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.
2/26/09
Bobby 'Bob Dole' Grunsted
Well, Bobby's on Viagra. Along with its more popularly known use, Viagra is excellent at controlling pulmonary hypertension. High pressure in the lungs reduces the rate of blood flow and lowers oxygen levels. Two days into his Viagra usage, Bobby is saturating in the mid 80s, which is just where we want him to be. (Note: technically, pulmonary hypertension is a very serious, irreversible condition that is fatal in a few years. Bobby doesn't have that. He has high pressure in his lungs that he will grow out of.)
Its our seventh day in the hospital, so we quite appropriately had a day of rest. Except for an MRI, we have hung out in the room and slept most of the day. Bobby's vital signs have been excellent so its been a nice day. Nanny Beth spent the day with us so Bobby had an admirer/playmate and I got a lot of extra rest.
Tomorrow morning is our next try at extubation. This will happen in the operating room this time, with ENT doctors there to assess any issues. Hopefully the swelling in his airways has gone down and he won't have the same issues as last time. I'm anticipating the whole thing with a mixture of high hopes and nausea.
Valerie met the grandpa of our ICU suite mate last night. She is the little girl that shares a wall with us. One year old Alejandra is the 2nd person in Illinois to receive a Berlin heart, an artificial heart that will hopefully keep her safe until she can receive a transplant. Might be that Bobby is soaking up a little bravery from Alejandra, she's survived a lot already. Her grandfather is visiting from Guadalajara, Mexico - he has moved into the hospital over the last few months to look over her while the parents work and take care of the rest of the family. Hopefully Valerie and I can soak up a little of the love and patience that takes.
Here's a few pictures of Bobby from yesterday. The monitor is more riveting than any TV show - I stare at it constantly. It gives his heart rate, respiratory rate, oxygen saturation, arterial blood flow, central veinous pressure, and blood pressure. Keeping him stable is the constant juggling of all those readings in their appropriate range. It's Mama A's 'stories'.
The drawing on the glass door is a depiction of the work done during the cardiac catheterization. The cardiologist gave an ad hoc lecture to the fellow on the door of Bobby's room. I'd explain it, but the procedure is fairly self evident once you see the diagram ;-)
Its our seventh day in the hospital, so we quite appropriately had a day of rest. Except for an MRI, we have hung out in the room and slept most of the day. Bobby's vital signs have been excellent so its been a nice day. Nanny Beth spent the day with us so Bobby had an admirer/playmate and I got a lot of extra rest.
Tomorrow morning is our next try at extubation. This will happen in the operating room this time, with ENT doctors there to assess any issues. Hopefully the swelling in his airways has gone down and he won't have the same issues as last time. I'm anticipating the whole thing with a mixture of high hopes and nausea.
Valerie met the grandpa of our ICU suite mate last night. She is the little girl that shares a wall with us. One year old Alejandra is the 2nd person in Illinois to receive a Berlin heart, an artificial heart that will hopefully keep her safe until she can receive a transplant. Might be that Bobby is soaking up a little bravery from Alejandra, she's survived a lot already. Her grandfather is visiting from Guadalajara, Mexico - he has moved into the hospital over the last few months to look over her while the parents work and take care of the rest of the family. Hopefully Valerie and I can soak up a little of the love and patience that takes.
Here's a few pictures of Bobby from yesterday. The monitor is more riveting than any TV show - I stare at it constantly. It gives his heart rate, respiratory rate, oxygen saturation, arterial blood flow, central veinous pressure, and blood pressure. Keeping him stable is the constant juggling of all those readings in their appropriate range. It's Mama A's 'stories'.
The drawing on the glass door is a depiction of the work done during the cardiac catheterization. The cardiologist gave an ad hoc lecture to the fellow on the door of Bobby's room. I'd explain it, but the procedure is fairly self evident once you see the diagram ;-)
2/25/09
Rough Day
Bobby had a hard time stabilizing over night. The nurses were on the phone with his surgeon most of the evening, trying to find the combination of medications and mechanical interventions to keep his blood pressure, oxygen saturation, and heart rate on track. They succeeded around 11 pm and we had a good night from there.
He was extubated this morning. (Extubate = removal of Bobby's breathing tube). Or at least, they tried to extubate him. His airway was swollen from having had the tube inserted twice in just a few days. It was so swollen that he couldn't push air in or out.
It was very scary. Nanny Beth and I were watching from the glass window that separates his room from the hallway. Valerie was home working because he'd been so stable that we didn't think we both needed to be here. I saw his oxygen saturation fall to 39%, which is a crazy low number. Then we had to leave the area completely because they didn't want us there for the reintubation (re-insertion of the breathing tube).
We stood outside of the ICU, waiting. His room is next to the ICU entrance, so I could sneak peeks as people walked in and out of the door. A crash cart showed up. Multiple nurses and doctors showed up. Very scary, so rather than go crazy, I walked a few paces down the hall where I couldn't see all that commotion.
Then, while Beth was finding a phone to call Valerie, a woman who I knew to be a social worker walked up to me in the hallway. She introduced the person with her - the chaplain on call. I freaked out. The stupid social worker held my arm, asking if I was alright and asking what they could do. After a long paus, I blurted out, "did he die?". They looked puzzled. Apparently they automatically get paged when additional staff are called to the room. "Don't do that," I told them. "Why did you get called? Is he in serious shape?" The chaplain managed to exit gracefully. I wanted to slap the social worker.
In a few very long minutes the APN came out and told us that the reintubation was successful. They are confident that the issue was the swelling caused by the tube, not a problem with the his lung or heart function. He had an echo to confirm this later in the day.
So, we're back on the tube. This time its down his nose, which lets him put stuff in his mouth and overall seems more comfortable. He's on steroids for at least 24 hours and the new extubation will be tomorrow or, more likely, Friday.
This time, they are going to have an ENT present to take a look at his airways. Besides the swelling, the upper right lobe of his lungs collapsed again. Since this has happened twice now, they wonder if there is something wrong with the physiology of his airways. There's nothing to be done for it, but it will help them extubate more carefully in the future. So, he'll have general anesthtic for the next extubation. For good measure, the ENT is going to check to see if he needs ear tubes (almost all kids with DS do) and then will slip those in during the procedure.
Bobby was originally scheduled to have an MRI later this month for his eyes. He has nystagmus (more commonly called a 'wobbler' by me). One of his eyes crosses some of the time. Well, one of the causes can be De Morsier syndrome, which is some hideous disease impacting the mid line of the brain, including the pituitary gland. Its not likely that Bobby has it, but they need to do a sedated MRI to check. After all of the fun today, the last thing we want is an additional sedation and intubation. So, the doctors have been nice enough to move it up and do it tomorrow, while he's intubated anyway. One less trauma for Bobby. One less day sitting in the surgical waiting room for us.
