Tomorrow is going to be a big day for our boy. The pulmonologist and neonatologist met on Monday to evaluate Andrew. His carbon dioxide level was 69 and oxygen needs around 43. The pulmonologist wants him to be in the 50's for carbon dioxide and 40's for oxygen before moving him to the home ventilator, so we're halfway there. They discovered that Andrew has some air leaking around his tracheotomy that may be causing him to have higher carbon dioxide levels, and his acid reflux is getting into lungs causing more problems.
They put in a larger trach and are giving him until tomorrow morning to get his carbon dioxide levels down. Since the new trach was put it, his oxygen levels have come down to the 30's, which is a positive sign.
If his carbon dioxide levels come down to the 50's, and his oxygen needs stay in the 30's to 40's, then we'll be moving to Our Children's House next week on a home ventilator. That is what we want. One step closer to getting him home.
However, if his carbon dioxide levels are still in the 60's, we'll have to make some decisions. We could wait and give Andrew time to grow. This would mean a move to Children's Medical Center where he can get better help developmentally. As he grows, his lungs would grow, and he would slowly get better. We would also continue to have the issue of the acid reflux getting into his lungs, which is slowing the process down.
Another option is to have another surgery. They would perform a nissan, which wraps the stomach around the esophagus, so the acid relux can't come back up. There is no guarantee that this would work though. It would hopefully fix his acid relux, but there's an unknown on how it would help his lungs.
They could also put him on a burst of steroids, again. This seems to be a short term fix with possible long term developmental issues. He's had them in the past, but we would rather not have him go through another round.
Please pray for Andrew. Pray that his lungs would become more clear, his carbon dioxide levels would come down to the 50's, and his acid reflux would become less and less. Pray for God's will in Andrew's life.
Tuesday, April 20, 2010
Saturday, April 17, 2010
Saturday, April 17
Life with the babies is going well, and we're adjusting to lack of sleep and a hectic schedule.
Andrew is still on the Evita vent and running around 50 percent on his oxygen needs. We spoke with the pulmonologist, and he would like Andrew to have his oxygen needs in the 40s, and his carbon dioxide levels in the 50s before moving back to a home vent. Andrew's carbon dioxide levels have been in the 60s lately, so we wait. If his levels don't come down by early next week, the doctor may try more medications including another round of steroids. The doctor thinks Andrew's acid reflux is really holding him back, and is getting into his lungs. We're tired of Andrew being in there and really want him to get better, so he can come home. Another issue that we may run into is that Andrew is 3 weeks past term and may need to move to the pulmonology or Pediatric ICU wing. A decision will be made in the next few weeks.
Thursday was a very busy and stressful day for us and the girls. We spent most of the day at doctor's appointments. One appointment was planned and the other was scheduled the day before when the doctor's schedule opened up. Mattie was able to be squeezed in to see the same pulmonologist that Andrew has. He said Mattie looked good and wants us to try removing her nasal cannula for short periods of time to see how she reacts. He's also going to increase some medications for her lungs. The second appointment was worse for the girls. They had eye exams, and they hate them. The doctor uses an instrument to hold their eyes open that looks like something out of a sci-fi movie. Adelaide's eyes looked great and will not have to be checked again. Mattie's eyes are not completely developed, so she'll be examined again in 5 weeks. After we left the appointment, our car wouldn't start. The battery was starting to go, and we had to get it jumped. We thought we were going to be stuck in Plano. We got home late after stopping for a new battery, and turned around to go back to Dallas to visit Andrew. Quite a long day.
Praise
Adelaide's eyes look great.
Mattie getting in with the pulmonologist.
Weight gain for the babies.
Andrew's Echo looked awesome. No heart issues.
Prayers
Pray for the decision we need to make on Andrew's care.
Pray that he will improve in the next few days, so he doesn't have to go through steroids, again.
Pray that Mattie's eyes will develop.
Pray for Kevin and Tara as we try to juggle work, medical paperwork, family, doctor's appointments, and visits to Andrew.
