air in addition to food. Leaving the tube open to the syringe allows the air to escape instead of building up - we all do this by burping, but because of the reflux part of the surgery, Mason can't burp. So, we have to help him a little. So far, he is up to 24 mL of milk every hour (about 30 mL is an ounce) through the tube and our goal is 36 mL per hour before he can go home. They are increasing the feedings by 3 mL every 6 hours I think, so it will be tomorrow before we know whether or not he can tolerate the full feedings.
Overall, his lungs continue to do very well. He is down under 2 liters most of the time and even got down to 1 liter for a little while last night. Hopefully this pattern continues so that he can gradually decrease his oxygen need.
Friday, December 12, 2008
Gift for Daddy
Yes, it's true, Mason had a very precious birthday present for Daddy today. Thanks in large part to all of your prayers (and a little bit glycerin suppository), Mason gave a little of himself for his Daddy's birthday present.
He's happy, "talking," giggling, on 1.75 liters of oxygen and almost back to his normal self. Now we just need to make sure that he doesn't catch some bug in the hospital as get his feeds up to an ounce an hour which is the rate he was eating before his surgery.
He did have another chest xray today because of a little cough he developed. I think he's still trying to cough up some gunk from his lungs, but they want to make sure that it isn't something else. We haven't heard what the xray showed or didn't show, but I'll keep you posted.
He's happy, "talking," giggling, on 1.75 liters of oxygen and almost back to his normal self. Now we just need to make sure that he doesn't catch some bug in the hospital as get his feeds up to an ounce an hour which is the rate he was eating before his surgery.
He did have another chest xray today because of a little cough he developed. I think he's still trying to cough up some gunk from his lungs, but they want to make sure that it isn't something else. We haven't heard what the xray showed or didn't show, but I'll keep you posted.
Poop, Baby, Poop!
HAPPY BIRTHDAY, DADDY!!!!! Quite fitting that I'm writing about your son's poop on your birthday!
So, the prayer, cheer, thought for the day is POOP! Mason's still feeling the effects of the ileus and the narcotics that he was on, so he hasn't pooped. Until he does, the food is just getting stuck in his stomach and making him uncomfortable. They've stopped the feeding a couple of different times because nothing was moving, and have started suppositories to help him get rid of what's already in there.
The good news for the day: Mason is coming down on his oxygen need. He's now needing 1.5-2.5 liters (the safe range given to us a month or so ago). He's much more comfortable in general and even smiled last night and was slightly giggly this morning.
The criteria for going home:
So, the prayer, cheer, thought for the day is POOP! Mason's still feeling the effects of the ileus and the narcotics that he was on, so he hasn't pooped. Until he does, the food is just getting stuck in his stomach and making him uncomfortable. They've stopped the feeding a couple of different times because nothing was moving, and have started suppositories to help him get rid of what's already in there.
Really, never in my pre-Mason life did I think I'd be rooting for a poopie diaper. Never in my pre-Mason life did I want to have to change a REALLY poopie diaper. But now, in my Mason-filled life, I live for poop. Poop means that he's processing his food as he should. Poop means that he's less uncomfortable. Poop means we are closer to going home. Poop means that he's getting enough nutrition and is growing like he should to get his lungs better. I LIVE FOR POOP!
The good news for the day: Mason is coming down on his oxygen need. He's now needing 1.5-2.5 liters (the safe range given to us a month or so ago). He's much more comfortable in general and even smiled last night and was slightly giggly this morning.
The criteria for going home:
- On oral pain medication (now just on tylenol and ibuprofen) - check!
- Back to baseline for oxygen need (close enough to call good) - check!
- Able to tolerate his food and poop - not yet.
I LIVE FOR POOP!
Thursday, December 11, 2008
It was exactly 1 year ago today......
Warning! - some may want tissues nearby.
It was exactly 1 year ago today that we found out I didn't have enough amniotic fluid - only had 1/2 of what was the low end of the normal range. We sat down with a perinatologist (high risk pregnancy doctor) and had a conversation that I only remember bits and pieces of -- "you have a 50/50 chance of carrying this pregnancy to 20 weeks - the very minimal age of viability," "if you carry to 20 weeks, there's a 50/50 chance of the baby surviving past that," "do you want to consider termination?" Of course, the answer to that last question was a resounding "NO!!!!!" We were lucky enough to "spontaneously" get pregnant after 3 years to trying with infertility treatments and everything we could think of. We were lucky enough to get pregnant!!! We would now do whatever was in our power to see this pregnancy through and whatever was in God's plan was what we would face.
It was exactly 1 year ago today that I went on bedrest where I would stay for 14 weeks - 6 of which were spent in the hospital an hour away from home. The soreness of bedrest would subside after a couple of days. I would get used to the idea that I wasn't to do anything. It would take a little time, but I would get used to it.
It was exactly 1 year ago today that Bill became my hero, caregiver, short order cook, housekeeper, and whatever else it took to make sure we did what we could to save our son. It would take a little time until we found a routine that allowed Bill to get up in the morning, get ready for work, and set me up with a day's worth of food and drink so I didn't have to get up during the day. It would take a little time to get used to our new "roles," but we would get used to it.
It was exactly 1 year ago today that we found out our son did NOT have spina bifida and would not be paralyzed when he was born! We watched as the ultrasound tech ran the ultrasound over his spine and found all of the levels looked like they should. We watched as he kicked his legs on the ultrasound, confirming that he could do so. What a relief!
It was exactly 1 year ago today that we found out we were having a BOY! When the ultrasound tech told us, I leaned over to Bill and so proudly said "you're going to have your son!" My mom and dad were in the room a short time later and got to see all the wonders of an ultrasound. We could see his legs, his face, his head, his arms, his spine. We were so excited to see that he had all the parts he was supposed to have and he was the size he should be at that gestational age!
It was exactly 1 year ago today that we met our son for the first time. Sure, we had heard his heart beat almost daily for about 6 weeks, but now we had a face to go with his "name" (Geoffro).
It was exactly 1 year ago today that we really started our battle for Mason's life and today we are so grateful for every smile, giggle, hug, kiss, and breath. Mason is the joy of our lives. Mason is the pain in our backsides. He is everything we could ever want.
Today, Mason is continuing his slow improvement (well, once we suctioned the knarly booger out of his nose). He continues to need about 2.5-3 liters of oxygen, but appears to be breathing easier when he's relaxed. Last night was a much better night for pain control and we'll be switching from morphine to Tylenol 3 this afternoon. They didn't allow Mason to eat yesterday because of his very slow moving bowels (he has developed an ileus - a blockage very common after abdominal surgery), but are going to start today. I've been able to hold him a few times to help calm him down. He's quite the snuggly little guy right now. We are hopeful that today he will continue his improvement and we'll be able to make some progress in bringing his oxygen need down a little more.
Thank you to everyone who has supported us in the last year. We are so eternally grateful!
It was exactly 1 year ago today that we found out I didn't have enough amniotic fluid - only had 1/2 of what was the low end of the normal range. We sat down with a perinatologist (high risk pregnancy doctor) and had a conversation that I only remember bits and pieces of -- "you have a 50/50 chance of carrying this pregnancy to 20 weeks - the very minimal age of viability," "if you carry to 20 weeks, there's a 50/50 chance of the baby surviving past that," "do you want to consider termination?" Of course, the answer to that last question was a resounding "NO!!!!!" We were lucky enough to "spontaneously" get pregnant after 3 years to trying with infertility treatments and everything we could think of. We were lucky enough to get pregnant!!! We would now do whatever was in our power to see this pregnancy through and whatever was in God's plan was what we would face.
It was exactly 1 year ago today that I went on bedrest where I would stay for 14 weeks - 6 of which were spent in the hospital an hour away from home. The soreness of bedrest would subside after a couple of days. I would get used to the idea that I wasn't to do anything. It would take a little time, but I would get used to it.
It was exactly 1 year ago today that Bill became my hero, caregiver, short order cook, housekeeper, and whatever else it took to make sure we did what we could to save our son. It would take a little time until we found a routine that allowed Bill to get up in the morning, get ready for work, and set me up with a day's worth of food and drink so I didn't have to get up during the day. It would take a little time to get used to our new "roles," but we would get used to it.
It was exactly 1 year ago today that we found out our son did NOT have spina bifida and would not be paralyzed when he was born! We watched as the ultrasound tech ran the ultrasound over his spine and found all of the levels looked like they should. We watched as he kicked his legs on the ultrasound, confirming that he could do so. What a relief!
It was exactly 1 year ago today that we found out we were having a BOY! When the ultrasound tech told us, I leaned over to Bill and so proudly said "you're going to have your son!" My mom and dad were in the room a short time later and got to see all the wonders of an ultrasound. We could see his legs, his face, his head, his arms, his spine. We were so excited to see that he had all the parts he was supposed to have and he was the size he should be at that gestational age!
It was exactly 1 year ago today that we met our son for the first time. Sure, we had heard his heart beat almost daily for about 6 weeks, but now we had a face to go with his "name" (Geoffro).
It was exactly 1 year ago today that we really started our battle for Mason's life and today we are so grateful for every smile, giggle, hug, kiss, and breath. Mason is the joy of our lives. Mason is the pain in our backsides. He is everything we could ever want.
Today, Mason is continuing his slow improvement (well, once we suctioned the knarly booger out of his nose). He continues to need about 2.5-3 liters of oxygen, but appears to be breathing easier when he's relaxed. Last night was a much better night for pain control and we'll be switching from morphine to Tylenol 3 this afternoon. They didn't allow Mason to eat yesterday because of his very slow moving bowels (he has developed an ileus - a blockage very common after abdominal surgery), but are going to start today. I've been able to hold him a few times to help calm him down. He's quite the snuggly little guy right now. We are hopeful that today he will continue his improvement and we'll be able to make some progress in bringing his oxygen need down a little more.
Thank you to everyone who has supported us in the last year. We are so eternally grateful!
Wednesday, December 10, 2008
Out of the PICU
Happy Birthday, Grandma Mary!
