All the changes today were relatively minor, but they were mostly in the right direction. His vent rate is down from 14 to 12, his nitric oxide was dropped from 5 to 2.5, and his oxygen is still down at 25/26. They've stopped his Versed entirely and took him off a morphine schedule. They've replaced the Versed with methadone to deal with any withdrawal symptoms, and they're still allowed to give him extra morphine if he appears to be uncomfortable or in pain. He took one morphine dose earlier today, but hasn't required any this evening. No major desaturations, no noticeable pain, and no inconsolable tantrums.
He's continued to have some bile coming up from his stomach, so they re-inserted his NG tube for suction. This is normal, and his intestines may take a few days to fully recover from the surgery. They'll wait until this clears up before they start to feed him again. Sorry that there's not a lot to report, but being off the medication and continuing to come down on vent settings is definitely progress. With the ventilator running this low and his nitric oxide creeping down to nothing, changes may be few and far between....they're only measuring his blood gases every six hours, which will move to eight hours when he gets further past his surgery. Once his stomach clears up they'll have even less to worry about, and I may start posting a bit less frequently. I'll definitely get all the milestones in there, but he's been (thankfully) a little boring during the past couple of days.
Jul 23, 2007
Jul 22, 2007
All Quiet on the NICU Front
Andrew had another day with the same sort of progress. They're only testing his blood every six hours, but he's been consistently weaned off his ventilator. He's down to 14 breaths per minute, from 20, and steady on his oxygen. They've started to come down on his Versed drip, cutting the dosage in half. They'll replace the other half with methadone, which should help alleviate any dependency Andrew has formed on his painkillers. As they wean him further, they'll raise the methadone dosage, then slowly wean that down as well.
In the last 24 hours, he's only had one or two agitated moments, and turning up his oxygen temporarily has seemed to stabilize him reasonably well. He's still very much awake most of the time, and the nurses have used everything from personal attention to mobiles to music to television as methods for distraction. We brought in a small music player and tiny speakers to put near his head and play to keep him entertained. Hopefully we won't have to use TV as a long-term babysitter quite yet.
When they started Andrew on antibiotics two days ago (a half-day pre-op), they took blood samples for cultures. One of those samples, from his arterial line, grew some colonies, suggesting a possible infection. They've pulled that line and put in a new one on his other arm, they've taken cultures every day since (all negative), and they've been monitoring his other vital signs for any other signs of infection. All reports from surgeons, doctors, and nurses have been great. There's no fever, no belly tenderness, and no positive cultures. It's possible that the antibiotics have already started working, or that the test may have been contaminated from the plastic itself. Either way, he's shown no adverse effects and has continued progressing in the right direction, so no one seems to be worried.
For now, I believe their strategy moving forward will be more of the same...weaning on ventilator and narcotics, watching his G-tube for any output, and keeping him happy and stable at all times. Once feedings start, we'll talk to the doctor about their new plan.
In the last 24 hours, he's only had one or two agitated moments, and turning up his oxygen temporarily has seemed to stabilize him reasonably well. He's still very much awake most of the time, and the nurses have used everything from personal attention to mobiles to music to television as methods for distraction. We brought in a small music player and tiny speakers to put near his head and play to keep him entertained. Hopefully we won't have to use TV as a long-term babysitter quite yet.
When they started Andrew on antibiotics two days ago (a half-day pre-op), they took blood samples for cultures. One of those samples, from his arterial line, grew some colonies, suggesting a possible infection. They've pulled that line and put in a new one on his other arm, they've taken cultures every day since (all negative), and they've been monitoring his other vital signs for any other signs of infection. All reports from surgeons, doctors, and nurses have been great. There's no fever, no belly tenderness, and no positive cultures. It's possible that the antibiotics have already started working, or that the test may have been contaminated from the plastic itself. Either way, he's shown no adverse effects and has continued progressing in the right direction, so no one seems to be worried.
For now, I believe their strategy moving forward will be more of the same...weaning on ventilator and narcotics, watching his G-tube for any output, and keeping him happy and stable at all times. Once feedings start, we'll talk to the doctor about their new plan.
Jul 20, 2007
He Is Strong Like Bull
Andrew's recovery is continuing well, and he's reacting in a really funny way. They gave him an extra dose of steroids just before the surgery this morning, in order to reduce inflammation, etc. The nurse said that was why he was awake so soon after his surgery, though she was expecting him to go to sleep after they started the extra medication, which is called Versed. Versed, medically known as Midazolam, has the following drug description:
"Midazolam is used to produce sleepiness or drowsiness and to relieve anxiety before surgery or certain procedures. It is also used to produce loss of consciousness before and during surgery. Midazolam is used sometimes in patients in intensive care units in hospitals to cause unconsciousness. This may allow the patients to withstand the stress of being in the intensive care unit and help the patients cooperate when a machine must be used to assist them with breathing."
The description mentions drowsiness, sleepiness, or unconsciousness four times in four sentences. He's also on regular doses of morphine and Ativan, and had major anesthesia this morning. One would think he would sleep for the next three days...but not our baby. When I called before shift change at 6:30pm, the nurse said, "Your baby is hilarious." Apparently he was wide awake the entire time, watching her every move, staring at his mobile, and even trying to turn his head to follow her movements. Just like his daddy, he doesn't want to go to sleep when anything interesting is going on. She finally had to put a blanket over his eyes to make him go to sleep.