Andrew is still on the Evita vent and running around 50 percent on his oxygen needs. We spoke with the pulmonologist, and he would like Andrew to have his oxygen needs in the 40s, and his carbon dioxide levels in the 50s before moving back to a home vent. Andrew's carbon dioxide levels have been in the 60s lately, so we wait. If his levels don't come down by early next week, the doctor may try more medications including another round of steroids. The doctor thinks Andrew's acid reflux is really holding him back, and is getting into his lungs. We're tired of Andrew being in there and really want him to get better, so he can come home. Another issue that we may run into is that Andrew is 3 weeks past term and may need to move to the pulmonology or Pediatric ICU wing. A decision will be made in the next few weeks.
Thursday was a very busy and stressful day for us and the girls. We spent most of the day at doctor's appointments. One appointment was planned and the other was scheduled the day before when the doctor's schedule opened up. Mattie was able to be squeezed in to see the same pulmonologist that Andrew has. He said Mattie looked good and wants us to try removing her nasal cannula for short periods of time to see how she reacts. He's also going to increase some medications for her lungs. The second appointment was worse for the girls. They had eye exams, and they hate them. The doctor uses an instrument to hold their eyes open that looks like something out of a sci-fi movie. Adelaide's eyes looked great and will not have to be checked again. Mattie's eyes are not completely developed, so she'll be examined again in 5 weeks. After we left the appointment, our car wouldn't start. The battery was starting to go, and we had to get it jumped. We thought we were going to be stuck in Plano. We got home late after stopping for a new battery, and turned around to go back to Dallas to visit Andrew. Quite a long day.
Praise
Adelaide's eyes look great.
Mattie getting in with the pulmonologist.
Weight gain for the babies.
Andrew's Echo looked awesome. No heart issues.
Prayers
Pray for the decision we need to make on Andrew's care.
Pray that he will improve in the next few days, so he doesn't have to go through steroids, again.
Pray that Mattie's eyes will develop.
Pray for Kevin and Tara as we try to juggle work, medical paperwork, family, doctor's appointments, and visits to Andrew.
Monday, April 12, 2010
NICU Family
Please pray for the D family. We met them a week after the triplets were born. Their daughter, T, passed away today. Please pray for comfort and peace.
Monday, April 12
We've had a set back with Andrew. He had a really bad blood gas, and his carbon dioxide levels have come up. His x-ray didn't look good either. They have moved him back to the Evita ventilator, which is what he was on when he first arrived in Dallas. So far, he's doing better. His blood gas this afternoon is improved. He'll need to get more stable on this vent before he's moved back to the home vent. His been suffering from acid reflux and has been spitting up. The staff is concerned about aspiration, so they put a tube down his nose that goes past his stomach for feedings. This should help with the reflux. Andrew's last eye exam was great, and he doesn't have any problems.
Mattie and Adelaide continue to do well at home. They're both pretty calm babies. Adelaide only screams when she's hungry. We have an eye appointment this week to see how they're doing.
Tara's last day was Friday and it's good to have her home.
Praise
Tara's last day.
Babies feeding well.
Weight gain. Especially for Andrew.
Our moms helping us care for the babies.
Andrew's good eye exam.
Prayer
Andrew would recover from his vent change.
Andrew would be comfortable. Whatever his hurting him would stop.
Mattie would wean off oxygen.
Adelaide's acid reflux would improve.
Mattie and Adelaide continue to do well at home. They're both pretty calm babies. Adelaide only screams when she's hungry. We have an eye appointment this week to see how they're doing.
Tara's last day was Friday and it's good to have her home.
Praise
Tara's last day.
Babies feeding well.
Weight gain. Especially for Andrew.
Our moms helping us care for the babies.
Andrew's good eye exam.
Prayer
Andrew would recover from his vent change.
Andrew would be comfortable. Whatever his hurting him would stop.
Mattie would wean off oxygen.
Adelaide's acid reflux would improve.
