3/31/09
3/30/09
The Final Countdown
Well, we're almost there - we've almost made it through Bobby's first year of life. He was born 4/4/08 at 7:07 am and weighed 6 lbs and 12 oz. If that's not being born on a numerically lucky star, I don't know what is.
His at home recuperation is going great. He got partially weaned from his oxygen last Wednesday and I have high hopes that he will be off of it completely after his Wednesday check up with surgery.
He's gaining some weight after basically holding steady during his month in the hospital. The continuous feeds are awkward, but its so nice for him and us that he doesn't get sick all the time anymore. Some days he actually wears the same outfit all day. We met with his GI doctor last week who formally recommended a g-tube. We knew that was coming. Our big decision is around whether or not he gets a nissen fundoplication. This procedure tightens the sphincter that connects the stomach and the esophagus, preventing reflux. If not done well, it can also cause long term problems. We have a meeting with a surgeon later in April to discuss the pros and cons. The g-tube will hopefully come in May.
Therapy has slowly restarted. He's doing tummy time and some simple exercises to help him gain his strength back. He's siting up nicely in his booster chair.
We had some issues last week with him not sleeping well. Valerie and I each spent a couple of nights getting little to no sleep. The surgery APN told us that it was an adjustment issue with being out of the hospital, that he was used to the stimulation of being in the ICU. Whatever it was, it was wicked. Things are getting better on that front as he's back to sleeping until 6 or 7 am.
Bobby has also developed a very crabby side to his otherwise perfect disposition. He screams if he gets put down when he wants to be held. Really screams. Its the first time we've had to really grit our teeth and let him cry. I know it's normal. I just somehow hoped we'd get a pass on some of the normal parenting trials, given that we've had some unique ones to overcome. But, given who his parents are, there was really no chance we were going to bypass the development of an opinionated boy.
His at home recuperation is going great. He got partially weaned from his oxygen last Wednesday and I have high hopes that he will be off of it completely after his Wednesday check up with surgery.
He's gaining some weight after basically holding steady during his month in the hospital. The continuous feeds are awkward, but its so nice for him and us that he doesn't get sick all the time anymore. Some days he actually wears the same outfit all day. We met with his GI doctor last week who formally recommended a g-tube. We knew that was coming. Our big decision is around whether or not he gets a nissen fundoplication. This procedure tightens the sphincter that connects the stomach and the esophagus, preventing reflux. If not done well, it can also cause long term problems. We have a meeting with a surgeon later in April to discuss the pros and cons. The g-tube will hopefully come in May.
Therapy has slowly restarted. He's doing tummy time and some simple exercises to help him gain his strength back. He's siting up nicely in his booster chair.
We had some issues last week with him not sleeping well. Valerie and I each spent a couple of nights getting little to no sleep. The surgery APN told us that it was an adjustment issue with being out of the hospital, that he was used to the stimulation of being in the ICU. Whatever it was, it was wicked. Things are getting better on that front as he's back to sleeping until 6 or 7 am.
Bobby has also developed a very crabby side to his otherwise perfect disposition. He screams if he gets put down when he wants to be held. Really screams. Its the first time we've had to really grit our teeth and let him cry. I know it's normal. I just somehow hoped we'd get a pass on some of the normal parenting trials, given that we've had some unique ones to overcome. But, given who his parents are, there was really no chance we were going to bypass the development of an opinionated boy.
3/23/09
3/21/09
Hospital Recap
Bobby being home is a wonderful thing. He is doing very well and is very happy to be out of the hospital. Bobby loves to go out and its so nice to be able to take him places again. Between the surgery and the throwing up all the time pre-surgery, its been a while since we had a family day out. Today we went to Barnes and Noble and Target, made many purchases for the Bubs, and enjoyed our smiley, giggling boy very much.
It's very hard to digest what's happened in the last month. We certainly didn't expect the marathon that we got. It was a very scary time. It was a very trying time. I think my best bet is to let Bubsy himself speak to the difficulties he faced.
It's very hard to digest what's happened in the last month. We certainly didn't expect the marathon that we got. It was a very scary time. It was a very trying time. I think my best bet is to let Bubsy himself speak to the difficulties he faced.
3/19/09
3/18/09
Big Bob, Little Bobby
It's finally going to happen. 28 days after coming into the hospital for a 5-7 day procedure, Bobby is going home tomorrow. The oxygen tank and pulsox (also called a pulse oximeter) are sitting next to his bed, waiting for our departure. We've been trained to use both. After many phone calls, Valerie has arranged delivery of a large oxygen tank to our house tomorrow. The prescriptions are sent to the pharmacy. Bobby's had his discharge echocardiogram. His course of treatment has been cleared by cardiology, pulmonology, and ENT. We're going home.
So many people have helped get us here. The surgeons, countless nurses. Friends and family who have kept Valerie and I sane through this (or at least as sane as we were when we started out). I joke that Bobby is well on his way to being a million dollar baby. Better, I think, to judge the magnitude of what he's been through by how many thank yous we owe.
And among those who we owe a debt is a man who isn't with us anymore. My brother Bob - one of the men Bobby is named after - passed away in November from a brain tumor. I comforted myself when he left that Bobby may have lost his godfather, but he gained a guardian angel. Bob was a very gentle man, very strong in his faith, a man who never complained throughout his illness. He withstood brutal chemo even though the doctors gave him little chance of survival. Like Bobby, he endured blood clots, breathing tubes. In the end, even my brother's strength couldn't win out over the chemotherapy and cancer that ravaged his body. But his spirit remains.
Bobby has shown that same patience and strength throughout his stay in the hospital. No matter how much he is poked and prodded, he starts each day fresh, with a smile and a desire to love and be loved. As day 27 comes to an end he has every right to be fussy - he's had a tube dropped from his nose to his small intestine, he's been held down for an echo and an x-ray, he's had his blood pressure and chest listened to countless times. Instead, he's watching Sesame Street, content as can be.
In the world of Down Syndrome, I think it's easy to obsess about developmental milestones. At our last therapy assessment, the therapists agreed that Bobby's development was that of a 4 or 5 month old. I myself have used that language to describe his progress to doctors. But it's an unfair convention.
True, in his quest to sit up alone, to crawl, his progress is consistent with a typical 4 or 5 month old. But what about the development of the strength required to survive 2 heart surgeries? His patience with repeated medical intrusions? His forgiveness of all the things we've had to do to him to make him well? In those categories he's more than lived up to the legacy of my 50 year old brother, partly, I believe, because his uncle has been holding his hand throughout the ordeal, holding the boat steady while we crossed some rough waters.
So many people have helped get us here. The surgeons, countless nurses. Friends and family who have kept Valerie and I sane through this (or at least as sane as we were when we started out). I joke that Bobby is well on his way to being a million dollar baby. Better, I think, to judge the magnitude of what he's been through by how many thank yous we owe.