Post reintubation we had another round of low blood pressure and desaturation. But he's stable now. They are going to keep him largely sedated between now and tomorrow, which is good news. He comfortably slept most of the afternoon away.
In the meantime, my heart rate has gone back to normal post the visit from the chaplain. We had Nurse Kyle today, who is one of our favorites. He is very knowledgable and enjoys caring for Bobby. The ICU attending pronounced Bobby the cutest kid on the floor. According to the nurses, it is quite rare for him to make such a remark. Nanny Beth stood on her feet for 8 hours holding Bobby's hand. Or, put another way, Bubs is surrounded by people who are very, very loyal and dedicated to him.
He was extubated this morning. (Extubate = removal of Bobby's breathing tube). Or at least, they tried to extubate him. His airway was swollen from having had the tube inserted twice in just a few days. It was so swollen that he couldn't push air in or out.
It was very scary. Nanny Beth and I were watching from the glass window that separates his room from the hallway. Valerie was home working because he'd been so stable that we didn't think we both needed to be here. I saw his oxygen saturation fall to 39%, which is a crazy low number. Then we had to leave the area completely because they didn't want us there for the reintubation (re-insertion of the breathing tube).
We stood outside of the ICU, waiting. His room is next to the ICU entrance, so I could sneak peeks as people walked in and out of the door. A crash cart showed up. Multiple nurses and doctors showed up. Very scary, so rather than go crazy, I walked a few paces down the hall where I couldn't see all that commotion.
Then, while Beth was finding a phone to call Valerie, a woman who I knew to be a social worker walked up to me in the hallway. She introduced the person with her - the chaplain on call. I freaked out. The stupid social worker held my arm, asking if I was alright and asking what they could do. After a long paus, I blurted out, "did he die?". They looked puzzled. Apparently they automatically get paged when additional staff are called to the room. "Don't do that," I told them. "Why did you get called? Is he in serious shape?" The chaplain managed to exit gracefully. I wanted to slap the social worker.
In a few very long minutes the APN came out and told us that the reintubation was successful. They are confident that the issue was the swelling caused by the tube, not a problem with the his lung or heart function. He had an echo to confirm this later in the day.
So, we're back on the tube. This time its down his nose, which lets him put stuff in his mouth and overall seems more comfortable. He's on steroids for at least 24 hours and the new extubation will be tomorrow or, more likely, Friday.
This time, they are going to have an ENT present to take a look at his airways. Besides the swelling, the upper right lobe of his lungs collapsed again. Since this has happened twice now, they wonder if there is something wrong with the physiology of his airways. There's nothing to be done for it, but it will help them extubate more carefully in the future. So, he'll have general anesthtic for the next extubation. For good measure, the ENT is going to check to see if he needs ear tubes (almost all kids with DS do) and then will slip those in during the procedure.
Bobby was originally scheduled to have an MRI later this month for his eyes. He has nystagmus (more commonly called a 'wobbler' by me). One of his eyes crosses some of the time. Well, one of the causes can be De Morsier syndrome, which is some hideous disease impacting the mid line of the brain, including the pituitary gland. Its not likely that Bobby has it, but they need to do a sedated MRI to check. After all of the fun today, the last thing we want is an additional sedation and intubation. So, the doctors have been nice enough to move it up and do it tomorrow, while he's intubated anyway. One less trauma for Bobby. One less day sitting in the surgical waiting room for us.
Post reintubation we had another round of low blood pressure and desaturation. But he's stable now. They are going to keep him largely sedated between now and tomorrow, which is good news. He comfortably slept most of the afternoon away.
In the meantime, my heart rate has gone back to normal post the visit from the chaplain. We had Nurse Kyle today, who is one of our favorites. He is very knowledgable and enjoys caring for Bobby. The ICU attending pronounced Bobby the cutest kid on the floor. According to the nurses, it is quite rare for him to make such a remark. Nanny Beth stood on her feet for 8 hours holding Bobby's hand. Or, put another way, Bubs is surrounded by people who are very, very loyal and dedicated to him.
2/24/09
Another Look
Bobby continued to desat through the night. At some point, his saturation fell into the 50s, which is a scary low number. So, they decided to do a cardiac catheterization today.
The cath was inserted into an artery in Bobby's neck and they found what they expected to find - a collateral vein.
Remember that now, the blood from Bobby's head is supposed to be flowing directly to his lungs. That is the only blood that has access to the lungs, and is thus the only means for him to get his blood saturated with oxygen. Bobby had a collateral vein in his head that was still attached to the heart - so it was draining out blood that was meant to be oxygenated and sending it back to the heart where it got recirculated without any lung time.
The catheterization doctor plugged up the offending vein. Now, all of the blood in Bobby's head should be getting oxygenated.
Right now, his sats are a little better. He's still on the ventilator and will be until tomorrow. The vent is hard on his system so we won't get a true read of his improvement until he's been breathing on his own for a bit. Unfortunately, this means another night of uncomfortable suctioning.
He's on an interesting little cocktail of general anasthetic that hasn't worn off, Dopamine, Ativan, Loritab, and Morphine. Its almost as elaborate as my personal drug cocktail (kidding...kidding, Valerie and I gave all that up when we adopted our cats) He's stable and will be kept more or less sedated through the night.
Meanwhile, we have had a string of 3 very good nurses since the debacle last night, all of whom have taken his desats very seriously. Last night's nurse was particularly great. She was getting her shift report when Bobby turned blue so she saw how angry I was. I started the night by telling her, "I'm going to need two things. One, don't lecture me on how to read the monitor and two, don't argue with me about whether Bobby is in pain." She was very gracious. She also taught me a nifty little trick about how to suction the acid from Bobby's reflux back up the feeding tube so that it doesn't sting sweet Bobby. Pretty cool.
The cath was inserted into an artery in Bobby's neck and they found what they expected to find - a collateral vein.
Remember that now, the blood from Bobby's head is supposed to be flowing directly to his lungs. That is the only blood that has access to the lungs, and is thus the only means for him to get his blood saturated with oxygen. Bobby had a collateral vein in his head that was still attached to the heart - so it was draining out blood that was meant to be oxygenated and sending it back to the heart where it got recirculated without any lung time.
The catheterization doctor plugged up the offending vein. Now, all of the blood in Bobby's head should be getting oxygenated.
Right now, his sats are a little better. He's still on the ventilator and will be until tomorrow. The vent is hard on his system so we won't get a true read of his improvement until he's been breathing on his own for a bit. Unfortunately, this means another night of uncomfortable suctioning.
