Valerie's early morning report began by telling me that Bobby was up all night trying to poo. He didn't sleep well, which means that she slept even worse. But at least it beats him being up all night struggling to maintain his oxygen.
We're hopefully headed towards an end of week coming home party. Bobby's 4 months old on Sunday and we'd like to celebrate the big .3333 in his own nursery. He needs to go down some more on his oxygen help (he's almost weaned now) and he needs to show he can tolerate his old feeding regimen (we're getting there).
The lingering issue is that he still has fluid on his lungs. He came to the hospital on 1 diuretic and he's going home on 3. We think the difference is that before we were trying to live with the congestive failure. Now we're trying to get rid of the fluid completely. The hospital carefully weighs each and every diaper Bubs has in an effort to see if his output (water leaving his body) is appropriate for his input (food). We're not there yet. But, happily, this won't keep us at the hospital.
7/30/08
7/29/08
The Tired Mamas Love Their Wiggle Worm
We had a good day today. Bobby had an echocardiogram that came back with good news - his heart functioning is as it should be, given his physiology. He also had an ultrasound which showed that he is only retaining trace fluid in his chest. His right lung, no longer collapsed, is still not working great, but these tests show us that the cause of his problem is probably not serious. He just needs time to heal.
His energy level is much higher than it was before surgery. He is wiggle worming himself into all kinds of precarious positions. This morning I found him with one leg beginning to poke from the bars of the hospital bed. He pulled out his feeding tube in the night (I let the nurse fight that battle). He is mesmerized by the musical mobile the hospital lent us.
Bobby is feeling much much better. Myself, I'm exhausted. Valerie and/or I have been her almost non-stop since last Tuesday morning. The hospital noise and Bobby's crying interspersed with doctor's visits and medical procedures is a lot to manage. I'm going back to work tomorrow. Valerie went back last week. Our nanny will sit with Bubs during the day. V and I will take turns at night. I think this is all part of Bobby's master plan - to gain energy for himself and drain V and I of our strength. By the weekend, Little Lord Wiggle Worm will have gained control of the checking account and the remote control.
His energy level is much higher than it was before surgery. He is wiggle worming himself into all kinds of precarious positions. This morning I found him with one leg beginning to poke from the bars of the hospital bed. He pulled out his feeding tube in the night (I let the nurse fight that battle). He is mesmerized by the musical mobile the hospital lent us.
Bobby is feeling much much better. Myself, I'm exhausted. Valerie and/or I have been her almost non-stop since last Tuesday morning. The hospital noise and Bobby's crying interspersed with doctor's visits and medical procedures is a lot to manage. I'm going back to work tomorrow. Valerie went back last week. Our nanny will sit with Bubs during the day. V and I will take turns at night. I think this is all part of Bobby's master plan - to gain energy for himself and drain V and I of our strength. By the weekend, Little Lord Wiggle Worm will have gained control of the checking account and the remote control.
7/27/08
Sunday in the ICU
Just a quick update today. Bobby is still retaining too much fluid so his doctors are experimenting with diuretics. He's started eating again, working his way back to his old routine. He lost a little weight last week - totally expected given that he went 3 days with no food. He's very stable, but not ready to move off of his high flow oxygen help.
The best news? Bobby who shows no interest in toys is bonding with Elliot the elephant. We're glad he can find some comfort in his new little toy.
The best news? Bobby who shows no interest in toys is bonding with Elliot the elephant. We're glad he can find some comfort in his new little toy.
7/26/08
Swayhawkin' at the ICU
Bobby continues to progress. His lung collapse is now resolved (yay!), and Bubsy is starting to have more energy. He's even smiling occasionally. The doctors have added an additional diuretic - Diuril - to help with his lingering symptoms of congestive heart failure. He's started his NG tube feeds again, slowly at first, of course. He's off the morphine, and is only taking Tylenol and the occasional Ativan dose for pain / restlessness. After hearing about his great progress during the morning rounds today, I was surprised when the cardiac surgeon said he'll probably be discharged in 4 to 5 days. Four to 5 days? What happened to Sunday (tomorrow) or Monday (in 2 days)? The timetable is never predictable when you're Bubsy Malone.
7/25/08
Bobby's Getting Better
Good news this morning from Children's Memorial - Bobby's lungs look much better so his bronchoscopy is canceled. Instead, we're going to start the process of weaning him off of the oxygen. If that starts off well, he'll get to eat for the first time since Monday night.
Right now, he's laying in his bed, kicking his feet, waving his arms in spite of the IVs, in spite of the soft encasings wrapped around his arms in an attempt to protect the IVs from coming loose. Bobby's playing with his tongue by sticking it half way out of his mouth and waving it around, all the while trying to focus his eyes on the oxygen equipment that arcs from the top of his forehead down into his nostrils. He's started talking again. A lot of what he's communicating doesn't sound very happy, but I'm happy to listen to whatever he has to say. And I'm even happier to see that Bubs is feeling better.
I had a good meeting with the cardiologist yesterday and understand the plan better. We'll still be under close monitoring by doctors, but our timeline for surgery is significantly extended. In 3 months, they will do a cardiac catheritization to see how Bobby's doing and we'll make plans from there. Surgery might happen then or it could be a ways beyond that. As for the kind of surgery? We're just not going to know for a while.