And among those who we owe a debt is a man who isn't with us anymore. My brother Bob - one of the men Bobby is named after - passed away in November from a brain tumor. I comforted myself when he left that Bobby may have lost his godfather, but he gained a guardian angel. Bob was a very gentle man, very strong in his faith, a man who never complained throughout his illness. He withstood brutal chemo even though the doctors gave him little chance of survival. Like Bobby, he endured blood clots, breathing tubes. In the end, even my brother's strength couldn't win out over the chemotherapy and cancer that ravaged his body. But his spirit remains.
Bobby has shown that same patience and strength throughout his stay in the hospital. No matter how much he is poked and prodded, he starts each day fresh, with a smile and a desire to love and be loved. As day 27 comes to an end he has every right to be fussy - he's had a tube dropped from his nose to his small intestine, he's been held down for an echo and an x-ray, he's had his blood pressure and chest listened to countless times. Instead, he's watching Sesame Street, content as can be.
In the world of Down Syndrome, I think it's easy to obsess about developmental milestones. At our last therapy assessment, the therapists agreed that Bobby's development was that of a 4 or 5 month old. I myself have used that language to describe his progress to doctors. But it's an unfair convention.
True, in his quest to sit up alone, to crawl, his progress is consistent with a typical 4 or 5 month old. But what about the development of the strength required to survive 2 heart surgeries? His patience with repeated medical intrusions? His forgiveness of all the things we've had to do to him to make him well? In those categories he's more than lived up to the legacy of my 50 year old brother, partly, I believe, because his uncle has been holding his hand throughout the ordeal, holding the boat steady while we crossed some rough waters.
1 More Day...but don't jinx it
Bobby had a pretty good night. His saturations went back up into the mid 70s to low 80s. So, the dip yesterday wasn't a harbinger of bad things to come. It did, however, guarantee that we're going home on oxygen. But we're going home...tomorrow they say.
On Bobby's first day in the ICU, they gave us a sheet that is taped to his bed during his stay. It asks for his name, his weight, and his likes and dislikes. We didn't have a lot to say...he likes You Are my Sunshine; he doesn't like things being put into his mouth.
A month later, we have a revised list.
Bobby likes:
Going home on time
Cannulas
Spraying on his nurses
Pooping all over the sheets
Eating without throwing up
Raspberrying and making dinosaur noises
Music Therapy
Being held
Being held
Being held
Going home on time
Bobby dislikes:
People that disrespect the 'hawk
CPAP machines
CPAP head gear stretched over ears that are newly tubed
CPAP machines
Sedatives that aren't serious
Being mocked
Teething the week after open heart surgery
Severe diaper rash the week after open heart surgery
Multiple intubations/extubations
Nurses who tell mama she doesn't know how to read the monitor
Doctors who tell mama she didn't try hard enough to get him a hearing test
Mamas hanging out in the room all night and ruining his nurse sugar time
Music cds that aren't "Country Western Lullabys"
People that disrespect the 'hawk
On Bobby's first day in the ICU, they gave us a sheet that is taped to his bed during his stay. It asks for his name, his weight, and his likes and dislikes. We didn't have a lot to say...he likes You Are my Sunshine; he doesn't like things being put into his mouth.
A month later, we have a revised list.
Bobby likes:
Going home on time
Cannulas
Spraying on his nurses
Pooping all over the sheets
Eating without throwing up
Raspberrying and making dinosaur noises
Music Therapy
Being held
Being held
Being held
Going home on time
Bobby dislikes:
People that disrespect the 'hawk
CPAP machines
CPAP head gear stretched over ears that are newly tubed
CPAP machines
Sedatives that aren't serious
Being mocked
Teething the week after open heart surgery
Severe diaper rash the week after open heart surgery
Multiple intubations/extubations
Nurses who tell mama she doesn't know how to read the monitor
Doctors who tell mama she didn't try hard enough to get him a hearing test
Mamas hanging out in the room all night and ruining his nurse sugar time
Music cds that aren't "Country Western Lullabys"
People that disrespect the 'hawk
3/17/09
26 days down, 2 more to go...maybe
After Bobby's fabulous yesterday, the doctors at morning rounds predicted a discharge date of Thursday. That was until Bobby spent the afternoon satting in the low 70s, down about 10 points from where he was over the weekend. Curses!
Only time will tell if this is something serious or if its simply the Bubs adjusting to being on much less oxygen support. He's been better tonight, giving me hope that its the latter.
Whatever Irish blood Bobby has (and its not much) is hopefully going to do its job tonight and keep him oxygenated. If it can't, the Polish and Norwegian hemoglobin in him is going to have to buck up and do the job.
Only time will tell if this is something serious or if its simply the Bubs adjusting to being on much less oxygen support. He's been better tonight, giving me hope that its the latter.
Whatever Irish blood Bobby has (and its not much) is hopefully going to do its job tonight and keep him oxygenated. If it can't, the Polish and Norwegian hemoglobin in him is going to have to buck up and do the job.
3/16/09
Still Getting Better
Today was a big day for Bobby. He had his bronchoscopy this afternoon to check to see if his airways and lungs have healed from his multiple intubations. And, the news was universally good. The damage is all but gone. He has no scarring on his vocal cords, meaning no surgery to correct tht in the future. He has no acid reflux damage, meaning that we won't need to get the gastric tube before we can go home. And, he got through the procedure without being intubated, meaning we avoid a setback in his recovery.
Now, we go about weaning him off of his oxygen support. After the bronchoscopy they got rid of his high flow. This is a special machine that, along with giving oxygen help, puts some positive pressure into his lungs. Essentially, it helps force some of the oxygen in. Bobby needs to be off of that before we can leave the hospital. So far, he's done quite well, His sats are in the high 70s, a bit lower than they were on the high flow, but that's to be expected.
Starting tomorrow they will work on weaning him off of the oxygen itself. We still don't know for sure if he will need oxygen when he goes home. At this point, it's something we'd willingly take on. My guess, based on nothing much, is that he'll need oxygen at night but will be OK during the day.
We will also go home on round the clock continuous feeds. He has an nj tube still - that's the tube that goes through his nose down to his small intestine. Continuous feeds are a pain because you have to constantly carry around the pump. If he pulls the tube out, we have to go to the emergency room to get it replaced. But, it is so nice to have a boy who doesn't throw up several times a day. It's really really nice. I mentioned to Nanny Beth today that Bobby seems gigglier now than even before the surgery. Her thoughts? "He's not throwing up all the time." Duh. So this is an issue that will need resolving sooner or later. We still might go to a g-tube. But at least we can take the time to consider our options instead of rushing to do this before we leave the hospital.
Another outstanding issue is that Bobby needs a hearing test. The test has to be done while he is sedated, which is obviously a bit tricky. The ENT wanted to do the test today, but after talking things through, the anesthesiologist questioned adding that procedure to the bronch. The bronch itself takes about 10 minutes, but Bobby needs to be heavily sedated and paralyzed during the procedure. Extending the anesthetic for the hearing test, which takes about an hour and a half, would mean almost certain intubation. If we come back to do the test in a few weeks, he'll still have to be sedated, but with much lighter medication that will not require him to have a breathing tube. Confusing? It was very confusing as the ENT, anesthesiologist, surgery APN, nurse, and Valerie and I hashed it out minutes before the procedure. The ENT felt like we were negating the importance of the hearing test; I was questioning why we were doing the bronch when the ENT said that there would be noticeable symptoms if the airway was causing the low saturations; the APN was disagreeing with that; Valerie and I disagreed about whether to do the hearing test, etc. So goes the parenting of a medically complex child.