He's on an interesting little cocktail of general anasthetic that hasn't worn off, Dopamine, Ativan, Loritab, and Morphine. Its almost as elaborate as my personal drug cocktail (kidding...kidding, Valerie and I gave all that up when we adopted our cats) He's stable and will be kept more or less sedated through the night.
Meanwhile, we have had a string of 3 very good nurses since the debacle last night, all of whom have taken his desats very seriously. Last night's nurse was particularly great. She was getting her shift report when Bobby turned blue so she saw how angry I was. I started the night by telling her, "I'm going to need two things. One, don't lecture me on how to read the monitor and two, don't argue with me about whether Bobby is in pain." She was very gracious. She also taught me a nifty little trick about how to suction the acid from Bobby's reflux back up the feeding tube so that it doesn't sting sweet Bobby. Pretty cool.
2/23/09
Hell Hath No Fury
When William Congreve first wrote those words 300 years ago (warning: wikipedia was used in the writing of this blog) he was talking about a lover scorned. He should have been talking about a mama who was ignored while her baby turned blue.
Bobby desatted at about 6:15 today (desat = oxygen dropped below the level his doctors deem appropriate). Our nurse had stepped out of the room so I went to get a doctor. She examined Bobby and decided he was in no immediate danger. I agreed, but expressed concern that his saturation levels have gotten lower and lower over time for no apparent reason. If it was a matter of waiting for him to heal up, wouldn't he be getting better? She agreed and then asked the nurse to watch Bobby and went to talk to the attending physician.
From 6:15 to 7:00 Bobby continued to desat. His nurse lectured me on how to read the monitor, telling me that he wasn't really desatting, that the wave form of the monitor wasn't an accurate read. When that got tired, she claimed that he wasn't desatting, that the pulsox (the tool that's attached to his toe to read his oxygen levels) wasn't on tight enough. Then she said that he was desatting but that its expected in children like him and nothing to worry about (apparently Bubby is one of those very special children who doesn't require oxygen to function). On and on and on. I keps watching the monitors and Bubs because it was very clear that he was desatting.
Then the nurse went to give her report to the nurse taking over at 7:00. I heard her talking about how Bobby hadn't been in pain all day (ridiculous) and then about how his saturation rates were a bit low. I continued to watch Bobby. In fact, I watched Bobby turn blue - the first and only time in his life he's actually turned blue.
Somehow, the nurse had heard the doctor say 'keep an eye on him' and translated that into 'continuously turn off his oxygen level alarms, fail to actually look at the child when the alarms go off and, for good measure, issue a wholesale denial that his oxygen levels are low. Bonus points if you can make condescending remarks about how the monitor is difficult to interpret. Because while logic might tell you otherwise, it does in fact take a nursing degree to look at a monitor and see whether or not a wave form is smooth or irregular.'
The nurse, being helpless to deny that Bobby was in fact blue, paged the doctor who asked if something specific had caused the turning blue. I said 'nothing in particular. He's been desatting for the past hour but no one would listen to me'. I was so mad that I just left the room for a few minutes so as to not interfere with Bobby's care.
He's fine now. It might be that his lungs are still struggling post op. We are increasing his feeds so it could be that acid reflux is causing him pain, thus constricting his blood flow and lowering his sats. It might also be that he has an undetected vein in his head that is causing some of his blood to not end up in the lungs, thus lowering his oxygen levels. The latter would have to be investigated by another cardiac catheterization. If they find such a vein they put a coil on it (during the catheterization) so as to kill it off.
Bobby desatted at about 6:15 today (desat = oxygen dropped below the level his doctors deem appropriate). Our nurse had stepped out of the room so I went to get a doctor. She examined Bobby and decided he was in no immediate danger. I agreed, but expressed concern that his saturation levels have gotten lower and lower over time for no apparent reason. If it was a matter of waiting for him to heal up, wouldn't he be getting better? She agreed and then asked the nurse to watch Bobby and went to talk to the attending physician.
From 6:15 to 7:00 Bobby continued to desat. His nurse lectured me on how to read the monitor, telling me that he wasn't really desatting, that the wave form of the monitor wasn't an accurate read. When that got tired, she claimed that he wasn't desatting, that the pulsox (the tool that's attached to his toe to read his oxygen levels) wasn't on tight enough. Then she said that he was desatting but that its expected in children like him and nothing to worry about (apparently Bubby is one of those very special children who doesn't require oxygen to function). On and on and on. I keps watching the monitors and Bubs because it was very clear that he was desatting.
Then the nurse went to give her report to the nurse taking over at 7:00. I heard her talking about how Bobby hadn't been in pain all day (ridiculous) and then about how his saturation rates were a bit low. I continued to watch Bobby. In fact, I watched Bobby turn blue - the first and only time in his life he's actually turned blue.
Somehow, the nurse had heard the doctor say 'keep an eye on him' and translated that into 'continuously turn off his oxygen level alarms, fail to actually look at the child when the alarms go off and, for good measure, issue a wholesale denial that his oxygen levels are low. Bonus points if you can make condescending remarks about how the monitor is difficult to interpret. Because while logic might tell you otherwise, it does in fact take a nursing degree to look at a monitor and see whether or not a wave form is smooth or irregular.'
The nurse, being helpless to deny that Bobby was in fact blue, paged the doctor who asked if something specific had caused the turning blue. I said 'nothing in particular. He's been desatting for the past hour but no one would listen to me'. I was so mad that I just left the room for a few minutes so as to not interfere with Bobby's care.
He's fine now. It might be that his lungs are still struggling post op. We are increasing his feeds so it could be that acid reflux is causing him pain, thus constricting his blood flow and lowering his sats. It might also be that he has an undetected vein in his head that is causing some of his blood to not end up in the lungs, thus lowering his oxygen levels. The latter would have to be investigated by another cardiac catheterization. If they find such a vein they put a coil on it (during the catheterization) so as to kill it off.
Monday, Monday
More tubes came out this morning, leaving Bobby with 2 free arms (and more importantly two available thumbs) and making the mama-baby snuggle time much easier. We won't be able to pick him up under his arms for 6 weeks now - it feels so awkward to do everything with a cradle hold. We've struggled with the early holds, trying to figure out what's comfortable for him and manageable for us. Still, its wonderful to be able to comfort him properly now.
Plus, Bobby's morphine has been replaced with loritab. It's helped the pain and doesn't knock him out quite as much. I think today is the first day that Bobby totally recognizes us - in the last few days I think he had some sense that Valerie and I were his comforters, but I don't think he really was awake enough to tell us apart.