The night nurse had the same report. He's been awake a lot, though entirely comfortable and not irritated. When he does get a little upset, he's been a lot more consolable than he was before the operation. His blood pressure is a little high from the steroid dosage, but he's still behaving very well and all his gases have been good. All his vent settings had gone up in the last few days when he was getting so upset, and they've been able to wean them back down today. His oxygen percentage is at 25%, which is the lowest ever. His vent is at 20 breaths per minute, down from 26 this morning. He's breathing above the ventilator while he's awake and sometimes when he's asleep, except for the few times the drugs have really kicked in and put him into a deep sleep. Suppressing respiration is one of the expected effects of the drugs, but he's been able to keep great blood gas levels even on low settings.
We're very proud of how he's handling his recovery so far. It appears that his discomfort in the last few days didn't involve a relapse with his lung issues, which have continued to improve. They'll continue with the same strategy, but probably won't try extubating him until he's on much lower doses of medication. He's on a few extra meds (the painkillers, antibiotics, etc) for now.
They've been getting some light green fluid from his NG (nose to stomach) tube, which is to be expected for a few days. In the morning they'll remove that tube and start doing everything through the G-tube (direct to stomach). In a few days, they'll be able to replace the huge plastic disk on his chest with a much more unobtrusive connector. As his stomach excretions become more clear, that will be a sign that his bowel has recovered from the surgery and is ready for feedings again. We'll be starting over with very small amounts of milk, but hopefully he'll respond better now that there aren't any obstructions.
It'll be several days before they remove the bandage over his incision, and probably ten days before the Steri-Strips and remaining tape are gone. We're not sure exactly what it looks like, but it's straight enough that it ruins our cover story. With his long, curving scar, we thought he could tell people it was a shark bite...the new scar will require a new explanation. Any ideas?
"Midazolam is used to produce sleepiness or drowsiness and to relieve anxiety before surgery or certain procedures. It is also used to produce loss of consciousness before and during surgery. Midazolam is used sometimes in patients in intensive care units in hospitals to cause unconsciousness. This may allow the patients to withstand the stress of being in the intensive care unit and help the patients cooperate when a machine must be used to assist them with breathing."
The description mentions drowsiness, sleepiness, or unconsciousness four times in four sentences. He's also on regular doses of morphine and Ativan, and had major anesthesia this morning. One would think he would sleep for the next three days...but not our baby. When I called before shift change at 6:30pm, the nurse said, "Your baby is hilarious." Apparently he was wide awake the entire time, watching her every move, staring at his mobile, and even trying to turn his head to follow her movements. Just like his daddy, he doesn't want to go to sleep when anything interesting is going on. She finally had to put a blanket over his eyes to make him go to sleep.
The night nurse had the same report. He's been awake a lot, though entirely comfortable and not irritated. When he does get a little upset, he's been a lot more consolable than he was before the operation. His blood pressure is a little high from the steroid dosage, but he's still behaving very well and all his gases have been good. All his vent settings had gone up in the last few days when he was getting so upset, and they've been able to wean them back down today. His oxygen percentage is at 25%, which is the lowest ever. His vent is at 20 breaths per minute, down from 26 this morning. He's breathing above the ventilator while he's awake and sometimes when he's asleep, except for the few times the drugs have really kicked in and put him into a deep sleep. Suppressing respiration is one of the expected effects of the drugs, but he's been able to keep great blood gas levels even on low settings.
We're very proud of how he's handling his recovery so far. It appears that his discomfort in the last few days didn't involve a relapse with his lung issues, which have continued to improve. They'll continue with the same strategy, but probably won't try extubating him until he's on much lower doses of medication. He's on a few extra meds (the painkillers, antibiotics, etc) for now.
They've been getting some light green fluid from his NG (nose to stomach) tube, which is to be expected for a few days. In the morning they'll remove that tube and start doing everything through the G-tube (direct to stomach). In a few days, they'll be able to replace the huge plastic disk on his chest with a much more unobtrusive connector. As his stomach excretions become more clear, that will be a sign that his bowel has recovered from the surgery and is ready for feedings again. We'll be starting over with very small amounts of milk, but hopefully he'll respond better now that there aren't any obstructions.
It'll be several days before they remove the bandage over his incision, and probably ten days before the Steri-Strips and remaining tape are gone. We're not sure exactly what it looks like, but it's straight enough that it ruins our cover story. With his long, curving scar, we thought he could tell people it was a shark bite...the new scar will require a new explanation. Any ideas?
Post-Op Video
Here's a video of Andrew an hour and a half after finishing his surgery. Sorry it got squished somehow...it makes him look shorter and wider than he actually is.
Some Good Pics
Video later, but first a few pictures.
Here's lookin' at you, kid.
Post-op, with his new G-tube.
Active only an hour and a half after surgery.
All Done
We just spoke with the surgeon, and everything went very well. There was no bowel damage, the Ladd's bands were successfully removed (though there were many), the appendix was removed, and the G-tube is in place. All his intestines have been placed, and he doesn't anticipate Andrew's twisty bowel will cause future problems. They tested the fix by flushing warm saline through his NG tube...it passed through without a problem.
He's back from the OR and in his NICU spot again. He already woke up from the anesthetic...he's not in any pain and they gave him more meds in preparation. Apparently Andrew could take a direct shot from an elephant tranquilizer and be unfazed. We'll get in to see him in a bit, but he came through with flying colors.
He's back from the OR and in his NICU spot again. He already woke up from the anesthetic...he's not in any pain and they gave him more meds in preparation. Apparently Andrew could take a direct shot from an elephant tranquilizer and be unfazed. We'll get in to see him in a bit, but he came through with flying colors.
