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 ;-)
2/26/09
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.
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