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.
3/7/09
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.
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