Medically, we're in a bit of a holding pattern, waiting for Bobby's oxygen saturation levels to go up. If they aren't better by tomorrow I think the doctors are going to run some tests to try to figure out what might be causing the problem. Part of the issue is that the chest tubes were hiding some congestion in his lung. Now that its been diagnosed we can work that out.
Valerie's birthday is today. Its not such a great day to have a birthday, although Bubsy still managed to find time to send her balloons. He's very thoughtful that way. He's suggested that we postpone her birthday celebration until we can all go to Chuck E. Cheese together.
Valerie got us set up on Yahoo Messenger yesterday. This is great for sending web cam views of Bobby when we can't both be at the hospital. Its equally good for strategizing around difficult hospital personnel issues when said personnel is in the room. We've been very fortunate in that the PICU is not busy so Bubsy has mostly had a 1-1 nurse-patient ratio. Its extremely comforting that the nurse is always in the room. But, unfortunately, it also means that the nurse is always in the room. Always.
For those of you who've done the cardiology tango at Children's - here's an interesting piece of news. When they move to the new hospital building they are going to have a single cardiology floor which will include all patients in NICU, PICU, and the current 5 West. The nurses will be cross-trained to do all kinds of care. This means no more transfers within the hospital (children will have the same room even if their level of care changes) and more continuity of care as children can keep a nurse even if, again, the level of chare changes. The training has already begun - they now have 8 PICU room and 20 PICU nurses that are full time cardiology. I think it will make life easier and the care more sane for kids like Bubsy that are in and out of the hospital so often.
Plus, Bobby's morphine has been replaced with loritab. It's helped the pain and doesn't knock him out quite as much. I think today is the first day that Bobby totally recognizes us - in the last few days I think he had some sense that Valerie and I were his comforters, but I don't think he really was awake enough to tell us apart.
Medically, we're in a bit of a holding pattern, waiting for Bobby's oxygen saturation levels to go up. If they aren't better by tomorrow I think the doctors are going to run some tests to try to figure out what might be causing the problem. Part of the issue is that the chest tubes were hiding some congestion in his lung. Now that its been diagnosed we can work that out.
Valerie's birthday is today. Its not such a great day to have a birthday, although Bubsy still managed to find time to send her balloons. He's very thoughtful that way. He's suggested that we postpone her birthday celebration until we can all go to Chuck E. Cheese together.
Valerie got us set up on Yahoo Messenger yesterday. This is great for sending web cam views of Bobby when we can't both be at the hospital. Its equally good for strategizing around difficult hospital personnel issues when said personnel is in the room. We've been very fortunate in that the PICU is not busy so Bubsy has mostly had a 1-1 nurse-patient ratio. Its extremely comforting that the nurse is always in the room. But, unfortunately, it also means that the nurse is always in the room. Always.
For those of you who've done the cardiology tango at Children's - here's an interesting piece of news. When they move to the new hospital building they are going to have a single cardiology floor which will include all patients in NICU, PICU, and the current 5 West. The nurses will be cross-trained to do all kinds of care. This means no more transfers within the hospital (children will have the same room even if their level of care changes) and more continuity of care as children can keep a nurse even if, again, the level of chare changes. The training has already begun - they now have 8 PICU room and 20 PICU nurses that are full time cardiology. I think it will make life easier and the care more sane for kids like Bubsy that are in and out of the hospital so often.
2/22/09
Day Three Post-Op
Bobby had a bit of a rough night. While he's making good progress overall, he was very uncomfortable and cried out several times during the night, in spite of the morphine on demand and tylenol doses. Anesthesia has re-assessed the pain management plan, and have upped the frequency he can have the low dose morphine (from once every 8 minutes to once every 6). The doctors and nurses all assure me that he is on such a small dose, that giving him the extra morphine for now is not a big deal.
From morning rounds, the good news to report is that Bobby's 3 chest tubes will be removed today, as well as his foley catheter. As Mama A wrote in a previous entry, people who've undergone heart surgery before, report that those pesky chest tubes are, by far, the most painful part of the process. Removing the chest tubes and foley means snuggle time for Mamas V and A with their Bubsy Bear...
In other news, Bobby's chest xray looked good, so they've reduced respiratory therapy treatments from 6 times a day to 4 times a day. He will also be started on a larger volume of formula for his feeds - he'll take 70ml (roughly, 2 1/3 ounces) over an hour, then he'll have an hour break. They've also added back his Prevacid medicine to help with his GERD (acid reflux), as they continue to ramp up the feeds.
From morning rounds, the good news to report is that Bobby's 3 chest tubes will be removed today, as well as his foley catheter. As Mama A wrote in a previous entry, people who've undergone heart surgery before, report that those pesky chest tubes are, by far, the most painful part of the process. Removing the chest tubes and foley means snuggle time for Mamas V and A with their Bubsy Bear...
In other news, Bobby's chest xray looked good, so they've reduced respiratory therapy treatments from 6 times a day to 4 times a day. He will also be started on a larger volume of formula for his feeds - he'll take 70ml (roughly, 2 1/3 ounces) over an hour, then he'll have an hour break. They've also added back his Prevacid medicine to help with his GERD (acid reflux), as they continue to ramp up the feeds.
2/21/09
Saturday in the Park (er...Hospital)
Bobby continues to recover nicely. He just started his first feed since surgery - he gets 10 ml (1/3 oz) of formula every hour through his feeding tube. Not much, but they will increase things pretty quickly if he does well.
He's staying awake for longer and longer periods of time, showing off his bright blue eyes. He's obviously uncomfortable but is being very brave. Much much braver and more tolerant than I would be.
He had a xray yesterday that showed that his upper right lung wasn't working great. It hadn't collapsed like last time, but the air sacs weren't fully inflated. He is getting some respiratory treatment every 4 hours where they put a little vibrator on his chest and back to break up any congestion. Then he gets a dreaded suction. Its hard on him, but it is working very well. This morning's x-ray looked great.
Our major concern is that his oxygen saturations are still a bit low. They went down to the high 60s this morning. They think its caused by a couple of things - Bobby's breathing is a bit shallow because its painful for him to take deep breaths with a broken sternum and his lungs are still mad about the bypass surgery.
The doctor ordered a bolus of 40 ml of saline solution to be put through his artery. When I asked the nurse why she was doing this she said it was because Bobby was 'shunting'. When I asked what 'shunting' was, she responded with an answer that made me question whether she really understood what shunting was. Comforting. But he immediately relaxed after the saline went in. Apparently it fixed the 'shunting'. Later, she gave him a big dose of morphine to help him relax and he's floated off to la-la land.
