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.
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