Here we are at Day 2 and Mason is doing well as far as the surgeon is concerned. He is very happy with the post-op course so far - said its almost "normal" - whatever that is. The g-tube site looks good, and a series of xrays this morning showed that the tube is in place where it should be and the stomach has no leaks. He just had a follow up xray to make sure that things were moving down his intestines. If all comes back, he should be able to start eating a little bit through the g-tube shortly. The surgeon said things looked great on the first series of xrays and has no concerns for the follow up xray.
Overall, Mason is becoming more and more stable and was kicked out of the PICU at noon. We have graduated to a "step down unit" which means the nurses have fewer patients to care for than on the regular pediatric ward, but more than the PICU nurses -- an intermediate level of care. What it means for us is another small step toward home.
Last night was a little rough because of pain management. We have had to walk a fine line between enough morphine to help with his surgical pain and not too much so that his breathing rate lowers too much, so much of the night we were behind the 8 ball so to speak. Whenever the pain got to be too much for him, he got quite agitated and his oxygen saturation would drop. So, we've been working hard to get ahead of the pain and I think we've turned a corner this afternoon. He is resting very comfortably at 2.5 liters of oxygen and saturating in the high 90s. According to the nurses, he should continue to have less pain over the next 12 hours or so and should eventually be managed by tylenol alone. Once that happens, we don't have to worry so much about his breathing with more medication. I'm eager for that time to come.
It is so comforting to know that he is making these slow gains and seems to have tolerated the surgery and intubation/extubation well. Our prayers and all of your thoughts and prayers seem to have been answered.
Please say an extra prayer tonight for our cousin Linda as she goes into surgery tomorrow for her lumpectomy and sentinal node test. Linda, we wish you all the best and pray that your sentinal node comes back negative!!! Rob, Brian, Austin, and Ava, we are also praying for you as you stand by Linda's side.
Here we are at Day 2 and Mason is doing well as far as the surgeon is concerned. He is very happy with the post-op course so far - said its almost "normal" - whatever that is. The g-tube site looks good, and a series of xrays this morning showed that the tube is in place where it should be and the stomach has no leaks. He just had a follow up xray to make sure that things were moving down his intestines. If all comes back, he should be able to start eating a little bit through the g-tube shortly. The surgeon said things looked great on the first series of xrays and has no concerns for the follow up xray.
Overall, Mason is becoming more and more stable and was kicked out of the PICU at noon. We have graduated to a "step down unit" which means the nurses have fewer patients to care for than on the regular pediatric ward, but more than the PICU nurses -- an intermediate level of care. What it means for us is another small step toward home.
Last night was a little rough because of pain management. We have had to walk a fine line between enough morphine to help with his surgical pain and not too much so that his breathing rate lowers too much, so much of the night we were behind the 8 ball so to speak. Whenever the pain got to be too much for him, he got quite agitated and his oxygen saturation would drop. So, we've been working hard to get ahead of the pain and I think we've turned a corner this afternoon. He is resting very comfortably at 2.5 liters of oxygen and saturating in the high 90s. According to the nurses, he should continue to have less pain over the next 12 hours or so and should eventually be managed by tylenol alone. Once that happens, we don't have to worry so much about his breathing with more medication. I'm eager for that time to come.
It is so comforting to know that he is making these slow gains and seems to have tolerated the surgery and intubation/extubation well. Our prayers and all of your thoughts and prayers seem to have been answered.
Please say an extra prayer tonight for our cousin Linda as she goes into surgery tomorrow for her lumpectomy and sentinal node test. Linda, we wish you all the best and pray that your sentinal node comes back negative!!! Rob, Brian, Austin, and Ava, we are also praying for you as you stand by Linda's side.
Tuesday, December 9, 2008
In the PICU
Mason made it through surgery well. The surgeon was happy with the surgery and feels the technical stuff went well. It took a bit of time to wean Mason off of the breathing tube (ventilator), but after a little bit of effort, Mason was extubated and breathing on his own with a nasal cannula (nose oxygen tube) and mask. The anesthesiologist told us that he didn't want to say he was surprised, but he was really pleased that Mason was able to come off of the breathing tube so quickly. He is doing fairly well, and continuing to wean down on his oxygen need. The nurses are helping to keep his surgical pain level under control with morphine and tylenol. He's not out of the woods yet, but hopefully, through the night his oxygen need will return to normal and his pain will continue to be under control.
Thank you to everyone for you continued prayers. We are so grateful that our little fighter continues his battle to recovery!
Thank you to everyone for you continued prayers. We are so grateful that our little fighter continues his battle to recovery!
Still in Surgery
We finally got Mason into surgery at 9:50 and he's still there. We got an update from the nurse taking care of him and found out that things are going well. They are expecting to be done within the hour, then it's off to either the recovery room or the ICU. Then the real challenge begins when they try to bring Mason off of the ventilator. We are hopeful that he will be able to come off easily, but prepared in case it is not easy or possible for a while. Please continue to pray that the surgery finishes up well and he can come off of the ventilator easily. I'll update as soon as I know more.
Our First Delay
Well, we expected it, and it came true. We are currently awaiting our delayed surgery. We got bumped back a bit because of an emergency surgery this morning, so no news yet. We expect that they will take Mason back around 9 or 9:30. I'll keep you posted.
Friday, December 5, 2008
Home, Sweet Home
Yes, we finally made it home! Mason has remained stable for the last couple of days, so the doctors felt comfortable in letting us go home for a few days. According to Mason's Staramama, he was so excited to be home that he just giggled any time he would catch her eye.
We've started putting out the Christmas decorations and plan on going to get a tree tomorrow. We thought it would be nice to celebrate the holidays for the short time we are home, and who knows, maybe we'll be home again before Christmas - in that case, it will be nice to come home to a decorated home.
I just read back over this and counted the word home 7 times. I think I might be a little excited to be here! I hope everyone has a great weekend (we plan to), and I'll update the blog once I have some information and things settle down after the surgery on Tuesday.
We've started putting out the Christmas decorations and plan on going to get a tree tomorrow. We thought it would be nice to celebrate the holidays for the short time we are home, and who knows, maybe we'll be home again before Christmas - in that case, it will be nice to come home to a decorated home.
I just read back over this and counted the word home 7 times. I think I might be a little excited to be here! I hope everyone has a great weekend (we plan to), and I'll update the blog once I have some information and things settle down after the surgery on Tuesday.
Thursday, December 4, 2008
One Step Closer
Mason held steady for another day today. He had one little episode, but overall stayed at 1.5 liters of oxygen today. Lest I jinx the situation, this dose of steroids seems to be helping to keep Mason stable and will hopefully carry us until Tuesday. The doctors and we decided that it wouldn't be wise to try another wean before surgery. We are going to leave well enough alone and let Mason take a break before surgery. So, this is where he will stay.
Mason had a great visit with his Staramama and Pomp-pomp today. He showed them his brand new trick - sitting up on his own for about 1/2 a minute. It is so great to watch him continue to develop his motor skills despite all of his breathing and eating challenges. He also continues to develop his social skills through all of this. All of the nurses who come in comment on how social how much of a flirt he is. We might be in for some good times with girls and friends when he's a teenager!
Mason had a great visit with his Staramama and Pomp-pomp today. He showed them his brand new trick - sitting up on his own for about 1/2 a minute. It is so great to watch him continue to develop his motor skills despite all of his breathing and eating challenges. He also continues to develop his social skills through all of this. All of the nurses who come in comment on how social how much of a flirt he is. We might be in for some good times with girls and friends when he's a teenager!
Wednesday, December 3, 2008
"Stay the Course"
That's the theme of progress toward the surgery for Mason. Bill ran into the surgeon this morning in the hallway and that's what he had to say -- Stay the Course. So, we are still on the schedule for Dec. 9th (next Tuesday) for the surgery. The surgeon also mentioned that it is likely going to be a rough road after surgery because of the steroids and Mason's very fragile lungs. We are getting ourselves prepared for this rough road and are praying daily that Mason gets strong enough to minimize the potential for complications after surgery.
Today was another status quo day for Mason. He's been up and down with his oxygen need and is now on 1.5 liters as he goes to sleep for the night. I think that's where he ended up last night as well, but I can't remember anymore. He seems to have tolerated his first day of weaning well and we continue to be hopeful for a good second day. We found out from the resident this morning that their plan was/is to do this one decrease in the steroid dose and then monitor Mason in the hospital for 48 hours after they started weaning. That means the earliest we will be going home is on Friday morning. When I asked if they would consider a 2nd wean if this one went well, she didn't know. They hadn't thought that far yet because he hasn't had a successful wean to this point. So, we'll just have to see what Friday morning brings. I am very thankful, though, that they are doing the wean while in the hospital. It is good for them to be able to chronical the changes and make sure that he will still be safe enough for the surgery.
Well, I need to mix up some milk and formula for the nurses to give Mason tonight, so I'd better get to it. Besides, I need some sleep, too.
Today was another status quo day for Mason. He's been up and down with his oxygen need and is now on 1.5 liters as he goes to sleep for the night. I think that's where he ended up last night as well, but I can't remember anymore. He seems to have tolerated his first day of weaning well and we continue to be hopeful for a good second day. We found out from the resident this morning that their plan was/is to do this one decrease in the steroid dose and then monitor Mason in the hospital for 48 hours after they started weaning. That means the earliest we will be going home is on Friday morning. When I asked if they would consider a 2nd wean if this one went well, she didn't know. They hadn't thought that far yet because he hasn't had a successful wean to this point. So, we'll just have to see what Friday morning brings. I am very thankful, though, that they are doing the wean while in the hospital. It is good for them to be able to chronical the changes and make sure that he will still be safe enough for the surgery.
Well, I need to mix up some milk and formula for the nurses to give Mason tonight, so I'd better get to it. Besides, I need some sleep, too.
Tuesday, December 2, 2008
One Small Step or One Giant Leap?
More gains today! Mason has improved quite a bit and is now needing about 1 liter of oxygen while awake and less than that when asleep! He is doing much better than even when we left the hospital the last time and was considered "stable." His carbon dioxide level came down as well (PCO2 was 75 today and 86 a couple of days ago). Overall, the news was good today.
So, you might be asking, why, then is Mason still in the hospital. Well, this time, unlike the other times, they are going to try to wean him down off the steroids a little bit and see what happens. The doctors are hoping that the increase in nebulizers/inhalers yesterday will provide the steroid level that Mason needs directly to his lungs instead of to his entire system. If this works, we will be able to wean down off of the steroids and he will be at less risk for the complications with surgery. We'll just have to see how it goes.