Lest I complain too much about my nurses, I should say that we have had the Mary Poppins of nurses the last 2 nights. She largely took over the respiratory treatments last night, and that made a huge amount of difference in the junk that came up from his lungs. Chris has been a nurse over 20 years and the experience shows. Every time I woke up in the night she was standing over the crib, caring for him or just comforting him. I'm in awe of how she moved him around and how comfortable he is with her. With her help he sat up for a few minutes last night.
I helped her give Bobby a bath. It was wonderful to touch him. It's so hard to be close with all the wires about. Speaking of cleaning up the Bubs, we had a little scare yesterday when Valerie found a brownish-gray growth on Bobby's scrotum. The nurse didn't know what it was. The APN checked it out and identified it as just a bit of residual betadine from the surgery. False alarm. But it reminded me of when Bobby was first born and I asked the nurse about a little brown spot he had growing on his pee-pee. She was very kind not to laugh at me as she suggested it might be a little dab of poo.
For all this, the doctors are optimistic about his progress. If all goes well with the feeds we'll move towards having his chest tubes removed tomorrow or Monday. That is a very exciting time because we will then be able to hold him.
He's staying awake for longer and longer periods of time, showing off his bright blue eyes. He's obviously uncomfortable but is being very brave. Much much braver and more tolerant than I would be.
He had a xray yesterday that showed that his upper right lung wasn't working great. It hadn't collapsed like last time, but the air sacs weren't fully inflated. He is getting some respiratory treatment every 4 hours where they put a little vibrator on his chest and back to break up any congestion. Then he gets a dreaded suction. Its hard on him, but it is working very well. This morning's x-ray looked great.
Our major concern is that his oxygen saturations are still a bit low. They went down to the high 60s this morning. They think its caused by a couple of things - Bobby's breathing is a bit shallow because its painful for him to take deep breaths with a broken sternum and his lungs are still mad about the bypass surgery.
The doctor ordered a bolus of 40 ml of saline solution to be put through his artery. When I asked the nurse why she was doing this she said it was because Bobby was 'shunting'. When I asked what 'shunting' was, she responded with an answer that made me question whether she really understood what shunting was. Comforting. But he immediately relaxed after the saline went in. Apparently it fixed the 'shunting'. Later, she gave him a big dose of morphine to help him relax and he's floated off to la-la land.
Lest I complain too much about my nurses, I should say that we have had the Mary Poppins of nurses the last 2 nights. She largely took over the respiratory treatments last night, and that made a huge amount of difference in the junk that came up from his lungs. Chris has been a nurse over 20 years and the experience shows. Every time I woke up in the night she was standing over the crib, caring for him or just comforting him. I'm in awe of how she moved him around and how comfortable he is with her. With her help he sat up for a few minutes last night.
I helped her give Bobby a bath. It was wonderful to touch him. It's so hard to be close with all the wires about. Speaking of cleaning up the Bubs, we had a little scare yesterday when Valerie found a brownish-gray growth on Bobby's scrotum. The nurse didn't know what it was. The APN checked it out and identified it as just a bit of residual betadine from the surgery. False alarm. But it reminded me of when Bobby was first born and I asked the nurse about a little brown spot he had growing on his pee-pee. She was very kind not to laugh at me as she suggested it might be a little dab of poo.
For all this, the doctors are optimistic about his progress. If all goes well with the feeds we'll move towards having his chest tubes removed tomorrow or Monday. That is a very exciting time because we will then be able to hold him.
2/20/09
Better Afternoon
Things are progressing nicely. The breathing tube came out about 10 am and Bobby has been holding his own since then. He just opened his eyes for longer than a flutter for the first time since his surgery. Overall, he seems to be tolerating the tubes and stitches a lot more easily than last night. They have reduced his morphine a bit and he seems fine. The diuretic has helped his swelling.
He is still getting a lot of oxygen help. We'll probably spend tonight into tomorrow lowering that gradually. Once that's done, he can start eating.
And the nurse just said to us, 'all babies have a mohawk at that age'. I find that offensive. I defy you to show me a better mohawk on anyone of any age.
Back when we were nanny searching, we interviewed a woman who, a few days after the interview, sent us a note asking 'do you accept me as your nanny?' (We did not). After the nurse uttered those heretic words about Bubs, I felt like saying "I do not accept you as Bobby's nurse". Or at the very least, "I do not accept you as Bobby's coiffeuse".
He is still getting a lot of oxygen help. We'll probably spend tonight into tomorrow lowering that gradually. Once that's done, he can start eating.
And the nurse just said to us, 'all babies have a mohawk at that age'. I find that offensive. I defy you to show me a better mohawk on anyone of any age.
Back when we were nanny searching, we interviewed a woman who, a few days after the interview, sent us a note asking 'do you accept me as your nanny?' (We did not). After the nurse uttered those heretic words about Bubs, I felt like saying "I do not accept you as Bobby's nurse". Or at the very least, "I do not accept you as Bobby's coiffeuse".
Good Morning
We made it through the night OK. I woke up at 11pm to Bobby's breathing tube being suctioned for the first time. That is a pretty horrible sight. The poor little thing is screaming with discomfort but you can't hear him because the tube blocks out all sound. You have to go by his furrowed brows and red face to know when he's beginning to relax. All I can really do is stand by him and push the voluntary morphine hit every 8 minutes.
They are going to try to extubate him this morning. He is breathing over his ventilator with no problems. Right now his respiratory rate is 21 and only 6 of those breaths come courtesty of the ventilator. The main problem is that he is not maintaining his oxygen saturation. Along with the ventilator pushing air into his lungs, he's also breathing in air that is 45% oxygen. Normal room air is only 21%. With this extra help he's only at minimally acceptable oxygen saturation in his body. None of this is new - we went through it when he was born and when he had his last surgery. His lungs just need a few days of help to get back at peak efficiency. Once the breathing tube is removed they'll give him the oxygen cannula for a bit of extra help.
He started his diuretics this morning. That will help reduce the swelling. His poor little eyes are almost swollen shut this morning. They are covered in goo from all of his crying but we don't want to wipe thim off because even a light brush makes his eyelids swell more. Right now he is getting some extra blood to help his heart healing along. Its going to be a very sore - and when the tube is removed - very loud day for Bubs.
For our part, Valerie and I did manage to get some sleep last night. Bubs was very comfortable between suctions and he has a nurse all to himself so I was able to let her attend to him. Only one parent can stay in the room at night so Valerie ended up on a cot in the waiting room. She is happy to report minimal snoring on the part of her fellow sleepers.
