Please say an extra prayer tonight for my good friends Kristie and Ike as they mourn the loss of their beautiful baby girl.
Shortly before 6:00 tonight, Brielle went home to be with the Lord. In such a short time, this little girl touched the lives of so many. She helped us know the power of prayer as God performed many miracles allowing each of us to feel the love and support that only one so small can bring.
Brielle, we will miss you!
Sunday, August 30, 2009
Thursday, August 27, 2009
Brielle
Please say a prayer for baby Brielle (the 20 day old beautiful daughter of a good friend of mine) at 9:30 am tomorrow, 8/28. Brielle has a congenital heart defect for which she underwent open heart surgery when she was only 10 days old. Since then, she has struggled for life and is being sustained by a machine that pumps her blood for her. Tomorrow, the doctors are going to wean her off of the machine in hopes that she is strong enough for her heart to pump on its own. Brielle is in for the fight of her life tomorrow. Please keep her and her parents in your thoughts tomorrow, especially around 9:30 am!
Brielle, I pray that you have the strength you need to thrive off of the ECMO; I pray that your parents continue to trust in God and have the strength they need to stand by you; and I pray for your doctors and nurses as they work hard to bring you safely off of the ECMO.
Brielle, I pray that you have the strength you need to thrive off of the ECMO; I pray that your parents continue to trust in God and have the strength they need to stand by you; and I pray for your doctors and nurses as they work hard to bring you safely off of the ECMO.
Monday, August 17, 2009
The Dreaded "P" Word
Amazingly, it didn't happen last fall when Mason was spitting up 2-3 times per day. We escaped aspiration pneumonia then, but were not so fortunate this past week. A couple of weeks ago, Mason started spitting up some of his food - it had happened a couple of times since his surgery in December and the surgeon said not to worry. Then, it started happening daily, 2-3x/day. We wondered what might be going wrong, but thought that it was probably the surgery loosening up over time - a known complication. We had hoped that Mason's surgery would last until his lungs got better, but it looked like that wasn't going to be the case. Then, Thursday, I picked up the next round of his anti-reflux medication (Prevacid is only good for 14 days, then we have to get a refill), and the spitting up stopped. So, we figured the spitting up must have been reflux that was overpowering the surgical site. The last batch of his Prevacid must have been ineffective.
Well, it looks like some of the spit up must have made it's way into Mason's lungs last week or the week before. We started noticing an increase in oxygen need last Wednesday and it gradually worsened and worsened until today he was needing 5 liters of oxygen (normally around 2-3 liters during the day). We had a blood test over the weekend that came back great, so we were in a quandary about what was going on. So, Bill took Mason to see the pediatrician today and a chest x-ray was ordered. Sure enough, there's a "pneumonia-like" mass in Mason's lower lobe of his right lung. So, we've repeated a steroid burst and added an antibiotic to Mason's medications. Hopefully, between these 2 things, we'll be able to avoid another trip to the hospital.
On another note, please say an extra prayer for Mason's new friend, Brielle, tonight and tomorrow. She is just 9 days old and going in for major open heart surgery tomorrow. Please pray that the surgery is a success and pray for strength for her mom and dad as they wait for the 5-6 hours of the surgery. Kristie, Ike, and Brielle, we are praying for you!!!
Well, it looks like some of the spit up must have made it's way into Mason's lungs last week or the week before. We started noticing an increase in oxygen need last Wednesday and it gradually worsened and worsened until today he was needing 5 liters of oxygen (normally around 2-3 liters during the day). We had a blood test over the weekend that came back great, so we were in a quandary about what was going on. So, Bill took Mason to see the pediatrician today and a chest x-ray was ordered. Sure enough, there's a "pneumonia-like" mass in Mason's lower lobe of his right lung. So, we've repeated a steroid burst and added an antibiotic to Mason's medications. Hopefully, between these 2 things, we'll be able to avoid another trip to the hospital.
On another note, please say an extra prayer for Mason's new friend, Brielle, tonight and tomorrow. She is just 9 days old and going in for major open heart surgery tomorrow. Please pray that the surgery is a success and pray for strength for her mom and dad as they wait for the 5-6 hours of the surgery. Kristie, Ike, and Brielle, we are praying for you!!!
Tuesday, August 11, 2009
Has it Been That Long?
Wow! I can't believe it's been nearly a month since our last update post. Sorry for the neglect. Mason's been cooking right along with some ups, some downs, continued teething (he hasn't had a break from cutting new teeth since Feb/March) and basically, just holding steady.
Steroids:
We've been able to cut Mason's steroid dose in half so that he's just getting 0.5 mL once a day. He seems to be tolerating it well with just a slight bump in his oxygen need, but we think we're going to give him another week to adjust before bringing his dose down any more. It's amazing how much 0.1 mL affects his system. Even that small of a jump can cause some pretty big changes with his oxygen need, so we have to take it very slowly. Once we get to 0.3 mL once a day, we'll go back to see the Endocrinologist (hormone doctor) to start our 6 month process of getting Mason off of steroids completely. Once that happens, hopefully he'll start to grow more in height which is essential for his lung growth.