Going Well So Far
The nurse just came in to give us an update. The constriction was the Ladd's bands, as expected, and they were removed with no damage to the duodenum or loss of any bowel. He said that Andrew has a paricularly kinky intestine, but they were straightening things out where they could.
They've added the G-tube and are currently placing his intestines in their new location. They are discussing whether he needs the fundoplication to protect against future reflux, but haven't decided to do it (yet). They've just started wrapping up, which means it could still be a couple of hours, but he's done quite well to this point and things are going quicker than expected.
I'll post another update when he's out, probably after we've gone in to see him.
They've added the G-tube and are currently placing his intestines in their new location. They are discussing whether he needs the fundoplication to protect against future reflux, but haven't decided to do it (yet). They've just started wrapping up, which means it could still be a couple of hours, but he's done quite well to this point and things are going quicker than expected.
I'll post another update when he's out, probably after we've gone in to see him.
The Night Before
This will be the last post before surgery. I'll send a very quick update when we hear that he's out of the woods, then more details later. I wouldn't expect to hear anything until late afternoon, and even then don't worry if I'm late.
Jul 19, 2007
Morning Update
Shortly after we left the hospital yesterday, as the nurse's shift change was going on, Andrew apparently had another "incident" that was worse than most of his recent tantrums. He was doing his normal thing, screaming without sound and flailing his limbs, when they decided to change his position just a bit to see if he would improve. That really freaked him out, and he decided to desaturate and drop his pulse below 100. Luckily the doctor and nurses were already there, moving him, so he was like that for only a very short period, while they took him off the vent and "bagged him" to have better control over his breathing. Both his pulse and his oxygen saturation recovered quickly after that (within a minute) and he was okay. With that short of a problem, there's no permanent damage done, but they definitely want to keep an eye on him. The surgeon came back to check on him, the doctor is spending a little more time with him, and he seems to be fine since then. He got a little fussy just before I called at 2am last night, but his nurse this morning says he has been quiet ever since.
There's no change in the schedule for surgery...unless they suspect something that needs immediate attention, it'll still be tomorrow morning. The nurses have free rein to keep him comfortable (his morphine schedule has been increased), and we don't expect any pain he's having to continue past the surgery. He's not actually getting less healthy or more upset in general, he just happened to have a bad night. We still believe that the surgery isn't required right now, but we are definitely looking forward to next week, after he has a couple of days to recover post-operatively.
There's no change in the schedule for surgery...unless they suspect something that needs immediate attention, it'll still be tomorrow morning. The nurses have free rein to keep him comfortable (his morphine schedule has been increased), and we don't expect any pain he's having to continue past the surgery. He's not actually getting less healthy or more upset in general, he just happened to have a bad night. We still believe that the surgery isn't required right now, but we are definitely looking forward to next week, after he has a couple of days to recover post-operatively.
Surgery Details
The surgery will be approximately what we were expecting when we first heard about the bowel obstruction on Tuesday, but here are some more specifics. After talking to the doctor, he's relatively sure that the issue is something called Ladd's bands, which are bands of tissue attaching the large intestine to the abdominal wall. With diaphragmatic hernia patients, this attachment happens in the wrong place, because the organs form in the wrong location. In their new location, they obstruct the duodenum, which is the first portion of the small intestine, just below the stomach. This causes bile to move up into the stomach and prevents any food from progressing through the digestive system. This can happen with any child that has malrotation, which is almost always present in hernia patients, but is also common (1 in 500) in other children. Malrotation and Ladd's bands are so common that there is a by-the-book solution that almost always fixes the issue. Here's the process:
The surgery will take a long time, due to the sheer number of tasks and the complexity of the bowel. We'll get more details from the surgeon on Friday morning and I'll try to post updates whenever I know anything, but we're probably looking at late Friday afternoon before we know how it went.
- Make an incision in the abdomen. Unfortunately, the location of Andrew's first scar isn't a good place for this sort of procedure, so he will likely get a new incision down his midline, from just below his solar plexus to just above his navel.
- Identify the Ladd's bands and cut through them to detach them from the abdominal wall.
- Remove the appendix. Because of the next step, an existing appendix would be misplaced and would confuse any future doctors trying to diagnose appendicitis.
- Re-pack the intestines into the abdomen in a manner that prevents similar problems from reoccurring. The small intestine goes on the right side, and the large intestine goes on the left.
- Place a gastrostomy tube in the stomach. This is a simple addition (small slice and insert) that will allow us the maximum flexibility when it comes time to attempt feedings again. He can be fed orally, then given any additional nutrition he needs through the G-tube.
- Close him up.
The surgery will take a long time, due to the sheer number of tasks and the complexity of the bowel. We'll get more details from the surgeon on Friday morning and I'll try to post updates whenever I know anything, but we're probably looking at late Friday afternoon before we know how it went.
Jul 18, 2007
Shout Out
Andrew would like to give a shout out to his great-grandma H, who knows what he's going through.
Emotionally Drained
Today was not a fun day.
When we arrived at the hospital, Andrew was awake, alert, and peaceful. He looked very cute and very curious, staring intently at his mobile, then at our faces after we arrived. He held my finger and stared at me for a long time, with a lot of personality in his face. The nurse told us that he had just calmed down after two hours of crying, fussiness, and general distress...blood pressure up, oxygenation down. He was good for a long while, then he got fussy again. Eventually he got into a pattern where he would go nuts every ten minutes or so, attempting to scream, flailing his legs and arms, and turning red. He'd calm down temporarily, then start the whole process over again. For the most part, his numbers were all reacting in a healthy manner...they dropped, but rebounded pretty well when he was done...the nurses also gave him a little more oxygen when he was in the middle of a tantrum.