They are going to try to extubate him this morning. He is breathing over his ventilator with no problems. Right now his respiratory rate is 21 and only 6 of those breaths come courtesty of the ventilator. The main problem is that he is not maintaining his oxygen saturation. Along with the ventilator pushing air into his lungs, he's also breathing in air that is 45% oxygen. Normal room air is only 21%. With this extra help he's only at minimally acceptable oxygen saturation in his body. None of this is new - we went through it when he was born and when he had his last surgery. His lungs just need a few days of help to get back at peak efficiency. Once the breathing tube is removed they'll give him the oxygen cannula for a bit of extra help.
He started his diuretics this morning. That will help reduce the swelling. His poor little eyes are almost swollen shut this morning. They are covered in goo from all of his crying but we don't want to wipe thim off because even a light brush makes his eyelids swell more. Right now he is getting some extra blood to help his heart healing along. Its going to be a very sore - and when the tube is removed - very loud day for Bubs.
For our part, Valerie and I did manage to get some sleep last night. Bubs was very comfortable between suctions and he has a nurse all to himself so I was able to let her attend to him. Only one parent can stay in the room at night so Valerie ended up on a cot in the waiting room. She is happy to report minimal snoring on the part of her fellow sleepers.
2/19/09
Pediatric Intensive Care
We're settled into our new home away from home. Bobby is doing OK. As we'd expect, he is in a lot of pain and is taking quite a bit of morphine. He has three tubes inserted into his chest to drain off excess blood and fluid.The nurses know from talking to older kids that the tubes are excruciatingly painful. They have to be shaken and wiggled every hour or so to keep the fluid draining. Bobby winces everytime it happens. We have to balance the comfort of the morphine against the benefit of getting him off the breathing tube. Morphine suppresses the respiratory system, so they can be more aggressive with the medication as long as the ventilator is doing the work of breathing for him. But, the air blowing in through the vent puts pressure on the heart and arteries that have already been through so much today.
Bobby is just starting to take a few breaths on his own over and above what the ventilator does for him. Right now, the vent is giving him 16 breaths a minute which is almost enough to keep his carbon dioxide levels at an acceptable level. The doctors will slowly lower the number of breaths he gets from the ventilator. Fewer breaths means the carbon dioxide will rise and Bobby's body should compensate by taking some supplemental breaths on its own. If he doesn't start breathing more, that will tell us that he's too sleepy to breath on his own. At that point, the doctors will decide either to keep him on the morphine and vent for the night, or lower the dose and wake him up some more.
He is a bruised little boy this evening. His face is swollen from the bypass surgery, but that will go down in a few days. He has a central line in his chest that they use to put in IV fluid and medicines. He has an IV in both wrists. He has those horrible chest tubes. He wakes up for a few seconds here and there, but I hope he's mostly oblivious to what's happening now.
In other news, Bobby's mohawk continues to proudly rise above it all.
Bobby is just starting to take a few breaths on his own over and above what the ventilator does for him. Right now, the vent is giving him 16 breaths a minute which is almost enough to keep his carbon dioxide levels at an acceptable level. The doctors will slowly lower the number of breaths he gets from the ventilator. Fewer breaths means the carbon dioxide will rise and Bobby's body should compensate by taking some supplemental breaths on its own. If he doesn't start breathing more, that will tell us that he's too sleepy to breath on his own. At that point, the doctors will decide either to keep him on the morphine and vent for the night, or lower the dose and wake him up some more.
He is a bruised little boy this evening. His face is swollen from the bypass surgery, but that will go down in a few days. He has a central line in his chest that they use to put in IV fluid and medicines. He has an IV in both wrists. He has those horrible chest tubes. He wakes up for a few seconds here and there, but I hope he's mostly oblivious to what's happening now.
In other news, Bobby's mohawk continues to proudly rise above it all.
The Surgeon
Dr. Backer just updated us. Bobby is off of the heart-lung machine and is all sewn up. The surgery went well.
He will be on a breathing tube for awhile - either getting off of it later today or tomorrow morning. They will keep him sleepy until that happens. Then, they'll slowly start taking him off of the pain medication, to his tolerance.
The scariest part is over. Now we wait to see what, if any, complications come up. We have been given a hospital stay estimate of 5 days to 2 weeks, which is indicative of how our Bubs likes to draw out these hospital stays.
We'll pass on an update later once we've seen him.
He will be on a breathing tube for awhile - either getting off of it later today or tomorrow morning. They will keep him sleepy until that happens. Then, they'll slowly start taking him off of the pain medication, to his tolerance.
The scariest part is over. Now we wait to see what, if any, complications come up. We have been given a hospital stay estimate of 5 days to 2 weeks, which is indicative of how our Bubs likes to draw out these hospital stays.
We'll pass on an update later once we've seen him.
Good Progress
We got an early update this time because the surgery is progressing well. Julie (the APN) reports that Bobby's heart is now beating again and the shunt is in place.
One of the pulmonary artery branches was a bit narrow so they inserted a patch of tissue from Bobby's heart to expand it. This is apparently a common procedure for this operation. Once the artery has expanded it will receive more blood flow and will most likely grow normally from here on out.
They are currently cleaning up the bleeding from the procedure. The next step is to take him off of the heart/lung machine and sew him up. Then we'll get a visit from the surgeon while Bobby starts to wake up.
Julie says that she hears some joviality in the operationg room which is always a great sign that things have gone well.
One of the pulmonary artery branches was a bit narrow so they inserted a patch of tissue from Bobby's heart to expand it. This is apparently a common procedure for this operation. Once the artery has expanded it will receive more blood flow and will most likely grow normally from here on out.
They are currently cleaning up the bleeding from the procedure. The next step is to take him off of the heart/lung machine and sew him up. Then we'll get a visit from the surgeon while Bobby starts to wake up.
Julie says that she hears some joviality in the operationg room which is always a great sign that things have gone well.
The Surgery Moves On
The nurse just stopped by for an update. Bobby is stable and the surgery is uneventful from a surgeon's point of view. Bobby is on the heart/lung machine and his heart has stopped beating for the time being. They are currently closing his pulmonary artery shut - from now on, Bobby won't have blood flowing from his heart to his lungs.
Here's a link to a picture that will help explain what's happening.
http://www.childrensheartinstitute.org/educate/heartwrk/bloodflw.htm
The pulmonary artery is being sewn shut just before it forks to the right and left lung.
The next step is to insert a shunt that will connect the superior vena cava (carries blood away from his head) directly to the portion of the pulmonary artery that lies on the upper right of the heart. This blood will be sent to the right and left lungs and be oxygenated there.