Speaking of which, the ENT really ticked us off today. He kept saying that Bobby should have had a hearing test 4 months ago so that he could have had a hearing aid if necessary. First of all, Valerie tried multiple times to get him tested. Bobby failed two outpatient hearing tests attempted, and she went back and forth between audiology and ENT visits to resolve the issues, including his ear canals were too small for the test; he had wax build up; he needed ear tubes, etc. Second, hearing is obviously important. But there is a hierarchy of medical needs and a bad heart is number one on Bobby's list. Number two is throwing up several times a day. Number 3, hearing and sight. It really, really ticks me off to have this doctor judging us. Bobby has been in the hospital for over a fifth of his life. He passed the newborn hearing test. He very obviously hears us talking and hears music. So we made a decision not to aggressively pursue ears and eyes stuff until the heart condition was resolved. I understand that the doctor probably feels like we don't appreciate the importance of his specialty. I don't think he understands the challenges of parenting Bobby. (This is where I really would like to spend a few lines cursing, but I like this blog to be a family affair. Plus my mama told me once that only people who lack imaginations need to use curse words).
And anyway, did I mention that the bronch went really well today?
Now, we go about weaning him off of his oxygen support. After the bronchoscopy they got rid of his high flow. This is a special machine that, along with giving oxygen help, puts some positive pressure into his lungs. Essentially, it helps force some of the oxygen in. Bobby needs to be off of that before we can leave the hospital. So far, he's done quite well, His sats are in the high 70s, a bit lower than they were on the high flow, but that's to be expected.
Starting tomorrow they will work on weaning him off of the oxygen itself. We still don't know for sure if he will need oxygen when he goes home. At this point, it's something we'd willingly take on. My guess, based on nothing much, is that he'll need oxygen at night but will be OK during the day.
We will also go home on round the clock continuous feeds. He has an nj tube still - that's the tube that goes through his nose down to his small intestine. Continuous feeds are a pain because you have to constantly carry around the pump. If he pulls the tube out, we have to go to the emergency room to get it replaced. But, it is so nice to have a boy who doesn't throw up several times a day. It's really really nice. I mentioned to Nanny Beth today that Bobby seems gigglier now than even before the surgery. Her thoughts? "He's not throwing up all the time." Duh. So this is an issue that will need resolving sooner or later. We still might go to a g-tube. But at least we can take the time to consider our options instead of rushing to do this before we leave the hospital.
Another outstanding issue is that Bobby needs a hearing test. The test has to be done while he is sedated, which is obviously a bit tricky. The ENT wanted to do the test today, but after talking things through, the anesthesiologist questioned adding that procedure to the bronch. The bronch itself takes about 10 minutes, but Bobby needs to be heavily sedated and paralyzed during the procedure. Extending the anesthetic for the hearing test, which takes about an hour and a half, would mean almost certain intubation. If we come back to do the test in a few weeks, he'll still have to be sedated, but with much lighter medication that will not require him to have a breathing tube. Confusing? It was very confusing as the ENT, anesthesiologist, surgery APN, nurse, and Valerie and I hashed it out minutes before the procedure. The ENT felt like we were negating the importance of the hearing test; I was questioning why we were doing the bronch when the ENT said that there would be noticeable symptoms if the airway was causing the low saturations; the APN was disagreeing with that; Valerie and I disagreed about whether to do the hearing test, etc. So goes the parenting of a medically complex child.
Speaking of which, the ENT really ticked us off today. He kept saying that Bobby should have had a hearing test 4 months ago so that he could have had a hearing aid if necessary. First of all, Valerie tried multiple times to get him tested. Bobby failed two outpatient hearing tests attempted, and she went back and forth between audiology and ENT visits to resolve the issues, including his ear canals were too small for the test; he had wax build up; he needed ear tubes, etc. Second, hearing is obviously important. But there is a hierarchy of medical needs and a bad heart is number one on Bobby's list. Number two is throwing up several times a day. Number 3, hearing and sight. It really, really ticks me off to have this doctor judging us. Bobby has been in the hospital for over a fifth of his life. He passed the newborn hearing test. He very obviously hears us talking and hears music. So we made a decision not to aggressively pursue ears and eyes stuff until the heart condition was resolved. I understand that the doctor probably feels like we don't appreciate the importance of his specialty. I don't think he understands the challenges of parenting Bobby. (This is where I really would like to spend a few lines cursing, but I like this blog to be a family affair. Plus my mama told me once that only people who lack imaginations need to use curse words).
And anyway, did I mention that the bronch went really well today?
3/15/09
Better Every Day
Its a beautiful day here in Chicago and our mood is matching the temperature. Things are looking up for Bubsy as his saturations are creeping up into the high 70s and low 80s. He hasn't had a fever yet today. He's acting nearly as silly as his Mama Valerie.
3/14/09
Hospital Bounty
When I got sick as a little girl, my dad always came home from work with a present for me. The gift was something to entertain me while I was in bed - an activity book, a comic book, or once when I got car sick but waited to throw up until I was out of his car, he bought me a set of Trixie Belden mysteries. If getting car sick is worth a Trixie Belden mystery book, what is heart surgery worth? Well, take a look at the pictures on the left to see a portion of Bubsy's hospital booty. The pony is waiting in the parking lot for his discharge.
We've settled into a quieter routine. His saturations are mostly in the 70s and occasionally creep up into the 80s, where they ideally should be. And, they sometimes go down into the 60s and 50s where they should never be.
He's also been spiking high fevers once or twice a day. His blood has been cultured many times, his urine and poo and snot have all been tested and they still don't know what's causing the fevers.
He's having another bronchoscopy on Monday to see if he has some sort of infection from his multiple intubations. The other theory is that he is continuing to reflux, even though he's using a feeding tube that bypasses his stomach and sends formula directly to his small intestine. The reflux may be going into his lungs and preventing them from healing from the surgery and multiple intubations.
If this is the case we may get a g-tube. The feeding tubes that pass through his nose force the sphincter at the top of his stomach to stay open all of the time. A gtube which goes directly to his belly will allow the sphincter to close, and thus stop some or all of the reflux. There are also some more drastic versions - there is a g-j tube that is inserted into his small intestine. I'm not very excited about that because that would force us to keep Bobby on round the clock feeds for the long term (the intestines can't handle large portions of food at once so instead of eating meals, you have to do continuous feeds). Another option is something called a nissen fundoplication - this actually tightens the area at the top of the stomach, helping to slow the reflux.