If this process had happened once or twice, it would have been okay. Unfortunately, it happened many times. They had given him three doses of Ativan and three doses of morphine, though they had mostly weaned him off of both. The drugs didn't seem to be giving him a whole lot of comfort, though eventually the morphine took the edge off. In addition, he vomited a few times, prompting them to readjust his NG tube so they'd get better suction. That worked, but then the tube was full of saliva and bile...these incidents just served to reinforce the fact that he definitely has an intestinal blockage.
With his additional distress, the doctors became a little more concerned. They called the surgeon for a consult, and spent a lot of time with him to make sure nothing was seriously wrong. Fortunately, their examinations didn't suggest that he has an emergent condition, and they are content to wait until the appropriate time for his surgery. After talking to all of them, I felt quite a bit better. Some of the scarier possibilities are very unlikely, Andrew's physical examination showed none of the warning signs (distended belly, low pH, lack of bowel sounds, etc), and he wasn't demonstrating what the surgeon called "surgery pain." Apparently, when there's an obstruction of the bowel that causes a disruption of blood flow, it doesn't matter how much morphine he's had...a push on his tummy would make him jump off the bed in pain. It's obvious that Andrew's belly is causing him a bit of pain, but he's closer to a normal baby with colic than he is to an emergency case.
The surgery is currently scheduled for Friday morning at 8:30. Until then, they will keep a close eye on him for any signs that he is having additional problems. They'll give him additional blood tests (they were down to every eight hours, instead of four), they'll examine his belly repeatedly, and they'll give him as much morphine as he needs to keep him comfortable from any tummyache. If anything looks out of the ordinary, they'll get him immediately to the operating room and get it taken care of....otherwise, Friday morning will be optimal. On Friday, a fully-prepared OR and two senior surgeons will be available for Andrew's operation.
More about the actual surgery later, but rest assured that Andrew is in very good hands, both with the doctors and nurses keeping an eye on him now, and with the surgeons doing the operation on Friday. Obviously we would rather keep scalpels away from him for the rest of his life, but this was a not-unexpected surgery and it will be good to get it out of the way. I am no more nervous for this than I would be for any surgery on my child, and I think it will solve problems rather than causing any further ones. When it's done, I hope Andrew's digestive progress will quickly be on par with his ventilator progress, which has been fabulous. They have paused all his settings in preparation for the surgery, but his numbers would ordinarily be weanable.
When we arrived at the hospital, Andrew was awake, alert, and peaceful. He looked very cute and very curious, staring intently at his mobile, then at our faces after we arrived. He held my finger and stared at me for a long time, with a lot of personality in his face. The nurse told us that he had just calmed down after two hours of crying, fussiness, and general distress...blood pressure up, oxygenation down. He was good for a long while, then he got fussy again. Eventually he got into a pattern where he would go nuts every ten minutes or so, attempting to scream, flailing his legs and arms, and turning red. He'd calm down temporarily, then start the whole process over again. For the most part, his numbers were all reacting in a healthy manner...they dropped, but rebounded pretty well when he was done...the nurses also gave him a little more oxygen when he was in the middle of a tantrum.
If this process had happened once or twice, it would have been okay. Unfortunately, it happened many times. They had given him three doses of Ativan and three doses of morphine, though they had mostly weaned him off of both. The drugs didn't seem to be giving him a whole lot of comfort, though eventually the morphine took the edge off. In addition, he vomited a few times, prompting them to readjust his NG tube so they'd get better suction. That worked, but then the tube was full of saliva and bile...these incidents just served to reinforce the fact that he definitely has an intestinal blockage.
With his additional distress, the doctors became a little more concerned. They called the surgeon for a consult, and spent a lot of time with him to make sure nothing was seriously wrong. Fortunately, their examinations didn't suggest that he has an emergent condition, and they are content to wait until the appropriate time for his surgery. After talking to all of them, I felt quite a bit better. Some of the scarier possibilities are very unlikely, Andrew's physical examination showed none of the warning signs (distended belly, low pH, lack of bowel sounds, etc), and he wasn't demonstrating what the surgeon called "surgery pain." Apparently, when there's an obstruction of the bowel that causes a disruption of blood flow, it doesn't matter how much morphine he's had...a push on his tummy would make him jump off the bed in pain. It's obvious that Andrew's belly is causing him a bit of pain, but he's closer to a normal baby with colic than he is to an emergency case.
The surgery is currently scheduled for Friday morning at 8:30. Until then, they will keep a close eye on him for any signs that he is having additional problems. They'll give him additional blood tests (they were down to every eight hours, instead of four), they'll examine his belly repeatedly, and they'll give him as much morphine as he needs to keep him comfortable from any tummyache. If anything looks out of the ordinary, they'll get him immediately to the operating room and get it taken care of....otherwise, Friday morning will be optimal. On Friday, a fully-prepared OR and two senior surgeons will be available for Andrew's operation.
More about the actual surgery later, but rest assured that Andrew is in very good hands, both with the doctors and nurses keeping an eye on him now, and with the surgeons doing the operation on Friday. Obviously we would rather keep scalpels away from him for the rest of his life, but this was a not-unexpected surgery and it will be good to get it out of the way. I am no more nervous for this than I would be for any surgery on my child, and I think it will solve problems rather than causing any further ones. When it's done, I hope Andrew's digestive progress will quickly be on par with his ventilator progress, which has been fabulous. They have paused all his settings in preparation for the surgery, but his numbers would ordinarily be weanable.