I also heard from the nurse that Mason got to hear Christmas Carolers for the first time today. He and Staramama were playing together when the carolers came by. Staramama sat him up in the crib and he was attentively listening. From what I understand, he really loved the singing. Its great that he's feeling better and can enjoy some of the holiday things.
So, you might be asking, why, then is Mason still in the hospital. Well, this time, unlike the other times, they are going to try to wean him down off the steroids a little bit and see what happens. The doctors are hoping that the increase in nebulizers/inhalers yesterday will provide the steroid level that Mason needs directly to his lungs instead of to his entire system. If this works, we will be able to wean down off of the steroids and he will be at less risk for the complications with surgery. We'll just have to see how it goes.
I also heard from the nurse that Mason got to hear Christmas Carolers for the first time today. He and Staramama were playing together when the carolers came by. Staramama sat him up in the crib and he was attentively listening. From what I understand, he really loved the singing. Its great that he's feeling better and can enjoy some of the holiday things.
Monday, December 1, 2008
Steps in the Right Direction
Once again, Mason took some steps in the right direction. For the most part, his oxygen need was down today. While sleeping or resting quietly, he's down to 1.5 liters and while awake is around 2 -2.25. He did have to go back up to 4 for a little bit when he was startled awake by a surgical resident who barreled into our room, but after about an hour was able to come down again.
So, it appears that the changes in medications have helped a little bit and we are continuing to make progress. Who knows, maybe we'll be looking at going home in the next day or so. We still haven't heard from the surgeon or Mason's primary pulmonologist, but unless we hear otherwise we'll count on surgery next Tuesday (a week from tomorrow). It seems so close, but still so far away. Hopefully the positive steps that have been taken will continue to bring us closer to where Mason will really start to improve again. We've spent so long on this slow downhill slide that I can't wait for things to start looking up for him and for us.
So, it appears that the changes in medications have helped a little bit and we are continuing to make progress. Who knows, maybe we'll be looking at going home in the next day or so. We still haven't heard from the surgeon or Mason's primary pulmonologist, but unless we hear otherwise we'll count on surgery next Tuesday (a week from tomorrow). It seems so close, but still so far away. Hopefully the positive steps that have been taken will continue to bring us closer to where Mason will really start to improve again. We've spent so long on this slow downhill slide that I can't wait for things to start looking up for him and for us.
Sunday, November 30, 2008
Pacing Ourselves
Mason had another low key day today - his oxygen need was up, it was down, and is ending up the day at 2.5 liters (the limit that was set last time we left the hospital). His mood is steadily improving and he is smiling more and more -- Daddy even got a few giggles as he tickled Mason's neck with his goatee and kisses.
We did see some changes in the routine today to possibly address the increased carbon dioxide that the lab showed and get him more stable in preparation for the surgery next week. So that Mason doesn't catch a bug while here in the hospital, all the providers coming in have to put on a gown and mask. It is quite inconvenient for them, but makes sure that they don't carry in something from another patient. We've also increased both the inhaled steroid and the diuretics in an effort to decrease the dependence on the oral steroids. So far we haven't been able to do that, but maybe this time, it will be different. The other change to Mason's medications is the addition of another inhaler. This is supposed to be a long-acting asthma type medication. We tried it a couple of times before he came in, but it may have been too late at that point so we didn't see any positive effects. Now that his system has improved some, maybe it will help.
The new round of doctors is on tomorrow, but most of them already know Mason or know about him (being in the same hospital 3 times in 2 months will do that). Hopefully there won't be any big surprises. As I'm writing this tonight, I think the plan is still for Mason to have surgery on Dec. 9th, but I don't know if we will stay here until then or go home and come back. I guess it all depends on how stable he gets and can stay. I'm hoping that he improves enough that we can do well for a few days at home and get some good rest before what will likely be a long hospital stay after surgery.
We did see some changes in the routine today to possibly address the increased carbon dioxide that the lab showed and get him more stable in preparation for the surgery next week. So that Mason doesn't catch a bug while here in the hospital, all the providers coming in have to put on a gown and mask. It is quite inconvenient for them, but makes sure that they don't carry in something from another patient. We've also increased both the inhaled steroid and the diuretics in an effort to decrease the dependence on the oral steroids. So far we haven't been able to do that, but maybe this time, it will be different. The other change to Mason's medications is the addition of another inhaler. This is supposed to be a long-acting asthma type medication. We tried it a couple of times before he came in, but it may have been too late at that point so we didn't see any positive effects. Now that his system has improved some, maybe it will help.
The new round of doctors is on tomorrow, but most of them already know Mason or know about him (being in the same hospital 3 times in 2 months will do that). Hopefully there won't be any big surprises. As I'm writing this tonight, I think the plan is still for Mason to have surgery on Dec. 9th, but I don't know if we will stay here until then or go home and come back. I guess it all depends on how stable he gets and can stay. I'm hoping that he improves enough that we can do well for a few days at home and get some good rest before what will likely be a long hospital stay after surgery.
Slow and Steady Wins the Race (hopefully!)
We may not be making big gains or rapid gains, but we are making progress.
Yesterday was a pretty low key day. Mason caught up on some sleep and weaned down on the oxygen a little bit. He is now getting the steroid every 12 hours and building up the level in his system. We were able to turn him down to 3.25 L around 4:30 or so and that's where he stayed until this morning. We could tell he was doing a little bit better because he would hold his oxygen saturations in the mid to high 90's (normal for people without lung disease is 99-100%) while he was awake. On Friday, he was in the high 80's to low 90's on 4 liters, so there is definitely some improvement!
Overnight he had a couple of rough patches with his saturations going down in the low 80's, but after rolling him onto his side and patting his butt (he loves this!), he was able to fall back asleep and saturate in the high 90's again. This morning, we turned him down once again, so he's needing 2.75 liters. He seems to be a little more comfortable with his breathing, too, and isn't working up a sweat while just resting.
The doctors are a little worried about the carbon dioxide level in his blood. One of his tests showed that he's retaining quite a bit of CO2. His PCO2 was at 80, but they don't know if that is where it has been or if it's recently elevated since he hasn't had the test since October (then his level was 60). It's entirely possible that the level has been creeping up since we left the hospital in early October and may even be down from Friday since his oxygen need is going down, but regardless it's too high so they'll be talking today with the lung doctor to figure out what to do about it. We'll just have to see.
Yesterday was a pretty low key day. Mason caught up on some sleep and weaned down on the oxygen a little bit. He is now getting the steroid every 12 hours and building up the level in his system. We were able to turn him down to 3.25 L around 4:30 or so and that's where he stayed until this morning. We could tell he was doing a little bit better because he would hold his oxygen saturations in the mid to high 90's (normal for people without lung disease is 99-100%) while he was awake. On Friday, he was in the high 80's to low 90's on 4 liters, so there is definitely some improvement!
Overnight he had a couple of rough patches with his saturations going down in the low 80's, but after rolling him onto his side and patting his butt (he loves this!), he was able to fall back asleep and saturate in the high 90's again. This morning, we turned him down once again, so he's needing 2.75 liters. He seems to be a little more comfortable with his breathing, too, and isn't working up a sweat while just resting.
The doctors are a little worried about the carbon dioxide level in his blood. One of his tests showed that he's retaining quite a bit of CO2. His PCO2 was at 80, but they don't know if that is where it has been or if it's recently elevated since he hasn't had the test since October (then his level was 60). It's entirely possible that the level has been creeping up since we left the hospital in early October and may even be down from Friday since his oxygen need is going down, but regardless it's too high so they'll be talking today with the lung doctor to figure out what to do about it. We'll just have to see.
Saturday, November 29, 2008
Boomerangs or Rubber Balls?
I can't figure out which is a better way to describe us. Either a boomerang (they keep "throwing us out" of the hospital and we keep coming back) or a rubber ball (we just keep bouncing back).
Yes, it's true, we are back in the hospital. Mason's oxygen need started to go up as soon as he started weaning off of the steroids in preparation for his surgery, and he surpassed our "limit" yesterday. Unfortunately, he needs the steroids to keep his oxygen needs down, but steroids also make healing quite a bit harder after surgery. So, we're sort of stuck between a rock and a hard place and it's not a decision we can make alone. Thankfully, Mason's providers are all wonderfully informed about his situation and are working together and with us to make the best decisions. The attending pediatrician will be talking to the surgeon over the weekend and our surgeon and a new attending pediatrician (they switch every Monday) will be talking to the pulmonologist on Monday.
Last night they found that he again had a lot of fluid on his lungs and was needing about 4 liters of oxygen (earlier this month we thought our limit of 2.5 liters was high....). So, they gave him a dose of Lasix (a heavy diuretic that made him pee off 1/4 of a pound of fluid) and re-started him on the steroids. This morning, he's still needing 4 liters, but appears to be a little happier and more playful - when he's not sleeping that is. The doctor said his lungs sound a little clearer, too.
We think we'll be here at least until Monday when all the doctors can talk to each other and Mason can hopefully have a chance get stable. We are hoping that over the next several hours to day or so we can start to wean down on the oxygen. We are also praying that whether surgery happens on Dec. 9th or sooner or later, that the steroids will give his lungs the strength they need to get through it, but not have too big of an impact on his healing.
We'll keep you posted....
Yes, it's true, we are back in the hospital. Mason's oxygen need started to go up as soon as he started weaning off of the steroids in preparation for his surgery, and he surpassed our "limit" yesterday. Unfortunately, he needs the steroids to keep his oxygen needs down, but steroids also make healing quite a bit harder after surgery. So, we're sort of stuck between a rock and a hard place and it's not a decision we can make alone. Thankfully, Mason's providers are all wonderfully informed about his situation and are working together and with us to make the best decisions. The attending pediatrician will be talking to the surgeon over the weekend and our surgeon and a new attending pediatrician (they switch every Monday) will be talking to the pulmonologist on Monday.
Last night they found that he again had a lot of fluid on his lungs and was needing about 4 liters of oxygen (earlier this month we thought our limit of 2.5 liters was high....). So, they gave him a dose of Lasix (a heavy diuretic that made him pee off 1/4 of a pound of fluid) and re-started him on the steroids. This morning, he's still needing 4 liters, but appears to be a little happier and more playful - when he's not sleeping that is. The doctor said his lungs sound a little clearer, too.