We're open to the g-tube. Our main problem is that Bobby's GI doctor is at another hospital. The GI department at Children's has repeatedly proven themselves to be inefficient, incompetent, etc so we don't want to consult with them. But, Bobby can't leave Children's to get a consult somewhere else. It's awkward and frustrating that Children's allows this department to operate at a lower quality level than the rest of the hospital. We've worked with cardiology (obviously), ent, and opthamalogy and have been universally satisfied. So, we'll have to figure out a way to get ourselves satisfactorily informed before we make a feeding tube decision.
The good doctors in the ENT department that are doing the bronch on Monday are very efficient. They are combining the procedure with an audiology test. Bobby passed his newborn hearing test but hasn't been able to pass another test yet. The cause might be fluid build up that his ear tubes will take care of, but he might also have a hearing problem. That's common for kids with Ds. We know he hears some, we just need to find out if he needs a hearing aid. That will happen Monday.
In the meantime, we're having a quiet weekend. Bobby is napping now and Valerie and I are just hanging out. We left for lunch earlier and got caught up in a mass of St. Patrick's Day drunkards. That seems so surreal - this hospital life is all consuming. Fortunately, we were able to hop on Bobby's pony and escape the craziness.
We've settled into a quieter routine. His saturations are mostly in the 70s and occasionally creep up into the 80s, where they ideally should be. And, they sometimes go down into the 60s and 50s where they should never be.
He's also been spiking high fevers once or twice a day. His blood has been cultured many times, his urine and poo and snot have all been tested and they still don't know what's causing the fevers.
He's having another bronchoscopy on Monday to see if he has some sort of infection from his multiple intubations. The other theory is that he is continuing to reflux, even though he's using a feeding tube that bypasses his stomach and sends formula directly to his small intestine. The reflux may be going into his lungs and preventing them from healing from the surgery and multiple intubations.
If this is the case we may get a g-tube. The feeding tubes that pass through his nose force the sphincter at the top of his stomach to stay open all of the time. A gtube which goes directly to his belly will allow the sphincter to close, and thus stop some or all of the reflux. There are also some more drastic versions - there is a g-j tube that is inserted into his small intestine. I'm not very excited about that because that would force us to keep Bobby on round the clock feeds for the long term (the intestines can't handle large portions of food at once so instead of eating meals, you have to do continuous feeds). Another option is something called a nissen fundoplication - this actually tightens the area at the top of the stomach, helping to slow the reflux.
We're open to the g-tube. Our main problem is that Bobby's GI doctor is at another hospital. The GI department at Children's has repeatedly proven themselves to be inefficient, incompetent, etc so we don't want to consult with them. But, Bobby can't leave Children's to get a consult somewhere else. It's awkward and frustrating that Children's allows this department to operate at a lower quality level than the rest of the hospital. We've worked with cardiology (obviously), ent, and opthamalogy and have been universally satisfied. So, we'll have to figure out a way to get ourselves satisfactorily informed before we make a feeding tube decision.
The good doctors in the ENT department that are doing the bronch on Monday are very efficient. They are combining the procedure with an audiology test. Bobby passed his newborn hearing test but hasn't been able to pass another test yet. The cause might be fluid build up that his ear tubes will take care of, but he might also have a hearing problem. That's common for kids with Ds. We know he hears some, we just need to find out if he needs a hearing aid. That will happen Monday.
In the meantime, we're having a quiet weekend. Bobby is napping now and Valerie and I are just hanging out. We left for lunch earlier and got caught up in a mass of St. Patrick's Day drunkards. That seems so surreal - this hospital life is all consuming. Fortunately, we were able to hop on Bobby's pony and escape the craziness.
3/13/09
Bobby Update
Just a quick update before I start work. Life in Bubbyville is...stable. Its hard to say how much he's improved over the last couple of days, but he has definitely stopped getting worse. He's in a pattern where his oxygen saturations are mostly in the 70s and fall into the 60s during a predictable time (runs a fever, is sound asleep, or, as the nurse reported last night, right before there is a big explosion in the bed)
The most troubling issue is that he spikes high temps (102+) occasionally for no apparent reason. They've cultured his blood many times, but with no luck. Now he's on antibiotics, so its unlikely any culture will grow anyway.
He's getting another bronchoscopy on Monday to see if the issue might be that he's got an infection from being intubated so many times. They don't much expect to find anything, but its time to turn those unturned stones.
We are certainly starting to feel better. Bobby is a happy boy between his fevers and is ready to play. He's also recovered enough from his chest incision that he is enjoying being held again. Its a little slice of heaven to have him snuggle close. He is pure sugar.
The most troubling issue is that he spikes high temps (102+) occasionally for no apparent reason. They've cultured his blood many times, but with no luck. Now he's on antibiotics, so its unlikely any culture will grow anyway.
He's getting another bronchoscopy on Monday to see if the issue might be that he's got an infection from being intubated so many times. They don't much expect to find anything, but its time to turn those unturned stones.
We are certainly starting to feel better. Bobby is a happy boy between his fevers and is ready to play. He's also recovered enough from his chest incision that he is enjoying being held again. Its a little slice of heaven to have him snuggle close. He is pure sugar.
3/10/09
Life at the Hospital
Today is the first day since Bubsy went into the hospital that Valerie and I both worked. We have to - we can't afford to keep taking FMLA time. Nanny Beth manned the hospital. Words can't describe how fortunate we are to have someone like her that we trust to be there when we can't.
Valerie is off to the hospital now. I'm taking the night off as I was up most of last night with Bobby. He desatted into the 50s again. He threw up gastric juices (because the nj tube goes into his intestines, he has no formula to throw up). The doctor put him on antibiotics and upped his oxygen help. They tried to insert an IV for his antibiotics. As usual, they failed but only after riling up the baby. Today Bobby slept because, like mama, he was up most of last night.
One interesting thing - the respiratory therapist changed his high flow machine to something that the therapist claims 'works much better' than the one he had. Why have we been struggling to keep his sats up for days only now to find that there's is one that 'works much better'? Arghh. At leat we put an end to Bobby getting stuck for IVs and such - we've declared that there is no more sticking without the help of an ultrasound. Sweet Bubs looks like a pin cushion.
I'm hoping we'll fall into a new hospital routine. The doctors are saying Bobby will be there at least through next week. Personally, I think it could be 2-3 weeks after that before his lungs heal. So we have to figure out how to give him the attention he needs and still keep our jobs and, honestly, sleep enough. Not surprisingly, Valerie and I are both getting sick. There's just never enough time in the day.
Its interesting. Before we knew about Bobby's Ds/heart issues, I used to worry about how Bobby would be impacted by having 2 mamas. I joke that the first day I found out Bobby had Ds was the last day I worried about being a gay parent. Now, I'm just grateful that I'm going through this with a partner whom I trust to stand in with me and to support me when I need some propping up. I can't imagine doing this with anyone else.
Valerie is off to the hospital now. I'm taking the night off as I was up most of last night with Bobby. He desatted into the 50s again. He threw up gastric juices (because the nj tube goes into his intestines, he has no formula to throw up). The doctor put him on antibiotics and upped his oxygen help. They tried to insert an IV for his antibiotics. As usual, they failed but only after riling up the baby. Today Bobby slept because, like mama, he was up most of last night.