Friday, April 9, 2010
Wednesday, April 7, 2010
Wednesday, April 7
It's been over a week since our last posting. We hope that you didn't think we forgot about you. It's a crazy busy life that we live. Tara's last day is this Friday, and Kevin's been working on a project that has taken up a lot of time. We've had an enormous amount of help from our moms. They've been working long days, so we can work and visit Andrew.
Andrew is doing good with his trach. He did pull it out late last week, but luckily, the scar tissue had already started to form, and his surgeon happened to be in the NICU visiting another baby. The staff was able to place it back in his throat. He's been weaning off his vent, and his carbon dioxide levels have looked good. The staff started to feed him again, and he's been increasing almost daily. Today, the doctors are testing him on a home vent to see how he does. He's completely off sedation, steroids, and pain relief. He enjoys listening to a CD that we made of us reading books and singing and playing guitar.
Adelaide is doing really well. She's eating a bunch and has a great appetite. She has had some nights of stomach pains, which has kept us up. She's been having trouble going to the bathroom, so we've been trying some home remedies suggested by the doctor. She enjoys her tummy time and is a really sweet baby.
The rooming-in went really good with Mattie. After having one with Adelaide, we were used to the process and got some sleep. It also helps to know that we have the crutch of the monitors. She did have a bad brady episode while Tara was feeding her on Saturday. It scared Tara a bunch. Her first doctor's visit went really well. Kevin had an interesting time getting her there with all the monitors and oxygen. It also took him a few minutes to figure out the stroller. Mattie weighed 6lbs. 10oz., and will be seeing a pulmonologist to make sure her lungs are good.
Praise
Andrew doing so well. The home vent is a step closer to home.
Easter pictures of Adelaide and Mattie (coming soon).
Kevin and Tara celebrating Easter morning at home with a reading of the Easter story (no, not the rabbit story).
Babies eating well.
Mattie being home.
Help from our moms, and family and friends.
Prayer
Andrew would do well on the home vent. His carbon dioxide and oxygen needs would be low.
Adelaide and Mattie would be "regular".
Strength and rest for Tara, Kevin, and our families.
Mattie would wean off her oxygen and stop bradying.
Andrew is doing good with his trach. He did pull it out late last week, but luckily, the scar tissue had already started to form, and his surgeon happened to be in the NICU visiting another baby. The staff was able to place it back in his throat. He's been weaning off his vent, and his carbon dioxide levels have looked good. The staff started to feed him again, and he's been increasing almost daily. Today, the doctors are testing him on a home vent to see how he does. He's completely off sedation, steroids, and pain relief. He enjoys listening to a CD that we made of us reading books and singing and playing guitar.
Adelaide is doing really well. She's eating a bunch and has a great appetite. She has had some nights of stomach pains, which has kept us up. She's been having trouble going to the bathroom, so we've been trying some home remedies suggested by the doctor. She enjoys her tummy time and is a really sweet baby.
The rooming-in went really good with Mattie. After having one with Adelaide, we were used to the process and got some sleep. It also helps to know that we have the crutch of the monitors. She did have a bad brady episode while Tara was feeding her on Saturday. It scared Tara a bunch. Her first doctor's visit went really well. Kevin had an interesting time getting her there with all the monitors and oxygen. It also took him a few minutes to figure out the stroller. Mattie weighed 6lbs. 10oz., and will be seeing a pulmonologist to make sure her lungs are good.
Praise
Andrew doing so well. The home vent is a step closer to home.
Easter pictures of Adelaide and Mattie (coming soon).
Kevin and Tara celebrating Easter morning at home with a reading of the Easter story (no, not the rabbit story).
Babies eating well.
Mattie being home.
Help from our moms, and family and friends.
Prayer
Andrew would do well on the home vent. His carbon dioxide and oxygen needs would be low.
Adelaide and Mattie would be "regular".
Strength and rest for Tara, Kevin, and our families.
Mattie would wean off her oxygen and stop bradying.
Thursday, April 1, 2010
Andrew - 16 Week Pictures
The first two are before the surgery, and the last one is the first time Tara held Andrew after the tracheotomy. They had stopped his paralyzing medication.
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