Lungs:
We saw the pulmonologist (lung doctor) last week. He was was pleased to see that Mason's coming down off of the steroids a little bit, but slightly concerned that his carbon dioxide blood values were high. The labs seem to be the same as when he was in the hospital the last time (in May), so at least Mason's holding steady. In the doctor's words: not good steady, more like bad steady, but at least its steady. We're not sure why the bump in the amount of carbon dioxide his body is holding in, especially since he appears to be doing well otherwise. Guess we'll just have to keep an eye on those labs and see if it's just a blip in time. We asked about doing another chest x-ray to see if Mason's lungs were developing, but once again the answer was it really isn't necessary. If it shows the lungs are developing, we are on the right track. If it shows they are getting worse, they wouldn't really do anything different. All we can do at this point is keep doing what we're doing and let nature take its course with Mason's growth. It's really a lot of hurry up and wait.
Development:
This is the area where we've seen the most improvement over the last couple of months. In June, Mason was just starting to get from lying down up to a sitting position. Now, he's transitioning between the 2 positions with ease and in different ways (not always the cute butt up in the air method). Last month, he started pulling himself up to standing in the crib, and now he's able to do it on the couch as well. He's quite active with cruising around holding on to furniture. At times, he even reaches out for our hands to go for a little walk. Truth be told, I think he actually prefers to be standing more than sitting around - where'd 2 lazy people like us get this kid?? We've found we have to turn the oxygen saturation monitor off any time he's on his feet or it doesn't read right and sets off the alarm with any pressure - quite annoying, really.
Today, we went in to the clinic for a PT appointment. It was the first time in 4 months that this PT has seen Mason and she was amazed at how much he's progressed in that time. He even tried to crawl up some steps that she has. Unfortunately, since he's really short for his age and development, he couldn't quite get his knee up on the step. The PT was pleased that Mason is doing everything he's supposed to and she only had one minor concern. It appears that his left ankle isn't quite as strong as she'd like it to be, so we're going to see about getting him used to wearing shoes to see if that gives him a little extra support. My little guy is growing up - time to start wearing something other than just socks on his feet.
I think that just about brings us up to speed. Oh, one other thing. At the lung doctor appointment, we got another weight for Mason. He's finally enough over 20# (21 lb. 4 oz) that we finally have turned his car seat around in the car. I really enjoy having him forward facing. It's fun to reach into the back to tickle his feet while we're stopped at red lights......
Steroids:
We've been able to cut Mason's steroid dose in half so that he's just getting 0.5 mL once a day. He seems to be tolerating it well with just a slight bump in his oxygen need, but we think we're going to give him another week to adjust before bringing his dose down any more. It's amazing how much 0.1 mL affects his system. Even that small of a jump can cause some pretty big changes with his oxygen need, so we have to take it very slowly. Once we get to 0.3 mL once a day, we'll go back to see the Endocrinologist (hormone doctor) to start our 6 month process of getting Mason off of steroids completely. Once that happens, hopefully he'll start to grow more in height which is essential for his lung growth.
Lungs:
We saw the pulmonologist (lung doctor) last week. He was was pleased to see that Mason's coming down off of the steroids a little bit, but slightly concerned that his carbon dioxide blood values were high. The labs seem to be the same as when he was in the hospital the last time (in May), so at least Mason's holding steady. In the doctor's words: not good steady, more like bad steady, but at least its steady. We're not sure why the bump in the amount of carbon dioxide his body is holding in, especially since he appears to be doing well otherwise. Guess we'll just have to keep an eye on those labs and see if it's just a blip in time. We asked about doing another chest x-ray to see if Mason's lungs were developing, but once again the answer was it really isn't necessary. If it shows the lungs are developing, we are on the right track. If it shows they are getting worse, they wouldn't really do anything different. All we can do at this point is keep doing what we're doing and let nature take its course with Mason's growth. It's really a lot of hurry up and wait.
Development:
This is the area where we've seen the most improvement over the last couple of months. In June, Mason was just starting to get from lying down up to a sitting position. Now, he's transitioning between the 2 positions with ease and in different ways (not always the cute butt up in the air method). Last month, he started pulling himself up to standing in the crib, and now he's able to do it on the couch as well. He's quite active with cruising around holding on to furniture. At times, he even reaches out for our hands to go for a little walk. Truth be told, I think he actually prefers to be standing more than sitting around - where'd 2 lazy people like us get this kid?? We've found we have to turn the oxygen saturation monitor off any time he's on his feet or it doesn't read right and sets off the alarm with any pressure - quite annoying, really.
Today, we went in to the clinic for a PT appointment. It was the first time in 4 months that this PT has seen Mason and she was amazed at how much he's progressed in that time. He even tried to crawl up some steps that she has. Unfortunately, since he's really short for his age and development, he couldn't quite get his knee up on the step. The PT was pleased that Mason is doing everything he's supposed to and she only had one minor concern. It appears that his left ankle isn't quite as strong as she'd like it to be, so we're going to see about getting him used to wearing shoes to see if that gives him a little extra support. My little guy is growing up - time to start wearing something other than just socks on his feet.
I think that just about brings us up to speed. Oh, one other thing. At the lung doctor appointment, we got another weight for Mason. He's finally enough over 20# (21 lb. 4 oz) that we finally have turned his car seat around in the car. I really enjoy having him forward facing. It's fun to reach into the back to tickle his feet while we're stopped at red lights......
Saturday, August 8, 2009
Mason Has a New Friend
For those of you who don't know, a really good friend of mine has been expecting a baby girl. My friends have known for several months that the baby has a heart defect that will require multiple surgeries in her early years and have been preparing for the challenges that will come. Well, this morning, the little miracle arrived and is doing great. She's in the NICU, but requiring no breathing assistance. She's doing great!! Please continue to pray for her as she begins a challenging journey through childhood. Please also join me in thanking God for her arrival and for Mom and baby doing so well!!
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