One interesting thing - the respiratory therapist changed his high flow machine to something that the therapist claims 'works much better' than the one he had. Why have we been struggling to keep his sats up for days only now to find that there's is one that 'works much better'? Arghh. At leat we put an end to Bobby getting stuck for IVs and such - we've declared that there is no more sticking without the help of an ultrasound. Sweet Bubs looks like a pin cushion.
I'm hoping we'll fall into a new hospital routine. The doctors are saying Bobby will be there at least through next week. Personally, I think it could be 2-3 weeks after that before his lungs heal. So we have to figure out how to give him the attention he needs and still keep our jobs and, honestly, sleep enough. Not surprisingly, Valerie and I are both getting sick. There's just never enough time in the day.
Its interesting. Before we knew about Bobby's Ds/heart issues, I used to worry about how Bobby would be impacted by having 2 mamas. I joke that the first day I found out Bobby had Ds was the last day I worried about being a gay parent. Now, I'm just grateful that I'm going through this with a partner whom I trust to stand in with me and to support me when I need some propping up. I can't imagine doing this with anyone else.
3/9/09
The Fever for the Flavor of Getting Discharged
Bobby had a very restless night here at the PICU, sleeping for a maximum of 2 hours at a stretch. In spite of another day of regular doses of Tylenol, he spiked another, more serious fever of 102.9 F this morning. The docs are running more cultures, and are still waiting on the results of the respiratory shell panel done yesterday. If it's bacterial, they'll treat it with antibiotics, if it's viral, we'll wait it out.
Meanwhile, Valerie spoke with both of the surgeons and the advanced practice nurse, and it looks more and more likely that Bobby will be coming home with an oxygen tank in tow. They all seem very calm about it, and try to reassure her that it's temporary until Bobby gets stronger. Dr Kaushal has been talking to some of his colleagues across the country because he can't understand why Bobby's sats continue to be low. His conclusion is that Bobby's Down Syndrome is getting in the way of his recovery from the heart surgery because Ds frequently results in the lungs being compromised in some way. So, with some short term oxygen help and more time to recover, the hope is things will improve.
While we might like more clarity, the fact is, its good that Bobby does not have any of the usual complications of this surgery. If his pulmonary pressures were high (the most logical explanation for low saturations), he'd potentially be sprouting collateral veins for the next couple of years. If the Glenn shunt wasn't well constructed, it would mean an extra open heart surgery this week. Because Bobby's low saturations have no clear cause, we have ample room to believe that the situation may resolve itself in a matter of weeks. Its just a challenge for Bobby's computer programmer and market researcher mamas to trade a clear diagnosis for blind faith.
Bobby needs to be weaned off high flow cannula before we can go home. Unlike a regular cannula, the high flow sends some positive pressure into his lungs, giving them a little extra oomph on the inhale. But, the weaning won't start in earnest until Bobby's virus/infection is better. The poor thing has been laying on a bed of ice packs today to keep cool and is much more comfortable than he was last night. Valerie and I just sit and wait.
In my opinion, the hardest part about hospital life is that, most of the time, it's mind numbingly boring and the boredom is only broken by moments of extreme stress while baby boy gets extubated or his sats fall into the 50s. We all have our ways of dealing with boredom - you may have noticed that I like to blog. Valerie spent her time yesterday doing the Hokey Pokey.
Meanwhile, Valerie spoke with both of the surgeons and the advanced practice nurse, and it looks more and more likely that Bobby will be coming home with an oxygen tank in tow. They all seem very calm about it, and try to reassure her that it's temporary until Bobby gets stronger. Dr Kaushal has been talking to some of his colleagues across the country because he can't understand why Bobby's sats continue to be low. His conclusion is that Bobby's Down Syndrome is getting in the way of his recovery from the heart surgery because Ds frequently results in the lungs being compromised in some way. So, with some short term oxygen help and more time to recover, the hope is things will improve.
While we might like more clarity, the fact is, its good that Bobby does not have any of the usual complications of this surgery. If his pulmonary pressures were high (the most logical explanation for low saturations), he'd potentially be sprouting collateral veins for the next couple of years. If the Glenn shunt wasn't well constructed, it would mean an extra open heart surgery this week. Because Bobby's low saturations have no clear cause, we have ample room to believe that the situation may resolve itself in a matter of weeks. Its just a challenge for Bobby's computer programmer and market researcher mamas to trade a clear diagnosis for blind faith.
Bobby needs to be weaned off high flow cannula before we can go home. Unlike a regular cannula, the high flow sends some positive pressure into his lungs, giving them a little extra oomph on the inhale. But, the weaning won't start in earnest until Bobby's virus/infection is better. The poor thing has been laying on a bed of ice packs today to keep cool and is much more comfortable than he was last night. Valerie and I just sit and wait.
In my opinion, the hardest part about hospital life is that, most of the time, it's mind numbingly boring and the boredom is only broken by moments of extreme stress while baby boy gets extubated or his sats fall into the 50s. We all have our ways of dealing with boredom - you may have noticed that I like to blog. Valerie spent her time yesterday doing the Hokey Pokey.
3/8/09
Up, Up & Away: Sats up, Fever up!
After a good night of oxygen saturations mostly in the 70's, Bobby woke up today having sweated through his bedsheets and with a fever of 101.5 F, in spite of doses of Tylenol every 4 hours. The doctors decided to run more tests, including RSV, flu and respiratory shell vial cultures. He tested negative for RSV (a huge relief and makes us feel like the monthly Synagis shots have paid off). However, we are now holed up in "isolation" until the results of the respiratory shell cultures, which will take several days to come back. What isolation means here at the PICU is that whenever someone enters Bobby's room, they have to don a bright yellow environmentally unfriendly/single use only isolation gown and mask, before entering, then dispose of it upon leaving the room. Needless to say, this can serve as a bit of a disincentive for our already motivationally challenged weekend nurse to come in and check on the Bubs when the alarms on the equipment go off (which they do about 100 times per day). Sigh.
As for the fever itself, it broke on its own in the afternoon. Bobby's been lethargic since yesterday (we'd thought yesterday it was due to the extubation). The doctors want to give Bobby some time to fight the infection on his own, without more drugs. This approach is fine by us, since he's had all sorts of antibiotics pumped into him since 2/19. He's sleeping now, so hopefully he'll be better able to regroup in the morning.
Mama A returns to work tomorrow, and is finally sleeping at home tonight. She went home at 11am, but started feeling the effects of Bobby withdrawal, so she came back for a few hours visit late afternoon. I'm up to bat for hospital duty tonight. Nanny Beth will be here bright and early tomorrow, and depending on how Bobby does overnight and what happens at morning rounds with the doctors, I may or may not work. We've learned to take things one day at a time in Bubsyville.