Just to Clarify
I just wanted to clarify that we don't know a specific time for the surgery, or whether he'll even need to have it. I'll post another entry as soon as we know for sure.
Doh!
OK, do you want the good news or the bad news? I'm certainly not waiting for poll results, so I'll just start with the good news.
The good news is that Andrew had a great night last night. His gases were good, his saturations were stable even when he was fussy, and they weaned him down to 10 breaths per minute on the vent and 27% oxygen. Those are very minimal settings, and the doctor was seriously considering extubating him either today or tomorrow. The reason she didn't go through with it...that would be the bad news.
The bad news is that they are concerned about his digestive tract. Though the feedings had worked in the past, in the last couple of days they've been completely unsuccessful and resulted in significant residuals. Worse, his vomiting yesterday made them think there may be some new obstruction. This morning they did an upper GI study, where they pour barium into his stomach and follow its progress with a special scope. They found that nothing progressed much past the bottom of the stomach or upper small intestine (duodenum). This result, coupled with bile in his vomit yesterday, leads them to believe that he probably has a kink in his small intestine that probably will need to be fixed surgically. The need for additional surgeries was somewhat expected, but this came upon us somewhat suddenly.
The details. The doctor, the radiologist, and the surgeon are meeting to discuss Andrew's case and move forward on a course of action. There is a very good chance of surgery, and that surgery would probably take place soon, on either Wednesday or Thursday. During the operation, the surgeon would attempt to kill several birds with one stone. First, fix the kink in his intestine. Second, fix any malrotation of his bowels by laying them carefully in place. Third, possibly place a gastric tube while they have the opportunity, as an alternative method for feeding. The full extent of the surgery won't be known until they get inside, as there are a few items that could possibly complicate things (Ladd's bands, intestinal damage, appendix placement, or blood flow issues).
Though we of course want Andrew to have to undergo as few stressful procedures as possible, this may be a necessary treatment and our number one priority is his continuing health. The doctor is confident that he is absolutely stable enough to get through this with no problems, and we have already seen the surgeon's great work. If this will solve most of his digestive problems, then we are fully behind it and looking forward to Andrew's recovery.
The good news is that Andrew had a great night last night. His gases were good, his saturations were stable even when he was fussy, and they weaned him down to 10 breaths per minute on the vent and 27% oxygen. Those are very minimal settings, and the doctor was seriously considering extubating him either today or tomorrow. The reason she didn't go through with it...that would be the bad news.
The bad news is that they are concerned about his digestive tract. Though the feedings had worked in the past, in the last couple of days they've been completely unsuccessful and resulted in significant residuals. Worse, his vomiting yesterday made them think there may be some new obstruction. This morning they did an upper GI study, where they pour barium into his stomach and follow its progress with a special scope. They found that nothing progressed much past the bottom of the stomach or upper small intestine (duodenum). This result, coupled with bile in his vomit yesterday, leads them to believe that he probably has a kink in his small intestine that probably will need to be fixed surgically. The need for additional surgeries was somewhat expected, but this came upon us somewhat suddenly.
The details. The doctor, the radiologist, and the surgeon are meeting to discuss Andrew's case and move forward on a course of action. There is a very good chance of surgery, and that surgery would probably take place soon, on either Wednesday or Thursday. During the operation, the surgeon would attempt to kill several birds with one stone. First, fix the kink in his intestine. Second, fix any malrotation of his bowels by laying them carefully in place. Third, possibly place a gastric tube while they have the opportunity, as an alternative method for feeding. The full extent of the surgery won't be known until they get inside, as there are a few items that could possibly complicate things (Ladd's bands, intestinal damage, appendix placement, or blood flow issues).
Though we of course want Andrew to have to undergo as few stressful procedures as possible, this may be a necessary treatment and our number one priority is his continuing health. The doctor is confident that he is absolutely stable enough to get through this with no problems, and we have already seen the surgeon's great work. If this will solve most of his digestive problems, then we are fully behind it and looking forward to Andrew's recovery.
Jul 17, 2007
Some Harsh (Potential) Realities
I wrote this "downer" post a couple of days ago. I don't want to go back and edit it, so I'm posting as-is and then will update with today's status.
I've been blogging about Andrew's daily process for so long that I think I may have neglected the bigger picture. When we had a family conference with the doctor and social worker last week, we talked about some of the longer-term issues and timetables. I've also been doing a lot of research about the problems and recovery times that face children with diaphragmatic hernias, and I want to share some of them with you. This is not going to be a rosy picture, but I think preparing ourselves emotionally for some of the challenges he could face is a worthwhile task. If you don't want to listen to me being a downer, then skip this post.
First, let's talk about his time in the hospital. If we hear the phrase "Every baby is different" one more time, I think we may scream....but at the same time, it's absolutely true. As such, they can't really use his current progress to accurately predict when he'll be able to come home or how he'll do with the remaining tasks on his checklist. However, from what we've seen of his progress and what I've heard/read about the process in general, I think a realistic estimate would be between four and seven months (total) in the hospital. There is a (very tiny) chance that it could be sooner, and a (less tiny) chance that it could be longer. CDH (congenital diaphragmatic hernia) patients have been known to spend over a year in the hospital, especially those with cases as severe as Andrew's. His almost total lack of left-side diaphragm and his time on ECMO suggest it won't be a short stay, though he has fortunately shown no signs of any of the common defects that often go hand-in-hand with CDH. He has a healthy heart, healthy kidneys, and no chromosomal abnormalities that they know of...those all increase his likelihood of a quicker recovery. If Andrew is able to come home by Christmas, I'll be happy. If it's by my birthday, I'll be thrilled. If it's by his aunt's wedding, I'll be shocked. Unfortunately, if it's not until D's birthday, I wouldn't be completely surprised.