We think we'll be here at least until Monday when all the doctors can talk to each other and Mason can hopefully have a chance get stable. We are hoping that over the next several hours to day or so we can start to wean down on the oxygen. We are also praying that whether surgery happens on Dec. 9th or sooner or later, that the steroids will give his lungs the strength they need to get through it, but not have too big of an impact on his healing.
We'll keep you posted....
Friday, November 21, 2008
Happy 8 Month Birthday, Mason!
It hardly seems a month has passed since our last big update. Once again, this month was difficult. Mason's lungs and reflux have continued to be a challenge and we've had to make some difficult decisions about what to do about it. Despite our challenges, though, we take great joy in watching Mason giggle, smile, and do some "firsts."
Lungs/Heart: We tried a bunch of different things to help Mason's breathing at the beginning of this "month," but to no avail. Mason continued to have difficulty whenever off of the steroids, so he ended up going on a constant, low dose. This held him pretty steady until just after Halloween.
The best part of this month is that we got some real clarity around why Mason was having more difficulty with his breathing. We found out how interconnected all of his issues are when we did a swallowing study on Halloween. We found that Mason was in fact aspirating (slipping food into his lungs) if thin liquids went into his mouth or if he refluxed. We also saw quite clearly that this has a significant impact on his lungs. 3 days after the test, Mason's breathing became much worse and we made a trip back to the hospital. This time around, we stayed for 8 days, but accomplished a tremendous amount. We had a case conference to get all of his many providers on the same "page," we had some xrays done that show that Mason's lungs are overall improving with time, and we made some of those difficult decisions (I'll go into details a little later).
We also repeated the ultrasound of Mason's heart. Again, it showed that things are stable. Despite the worsening in breathing, his heart is holding steady.
Eating: We have become quite adept at the continuous tube feedings. We've learned how to manage all the extra tubes and lines and don't quite know what to do when holding a baby that doesn't have the extras. With the exception of the aspirations with reflux and the testing (minor details, I know), Mason's feedings have been a breeze. He is getting much bigger and even looks like a chunky little baby now.
So, now for the decision. After talking to the entire team and each other, we decided to go forward with surgery for Mason. It is a very scary prospect, but his lungs cannot get better if he doesn't have the surgery. The continued aspirations will end up harming his lungs more, and won't allow them to get better. Many have asked what the surgery entails, so here are the details:
Lungs/Heart: We tried a bunch of different things to help Mason's breathing at the beginning of this "month," but to no avail. Mason continued to have difficulty whenever off of the steroids, so he ended up going on a constant, low dose. This held him pretty steady until just after Halloween.
The best part of this month is that we got some real clarity around why Mason was having more difficulty with his breathing. We found out how interconnected all of his issues are when we did a swallowing study on Halloween. We found that Mason was in fact aspirating (slipping food into his lungs) if thin liquids went into his mouth or if he refluxed. We also saw quite clearly that this has a significant impact on his lungs. 3 days after the test, Mason's breathing became much worse and we made a trip back to the hospital. This time around, we stayed for 8 days, but accomplished a tremendous amount. We had a case conference to get all of his many providers on the same "page," we had some xrays done that show that Mason's lungs are overall improving with time, and we made some of those difficult decisions (I'll go into details a little later).
We also repeated the ultrasound of Mason's heart. Again, it showed that things are stable. Despite the worsening in breathing, his heart is holding steady.
Eating: We have become quite adept at the continuous tube feedings. We've learned how to manage all the extra tubes and lines and don't quite know what to do when holding a baby that doesn't have the extras. With the exception of the aspirations with reflux and the testing (minor details, I know), Mason's feedings have been a breeze. He is getting much bigger and even looks like a chunky little baby now.
So, now for the decision. After talking to the entire team and each other, we decided to go forward with surgery for Mason. It is a very scary prospect, but his lungs cannot get better if he doesn't have the surgery. The continued aspirations will end up harming his lungs more, and won't allow them to get better. Many have asked what the surgery entails, so here are the details:
- Insertion of a feeding tube straight into his stomach (g-tube)
- Wrapping the lining of the stomach around the esophogeal sphincter (where the stomach and throat meet) to create a "1 way valve." In other words, the food can go down, but it can't come back up.
This is a very common surgery (especially with preemies) with a very good success rate, and it will be done by the same surgeon who did Mason's hernia repair. The challenge for Mason is, as it always is, his lungs. Because it requires sedation and ventilation (too much risk for reflux as they inflate the belly with air during the surgery), we are taking a huge risk. The best case scenario is that Mason comes out of the sedation and off of the ventilator easily. The worst case is that it takes a very long time to come off of the ventilator. We just don't know which scenario will play out. So, we are set for surgery on December 9 (just 2 days short of 1 year since we found out that I didn't have enough amniotic fluid and was placed on bed rest). We are extremely nervous about the surgery and recovery. Please pray that all works out well.
Weight:
We don't have the percentile information, but we do know that Mason has gained weight at a very good rate. He is tolerating his feeding tube really well, and like I wrote above, becoming a chunk! He is racing through his 3-6 month clothing, and almost a perfect fit in his 6 month clothes.
As of today, Mason measures in at 14 lb. 5.3 oz, 25 inches long, and a head circumference of 17 inches.
Development:
Mason has his monthly visit with the physical therapist on Monday, so I'm not sure if he's still on track for his developmental milestones for his adjusted age (just 6 months from when he was supposed to be born). I do see Mason getting stronger, though. He is now able to roll from his stomach to his back (unless he gets too frustrated at being on his tummy even for a little bit), and is working on sitting without support. He smiles, giggles, and "talks" almost all of the time and loves reaching out for his toys. Our biggest challenge right now is avoiding watching TV. It seems no matter what position we have him in facing away from the TV, he can still contort his neck/body to find it and watch it. Cracks me up!
Thanks again for everyone's prayers and support! We couldn't get through this without all of you! Please say an extra prayer or 2 for us around December 9th.
Love,Christi, Bill, and Mason
Monday, November 10, 2008
We're HOME!!!!!
Bill and I figured we'd better pack our things up last night and load the car this morning. If we did that, then they'd say "go home" for sure. We just knew that Mason would agree that his mom and dad really needed to sleep in their own bed again. So, we took the chance, and sure enough at about 5:00 tonight, they let us come home.
Mason had a pretty good day in the hospital. He had a really great visit with his Staramama and his Great Grandma. He got to say good bye to all the tons of people coming in and out of his room all day and to the hospital that has been our home for the last week. I realize a week really isn't a long time, but since it's becoming a monthly occurrence and I didn't get home in that time, it seems like its longer.
So, we are all well equipped with a plan, with new medications, new equipment, and more oxygen. I'm sure tomorrow we will get a host of calls to set up follow up appointments, so we will be busy for the next month. As of now, the plan is to have the surgery on December 9th. Until then, we need to keep Mason "healthy" and stable, and try not to worry too much about what's to come.
I am so excited to get into my own soft bed that I'm going to cut this one short. Thanks to all of you who have continued to keep us in your thoughts and prayers. We appreciate every one of them!
Mason had a pretty good day in the hospital. He had a really great visit with his Staramama and his Great Grandma. He got to say good bye to all the tons of people coming in and out of his room all day and to the hospital that has been our home for the last week. I realize a week really isn't a long time, but since it's becoming a monthly occurrence and I didn't get home in that time, it seems like its longer.
So, we are all well equipped with a plan, with new medications, new equipment, and more oxygen. I'm sure tomorrow we will get a host of calls to set up follow up appointments, so we will be busy for the next month. As of now, the plan is to have the surgery on December 9th. Until then, we need to keep Mason "healthy" and stable, and try not to worry too much about what's to come.
I am so excited to get into my own soft bed that I'm going to cut this one short. Thanks to all of you who have continued to keep us in your thoughts and prayers. We appreciate every one of them!
Sunday, November 9, 2008
On Second Thought
We were all packed up and ready to go home this morning and Mason decided it wasn't time yet. He had what could be called an "episode." When he woke up this morning, he did his usual coughing/trying to get out the junk from the night. The only difference was that his oxygen level dropped quite a bit and would not come up easily. We ended up giving him "blow by" oxygen (another big tube that just blows oxygen at him) and turned up the oxygen through his nose from 1.25 liters to 2.5 liters. Finally, his oxygen saturation came up and has been getting better throughout the day.
Thankfully, the pulmonary resident came in right around the same time and was able to see him/give suggestions right away. The doctors all listened to his lungs and thought that maybe his left lung was a little "chunky" - meaning that there may have been some gunk in there. So, they ordered a chest x-ray, asked the respiratory therapist to do some "chest therapy" on him (using a small, soft cup type thing to tap his chest repeatedly to loosen up the gunk), and decided to keep him another day to make sure that was what was going on.
Good News: Soon after the chest x-ray, Mason did cough up a good bunch of gunk, and started to saturate much better. Over the next couple of hours, after the chest therapy and coughing up a little more gunk, we were able to turn his oxygen back down to 1.5 liters and he's been there ever since. He has been playing and sleeping off and on and doesn't seem to be any worse for the wear.
Even Better News: His chest x-ray looks even better than Tuesday's. He looks like he is exchanging air a little better and definitely has more dark spots (this is a really good thing!).
So, we are hopeful that we can return home tomorrow, but very thankful that we were here when he had this "episode."
Thankfully, the pulmonary resident came in right around the same time and was able to see him/give suggestions right away. The doctors all listened to his lungs and thought that maybe his left lung was a little "chunky" - meaning that there may have been some gunk in there. So, they ordered a chest x-ray, asked the respiratory therapist to do some "chest therapy" on him (using a small, soft cup type thing to tap his chest repeatedly to loosen up the gunk), and decided to keep him another day to make sure that was what was going on.
Good News: Soon after the chest x-ray, Mason did cough up a good bunch of gunk, and started to saturate much better. Over the next couple of hours, after the chest therapy and coughing up a little more gunk, we were able to turn his oxygen back down to 1.5 liters and he's been there ever since. He has been playing and sleeping off and on and doesn't seem to be any worse for the wear.