For now, the inferior vena cava that carries blood from the bottom part of his body will continue to connect to his heart. But the blood won't get sent to the lungs - it will just be recirculated to his body. When he's older, it will be redirected. Until this happens, Bobby's oxygen saturation (the % of red blood cells that are carrying oxygen) will remain a little low - he will run at about 80%-85% saturation while a healthy person is closer to 95%-100%. He's been at this level all of his life and, well, you can see that it doesn't seem to be keeping the rosy off of his cheeks.
Thanks for all of the good thoughts! Its immensely helpful to know that you are with us.
The next update will be in a couple of hours.
Here's a link to a picture that will help explain what's happening.
http://www.childrensheartinstitute.org/educate/heartwrk/bloodflw.htm
The pulmonary artery is being sewn shut just before it forks to the right and left lung.
The next step is to insert a shunt that will connect the superior vena cava (carries blood away from his head) directly to the portion of the pulmonary artery that lies on the upper right of the heart. This blood will be sent to the right and left lungs and be oxygenated there.
For now, the inferior vena cava that carries blood from the bottom part of his body will continue to connect to his heart. But the blood won't get sent to the lungs - it will just be recirculated to his body. When he's older, it will be redirected. Until this happens, Bobby's oxygen saturation (the % of red blood cells that are carrying oxygen) will remain a little low - he will run at about 80%-85% saturation while a healthy person is closer to 95%-100%. He's been at this level all of his life and, well, you can see that it doesn't seem to be keeping the rosy off of his cheeks.
Thanks for all of the good thoughts! Its immensely helpful to know that you are with us.
The next update will be in a couple of hours.
The Real Work Gets Started
Not surprisingly, it took the doctors an extra long time to get Bobby's central line in place. It always takes an extra long time to get Bobby's IVs in place. He's a tough stick.
But he's stable and the incision has just been made. Only 4 or so more hours to go. The nurse said she'd be back at 10:30.
But he's stable and the incision has just been made. Only 4 or so more hours to go. The nurse said she'd be back at 10:30.
Surgery Beginning
Valerie and I are in the surgery waiting room, having handed Bobby over to the doctors at 7:30 this morning. We've sat in this room too many times already, but this is the scariest one so far. Today he goes on the heart-lung machine. Today they may have to stop his heart to finish the surgery.
But for now he's just going under anesthetic and having a breathing tube and central line put in place. Then they will do a trans-esophagal echo where they insert a camera through his windpipe down next to his heart. This is just a check to make sure there are no surprises regarding his physiology.
After that's done, they will open up his chest. The APN (advanced practice nurse) will give us updates as we go. The first one will be in about an hour and a half. I'll check in here when she checks in with us.
I learned a lovely prayer this weekend that I keep saying to and for Bobby.
I learn something new each day
Step by step I'm on my way
Thank you God for how I grow
And thank you for the things I know
We're taking a great big scary step today. I trust God will see us all through.
But for now he's just going under anesthetic and having a breathing tube and central line put in place. Then they will do a trans-esophagal echo where they insert a camera through his windpipe down next to his heart. This is just a check to make sure there are no surprises regarding his physiology.
After that's done, they will open up his chest. The APN (advanced practice nurse) will give us updates as we go. The first one will be in about an hour and a half. I'll check in here when she checks in with us.
I learned a lovely prayer this weekend that I keep saying to and for Bobby.
I learn something new each day
Step by step I'm on my way
Thank you God for how I grow
And thank you for the things I know
We're taking a great big scary step today. I trust God will see us all through.
2/15/09
2/14/09
Grandma
Well, Bobby broke the news to us this morning. He has chosen Grandma as his special Valentine's Day lady. I didn't see that coming. But who am I to argue with true love?
We're home (as always) this weekend, trying to keep Bubs healthy for surgery. One of the things I'm most looking forward to post-surgery is being able to take Bubs places. He loves going out. Anywhere. He starts smiling as soon as he sees his snowsuit.
Surgery is now 5 days away. It's crazy that in one week the blood from Bobby's head will be rerouted to flow directly to his lungs. How the heck did someone think up that fix? And how many people have had their lives saved by that crazy idea? I'll be happy to add Bobby's name to the list.
We have a subscription link to the blog above. If you sign up, you will be notified when we post. We'll be posting a lot next week. I try to give updates once a day when we're in the hospital as I know Bobby has a lot of people worried for him.
We appreciate all of the love and support.
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We're home (as always) this weekend, trying to keep Bubs healthy for surgery. One of the things I'm most looking forward to post-surgery is being able to take Bubs places. He loves going out. Anywhere. He starts smiling as soon as he sees his snowsuit.
Surgery is now 5 days away. It's crazy that in one week the blood from Bobby's head will be rerouted to flow directly to his lungs. How the heck did someone think up that fix? And how many people have had their lives saved by that crazy idea? I'll be happy to add Bobby's name to the list.
We have a subscription link to the blog above. If you sign up, you will be notified when we post. We'll be posting a lot next week. I try to give updates once a day when we're in the hospital as I know Bobby has a lot of people worried for him.
We appreciate all of the love and support.
2/12/09
Valentine's Day Maneuvering
Well, it's 2 days before Valentine's Day and Bobby has yet to reveal his special lady for this year. I'm hoping he'll pick Valerie and I, as I do believe all the little girls in play group are already spoken for. Plus, it's good form to choose your mamas in a year when you've sent them to the hospital 7 times and counting. Fingers crossed. If he picks that nanny of his, there's going to be trouble.
Bubs woke up in a great mood. Morning is my favorite time with him. He likes to sit on my lap, facing me, discussing the weather and his dreams from the night before. Every few minutes, he wants to be pulled close for a big hug. There's never been a finer way to start a day.
He had his occupational therapy assessment today. He's doing quite well on his cognitive skills - performing some tasks we'd never seen him do. We just need to get that trunk stronger so he can sit up and explore the world more.
Otherwise, we're focused on keeping him healthy for surgery. We spent last Saturday in the ER, afraid that he'd gotten pneumonia after choking on some vegetable juice. He's OK there, but he does have an upper respiratory infection. And I should make the ritual announcement that his GI woes are continuing.
Hard to believe, in exactly one week he'll be just finishing his next surgery. What a terrifying and yet relieving thought.
Bubs woke up in a great mood. Morning is my favorite time with him. He likes to sit on my lap, facing me, discussing the weather and his dreams from the night before. Every few minutes, he wants to be pulled close for a big hug. There's never been a finer way to start a day.
He had his occupational therapy assessment today. He's doing quite well on his cognitive skills - performing some tasks we'd never seen him do. We just need to get that trunk stronger so he can sit up and explore the world more.
Otherwise, we're focused on keeping him healthy for surgery. We spent last Saturday in the ER, afraid that he'd gotten pneumonia after choking on some vegetable juice. He's OK there, but he does have an upper respiratory infection. And I should make the ritual announcement that his GI woes are continuing.