Going home from a case of CDH is really a checklist-style process. Here are the major points that I've come up with, though this is definitely an unofficial list:
Next, let's talk even longer-term. Andrew had CDH, he was on ECMO, his lungs are underdeveloped and hypertensive, and he will have been in the NICU for quite a while before he comes home. This combination of problems lends itself to some continuing, often life-long issues and side effects. Before I get into them, let me say that ALL of these are just possibilities. It is very possible that he could have NONE of these issues. However, they are common enough that they are worth mentioning...I won't go into the far less common (sometimes more serious) possibilities. I'm also not including anything that could be caused by complications that happen along the way.
The first and most common challenge will be feeding issues. Ninety-five percent of CDH patients have some feeding challenges, and I'm not vain enough to think my child will be an exception. Not only does this prolong the actual hospital stay, it also continues after coming home. He may have a gastric tube, requiring us to feed him by injecting food directly into his stomach. He will likely always have reflux issues, meaning he'll bring food back up more than most, and may potentially need medication as well. Alternatively, he may need surgery to create a valve in his stomach (numbers 14 and 15 above).
Andrew will also probably always have lung issues of one form or another. First, we're dealing with pulmonary hypertension that makes it more difficult to oxygenate blood. His saturations will never match those of a normal child (or even adult), as his nubbin will never completely fill his chest cavity and even the right lung isn't perfectly formed. We may have to take him home with an oxygen tank, giving him additional O2 through the nose. That oxygen may or may not need to be mixed with nitric oxide....if so, that would be an additional tank. We'll probably have to give him breathing treatments, and we'll have to worry every time he decides to get mad at us by holding his breath.
Andrew will be more susceptible to additional respiratory issues than most normal babies. The likelihood of asthma, pneumonia, or RSV (upper respiratory infection) will be both higher and more dangerous for him, as he won't have the reserves necessary to maintain his oxygenation. We'll actually worry about any viruses or infections, including staph infections and other blood-based versions. Allergies are a real possibility too, though I really hope he's not allergic to Willow.
We'll certainly be cautious with Andrew, especially for the first few years, to prevent any of the above respiratory issues. He'll have to stay away from crowds, avoid anyone that's sick, and generally dread cold and flu season. When people come over to visit, a long hand wash will be a requirement...pretend you're on ER and Dr. Kovac just told you to "scrub in." We'll probably buy stock in Purell hand sanitizer.
Next up are potential developmental issues. Any baby that's in the NICU for an extended period of time will likely be significantly behind in developmental milestones. We will go back to the hospital every six months to meet with a developmental specialist, test Andrew's abilities, and discuss his progress. His normal timetable won't be the same as any other kids his age, so we shouldn't expect the standard "walk at one, talk at two" scenarios. Other less obvious milestones also won't happen on schedule, so we'll learn to develop a whole new schedule for him. Generally, kids that are behind in the first couple of years can catch up and be in-line with their ages by the time they're teenagers, or even before. We hope that Andrew's size and genetics will be a positive influence on his physical and mental abilities, and we look forward to him winning the sixth grade spelling bee.
Now it's time for the scary stuff. I feel I have to mention these only because they're somewhat common in CDH patients, especially those that have been 1) without oxygen for any period of time, and 2) on ECMO. Hearing impairment is one possibility. I've read a "success story" where a CDH kid was completely normal after recovery, aside from being deaf. Most deficits are not this severe...mild hearing loss is much more common...and again, this is only a possibility. In one less-than-scientific survey, only 23 of 461 CDH patients had any hearing loss at all. The other scary possibility is cerebral palsy. This generally refers to any motor defect caused by damage to the brain. We don't know of ANY damage to Andrew's brain and there will be additional tests (CAT scan) before he is released. If there were damage, it would likely be minor and non-progressive, meaning that it wouldn't get worse over time. If CP reared its ugly head, the worst I would expect would be leg braces, mild spasms, or something similar. In the same survey I just mentioned, 24 of 461 CDH patients had some form of cerebral palsy.
Sorry to be such a downer, and I realize this post was FAR too long and perhaps too sad, but I wanted to get it out there. Probably the most important part is realizing that he'll be in the hospital for a while...I don't want anyone to expect a huge party in August/September. First, he's not supposed to be around groups. Second, I think a late autumn discharge is definitely more realistic.
I've been blogging about Andrew's daily process for so long that I think I may have neglected the bigger picture. When we had a family conference with the doctor and social worker last week, we talked about some of the longer-term issues and timetables. I've also been doing a lot of research about the problems and recovery times that face children with diaphragmatic hernias, and I want to share some of them with you. This is not going to be a rosy picture, but I think preparing ourselves emotionally for some of the challenges he could face is a worthwhile task. If you don't want to listen to me being a downer, then skip this post.
First, let's talk about his time in the hospital. If we hear the phrase "Every baby is different" one more time, I think we may scream....but at the same time, it's absolutely true. As such, they can't really use his current progress to accurately predict when he'll be able to come home or how he'll do with the remaining tasks on his checklist. However, from what we've seen of his progress and what I've heard/read about the process in general, I think a realistic estimate would be between four and seven months (total) in the hospital. There is a (very tiny) chance that it could be sooner, and a (less tiny) chance that it could be longer. CDH (congenital diaphragmatic hernia) patients have been known to spend over a year in the hospital, especially those with cases as severe as Andrew's. His almost total lack of left-side diaphragm and his time on ECMO suggest it won't be a short stay, though he has fortunately shown no signs of any of the common defects that often go hand-in-hand with CDH. He has a healthy heart, healthy kidneys, and no chromosomal abnormalities that they know of...those all increase his likelihood of a quicker recovery. If Andrew is able to come home by Christmas, I'll be happy. If it's by my birthday, I'll be thrilled. If it's by his aunt's wedding, I'll be shocked. Unfortunately, if it's not until D's birthday, I wouldn't be completely surprised.