As for the fever itself, it broke on its own in the afternoon. Bobby's been lethargic since yesterday (we'd thought yesterday it was due to the extubation). The doctors want to give Bobby some time to fight the infection on his own, without more drugs. This approach is fine by us, since he's had all sorts of antibiotics pumped into him since 2/19. He's sleeping now, so hopefully he'll be better able to regroup in the morning.
Mama A returns to work tomorrow, and is finally sleeping at home tonight. She went home at 11am, but started feeling the effects of Bobby withdrawal, so she came back for a few hours visit late afternoon. I'm up to bat for hospital duty tonight. Nanny Beth will be here bright and early tomorrow, and depending on how Bobby does overnight and what happens at morning rounds with the doctors, I may or may not work. We've learned to take things one day at a time in Bubsyville.
3/7/09
Paradoxical Bubs
After spending the last few days inexplicably getting worse, today Bobby decided to do inexplicably well. The night was a little scary - his oxygen saturations fell into the 50s briefly and were mostly in the 60s. A week ago those rates were considered horrible, now they are acceptable. When Bobby's saturations are low, they do a blood gas test. This checks the amount of oxygen actually going to his organs and is the real indicator of whether he has a problem. Time has shown that Bobby does OK with those low sats. He turns blue, but his kidneys and such are not compromised.
He was extubated this morning with very little fanfare. Which was a nice surprise. And since then he has done really, really well. His oxygen saturation levels are mostly in the 70s and 80s. They have weaned him from breathing air that is 100% oxygen to air that is 30% oxygen (21% is the amount of oxygen in the air we typically breathe). He's started eating. He's had some long snuggles. Really, as far as afternoons in the hospital go, this was about perfect.
We're realistic that his saturations may start falling eventually, but we're also hopeful that the tide has started to turn. He's such a good boy.
He was extubated this morning with very little fanfare. Which was a nice surprise. And since then he has done really, really well. His oxygen saturation levels are mostly in the 70s and 80s. They have weaned him from breathing air that is 100% oxygen to air that is 30% oxygen (21% is the amount of oxygen in the air we typically breathe). He's started eating. He's had some long snuggles. Really, as far as afternoons in the hospital go, this was about perfect.
We're realistic that his saturations may start falling eventually, but we're also hopeful that the tide has started to turn. He's such a good boy.
3/6/09
Holy Crap, Part Due
Bobby desatted more over night, hanging out in the 60s for much of the time. He woke up with a fever above 101. We waited out the morning before the doctors decided it was safe to proceed with the catheterization. After some more oxygen saturations in the 60s they decided to go ahead.
And they found...absolutely nothing wrong. Which is good in most respects. The construction of the Glenn shunt is solid. He does not have pulmonary hypertension. He does not have collateral veins.
But that also means we have a boy who sometimes turns blue for a reason no one understands. The doctors are hopeful he will get better with no surgical intervention. But we don't know what that means - are we in the hospital days more, weeks more? Do we get sent home on oxygen? Is he going to turn blue until he has his second operation in 2 years? If the day care providers don't like a baby with a feeding tube, how will they like a baby that also occasionally turns blue?
Wow. Time to slow down, yes? So what's this weekend? He has a breathing tube in again so he needs to get extubated - hopefully tomorrow. And then we wait and see what happens. Maybe Bobby is just taking a long time to heal and he'll bounce back. No one knows. Not the cardiologists, not the surgeons.
But as an added bonus, his cardiologist just came into the room and announced that Bobby doesn't have a pulse in his right foot - left over problems from the catheter they put in his groin. So they are going to spread nitroglycerin paste on his leg to help the blood vessels dilate and to encourage the blood to flow on through.
And Valerie and I are starting to figure out what to do if this stay goes on for an extended period. I've been on FMLA the last 2 weeks but am going back to work Monday. Valerie planned to take vacation time off but maybe she won't. Maybe it's nanny Beth doing the day shift and Valerie and I trying to split nights. Like the doctors, we just don't know.
And they found...absolutely nothing wrong. Which is good in most respects. The construction of the Glenn shunt is solid. He does not have pulmonary hypertension. He does not have collateral veins.
But that also means we have a boy who sometimes turns blue for a reason no one understands. The doctors are hopeful he will get better with no surgical intervention. But we don't know what that means - are we in the hospital days more, weeks more? Do we get sent home on oxygen? Is he going to turn blue until he has his second operation in 2 years? If the day care providers don't like a baby with a feeding tube, how will they like a baby that also occasionally turns blue?
Wow. Time to slow down, yes? So what's this weekend? He has a breathing tube in again so he needs to get extubated - hopefully tomorrow. And then we wait and see what happens. Maybe Bobby is just taking a long time to heal and he'll bounce back. No one knows. Not the cardiologists, not the surgeons.
But as an added bonus, his cardiologist just came into the room and announced that Bobby doesn't have a pulse in his right foot - left over problems from the catheter they put in his groin. So they are going to spread nitroglycerin paste on his leg to help the blood vessels dilate and to encourage the blood to flow on through.
And Valerie and I are starting to figure out what to do if this stay goes on for an extended period. I've been on FMLA the last 2 weeks but am going back to work Monday. Valerie planned to take vacation time off but maybe she won't. Maybe it's nanny Beth doing the day shift and Valerie and I trying to split nights. Like the doctors, we just don't know.
3/5/09
Holy Crap
Bubs has taken another turn for the worst. His oxygen saturations have fallen back down into the 70s, and sometimes 60s and 50s. He spent the day getting tested.
This morning they did a bubble test to look for another collateral vein. They inject water into his veins. The water makes bubbles so they can track where its going. If the water shows up somewhere it doesn't belong, we know an unwanted vein took it there. Unfortunately, the central line in his chest was too old and the test didn't work. It was a struggle trying to get him to hold still for the cardiologist - he ended up getting an Ativan that knocked him out for about 7 hours. That was just as well as he later had to get a chest ultrasound, an xray, and a pic line in his groin.
The bubble test was horrible. The cardiologist running the test (let's call him Peter Koenig) was a jerk. Pre Ativan, when Bobby was crying and squirming he started to mock Bobby. "Wah-wah-wah, I know you don't like this. Wah-wah-wah." Now no one enjoys a well-timed mocking more than me, but an 11 month old who is upset about being held down by 3 adults is not really a prime target. When the cardiologist suggested we sedate Bobby, I asked for the ICU doctor first, because we do have a recent hideous history of sedation gone bad. "It's up to you," he said. "But I can't do a good test if he's moving around." "I understand," I told him. "I just want to slow down and think about what we're doing". He then proceeded to hold a piece of paper in front of my face and wave it up and down asking "Can you read this? This is what it's like for me trying to do this test while he's squirming?" It's sad when Bobby is the mature one in a patient-doctor interaction.
Later in the day after Bobby desatted into the 50s, I freaked out a bit. This Glenn surgery generally requires a 4-6 day stay afterwards. Now I knew it wouldn't be 6 days. Bubby can spend 6 days in the hospital with a hang nail. But I didn't expect that after 14 days our surgeon would tell us to expect another week. Puke. Part of me worries that this was all a horrible mistake. It's not logic talking, as I understand the options weren't many, but it's hard to deal with repeated setbacks.