Even Better News: His chest x-ray looks even better than Tuesday's. He looks like he is exchanging air a little better and definitely has more dark spots (this is a really good thing!).
So, we are hopeful that we can return home tomorrow, but very thankful that we were here when he had this "episode."
Saturday, November 8, 2008
No News is Good News
Mason is doing fairly well 1 day after having his "2 month" immunizations. He is a little more fussy when he gets tired, but generally still happy. He has needed a little bit more oxygen today (wasn't really able to get down to 1 liter), but doesn't appear to be having any kind of a bad reaction. Later in the evening, we did find a red spot where he had 1 of his immunizations, but the doctor looked at it and was pleased. Apparently, this means that his immune system is reacting to the shot which is what it is supposed to do. They will continue to monitor through the night to make sure he still does ok, and barring anything new, we will likely be headed home by late morning.
Mason is needing about the same amount of oxygen as he was at when we came into the hospital, but hopefully over time, the effects of the aspiration last week and the effects of the possible cold he had will wear off and his oxygen need will come down over time. If not, hopefully he will remain stable and be ready for surgery in December.
Mason is needing about the same amount of oxygen as he was at when we came into the hospital, but hopefully over time, the effects of the aspiration last week and the effects of the possible cold he had will wear off and his oxygen need will come down over time. If not, hopefully he will remain stable and be ready for surgery in December.
Friday, November 7, 2008
Shots All Around!
Here we are at Friday and we could probably use a shot or 2, but the title actually refers to Mason's immunizations. We put off the immunizations in the NICU because we had seen a couple of other babies having respiratory reactions to their shots. Since Mason already has a compromised respiratory system, we wanted him to be stronger before getting the shots. So, now that he is about 2.5 times bigger, and in the hospital where he can be observed for bad reactions, today was the day. He got his DTaP, his 2nd Hep. B, his Hib, pneumococcal, and 1st flu shot. For those of you who don't have kids or don't remember what everything means, the DTaP is diptheria, tetanus, and pertussis or whooping cough; the Hep B is for hepatitis B; and the Hib and pneumococcal are for bacteria that can cause meningitis. Bill said the nurses were great about doing the shots all at once (I guess they triple teamed him) to avoid prolonging the experience. So, we've got it behind us now, and so far, so good: no bad reactions. In fact, he and the attending doctor were giggling at each other quite a bit this evening. I'm glad to see he always returns to his happy, giggly, smiley self. We will be here in the hospital for a couple more days, just to make sure his lungs stay stable after the shots.
Otherwise, Mason's doing about the same today, maybe even slightly better. He hasn't had to go up to 2 liters of oxygen today, so although its a small step, it is a step in the right direction. We will take all the small steps we can get!
Otherwise, Mason's doing about the same today, maybe even slightly better. He hasn't had to go up to 2 liters of oxygen today, so although its a small step, it is a step in the right direction. We will take all the small steps we can get!
Thursday, November 6, 2008
Finally, A Plan
We had our care conference today and had a very good discussion with the surgeon, lung doctor, Mason's pediatrician, the hospital team, and the speech pathologist.
The lung doctor talked a lot about the unknowns. We don't know how much Mason's lungs have improved, we don't know how much they will improve, we don't know if they will improve, and we don't know exactly what the course of treatment should be. Mason continues to be "different" from other kids because of how his lungs came to have problems, not the type of problems his lungs have. He continues to march to his own drum because there aren't a lot of kids out there who survived the minimal amniotic fluid that he had while in the womb. So, we have to make our best guesses about treatment based on what they have learned from kids with other types of lung problems. What he does know is that Mason has "very significant" lung disease and will take a very long time to get better (if he does get better). When I asked what a "very long time" was to him, he mentioned years. He expects Mason will need oxygen for at least another year or so. While this is not fantastic news, it is really good to know so that we can set our expectations around it. We can expect ups and downs, but real change will take a lot longer.
The surgeon talked about the reasons for surgery, what happens in the surgery, and what to expect for complications (should they happen). Both he and the lung doctor were very clear about the outcome of the surgery: it will not make Mason's lungs better. It will however, help to keep him safe while we wait for his body to grow and his lungs hopefully get better with that growth. So, the burning question from folks is why do the surgery. What we have come to understand is that the potential for his lungs to get worse is very high; when he refluxes and aspirates, his lungs will get much worse. He needs the surgery to help prevent the potential for getting worse.
We also talked about what will happen after surgery. Each of the providers was pretty sure that it will take several months for Mason to return to baseline after surgery because of his lung condition. We are hopeful that he won't need to be in the hospital for too long, but regardless of where he is, he will have a higher oxygen need and not be able to eat by mouth for quite some time.
So, the bottom line is that everyone agrees that the surgery for reflux and a g-tube (feeding tube directly into the stomach) is the way to go. The surgeon proposed that we go 4-6 weeks of being "stable" off of steroids before doing the surgery. This will give his lungs the best chance for being as strong as they can be before the trauma of the surgery. If something worsens before then, we will move up our timeline. Which leads me to what are we doing now.....
We are changing Mason's anti-reflux medication which may help temporarily buy us some time until we get to the surgery. We are going to repeat the heart ultrasound to make sure that Mason's heart is still stable. And, we are going to move forward with his immunizations to keep him safe from all of the nasty stuff that could come his way. All of these things will be done before we go home to make sure that he responds well to them and doesn't have any bad reactions.
At the care conference, we also talked about some parameters/guidelines for Mason's oxygen needs to "qualify" for discharge and to try to prevent coming back in to the hospital. The pulmonologist assured us that it is no longer dangerous to give Mason more oxygen up to 2.5 liters/minute. When we left he NICU, our limit was 1 liter and he has been exceeding that regularly in the last month. We have been fearful that increasing beyond 1 liter was putting him at risk, but are encouraged to know that more oxygen is not going to be dangerous for his lungs anymore. So, we have a little more flexibility with what is safe at home. Our pediatrician was also given some more tools to help us should Mason's need for oxygen go up a little more.
All in all, it was a very productive care conference. We, and all of Mason's providers are more aware of the entire picture and how all the moving parts fit together. We are confident that he has a good team of doctors who care for him and are happy to work with us for the best possible outcome.
The lung doctor talked a lot about the unknowns. We don't know how much Mason's lungs have improved, we don't know how much they will improve, we don't know if they will improve, and we don't know exactly what the course of treatment should be. Mason continues to be "different" from other kids because of how his lungs came to have problems, not the type of problems his lungs have. He continues to march to his own drum because there aren't a lot of kids out there who survived the minimal amniotic fluid that he had while in the womb. So, we have to make our best guesses about treatment based on what they have learned from kids with other types of lung problems. What he does know is that Mason has "very significant" lung disease and will take a very long time to get better (if he does get better). When I asked what a "very long time" was to him, he mentioned years. He expects Mason will need oxygen for at least another year or so. While this is not fantastic news, it is really good to know so that we can set our expectations around it. We can expect ups and downs, but real change will take a lot longer.
The surgeon talked about the reasons for surgery, what happens in the surgery, and what to expect for complications (should they happen). Both he and the lung doctor were very clear about the outcome of the surgery: it will not make Mason's lungs better. It will however, help to keep him safe while we wait for his body to grow and his lungs hopefully get better with that growth. So, the burning question from folks is why do the surgery. What we have come to understand is that the potential for his lungs to get worse is very high; when he refluxes and aspirates, his lungs will get much worse. He needs the surgery to help prevent the potential for getting worse.
We also talked about what will happen after surgery. Each of the providers was pretty sure that it will take several months for Mason to return to baseline after surgery because of his lung condition. We are hopeful that he won't need to be in the hospital for too long, but regardless of where he is, he will have a higher oxygen need and not be able to eat by mouth for quite some time.
So, the bottom line is that everyone agrees that the surgery for reflux and a g-tube (feeding tube directly into the stomach) is the way to go. The surgeon proposed that we go 4-6 weeks of being "stable" off of steroids before doing the surgery. This will give his lungs the best chance for being as strong as they can be before the trauma of the surgery. If something worsens before then, we will move up our timeline. Which leads me to what are we doing now.....
We are changing Mason's anti-reflux medication which may help temporarily buy us some time until we get to the surgery. We are going to repeat the heart ultrasound to make sure that Mason's heart is still stable. And, we are going to move forward with his immunizations to keep him safe from all of the nasty stuff that could come his way. All of these things will be done before we go home to make sure that he responds well to them and doesn't have any bad reactions.
At the care conference, we also talked about some parameters/guidelines for Mason's oxygen needs to "qualify" for discharge and to try to prevent coming back in to the hospital. The pulmonologist assured us that it is no longer dangerous to give Mason more oxygen up to 2.5 liters/minute. When we left he NICU, our limit was 1 liter and he has been exceeding that regularly in the last month. We have been fearful that increasing beyond 1 liter was putting him at risk, but are encouraged to know that more oxygen is not going to be dangerous for his lungs anymore. So, we have a little more flexibility with what is safe at home. Our pediatrician was also given some more tools to help us should Mason's need for oxygen go up a little more.
All in all, it was a very productive care conference. We, and all of Mason's providers are more aware of the entire picture and how all the moving parts fit together. We are confident that he has a good team of doctors who care for him and are happy to work with us for the best possible outcome.
Just Another Day at the Hospital
We made a little bit of progress today. Well, I should say Mason did. His oxygen need is fluctuating a little bit more today - at times he is down to 1 liter (still high for him) and at times it is back up to 1.75 liters. I call this progress because before last night, he was needing 1.75 liters all of the time. They never did do the viral test, but felt that it was not really needed as a virus was not a likely answer. We did get more information about the plan. Seems that all are in agreement that the surgery needs to happen, we just need to figure out what the best timing is. We will be having our care conference with Mason's GI doctor, lung doctor, pediatrician, and hospital team tomorrow and will likely have some decisions made. We have a mile long list of questions and concerns to share with them and hopefully will get everything addressed before long.
For now, we'll just continue to wait and see. Feels a little like all those weeks Mason and I spent in the hospital before he was born.......
For now, we'll just continue to wait and see. Feels a little like all those weeks Mason and I spent in the hospital before he was born.......