Going home from a case of CDH is really a checklist-style process. Here are the major points that I've come up with, though this is definitely an unofficial list:
- Survive the first few days and stabilize for further care (may require ECMO).
- Successful surgery to repair the hernia and reposition his digestive organs.
- Successful removal from ECMO with no need for it to return.
- Recovery from surgeries (CDH and ECMO).
- Weaning from high settings on an oscillating vent to lower settings.
- Switching from a high-frequency ventilator to a conventional ventilator.
- Weaning to minimal settings on a conventional ventilator (standard oxygen levels, minimal machine-induced breaths)
- Weaning from high levels of nitric oxide to lower levels, and eventually to none.
- Extubation from the ventilator.
- Demonstration of continued stability without advanced life support methods (ventilator).
- Successful feedings of small amounts of milk through a nasogastric tube.
- Successful feedings of larger amounts using NG tube.
- Successful oral feeding of milk through a bottle.
- Successful surgeries (if required) to prevent gastric reflux and/or insert a gastric tube for direct feedings.
- Recovery from surgery and acclimation to new stomach valve and/or feeding method.
- Discharge from hospital.
Next, let's talk even longer-term. Andrew had CDH, he was on ECMO, his lungs are underdeveloped and hypertensive, and he will have been in the NICU for quite a while before he comes home. This combination of problems lends itself to some continuing, often life-long issues and side effects. Before I get into them, let me say that ALL of these are just possibilities. It is very possible that he could have NONE of these issues. However, they are common enough that they are worth mentioning...I won't go into the far less common (sometimes more serious) possibilities. I'm also not including anything that could be caused by complications that happen along the way.
The first and most common challenge will be feeding issues. Ninety-five percent of CDH patients have some feeding challenges, and I'm not vain enough to think my child will be an exception. Not only does this prolong the actual hospital stay, it also continues after coming home. He may have a gastric tube, requiring us to feed him by injecting food directly into his stomach. He will likely always have reflux issues, meaning he'll bring food back up more than most, and may potentially need medication as well. Alternatively, he may need surgery to create a valve in his stomach (numbers 14 and 15 above).
Andrew will also probably always have lung issues of one form or another. First, we're dealing with pulmonary hypertension that makes it more difficult to oxygenate blood. His saturations will never match those of a normal child (or even adult), as his nubbin will never completely fill his chest cavity and even the right lung isn't perfectly formed. We may have to take him home with an oxygen tank, giving him additional O2 through the nose. That oxygen may or may not need to be mixed with nitric oxide....if so, that would be an additional tank. We'll probably have to give him breathing treatments, and we'll have to worry every time he decides to get mad at us by holding his breath.
Andrew will be more susceptible to additional respiratory issues than most normal babies. The likelihood of asthma, pneumonia, or RSV (upper respiratory infection) will be both higher and more dangerous for him, as he won't have the reserves necessary to maintain his oxygenation. We'll actually worry about any viruses or infections, including staph infections and other blood-based versions. Allergies are a real possibility too, though I really hope he's not allergic to Willow.
We'll certainly be cautious with Andrew, especially for the first few years, to prevent any of the above respiratory issues. He'll have to stay away from crowds, avoid anyone that's sick, and generally dread cold and flu season. When people come over to visit, a long hand wash will be a requirement...pretend you're on ER and Dr. Kovac just told you to "scrub in." We'll probably buy stock in Purell hand sanitizer.
Next up are potential developmental issues. Any baby that's in the NICU for an extended period of time will likely be significantly behind in developmental milestones. We will go back to the hospital every six months to meet with a developmental specialist, test Andrew's abilities, and discuss his progress. His normal timetable won't be the same as any other kids his age, so we shouldn't expect the standard "walk at one, talk at two" scenarios. Other less obvious milestones also won't happen on schedule, so we'll learn to develop a whole new schedule for him. Generally, kids that are behind in the first couple of years can catch up and be in-line with their ages by the time they're teenagers, or even before. We hope that Andrew's size and genetics will be a positive influence on his physical and mental abilities, and we look forward to him winning the sixth grade spelling bee.
Now it's time for the scary stuff. I feel I have to mention these only because they're somewhat common in CDH patients, especially those that have been 1) without oxygen for any period of time, and 2) on ECMO. Hearing impairment is one possibility. I've read a "success story" where a CDH kid was completely normal after recovery, aside from being deaf. Most deficits are not this severe...mild hearing loss is much more common...and again, this is only a possibility. In one less-than-scientific survey, only 23 of 461 CDH patients had any hearing loss at all. The other scary possibility is cerebral palsy. This generally refers to any motor defect caused by damage to the brain. We don't know of ANY damage to Andrew's brain and there will be additional tests (CAT scan) before he is released. If there were damage, it would likely be minor and non-progressive, meaning that it wouldn't get worse over time. If CP reared its ugly head, the worst I would expect would be leg braces, mild spasms, or something similar. In the same survey I just mentioned, 24 of 461 CDH patients had some form of cerebral palsy.
