3/3/09
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.
2/28/09
Bobby Fought the Doctors and...
Bobby won! The docs put Bobby on a cpap machine yesterday to help keep his airways open. The contraption is a giant tube (sort of looks like a vacuum hose) that extends from the top of the forehead down his nose to where its inserted into his nostrils with prongs. He has a head covering around the back and top of his head to hold the hose in place, and straps that go from his ears to his nose to keep the prongs in place. Sound hideous? You betcha. Here's a photo from July with a much weaker Bobby on the cpap.
Bobby spent the night a) being sedated b) thrashing wildly to get the cpap out of his nose until he was sedated again. His nurse Cindy was amazingly patient with him, often needing 45 minutes or so to get the mask back in place. When I say thrashing, think of a greased feral cat trying to escape from a snuggle. And Bobby did all this with restraints on 1 leg and both arms.
I think the fight he put up means he's feeling much better. The doctors agreed this morning that he is feeling too healthy to expect him to tolerate this monstrosity. So now we have a nice oxygen cannula that Bobby doesn't mind a bit. So far his oxygen levels are a bit low - in the low 70s - but we won't have much to base a conclusion on until the sedation wears off and he's had a few hours to adjust to life without pressure being pumped into his lungs.
It seems that Bobby has learned one of the basic rules of Grunsted living - if at first you don't get your way, thrash around wildly until the people around you are so tired that they give in. It works in corporate America and it works in oxygen support discussions. I can certainly wait to see how it works during bed time negotiations.
Bobby spent the night a) being sedated b) thrashing wildly to get the cpap out of his nose until he was sedated again. His nurse Cindy was amazingly patient with him, often needing 45 minutes or so to get the mask back in place. When I say thrashing, think of a greased feral cat trying to escape from a snuggle. And Bobby did all this with restraints on 1 leg and both arms.
I think the fight he put up means he's feeling much better. The doctors agreed this morning that he is feeling too healthy to expect him to tolerate this monstrosity. So now we have a nice oxygen cannula that Bobby doesn't mind a bit. So far his oxygen levels are a bit low - in the low 70s - but we won't have much to base a conclusion on until the sedation wears off and he's had a few hours to adjust to life without pressure being pumped into his lungs.
It seems that Bobby has learned one of the basic rules of Grunsted living - if at first you don't get your way, thrash around wildly until the people around you are so tired that they give in. It works in corporate America and it works in oxygen support discussions. I can certainly wait to see how it works during bed time negotiations.
2/27/09
Tubes Out!
Bobby was successfully extubated this morning. He had his bronchoscopy around 7:30 am and they found some swelling and some aggravation to the vocal cords. The latter can cause scarring, which is obviously not good for the voice box, so Bobby gets some more antibiotics and a weekend hooked up to a the cpap machine. The cpap is an alternative to a nasal cannula - it provides him with oxygen support, and it blows pressure into his airway, keeping things clear so they can heal. He'll also get steroids to reduce the swelling. In a few weeks they will recheck the vocal cords - if they have scarred it will mean another surgery.
We got the results back from his MRI as well. This was to check to see if his crossed eye was a symptom of De Morsier syndrome, a horrible disease that impacts the central line of the brain, including the optic nerve and pituitary gland. He doesn't have that. His opthamologist also told us that he was a bit concerned that he might have had a tumor (glad that didn't come out in the original diagnosis). It turns out that Bobby has congenital nystagmus - it's what Dr. Yoon terms as being 'like a mole on his butt. He just has it because he has it." Of course they want to do surgery to correct. The correction will give Bobby a chance to develop stereo vision which will give him depth perception. I have a lazy eye and no depth perception, so it's not the end of the world...but it's just an outpatient surgery so we'll think about doing it. It can wait a few months, at least.
Finally, the ENT put in ear tubes while Bobby was sedated for the bronchoscopy. He had fluid in both ears. Bobby passed his newborn hearing test, but so far he hasn't passed another auditory test. He's had the wax cleaned out of his ears and the tubes put in, so we'll try the auditory test again in a couple of weeks. We know he hears - that's very apparent. But if he does have hearing loss, we want to get him a hearing aid as soon as possible to prevent speech delays.
It's been quite a day of mostly very good news. The weekend will hopefully be quiet as we give that airway time to rest. Monday we start work on feeds.
I used to think that Down Syndrome was just about developmental delays. I had no idea about the medical challenges that accompanied them. It takes a very strong heart to withstand all of this. I feel very blessed to have such a brave boy as my son.
We got the results back from his MRI as well. This was to check to see if his crossed eye was a symptom of De Morsier syndrome, a horrible disease that impacts the central line of the brain, including the optic nerve and pituitary gland. He doesn't have that. His opthamologist also told us that he was a bit concerned that he might have had a tumor (glad that didn't come out in the original diagnosis). It turns out that Bobby has congenital nystagmus - it's what Dr. Yoon terms as being 'like a mole on his butt. He just has it because he has it." Of course they want to do surgery to correct. The correction will give Bobby a chance to develop stereo vision which will give him depth perception. I have a lazy eye and no depth perception, so it's not the end of the world...but it's just an outpatient surgery so we'll think about doing it. It can wait a few months, at least.
Finally, the ENT put in ear tubes while Bobby was sedated for the bronchoscopy. He had fluid in both ears. Bobby passed his newborn hearing test, but so far he hasn't passed another auditory test. He's had the wax cleaned out of his ears and the tubes put in, so we'll try the auditory test again in a couple of weeks. We know he hears - that's very apparent. But if he does have hearing loss, we want to get him a hearing aid as soon as possible to prevent speech delays.
It's been quite a day of mostly very good news. The weekend will hopefully be quiet as we give that airway time to rest. Monday we start work on feeds.
I used to think that Down Syndrome was just about developmental delays. I had no idea about the medical challenges that accompanied them. It takes a very strong heart to withstand all of this. I feel very blessed to have such a brave boy as my son.
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