Tuesday, November 4, 2008
Hurry Up and Wait
Today was a day that can best be described as "hurry up and wait." We started the day with Mason grunting his way from asleep to awake. When he does this, his oxygen need typically goes up, and today was no exception. Before long, he was up to 2 liters of oxygen into his nose and low oxygen saturations. Both Bill and I were quite frustrated since nothing had changed in the plan and we could have continued to do this at home. Shortly after I dragged myself off to work, though, Bill and the doctors made some decisions. The plan for the day was to give Mason another dose of Lasix (diuretic), change from using an inhaler for one of his steroids to a nebulizer (basically a mist blown into his face), test for viruses, re-place the feeding tube, and have a care conference. Then came the waiting. By 12:30 when I came back, none of those things had been done. So, again we waited. We found out much later (about 4:00) that they wanted to again talk to us about each of those things, but wanted to have enough time to devote to the whole conversation. So, we waited. Finally, about 5:00 or so, some of the things happened (Lasix and nebulizer) and now Mason is feeling much better. Tomorrow they'll do the test for viruses, they found out they don't have to re-place the feeding tube, and the care conference is still in the works.
The good news: The lung doctor came by today and had good news to report. The x-ray showed that Mason's lungs look like they are moving air better than before. So, they are growing/developing as well as they can.
The bad news: The running theory of why we are having these setbacks continues to be the aspirations (food/stomach juices slipping into the lungs because of reflux). So, despite the lungs getting better, the aspirations are potentially hindering the improvement.
The bottom line: So, it's getting to be decision time. Hopefully Thursday afternoon we will be having the care conference after all. After talking to all of Mason's providers at once, getting all risks and benefits on the table, and voicing our concerns, very likely we will agree to the surgery (both the feeding tube into the stomach and the reflux sugery - see the 7 month update for details). This is a very scary prospect for us, but potentially our only option for lung improvement.
For now, though, Mason is feeling much better and we will likely be able to decrease the oxygen over the next day or so. We'll keep you posted.
P.S. Joey, you are in our prayers!
The good news: The lung doctor came by today and had good news to report. The x-ray showed that Mason's lungs look like they are moving air better than before. So, they are growing/developing as well as they can.
The bad news: The running theory of why we are having these setbacks continues to be the aspirations (food/stomach juices slipping into the lungs because of reflux). So, despite the lungs getting better, the aspirations are potentially hindering the improvement.
The bottom line: So, it's getting to be decision time. Hopefully Thursday afternoon we will be having the care conference after all. After talking to all of Mason's providers at once, getting all risks and benefits on the table, and voicing our concerns, very likely we will agree to the surgery (both the feeding tube into the stomach and the reflux sugery - see the 7 month update for details). This is a very scary prospect for us, but potentially our only option for lung improvement.
For now, though, Mason is feeling much better and we will likely be able to decrease the oxygen over the next day or so. We'll keep you posted.
P.S. Joey, you are in our prayers!
Monday, November 3, 2008
We're Baaack!
Over the past several days, Mason's oxygen need has steadily crept up. On Friday, he was needing 3/4 to 1 liter, Saturday it was pretty much 1 liter, and yesterday it was mostly 1 liter, but a few creeps up to 1.5 liters. Then last night (another rough night for sleep) we had to turn him up to 1.5 liters for much of the night. Following the instructions from our pediatrician, we called and talked to the on-call lung doctor. After a brief run down of the last few days, he agreed that we should come to the hospital. This time, though, we bypassed the ER and were admitted straight to a room, almost as if it was a planned admission. So, we find ourselves back in the children's hospital where our nurse who worked with Mason for 1 day last time remembered us and has been wonderfully helpful.
When we got here, Mason started smiling and giggling as if he was in a familiar, friendly place. For this we were thankful as having him happy makes the hard stuff bearable. Throughout the day, though, he hasn't had much sleep and hasn't been able to have food pending confirmation of the feeding tube placement, so he's become a little more crabby. Hopefully tomorrow will see another change for the better as we continue to fit all of the pieces of the puzzle together to figure out why Mason is having more trouble with his breathing.
When we got here, Mason started smiling and giggling as if he was in a familiar, friendly place. For this we were thankful as having him happy makes the hard stuff bearable. Throughout the day, though, he hasn't had much sleep and hasn't been able to have food pending confirmation of the feeding tube placement, so he's become a little more crabby. Hopefully tomorrow will see another change for the better as we continue to fit all of the pieces of the puzzle together to figure out why Mason is having more trouble with his breathing.
Friday, October 31, 2008
Some things are just too hard to swallow
One of the days we've been waiting for has arrived. We finally have some definitive information about whether or not Mason is aspirating (slipping food into his lungs when he eats or when he refluxes). He had a swallowing study with a speech pathologist today where he tried thin liquids, thick liquids, and some baby food. While he did pretty well with the thicker stuff, he did end up slipping some food into his lungs with the thin stuff. At first, he was a champ with the bottle. He began eating like he used to in the NICU without any refusal. However, after aspirating a couple of times, he choked a little and decided that he didn't want to eat any more. The good news is that once he realizes that the food is going down the wrong pipe, he does what he can to stop it (refusing to eat), the bad news is that he doesn't catch it right away, so food gets into his lungs.
Despite the outcome not being what we had hoped, this is really good information to have as we move forward in trying to figure out what to do about Mason's lungs and reflux. Since the thinner liquids slip into his lungs, it's a pretty good bet that when he does reflux, some of the food that comes up goes into his lungs. This may also be contributing to the difficulty he's been having lately with his breathing. So, the GI doctor, the speech pathologist, and the lung doctor are going to chat on Tuesday when we have an appointment with the lung doctor and we will determine if we should go ahead with the reflux surgery.
Looking on the brighter side, Mason does not aspirate with thicker foods. So, when we do go back to feeding him by mouth (after they get the reflux stuff figured out), we can be fairly certain that he will be safe eating. It will have to be thicker (baby food or thickened milk), but he will probably be able to eat it and not have to have a tube for feedings. We will be so happy to get rid of the feeding tubes!!!
Despite the outcome not being what we had hoped, this is really good information to have as we move forward in trying to figure out what to do about Mason's lungs and reflux. Since the thinner liquids slip into his lungs, it's a pretty good bet that when he does reflux, some of the food that comes up goes into his lungs. This may also be contributing to the difficulty he's been having lately with his breathing. So, the GI doctor, the speech pathologist, and the lung doctor are going to chat on Tuesday when we have an appointment with the lung doctor and we will determine if we should go ahead with the reflux surgery.
Looking on the brighter side, Mason does not aspirate with thicker foods. So, when we do go back to feeding him by mouth (after they get the reflux stuff figured out), we can be fairly certain that he will be safe eating. It will have to be thicker (baby food or thickened milk), but he will probably be able to eat it and not have to have a tube for feedings. We will be so happy to get rid of the feeding tubes!!!
Sunday, October 26, 2008
Comments and Update
After posting the 7 month update, I found out that some people who wanted to comment couldn't. So after checking the settings, I've changed some things. The ability to publish comments should be open to everyone now. Please feel free to make a comment whenever it suits your fancy. We love hearing from folks.
So far things have stabilized since starting our 3rd round of steroids last week. Mason is needing 3/4 to 1 liter of oxygen most of the time. He still isn't quite as happy go lucky as he was when we left the hospital a few weeks ago, but at least things are stable. We got our authorization from our insurance for the swallow study, so we are going to try to get that done this week. It will be nice to finally, once and for all, determine if Mason's reflux is contributing to this so that we can make some decisions.
Mason continues to get stronger with his motor skills. He's rolled over from his stomach (almost intentionally) a few times when he's not quite so mad about being on his stomach; he's got the hang of rolling from his back to either side; and he has sat without support from us a couple times if we've helped him prop himself on his hands just right. I am amazed at his resilience. Mason continues to do all the "normal" baby things while struggling so hard to breathe. I can learn a lot from his strength!
So far things have stabilized since starting our 3rd round of steroids last week. Mason is needing 3/4 to 1 liter of oxygen most of the time. He still isn't quite as happy go lucky as he was when we left the hospital a few weeks ago, but at least things are stable. We got our authorization from our insurance for the swallow study, so we are going to try to get that done this week. It will be nice to finally, once and for all, determine if Mason's reflux is contributing to this so that we can make some decisions.
Mason continues to get stronger with his motor skills. He's rolled over from his stomach (almost intentionally) a few times when he's not quite so mad about being on his stomach; he's got the hang of rolling from his back to either side; and he has sat without support from us a couple times if we've helped him prop himself on his hands just right. I am amazed at his resilience. Mason continues to do all the "normal" baby things while struggling so hard to breathe. I can learn a lot from his strength!
Tuesday, October 21, 2008
Happy 7 Month Birthday, Mason!
I can't believe the first half of Mason's first year is behind us. I'm reminded of the first year of marriage. There are ups, there are downs, and its worth all of the hard work in the end. As many of you have read in the recent blogs, this has been a tough month for us - perhaps more difficult than any since we were in the NICU. Mason has had a lot more difficulty with his lungs this month, but continues to be a happy boy most of the time, and continues to light up our lives with his infectious grins and giggles.
Lungs/Heart:
I'm going to start with the lungs and heart for this month's update. Since most of our adventures this month started because of Mason's breathing, it seems appropriate. On the 6 month update, I wrote that we had just found Mason's lungs weren't exchanging the oxygen and carbon dioxide as they should. We increased the dosage of his diuretics in hopes that would make it easier for him to breathe. Unfortunately, the effects were not dramatic and over the next week, his oxygen need continued to rise. So, on the 2nd of October, we took him in and he was admitted to the local children's hospital. He stayed there for a week while the med students, residents, and attending physicians all worked to relieve his symptoms, help him breathe easier, and find out why his oxygen needs were changing/worsening.