Sorry to be such a downer, and I realize this post was FAR too long and perhaps too sad, but I wanted to get it out there. Probably the most important part is realizing that he'll be in the hospital for a while...I don't want anyone to expect a huge party in August/September. First, he's not supposed to be around groups. Second, I think a late autumn discharge is definitely more realistic.
Here's Looking at You!
The nurses try to put his hands at his sides, but he likes to sprawl out with his arms spread wide.
This one is worth clicking on to see a larger version. I'm not sure exactly what he's able to comprehend at this point, but his gaze is really piercing.
Looking at mommy. You can see how well his scar is healing when viewed from above.
Breathe
Andrew had a mixed day today. On his ventilator, he did great. He's gotten down to ridiculously low levels in the last week...just amazing progress. He's at twelve breaths per minute, yet is keeping his respiratory rate in the 50's and continuing to have good saturations and good CO2 results. His current respirator will only go down to ten breaths per minute, so he'll soon hit a wall where they'll have to wean him on other settings, switch to a more advanced conventional ventilator, or extubate him. He's still on 10 parts per million of nitric oxide, so there's plenty of room to come down there. On his inhaled oxygen, they had him down to 27 today, only six percent above normal room air. Being able to breathe normal air is of course the eventual goal, so that's a great step forward.
There were two tiny setbacks today, because having all good news would make our brains explode. First, it seems like his fussiness is getting a bit more violent, and how he manages it seems to depend on what he's feeling like at the time. Much of the time we were there, he was alert and happy, with his eyes open and looking around, but with no noticeable concern. However, he had a few freak-outs that lowered his saturations and raised his blood pressure pretty significantly. While it's still great that he manages to recover quickly, they sometimes give him additional oxygen (by turning up the percentage) to help him stay stable. This is the sort of activity that will be much more difficult once he's extubated. So while the numbers above are fabulous, I feel like he needs to show some consistent stability (for a few days), even with anxious episodes, where he doesn't need any additional help from the nurses.
The other setback was digestive. They suspended feedings after last night's failed attempts, and today were simply sticking to the IV fluids/fats. During one of his "episodes," he managed to vomit, even with a tube down his throat. It was obvious from the color that it was from his stomach. The doctors and nurses want to control all fluids going in and out of his stomach using the nasogastric tube, to prevent accidental aspiration (breathing) of acidic stomach juices. Since he can't cough or swallow on his own, he's at higher risk for this issue, which could cause damage to vital lung tissues. If he were at home already, this would be the sort of thing we'd go to the emergency room for. Fortunately, he's already getting better care than any ER I know of, and they quickly suctioned his mouth and solved the problem. Though he was in no immediate danger, a subsequent X-ray didn't show anything wrong, and steps will be taken to insure this doesn't happen again any time soon, it was still termed an "acute episode" and presents just a little more for the doctors to worry about. It may change their feeding strategy moving forward, or make them more likely to think about surgical methods for solving this reflux problem.
When we got to the hospital this afternoon, Andrew's eyes were wide open. When I saw his vent settings, so were mine. It's probably a good thing that the day had some negatives, because otherwise I think I'd be setting myself up for some disappointment. We are preparing ourselves for a possible setback when his current course of steroids is complete, though I hope in general I can continue to report good news.
There were two tiny setbacks today, because having all good news would make our brains explode. First, it seems like his fussiness is getting a bit more violent, and how he manages it seems to depend on what he's feeling like at the time. Much of the time we were there, he was alert and happy, with his eyes open and looking around, but with no noticeable concern. However, he had a few freak-outs that lowered his saturations and raised his blood pressure pretty significantly. While it's still great that he manages to recover quickly, they sometimes give him additional oxygen (by turning up the percentage) to help him stay stable. This is the sort of activity that will be much more difficult once he's extubated. So while the numbers above are fabulous, I feel like he needs to show some consistent stability (for a few days), even with anxious episodes, where he doesn't need any additional help from the nurses.
The other setback was digestive. They suspended feedings after last night's failed attempts, and today were simply sticking to the IV fluids/fats. During one of his "episodes," he managed to vomit, even with a tube down his throat. It was obvious from the color that it was from his stomach. The doctors and nurses want to control all fluids going in and out of his stomach using the nasogastric tube, to prevent accidental aspiration (breathing) of acidic stomach juices. Since he can't cough or swallow on his own, he's at higher risk for this issue, which could cause damage to vital lung tissues. If he were at home already, this would be the sort of thing we'd go to the emergency room for. Fortunately, he's already getting better care than any ER I know of, and they quickly suctioned his mouth and solved the problem. Though he was in no immediate danger, a subsequent X-ray didn't show anything wrong, and steps will be taken to insure this doesn't happen again any time soon, it was still termed an "acute episode" and presents just a little more for the doctors to worry about. It may change their feeding strategy moving forward, or make them more likely to think about surgical methods for solving this reflux problem.
When we got to the hospital this afternoon, Andrew's eyes were wide open. When I saw his vent settings, so were mine. It's probably a good thing that the day had some negatives, because otherwise I think I'd be setting myself up for some disappointment. We are preparing ourselves for a possible setback when his current course of steroids is complete, though I hope in general I can continue to report good news.
Jul 16, 2007
Our Family Portrait
This is our first family portrait, but it probably requires some explanation. We bought a Nintendo Wii several months ago, and one of the things you can do is create representations of yourself called Mii's. D and I created our own, then created one for Andrew when she was about 6 months pregnant....we named him "Baby Ryan." You can share your Miis with friends that also have a Wii, which we did with a few people. The other day, while playing Wii Bowling, our friend K noticed that our little family was watching him bowl. A picture of the screen later, and here we are:
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