I know Michael posted a quick update on Isaac’s condition that he wrote earlier today, but I just wanted to give a quick update on what the doctor said about Isaac today.
As Michael mentioned earlier, he and I spent a good day in the NICU with Isaac today – he was breathing much better today than he was when he had that episode of difficult breathing while we were there last night. And it was really nice to be able to hold him a lot today and feel like he was doing better. We spent the whole day there with him, and later on in the afternoon the doctor who performed his surgery the other day came to talk to us and answer any questions we had.
Last night when Isaac had the trouble with his breathing, we knew that it must be kind of serious, since there were all of a sudden 8 medical staff in the room. But it didn’t take them too long to give him the oral airway, which resolved the problem pretty quickly and relaxed his breathing a lot.
So, when the doctor came in to talk to us this afternoon and he called what happened to Isaac last night an “acute life threatening event” we were both a little shocked. We knew it was serious, but we had no idea it was that serious. The doctor said that the problem last night was not directly related to the surgery or the anesthesia, and said that their best diagnosis was that the problem last night was caused by reflux, especially since it happened shortly after the nurse tried to feed Isaac a little milk yesterday. We knew that they had given him two different medicines and they said that those would aggressively treat the reflux. When I asked the doctor if the reflux was going to be an ongoing problem for Isaac, I was also surprised to hear that he will continue on both of the reflux medications for 18 months to make sure that he doesn’t have another similar episode like last night.
We asked if the doctor had any idea when Isaac might be ready to go home, (since the original estimate had been that he might be ready to go home today or tomorrow, but we could tell he wasn’t ready for that). The doctor would not give us an estimate, since he said that he couldn’t predict hot Isaac would do in the future. But he did give us some idea when he said that they plan to wait until Isaac is off of all the tubes, the oral airway, the IV, the monitors, and until he is nursing like normal, and then watch him for 48 to 72 hours to make sure that he can do well without any of those extra things before they will send him home. So, we don’t really know how long it will be, but I would guess maybe that it will be another week before we can bring him home from the NICU, as long as there are no more setbacks.
So, it was good to get some more information about his condition, and although we’d love to have him home with us now, we are glad that they are going to be thorough and make sure that he is fully recovered before letting him go. We are glad that he seems to be doing so much better today, and please keep him in your prayers so that he will not have any more setbacks and he can recover quickly. Thank you!
Showing posts with label Reflux. Show all posts
Showing posts with label Reflux. Show all posts
28 October 2007
Still in the NICU
Well, it is Sunday afternoon and Steph and I have spent the morning at the hospital in the NICU with Isaac. He seems to be recovering really well from his surgery. The ENT (ear, nose, and throat) doctors operated on his nose on Friday to remove excess bone that was blocking the nasal passageways and making it difficult for him to breathe. Before the surgery he had an MRI of his brain. The condition he has, called Congenital Pyriform Aperture Stenosis, can sometimes be associated with other developmental problems, especially in the brain. Some of those abnormalities include having only one central incisor instead of two, Holoprosencephaly (which is when the brain doesn’t split properly into the right and left halves but stays one big piece), and problems with parts of the brain called the hypothalamus and the pituitary (which controls release of several hormones, including thyroid hormone, growth hormone, and Cortisol – which helps to control blood pressure – and others). The MRI of the brain came back essentially negative, so the doctors are going to run a few blood tests probably tomorrow, after Isaac has had a few days to recover from the surgery.
Congenital Pyriform Aperture Stenosis is a recently described condition that occurs before birth. It is a pretty rare condition, though there is not an exact number of how often it occurs, since it has only been described since 1988. There is another condition, called Choanal Atresia, which is similar to what Isaac has, but a little worse, since in this condition the entire nasal passage is blocked off and the baby can’t breathe through their nose at all, so they need surgery right away. The doctors think that there may have been many more babies before 1988 that had what Isaac has, but because the CT scanning technology wasn’t as good back then, it was not detected properly and was misdiagnosed as the Choanal Atresia, and treated with the same kind of surgery.
As part of the MRI study and surgery, Isaac had to have a breathing tube put down his throat (intubated), which Steph and I were able to watch Friday morning. I have seen many times when people had to be intubated, but it is a lot different when it is being done on your own child, especially at a teaching hospital, where they let the resident try first, and then the fellow, and then the attending doctor if the others are unsuccessful (which happened in Isaac’s case). According to the doctors, Isaac’s surgery went very well, and he did well overnight on Friday. Steph’s mom had arrived in town Thursday night and spent all day Friday with the other boys, since we had been in the hospital all day for Isaac’s surgery, so we thought it would be good to spend the night with our other children. There was a ward Halloween party, so we took them to that, with Kolby dressed as Tigger, Eli as a dinosaur, and Camden as a lion. They were so cute and had so much fun trick or treating and getting so much candy. It was nice to get them out of the house and spend some time together.