The doctors had 4 theories as to why Mason was having increasing difficulty with his breathing. They couldn't (and still can't) exclude any of them, so we're trying to continue to investigate so that we treat the correct one:
Eating:
So, the tube feedings continue. For the first couple of weeks of the month, before the hospitalization, Mason continued to have difficulty with the tube and was puking it out 1-2 times per day. Yes, that means we were having to put it back in 1-2 times per day. Poor little guy! I can't imagine how traumatic that was for him, though I know how traumatic it was for Bill and me. So far, with a 3 day exception, now that the tube has been in the intestine, it has been much more successful for Mason. He has been able to tolerate all of his feedings very well and keeps the tube in almost all of the time. The 3 day exception happened last week. First, he hooked his little sneaky finger on the tube and pulled it out. Then, we couldn't get it all the way into the intestine, so we had to put it in again. Then, we think it moved back into the stomach because Mason ended up puking it out the 3rd morning. Since it was put back in a 3rd time, though, he's been able to keep it down.
Weight:
Lungs/Heart:
I'm going to start with the lungs and heart for this month's update. Since most of our adventures this month started because of Mason's breathing, it seems appropriate. On the 6 month update, I wrote that we had just found Mason's lungs weren't exchanging the oxygen and carbon dioxide as they should. We increased the dosage of his diuretics in hopes that would make it easier for him to breathe. Unfortunately, the effects were not dramatic and over the next week, his oxygen need continued to rise. So, on the 2nd of October, we took him in and he was admitted to the local children's hospital. He stayed there for a week while the med students, residents, and attending physicians all worked to relieve his symptoms, help him breathe easier, and find out why his oxygen needs were changing/worsening.
The doctors had 4 theories as to why Mason was having increasing difficulty with his breathing. They couldn't (and still can't) exclude any of them, so we're trying to continue to investigate so that we treat the correct one:
- Reflux from the feeding tube was causing a little bit of food to slip into the lungs and causing problems there.
- Dosage of diuretics still wasn't high enough for his weight so he wasn't getting rid of enough fluids.
- The increase in quantity of food over the previous couple of weeks had been too much for his system and he wasn't able to process it as fast as it was coming in.
- He had a cold, flu, or some other virus.
They pretty much ruled out #4 with some tests, but couldn't prove that the other 3 had a role or didn't have a role in the worsening. So, they took steps to address all 3. They gave him a couple of doses of lasix (diuretic) to get fluid off of his lungs, a 5 day round of prednisone (steroid) to help strengthen his lungs and advanced his feeding tube so that it went through his nose to his small intestine to help prevent his reflux. They also slowed the intake of food way down and changed his feedings to be continuous. In other words, he is hooked up to the pump for 20 hours every day and has 4 hours of rest. About a day after all of this was done, he started breathing much easier, had no more puking, and was so much more playful. He started smiling just to get a reaction out of us. It was fantastic!!
Unfortunately, shortly after leaving the hospital the effects of the steroids did wear off and Mason's breathing started to become more difficult again. So, back to the pediatrician we went and Mason was re-started on the steroids. At the same time, he also caught his first cold. Thankfully, with the extra steroidal help to his lungs, it wasn't as significant of an event as it could have been, and we didn't have to re-admit him to the hospital. We are still in a wait and see pattern right now. Now that Mason has finished his 2nd course of steroids, the cold symptoms are coming back, but we are watching closely. Our pediatrician is wonderful and following up with the heart doctor, the lung doctor, and keeping on top of things with us. We are so grateful for everything he does!
As far as the heart goes, while in the hospital, Mason had a repeat of the echocardiogram (ultrasound of his heart). Thankfully, it doesn't show any worsening of the stress on the right side of his heart, but it is not better either. It is possible that this is also playing a role in Mason's increased need for oxygen, but difficult to determine when the tests don't show any change. This remains to be determined.
As far as the heart goes, while in the hospital, Mason had a repeat of the echocardiogram (ultrasound of his heart). Thankfully, it doesn't show any worsening of the stress on the right side of his heart, but it is not better either. It is possible that this is also playing a role in Mason's increased need for oxygen, but difficult to determine when the tests don't show any change. This remains to be determined.
Eating:
So, the tube feedings continue. For the first couple of weeks of the month, before the hospitalization, Mason continued to have difficulty with the tube and was puking it out 1-2 times per day. Yes, that means we were having to put it back in 1-2 times per day. Poor little guy! I can't imagine how traumatic that was for him, though I know how traumatic it was for Bill and me. So far, with a 3 day exception, now that the tube has been in the intestine, it has been much more successful for Mason. He has been able to tolerate all of his feedings very well and keeps the tube in almost all of the time. The 3 day exception happened last week. First, he hooked his little sneaky finger on the tube and pulled it out. Then, we couldn't get it all the way into the intestine, so we had to put it in again. Then, we think it moved back into the stomach because Mason ended up puking it out the 3rd morning. Since it was put back in a 3rd time, though, he's been able to keep it down.
While in the hospital, the general feeling was the the reflux was the most likely reason for the increased oxygen need. So we started talking more seriously about the surgery. We know the reflux is there, what we don't know is if the food is sneaking into his lungs. One of the residents was in our room at the hospital when Mason puked and commented on how well he protected his airway. This is a really good sign, but he may not be good enough to protect the lungs all the time (especially if he's lying on his back as he so often is). So, we talk more about the surgery. The surgery we are talking about has 2 parts.
- Insertion of a feeding tube straight into his stomach (g-tube)
- Wrapping the lining of the stomach around the esophogeal sphincter (where the stomach and throat meet) to create a "1 way valve." In other words, the food can go down, but it can't come back up.
This is a very common surgery (especially with preemies) with a very good success rate, and it can be done by the same surgeon who did Mason's hernia repair. The challenge for Mason is, as it always is, his lungs. Because it requires sedation and ventilation (too much risk for reflux as they inflate the belly with air during the surgery), we are taking a huge risk. The best case scenario is that Mason comes out of the sedation and off of the ventilator easily. The worst case is that it takes a very long time to come off of the ventilator. We just don't know which scenario will play out. It might be that we don't have a real choice. If the reflux is causing the worsening of his breathing/oxygen need, we risk lung damage if he doesn't have the surgery.
We returned to see the GI doctor today to discuss our options at this point. She is not convinced that the reflux is the true contributor to the increasing oxygen need since his lungs have continued to have problems since the tube was put into the intestine. So, we are going to do more tests. Mason is scheduled to have another swallowing study in a couple of weeks to see if he does get food into his lungs when he eats or when he refluxes. This will help us to determine whether or not the reflux is really the culprit. If he doesn't get the food into his lungs, chances are there isn't a need for the "1 way valve" part of the surgery. We will just have to see.
Weight:
Finally, some good news! Mason has continued to gain weight through all of this and is averaging 1/2 to 1 oz per day. His length and his head circumference have improved as well. He is still well below where he should be for his adjusted age (5 months) in weight and length, but he is gaining by leaps and bounds!
We hit another major milestone with Mason's weight. At the GI doctor's appointment today, he measured in at 12 lb 1.3 oz, 23.5 inches long, and a head circumference of 16.5 inches. I am amazed at how big he is getting, but thankful (in 1 respect) that he stayed small for so long -- he got to wear some really cute newborn and 0-3 month clothes for a really long time!! He is finally starting to fit into some of his 3-6 month clothes and we have some really cute Halloween outfits. He will be the best dressed kid in the neighborhood!
Development:
Mason had his monthly visit with the physical therapist last week and he is still on track with most of his developmental milestones for his adjusted age (just 5 months from when he was supposed to be born). He has caught up a little bit on the milestones that require a lot of muscle endurance (head control and posture support), and we attribute that to his feeling better and being able to concentrate on things other than breathing for a while. The PT continues to be very encouraging and says she does not see any neurological involvement (i.e. no evidence of cerebral palsy at this point). Mason is getting stronger and is able to sit up with less support, prop himself on his hands when doing a modified version of "tummy time." His endurance is improved quite a bit, too. He smiles and "talks" almost all of the time and loves reaching out for his toys. He loves sitting and watching just about anything and is very attentive to what's going on in the room. He also loves to "dance" and giggles quite a bit when we help him to shake his thang!
Return to Work:
The transition to work has been difficult over the last month. It is hard to be away when so much is going on with my little guy. It is reassuring to know that Bill is there and takes care of Mason's every need (and a lot of wants, too, I'm happy to say!). The folks at work have been wonderful and so supportive. I can be with Mason when he needs me and at work when he doesn't. I am so thankful to have such a flexible and supportive work group.
Thanks again for everyone's prayers and support! We couldn't get through this without all of you!
Love,
Christi, Bill, and Mason
Christi, Bill, and Mason
Thursday, October 16, 2008
3rd Time's a Charm and Playing Catch Up
Unfortunately, the feeding tube must not have stayed in Mason's small intestine after the 2nd ER visit, because right after getting his mid day meds yesterday, Mason threw up and his tube came out once again. So Bill took him in to the doctor's office (thank Heaven for this time being during business hours!), re-placed the tube, and confirmed that it was in the intestine with yet another xray. Poor little guy is going to glow pretty soon! So far, today, the tube has stayed in, no puking, and we've had a very talkative, happy baby. Let's hope this one is going to hold!
Because of yesterday's adventure with the feeding tube, we had to reschedule our PT visit for today. We had a very good visit with our wonderful PT. Mason has made up some time with his milestones that require strength and endurance and continues to be on track with his other milestones. We also got some good information on ways to help him catch up and keep him moving forward. We are so excited that he's keeping up as well as he is given all he's been through. It is nice to have some real positives!
Because of yesterday's adventure with the feeding tube, we had to reschedule our PT visit for today. We had a very good visit with our wonderful PT. Mason has made up some time with his milestones that require strength and endurance and continues to be on track with his other milestones. We also got some good information on ways to help him catch up and keep him moving forward. We are so excited that he's keeping up as well as he is given all he's been through. It is nice to have some real positives!
Tuesday, October 14, 2008
ER - Take 2
After a few short hours of sleep for all of us, we were up and getting ready for our day. Bill checked to see if there was food in Mason's stomach, and sure enough there was - the feeding tube must not have made its way down to the intestine. So, off to the children's hospital we went. Thankfully, after just a couple of short hours, we placed a new tube and had xray confirmation that it is in the intestine. We got home and Mason pretty much passed out. He played with my mom for about 10 minutes and fell asleep. I think he slept for about 4 hours (about twice as long as his normal naps). Poor guy was so exhausted. He seems to be no worse for the wear and is back to his smiley self (not as much as in the hospital, but getting there). We're going to have a talk to see about avoiding the hospital/ER for a while. They're getting to the point that they recognize us.........