They think that he has sprung another leak and has a collateral vein. However, these usually spring up when a baby has high pulmonary pressure. The high pressure creates resistance against the blood flowing to the lungs so the body takes the path of least resistance and creates a collateral that flows to the heart, where the pressure is low. Odd thing is, Bobby doesn't have high pulmonary pressure.
The surgeon, Dr. Kaushal, is as nice as the bubble test cardiologist is...well anti-nice. He took quite a bit of time discussing the options with us. The most likely scenario is that he'll have another catheterization Friday or Monday and get his collateral plugged. Then we'll hope he doesn't spring another leak. The surgeon said he is optimistic that Bobby will get through this with no further surgical interventions. The worst case, however, is one more operation where they place an additional shunt in the aorta (called a "modified BT shunt" procedure). The idea is that Bobby's sats are low because not enough blood is going to the lungs to get oxygenized. This operation borrows a little blood from the heart and sends it to the lungs, thus helping the oxygenization along. Of course, prior to the surgery we learned that, for Bobby, blood going from the heart to the lungs is bad and now it may be what he needs. Holy crap indeed.
This morning they did a bubble test to look for another collateral vein. They inject water into his veins. The water makes bubbles so they can track where its going. If the water shows up somewhere it doesn't belong, we know an unwanted vein took it there. Unfortunately, the central line in his chest was too old and the test didn't work. It was a struggle trying to get him to hold still for the cardiologist - he ended up getting an Ativan that knocked him out for about 7 hours. That was just as well as he later had to get a chest ultrasound, an xray, and a pic line in his groin.
The bubble test was horrible. The cardiologist running the test (let's call him Peter Koenig) was a jerk. Pre Ativan, when Bobby was crying and squirming he started to mock Bobby. "Wah-wah-wah, I know you don't like this. Wah-wah-wah." Now no one enjoys a well-timed mocking more than me, but an 11 month old who is upset about being held down by 3 adults is not really a prime target. When the cardiologist suggested we sedate Bobby, I asked for the ICU doctor first, because we do have a recent hideous history of sedation gone bad. "It's up to you," he said. "But I can't do a good test if he's moving around." "I understand," I told him. "I just want to slow down and think about what we're doing". He then proceeded to hold a piece of paper in front of my face and wave it up and down asking "Can you read this? This is what it's like for me trying to do this test while he's squirming?" It's sad when Bobby is the mature one in a patient-doctor interaction.
Later in the day after Bobby desatted into the 50s, I freaked out a bit. This Glenn surgery generally requires a 4-6 day stay afterwards. Now I knew it wouldn't be 6 days. Bubby can spend 6 days in the hospital with a hang nail. But I didn't expect that after 14 days our surgeon would tell us to expect another week. Puke. Part of me worries that this was all a horrible mistake. It's not logic talking, as I understand the options weren't many, but it's hard to deal with repeated setbacks.
They think that he has sprung another leak and has a collateral vein. However, these usually spring up when a baby has high pulmonary pressure. The high pressure creates resistance against the blood flowing to the lungs so the body takes the path of least resistance and creates a collateral that flows to the heart, where the pressure is low. Odd thing is, Bobby doesn't have high pulmonary pressure.
The surgeon, Dr. Kaushal, is as nice as the bubble test cardiologist is...well anti-nice. He took quite a bit of time discussing the options with us. The most likely scenario is that he'll have another catheterization Friday or Monday and get his collateral plugged. Then we'll hope he doesn't spring another leak. The surgeon said he is optimistic that Bobby will get through this with no further surgical interventions. The worst case, however, is one more operation where they place an additional shunt in the aorta (called a "modified BT shunt" procedure). The idea is that Bobby's sats are low because not enough blood is going to the lungs to get oxygenized. This operation borrows a little blood from the heart and sends it to the lungs, thus helping the oxygenization along. Of course, prior to the surgery we learned that, for Bobby, blood going from the heart to the lungs is bad and now it may be what he needs. Holy crap indeed.
3/4/09
11 Months Today
Today is Bobby's 11 month birthday. He celebrated by waking up at 4 am and raspberrying for a half hour. He spent the early morning rolling around in bed chewing his toes and then moved on to music therapy and a walk around the PICU. He's doing great.
We continue to wean him off of oxygen and work on keeping an increasingly active boy happy in the hospital. There are much, much worse problems.
I left him with his nanny Beth today and spent the day at home, sleeping until 3 pm. It was lovely. I'm still a little shell shocked from the sedation issues of the weekend and really needed the break. Hopefully this coming weekend our little family will be tucked into our house, enjoying spending time together with no doctor interuptions and no cords or poking and prodding.
We continue to wean him off of oxygen and work on keeping an increasingly active boy happy in the hospital. There are much, much worse problems.
I left him with his nanny Beth today and spent the day at home, sleeping until 3 pm. It was lovely. I'm still a little shell shocked from the sedation issues of the weekend and really needed the break. Hopefully this coming weekend our little family will be tucked into our house, enjoying spending time together with no doctor interuptions and no cords or poking and prodding.
3/3/09
Mamas Nerviosas
Bobby's getting closer and closer to coming home. He finally got some sleep last night and woke up in a happy (stoned) mood. He's on quite a bit of methadone at this point in time and we may go home with a small dose. He's slowly being weaned off of Precedex, his other sedative. But, overall, his system is much cleaner.
He's in his own sleeper this evening, being rocked in his stroller by Mama V. Today was the first day in a while that he really enjoyed being held and he got cuddled by mamas and nanny all. He had music therapy with a therapist who sang and played the guitar for him. Our music lover slowly scooted his way across his crib in an attempt to get his hands on the guitar. He loved it. He also had his first PT session since surgery where we learned some simple exercises to start rebuilding his strength. He did not love that, but he was a good sport.
They are finalizing his medicine regimen for home - I think we'll go home on Lasix to eliminate fluid retention, Viagra to help with pulmonary hypertension, Capopril for high blood pressure, and Prevacid and Zantac for GERD. Not that bad given what he's been through.
The nj tube is working out quite well. He's on full feeds without any reflux. Its going to be hard having to keep him hooked to the pump for 18 hours a day, but its only for a couple of weeks while his larynx heals from the intubation. Its nice to not have to deal with vomiting every feed. Very nice.
Its a lot to balance. So much that I had a little episode today where I got concerned that we'd been botching one of his treatments. He's supposed to wear an eyepatch for a couple of hours each day to correct the vision in his crossed eye (Mama V calls it pirate therapy) When he woke up this morning (stoned) both eyes were crossed, but the one that looked really bad was the supposed 'good eye'. I had a sinking feeling that we'd been doing pirate therapy on the wrong eye. Valerie sent a sheepish email to his opthamologist, who assured us we were on track. Just a case of too much to remember, I think. And Mamas being paranoid. We'll feel so much better when we get Bobby fitted for his bubble.