We spent the good part of Saturday morning cleaning up the house and then Steph and her mom went grocery shopping since the cupboards were bare after us being gone for the few days at the hospital. Isaac got the breathing tube out in the morning, so once they got home, we got the boys all cleaned up and took them over to the hospital to meet their new baby brother. We weren’t sure what to expect, and the boys ended up having a hard time, since the NICU is not an ideal place for loud, active little boys who like to touch everything they see and don’t like to sit still for more than 2 seconds (although for the first 10 minutes or so while they were first meeting Isaac, Kolby and Eli at least were good and well behaved and enjoyed seeing him and asking questions about how long it would be until he came home). The nurses had tried to feed Isaac some of Steph’s milk that we have saved for him just before we got there, and they said he seemed to enjoy it, but by the time the boys were done visiting with him, he was struggling quite a bit to breathe. The nurse tried to turn him and suction in his nose and mouth to see if that would help, but his tongue kept sticking to the roof of his mouth, blocking his airway, so they finally had to call the ENT doctors to come take a look. We had to get the other boys some food, so the ENT doctor called us later and said that after looking down Isaac’s throat with a scope, it seems that he had some acid reflux after getting the milk. She said this is common in babies, but with the other stresses of the surgery, having a tube down his throat, swelling in his lip, and tubes in his nose, the combination probably put him over the top and caused the throat to close. They gave him some morphine, put an oral airway in (a piece of plastic that is curved and rests just over the tongue to keep it from falling back into the throat and blocking the airway) and started Isaac on some acid blocking medicines. He seemed to calm down a lot after that, especially with the oral airway, so they have left that in for now to let him continue to wake up from the anesthesia and recover from the surgery. He is getting nutrition through an IV and the doctors said we will wait until tomorrow before trying to feed him again.
This morning Stephanie and I each got to hold him for a long time and he was very happy. He even tried to open his eyes a few times for us, though overall he is still very sleepy, and rightly so. And it was really nice to finally actually be able to sit down and hold him like a normal baby. The doctors had originally hoped (very optimistically) that Isaac would be able to go home tomorrow, but given how things have gone a little slower so far, it will probably be a few more days in the NICU, although the doctors still think he is healing nicely and will make a full recovery in the next few days.
Congenital Pyriform Aperture Stenosis is a recently described condition that occurs before birth. It is a pretty rare condition, though there is not an exact number of how often it occurs, since it has only been described since 1988. There is another condition, called Choanal Atresia, which is similar to what Isaac has, but a little worse, since in this condition the entire nasal passage is blocked off and the baby can’t breathe through their nose at all, so they need surgery right away. The doctors think that there may have been many more babies before 1988 that had what Isaac has, but because the CT scanning technology wasn’t as good back then, it was not detected properly and was misdiagnosed as the Choanal Atresia, and treated with the same kind of surgery.
As part of the MRI study and surgery, Isaac had to have a breathing tube put down his throat (intubated), which Steph and I were able to watch Friday morning. I have seen many times when people had to be intubated, but it is a lot different when it is being done on your own child, especially at a teaching hospital, where they let the resident try first, and then the fellow, and then the attending doctor if the others are unsuccessful (which happened in Isaac’s case). According to the doctors, Isaac’s surgery went very well, and he did well overnight on Friday. Steph’s mom had arrived in town Thursday night and spent all day Friday with the other boys, since we had been in the hospital all day for Isaac’s surgery, so we thought it would be good to spend the night with our other children. There was a ward Halloween party, so we took them to that, with Kolby dressed as Tigger, Eli as a dinosaur, and Camden as a lion. They were so cute and had so much fun trick or treating and getting so much candy. It was nice to get them out of the house and spend some time together.
We spent the good part of Saturday morning cleaning up the house and then Steph and her mom went grocery shopping since the cupboards were bare after us being gone for the few days at the hospital. Isaac got the breathing tube out in the morning, so once they got home, we got the boys all cleaned up and took them over to the hospital to meet their new baby brother. We weren’t sure what to expect, and the boys ended up having a hard time, since the NICU is not an ideal place for loud, active little boys who like to touch everything they see and don’t like to sit still for more than 2 seconds (although for the first 10 minutes or so while they were first meeting Isaac, Kolby and Eli at least were good and well behaved and enjoyed seeing him and asking questions about how long it would be until he came home). The nurses had tried to feed Isaac some of Steph’s milk that we have saved for him just before we got there, and they said he seemed to enjoy it, but by the time the boys were done visiting with him, he was struggling quite a bit to breathe. The nurse tried to turn him and suction in his nose and mouth to see if that would help, but his tongue kept sticking to the roof of his mouth, blocking his airway, so they finally had to call the ENT doctors to come take a look. We had to get the other boys some food, so the ENT doctor called us later and said that after looking down Isaac’s throat with a scope, it seems that he had some acid reflux after getting the milk. She said this is common in babies, but with the other stresses of the surgery, having a tube down his throat, swelling in his lip, and tubes in his nose, the combination probably put him over the top and caused the throat to close. They gave him some morphine, put an oral airway in (a piece of plastic that is curved and rests just over the tongue to keep it from falling back into the throat and blocking the airway) and started Isaac on some acid blocking medicines. He seemed to calm down a lot after that, especially with the oral airway, so they have left that in for now to let him continue to wake up from the anesthesia and recover from the surgery. He is getting nutrition through an IV and the doctors said we will wait until tomorrow before trying to feed him again.
This morning Stephanie and I each got to hold him for a long time and he was very happy. He even tried to open his eyes a few times for us, though overall he is still very sleepy, and rightly so. And it was really nice to finally actually be able to sit down and hold him like a normal baby. The doctors had originally hoped (very optimistically) that Isaac would be able to go home tomorrow, but given how things have gone a little slower so far, it will probably be a few more days in the NICU, although the doctors still think he is healing nicely and will make a full recovery in the next few days.
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