3 Hospitals in 6 1/2 months, Is that a Record?
Well, I had to open my big fat mouth. We ended up taking Mason to the hospital tonight - yes, a 3rd hospital (this one is closer than the other 2, but not a pediatric specialty hospital). Not because he was having trouble with his breathing, but because that feeding tube that was so "securely in place" (to quote myself just a few hours ago) came out. Mason, in his little stinker way, pulled the tube out while riding home with Bill from my parents' house. So, off we went to the ER - with a tube into the small intestine, we can't replace it ourselves. We need to have an x-ray to confirm that it made it through the stomach and is set in the small intestine. 4 hours later, the tube was back in, well, in the stomach anyway. The nurse and doctor think it's making its way to the intestine, but we'll have to be careful with the feeds just in case. So far, the feeding tonight is going ok. Let's hope it stays that way, but we might take him back to the clinic tomorrow anyway (well, I guess it's actually today now) to have another xray to make sure. If the tube stays in his stomach, we risk having lots of reflux, more puking, and possible aspiration (food into the lungs which causes pneumonia). Better to be safe than sorry in this case. Ahh, the joys of feeding tubes! I can't wait for this part of our lives to be behind us!!!!
Monday, October 13, 2008
When a Cold is Not Just a Cold
Well, we made it through the weekend without making the trek back to the hospital. Sometime on Saturday, we started to think that Mason sounded like he had a cold - coughing that sounded more like congestion than reflux, raspy breathing when he awoke from sleeping, and a little more sneezing. By Sunday, it was clear - Mason has his 1st cold. There were a few times we thought we might be close to taking him to the hospital, but then reminded ourselves that they wouldn't be able to do much more than we could do at home - he's already on another round of steroids. So, we turned up the oxygen a little more, gave another puff or 2 of the Albuterol inhaler, suctioned a little more, and kept the little guy home.
It amazes me that no matter how hard we tried, we couldn't prevent a cold. I don't think my hands will ever be soft again because they get washed so much, we don't take him anywhere but medical appointments, and we don't see any of our family or friends anymore for risk of exposure. But, somehow, some way, the little bug got through. Perhaps he caught it in the hospital, perhaps one of his medical appointments, or perhaps I brought something home from work. We'll never know, and it really doesn't matter. The good thing, though is of all times to get a cold, this was probably the best. He's on the steroids to beef up his lungs, the feeding tube is securely in place and he doesn't have as much puking from reflux, and we now know we can turn up the oxygen for a short time without worrying too much. If he'd had the cold before going into the hospital, we would have been in big trouble, but with the changes, his system can fight it much more effectively.
Hopefully this cold will pass quickly (he's on the steroids for another week, thankfully!) and his system will be that much stronger to fight the next one. I'm sure there will be a next one this winter. Before that, though, he'll get a flu shot and a Synergis shot (to help make sure another cold doesn't turn into a hospitalization), and we'll keep destroying our hands with frequent scrubbings.
I have also put a couple of Blog links over to the side:
The first one is for our cousins Linda, Rob and Ava. Ava was born on September 9th at 27 weeks gestation and is slowly, but surely making progress in the NICU. Linda, her mom, was diagnosed with breast cancer during the pregnancy and is undergoing chemo treatments for the cancer. Rob is the RockStar dad and husband who is holding everyone together.
The second one is for Mason's buddy from the NICU at St. V's. Joey was Mason's neighbor for a few weeks and we became friends with his parents. Joey recently had surgery to insert a feeding tube into his stomach. He did well with his surgery recovery for a little while, but then ended up with a bacterial pneumonia and had to be placed back on a ventilator. He continues to have a very rough recovery and needs all the prayers he can get to help him get better. We are also praying daily for his mom, dad, and sister as they go through this difficult experience.
On a much lighter note, Bill called me at work today to tell me of a monstrous poo. I'm sure you have seen this before - up the back, all over the clothes, and right before you need to leave to go somewhere. I guess there is a benefit to being back at work - I was already gone!! Mason really loves me; he saves that kind of stuff for Daddy!
It amazes me that no matter how hard we tried, we couldn't prevent a cold. I don't think my hands will ever be soft again because they get washed so much, we don't take him anywhere but medical appointments, and we don't see any of our family or friends anymore for risk of exposure. But, somehow, some way, the little bug got through. Perhaps he caught it in the hospital, perhaps one of his medical appointments, or perhaps I brought something home from work. We'll never know, and it really doesn't matter. The good thing, though is of all times to get a cold, this was probably the best. He's on the steroids to beef up his lungs, the feeding tube is securely in place and he doesn't have as much puking from reflux, and we now know we can turn up the oxygen for a short time without worrying too much. If he'd had the cold before going into the hospital, we would have been in big trouble, but with the changes, his system can fight it much more effectively.
Hopefully this cold will pass quickly (he's on the steroids for another week, thankfully!) and his system will be that much stronger to fight the next one. I'm sure there will be a next one this winter. Before that, though, he'll get a flu shot and a Synergis shot (to help make sure another cold doesn't turn into a hospitalization), and we'll keep destroying our hands with frequent scrubbings.
I have also put a couple of Blog links over to the side:
The first one is for our cousins Linda, Rob and Ava. Ava was born on September 9th at 27 weeks gestation and is slowly, but surely making progress in the NICU. Linda, her mom, was diagnosed with breast cancer during the pregnancy and is undergoing chemo treatments for the cancer. Rob is the RockStar dad and husband who is holding everyone together.
The second one is for Mason's buddy from the NICU at St. V's. Joey was Mason's neighbor for a few weeks and we became friends with his parents. Joey recently had surgery to insert a feeding tube into his stomach. He did well with his surgery recovery for a little while, but then ended up with a bacterial pneumonia and had to be placed back on a ventilator. He continues to have a very rough recovery and needs all the prayers he can get to help him get better. We are also praying daily for his mom, dad, and sister as they go through this difficult experience.
On a much lighter note, Bill called me at work today to tell me of a monstrous poo. I'm sure you have seen this before - up the back, all over the clothes, and right before you need to leave to go somewhere. I guess there is a benefit to being back at work - I was already gone!! Mason really loves me; he saves that kind of stuff for Daddy!
Saturday, October 11, 2008
Prayer Request for Joey
Please pray for a successful wean off the ventilator for Mason's NICU buddy, Joey. He has had an extremely rough course after getting a feeding tube placed into his stomach. We are praying daily for Joey and his family!
Another Day at Home
Thankfully, the steroids seem to be working. Mason is still at home and is breathing a little bit better - I might even think about unpacking tomorrow. He's still needing 3/4 liters of oxygen most of the time, but is able to come down to 1/2 every once in a while. We were blessed with a full night's sleep last night and some good naps today. Do we dare hope to have 2 nights in a row??
We can sure tell when Mason's feeling better. He seems to be almost back to his smiley little self, and even has started to sound like he's trying to giggle at times. He has a little more energy to work on some of his endurance exercises - propping himself up against my leg when he's on his stomach, sitting with is hands out in front of him to almost support himself, and looking all around. He has recently found himself in the mirror and likes to look at himself smiling.
Well, I'd better make this short, my little one is 'roid raging right now. Better go calm him down and help him fall asleep.
We can sure tell when Mason's feeling better. He seems to be almost back to his smiley little self, and even has started to sound like he's trying to giggle at times. He has a little more energy to work on some of his endurance exercises - propping himself up against my leg when he's on his stomach, sitting with is hands out in front of him to almost support himself, and looking all around. He has recently found himself in the mirror and likes to look at himself smiling.
Well, I'd better make this short, my little one is 'roid raging right now. Better go calm him down and help him fall asleep.
Friday, October 10, 2008
The Power of Roids
Today we awoke to our discharge fears realized. Mason had a hard time through the night with the oxygen monitor going off every once in a while and this morning, he was desaturating (not holding enough oxygen in his blood) even on 1 liter of oxygen. His last dose of steroids in the hospital was Wednesday morning. Today, they were finally out of his system. We got all packed up and ready to go to the hospital with a stop first at the pediatrician's office for a scheduled follow up. Mason had some blood drawn to see how the sodium, potassium, and carbon dioxide in his blood were. He also had to have another xray to make sure the feeding tube was still in his small intestine (it was moved from an NG - nose to stomach - to an NJ - nose to small intestine - in the hospital). Thankfully, the carbon dioxide is down a bit and the NJ tube is still in place. We still don't have a good idea of why Mason's lungs keep getting fluid around them, so until we do, we'll have to keep treating the symptoms. So Mason's back on the 'roids. Amazingly, within about an hour of the first dose, his breathing eased quite a bit and he was able to nap comfortably. He still needs a little bit more oxygen than a couple of days ago when he left the hospital, but thankfully he is not getting worse anymore. We are hoping that he continues to be stable so that he doesn't have to return to the hospital. I think we're going to stay packed, just in case though.
Thursday, October 9, 2008
Back Home
Last night we brought Mason home from OHSU. The reason that he was there was he was not breathing very well, a process that took a month to need more care. There was fluid on his lungs and was given a diuretic to clear that up. He was also given a 5 day dose of steroids to help with inflammation in his lungs. The good news was that he went in the hospital on 1.5 liters of oxygen and blow-by he left on 1/2 a liter.
I was amazed to see how much happier Mason was now that he could breathe. Before it took a lot of work to get him to smile but now it seems that he smiles jut to get a reaction out of me.
I was amazed to see how much happier Mason was now that he could breathe. Before it took a lot of work to get him to smile but now it seems that he smiles jut to get a reaction out of me.
Back Home
Last night we brought Mason home from OHSU. The reason that he was there was he was not breathing very well, a process that took a month to need more care. There was fluid on his lungs and was given a diuretic to clear that up. He was also given a 5 day dose of steroids to help with inflammation in his lungs. The good news was that he went in the hospital on 1.5 liters of oxygen and blow-by he left on 1/2 a liter.
I was amazed to see how much happier Mason was now that he could breathe. Before it took a lot of work to get him to smile but now it seems that he smiles jut to get a reaction out of me.
I was amazed to see how much happier Mason was now that he could breathe. Before it took a lot of work to get him to smile but now it seems that he smiles jut to get a reaction out of me.
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