Hard to believe, in exactly one week he'll be just finishing his next surgery. What a terrifying and yet relieving thought.
2/6/09
Moving On
We've had a very hectic week.
Bubsy hasn't felt great - he started off the week with some bad GI troubles. His little tummy works very hard, but it just can't process all the food he needs. We have another appointment at University of Chicago on Monday. We had a good talk with out pediatrician this week about the fact that we may just have a boy who has his gastric ups and downs. We're not convinced, but also believe that the only long term solution to this is to get him on more solids (thank you sheri t. for the perspective). It's so hard to know when to push and when to accept that this is just a difficult situation, especially since his earlier bacterial infection would not have been diagnosed if we hadn't kept pushing for more testing.
We had Bobby's early intervention assessment. This is where he is worked out by physical, occupational, feeding/speech, and developmental therapists. Overall, he is developmentally in the 4-6 month range, depending on the skill. He has regressed a bit from where he was 3 weeks ago as all the sickness has weakened him and made him lose some of his hard won progress. But we'll win it all back again.
The feeding/language therapist was excited about his interest in food and in communication. So, post surgery one of our main goals is to work very hard on both of these areas - with feeding obviously taking the lead. I'm very excited about the language piece. He understands that communication is a two way process - he will spend long periods of times trading raspberries and dinosaur calls with us. He regularly stares at our mouths trying to mimic the movement. My greatest hope has always been that we have a boy who will have good communication skills. To me, that seems to be the key to happiness for a boy as social as he is.
We will be moving to having physical therapy 2 times a week until he has recovered from his surgery and gets back into a good groove. No matter the developmental area, the main challenge we have now is getting him to sit up. With that, feeding and cognitive development will be greatly enhanced.
In the not so distant future we'll start on orthotics, which are plastic braces for his feet and ankles that help him distribute weight equally when he stands. From Nanny Beth's experience, these are something he will likely have forever. She also attests to the fact that they aren't the braces like we old people think of braces - they are fastened with velcro and are not a big deal to the kids who wear them.
Surgery is 2 weeks from today. It will be good to get past that hurdle and get back to making progress on these goals. In the meantime, its going to be 50 degrees tomorrow so we hope to get out of the house. Bobby loves being out. I can hardly wait until summer time comes and we can go for long walks and play in the sun shine.
Bubsy hasn't felt great - he started off the week with some bad GI troubles. His little tummy works very hard, but it just can't process all the food he needs. We have another appointment at University of Chicago on Monday. We had a good talk with out pediatrician this week about the fact that we may just have a boy who has his gastric ups and downs. We're not convinced, but also believe that the only long term solution to this is to get him on more solids (thank you sheri t. for the perspective). It's so hard to know when to push and when to accept that this is just a difficult situation, especially since his earlier bacterial infection would not have been diagnosed if we hadn't kept pushing for more testing.
We had Bobby's early intervention assessment. This is where he is worked out by physical, occupational, feeding/speech, and developmental therapists. Overall, he is developmentally in the 4-6 month range, depending on the skill. He has regressed a bit from where he was 3 weeks ago as all the sickness has weakened him and made him lose some of his hard won progress. But we'll win it all back again.
The feeding/language therapist was excited about his interest in food and in communication. So, post surgery one of our main goals is to work very hard on both of these areas - with feeding obviously taking the lead. I'm very excited about the language piece. He understands that communication is a two way process - he will spend long periods of times trading raspberries and dinosaur calls with us. He regularly stares at our mouths trying to mimic the movement. My greatest hope has always been that we have a boy who will have good communication skills. To me, that seems to be the key to happiness for a boy as social as he is.
We will be moving to having physical therapy 2 times a week until he has recovered from his surgery and gets back into a good groove. No matter the developmental area, the main challenge we have now is getting him to sit up. With that, feeding and cognitive development will be greatly enhanced.
In the not so distant future we'll start on orthotics, which are plastic braces for his feet and ankles that help him distribute weight equally when he stands. From Nanny Beth's experience, these are something he will likely have forever. She also attests to the fact that they aren't the braces like we old people think of braces - they are fastened with velcro and are not a big deal to the kids who wear them.
Surgery is 2 weeks from today. It will be good to get past that hurdle and get back to making progress on these goals. In the meantime, its going to be 50 degrees tomorrow so we hope to get out of the house. Bobby loves being out. I can hardly wait until summer time comes and we can go for long walks and play in the sun shine.
2/2/09
New Surgery Date
Our new surgery date is Friday, February 20th. Our goal is to stick with that date, GI issues are no, simply because we don't want Bobby to develop more severe complications from his heart problems. His oxygen saturation levels are falling a bit (that's the % of the blood flowing through the body that is oxygenated. In a healthy person the levels are near 100%. Over his young lifetime, Bobby's levels have gone from low nineties to high eighties to mid eighties to low eighties...you get the picture.
And it looks like we might still have GI issues. After the optimism of last week we're back to vomit vomit and more vomit. We're feeling a bit demoralized. Its scary having this issue that gets worse and worse over time, with every apparent 'solution' falling by the wayside and, quite frankly, its hard to keep our chin up when we're being drenched with vomit every few hours.
For now, his doctor has suggested that we give him a lighter food load for the next 24 hours in the hopes that this is just a temporary set back.
For his part, Bobby enjoyed his introduction to football during last night's Super Bowl and is wonderfully sweet. He's regaining some of his strength and will have his next set of Early Intervention assessments this week. Incredibly, he seems as happy now as he's been in his life - his smiles and laughter are coming easier and easier. He's become very ticklish under his chin and on his belly. He's learning to give kisses, sloppy affairs that cover our whole cheek or chin. And he's blissfully unaware that his mamas are freaking out.
And it looks like we might still have GI issues. After the optimism of last week we're back to vomit vomit and more vomit. We're feeling a bit demoralized. Its scary having this issue that gets worse and worse over time, with every apparent 'solution' falling by the wayside and, quite frankly, its hard to keep our chin up when we're being drenched with vomit every few hours.
For now, his doctor has suggested that we give him a lighter food load for the next 24 hours in the hopes that this is just a temporary set back.
For his part, Bobby enjoyed his introduction to football during last night's Super Bowl and is wonderfully sweet. He's regaining some of his strength and will have his next set of Early Intervention assessments this week. Incredibly, he seems as happy now as he's been in his life - his smiles and laughter are coming easier and easier. He's become very ticklish under his chin and on his belly. He's learning to give kisses, sloppy affairs that cover our whole cheek or chin. And he's blissfully unaware that his mamas are freaking out.
2/1/09
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