He's in his own sleeper this evening, being rocked in his stroller by Mama V. Today was the first day in a while that he really enjoyed being held and he got cuddled by mamas and nanny all. He had music therapy with a therapist who sang and played the guitar for him. Our music lover slowly scooted his way across his crib in an attempt to get his hands on the guitar. He loved it. He also had his first PT session since surgery where we learned some simple exercises to start rebuilding his strength. He did not love that, but he was a good sport.
They are finalizing his medicine regimen for home - I think we'll go home on Lasix to eliminate fluid retention, Viagra to help with pulmonary hypertension, Capopril for high blood pressure, and Prevacid and Zantac for GERD. Not that bad given what he's been through.
The nj tube is working out quite well. He's on full feeds without any reflux. Its going to be hard having to keep him hooked to the pump for 18 hours a day, but its only for a couple of weeks while his larynx heals from the intubation. Its nice to not have to deal with vomiting every feed. Very nice.
Its a lot to balance. So much that I had a little episode today where I got concerned that we'd been botching one of his treatments. He's supposed to wear an eyepatch for a couple of hours each day to correct the vision in his crossed eye (Mama V calls it pirate therapy) When he woke up this morning (stoned) both eyes were crossed, but the one that looked really bad was the supposed 'good eye'. I had a sinking feeling that we'd been doing pirate therapy on the wrong eye. Valerie sent a sheepish email to his opthamologist, who assured us we were on track. Just a case of too much to remember, I think. And Mamas being paranoid. We'll feel so much better when we get Bobby fitted for his bubble.
3/2/09
The Doctor said he had to go to Rehab
and Bobby says 'Thrash thrash thrash'. After the weekend debacle, the doctors settled on methadone to help Bobby get through this horrible time of no sleep. He slept a few hours here and there last night, but still struggles to stay asleep for more than 2 hours at a stretch.
The methadone will help with the sleep, plus it will help with any possible withdrawal effects from the Ativan, Chloral Hydrate, Versed, Tylenol with Codeine, Precedex, and Morphine that has been used to get the young man to sleep in the last few days. Getting Bubby to sleep is like trying to slay the Hydra.
He is better this evening (Bobby, not the Hydra) Right now Valerie and I are huddled in his pitch black room, exchanging Yahoo! instant messages and hoping we don't hear any telltale grunts or moans that signal an awakening.
If we get this ironed out, I expect we'll be close to going home. They are starting to get his take home meds sorted out and we'll get his feeding schedule under control in the next couple of days.
Oh, it's been brutal here since Saturday. I'm not the kind of person that can handle a crying baby for hours on end. I've had to take many a hallway break to keep my composure. I yelled at a nurse last night for waking up Bobby to do an assessment. But I'm hopeful that the methadone is going to keep him comfortable tonight and we'll all get some sleep. If we do, I expect to see a happy Bubs in the morning.
The methadone will help with the sleep, plus it will help with any possible withdrawal effects from the Ativan, Chloral Hydrate, Versed, Tylenol with Codeine, Precedex, and Morphine that has been used to get the young man to sleep in the last few days. Getting Bubby to sleep is like trying to slay the Hydra.
He is better this evening (Bobby, not the Hydra) Right now Valerie and I are huddled in his pitch black room, exchanging Yahoo! instant messages and hoping we don't hear any telltale grunts or moans that signal an awakening.
If we get this ironed out, I expect we'll be close to going home. They are starting to get his take home meds sorted out and we'll get his feeding schedule under control in the next couple of days.
Oh, it's been brutal here since Saturday. I'm not the kind of person that can handle a crying baby for hours on end. I've had to take many a hallway break to keep my composure. I yelled at a nurse last night for waking up Bobby to do an assessment. But I'm hopeful that the methadone is going to keep him comfortable tonight and we'll all get some sleep. If we do, I expect to see a happy Bubs in the morning.
3/1/09
Mamas Fought the Doctors and...
Mamas won. Today was a very long day. Bobby hardly slept last night, from a combination of being too tired, hunger, teething, etc. That continued into this morning. And into this afternoon. And into this evening.
The doctors wanted to postpone feeding Bobby until tomorrow (he's been exclusively IV fed since Wednesday) but we thrashed around until we got our way. The concern is that Bobby will reflux and cause further damage where his laranyx is already hurt from the breathing tube. So, they put in an NJ (nasojejeunal) tube. Unlike his regular NG (nasogastric) feeding tube that goes nostril to tummy, this one actually goes into the beginning of the small intestine. Bypassing the tummy means avoiding reflux. It's not a great solution long term because it requires continuous feeds 18-24 hours a day and if he pulls the tube out at home we have to go the emergency room to get it reinserted. But it will hopefully give him some help now. The biggest fear is that being fed into the intestine won't take away his tummy's hunger pains. Sometimes that happens. We'll see.
We also got them to give him some sedation. Bobby is the kind of baby that does not tire himself out. He just gets more and more and more agitated. And the hospital setting is the worst place to try to comfort him. We can hardly hold him because he has so many wires poking out, and the way he likes to be held (on our shoulder) is out because his chest needs to heal from surgery. If we do get him calm then someone upsets the apple cart by examining him. So we got some drugs. They aren't a miracle cure - they only last a couple of hours, but at least we get to take a breath before the next round. Valerie was here last night while I went home, but I've already warned her that I'm not feeling so selfless tonight - I think we're going to need to take shifts.
So it's been a rough day in all these respects, but we haven't lost sight of the main thing - the reason Bobby is so crabby is because he's much, much better and is ready to get home and get back to normal. From his mouth to God's ears.
The doctors wanted to postpone feeding Bobby until tomorrow (he's been exclusively IV fed since Wednesday) but we thrashed around until we got our way. The concern is that Bobby will reflux and cause further damage where his laranyx is already hurt from the breathing tube. So, they put in an NJ (nasojejeunal) tube. Unlike his regular NG (nasogastric) feeding tube that goes nostril to tummy, this one actually goes into the beginning of the small intestine. Bypassing the tummy means avoiding reflux. It's not a great solution long term because it requires continuous feeds 18-24 hours a day and if he pulls the tube out at home we have to go the emergency room to get it reinserted. But it will hopefully give him some help now. The biggest fear is that being fed into the intestine won't take away his tummy's hunger pains. Sometimes that happens. We'll see.
We also got them to give him some sedation. Bobby is the kind of baby that does not tire himself out. He just gets more and more and more agitated. And the hospital setting is the worst place to try to comfort him. We can hardly hold him because he has so many wires poking out, and the way he likes to be held (on our shoulder) is out because his chest needs to heal from surgery. If we do get him calm then someone upsets the apple cart by examining him. So we got some drugs. They aren't a miracle cure - they only last a couple of hours, but at least we get to take a breath before the next round. Valerie was here last night while I went home, but I've already warned her that I'm not feeling so selfless tonight - I think we're going to need to take shifts.
So it's been a rough day in all these respects, but we haven't lost sight of the main thing - the reason Bobby is so crabby is because he's much, much better and is ready to get home and get back to normal. From his mouth to God's ears.
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