After he's recovered from his big week, we should have a Bobby that feels much better. That and the extended repair timeline means that we need to revise our approach to this living with a heart defect. Instead of our life revolving around Bobby's heart, we need to start branching out, working on his development, playing with him more, leaving the house more, living more of a baby life. We had hoped to do this without the specter of more surgery hanging over us and this will certainly be a little harder for Bobby's fretful mamas, but with Bubsy, we're learning to make adjustments.
Right now, he's laying in his bed, kicking his feet, waving his arms in spite of the IVs, in spite of the soft encasings wrapped around his arms in an attempt to protect the IVs from coming loose. Bobby's playing with his tongue by sticking it half way out of his mouth and waving it around, all the while trying to focus his eyes on the oxygen equipment that arcs from the top of his forehead down into his nostrils. He's started talking again. A lot of what he's communicating doesn't sound very happy, but I'm happy to listen to whatever he has to say. And I'm even happier to see that Bubs is feeling better.
I had a good meeting with the cardiologist yesterday and understand the plan better. We'll still be under close monitoring by doctors, but our timeline for surgery is significantly extended. In 3 months, they will do a cardiac catheritization to see how Bobby's doing and we'll make plans from there. Surgery might happen then or it could be a ways beyond that. As for the kind of surgery? We're just not going to know for a while.
After he's recovered from his big week, we should have a Bobby that feels much better. That and the extended repair timeline means that we need to revise our approach to this living with a heart defect. Instead of our life revolving around Bobby's heart, we need to start branching out, working on his development, playing with him more, leaving the house more, living more of a baby life. We had hoped to do this without the specter of more surgery hanging over us and this will certainly be a little harder for Bobby's fretful mamas, but with Bubsy, we're learning to make adjustments.
7/24/08
Bobby's Better Night
"He's doing remarkably well for only having one good lung." These are the words that greeted me during ICU rounds this morning. I'd say they are words you never want to hear, but I'd rather hear that than be told that Bobby wasn't doing well.
Bubs had a much better night. They started giving him regular doses of morphine and he slept much more restfully. After a day of low oxygen readings, he is now responding very well to his oxygen help. He looks much better. He's breathing much easier.
But that lung is still collapsed. We're keeping the same regimen today and if it's no better tomorrow, he's going to get a bronchoscopy where they'll attempt to suction out the congestion that settles around the collapsed portion of the lung.
In better news, his chest tube comes out later this morning. The tube is inserted into a slit in his chest, just above his ribs, for the purpose of draining excess liquid from the chest. The nurses say older, verbal kids agree that its much more painful than the actual surgical incisions because every movement shifts the tube around inside the chest. Last night Bubsy caught his foot in the part of the tube that hangs out, causing him terrible pain. So we'll all be glad to say goodbye to that.
Bubs had a much better night. They started giving him regular doses of morphine and he slept much more restfully. After a day of low oxygen readings, he is now responding very well to his oxygen help. He looks much better. He's breathing much easier.
But that lung is still collapsed. We're keeping the same regimen today and if it's no better tomorrow, he's going to get a bronchoscopy where they'll attempt to suction out the congestion that settles around the collapsed portion of the lung.
In better news, his chest tube comes out later this morning. The tube is inserted into a slit in his chest, just above his ribs, for the purpose of draining excess liquid from the chest. The nurses say older, verbal kids agree that its much more painful than the actual surgical incisions because every movement shifts the tube around inside the chest. Last night Bubsy caught his foot in the part of the tube that hangs out, causing him terrible pain. So we'll all be glad to say goodbye to that.
7/23/08
Bubsy's Rough Night
We had a tough night here at Children's Memorial. Bubs' oxygen levels kept dropping below acceptable levels. He's been on supplemental oxygen since yesterday evening and that didn't seem to help. After an early morning chest x-ray his doctors discovered that part of his right lung is collapsed - a not uncommon result of being intubated.
As we're learning, a lung collapse is serioius, but not emergent. The collapse keeps him from taking big breaths and thus compromises his oxygen levels. The treatment is some therapy - pounding a disc on the colllapsed area of his lungs in order to open up the air sacs, and lots and lots of oxygen help.
Right now, Bobby's on a special oxygen machine that's one step away from a breathing tube. He hasn't eaten yet and won't eat until he's started breathing on his own - certainly not today but maybe tomorrow. He's on a combination of morphine and ativan to help keep him comfortable. One side effect of all the oxygen is that he has swallowed a bunch of air - his stomach is rock hard from his inflated intestines. When he's awake, he's in extreme pain from trying to pass the gas.
But he's hanging in, as is Bobby's way. The nursing care here is great - so far he's had his own nurse for the entire stay. There are intensive care doctors, respiratory therapists, nurse practioners, cardiologists and surgeons following his case. He's needed the attention.
We're still unraveling the differing doctor's opinions. It seems the different parties are settling on a 3 month timetable for surgery, but that, of course, can always change. In fact, I wouldn't be surprised if it changed by the time I write the next update.
As we're learning, a lung collapse is serioius, but not emergent. The collapse keeps him from taking big breaths and thus compromises his oxygen levels. The treatment is some therapy - pounding a disc on the colllapsed area of his lungs in order to open up the air sacs, and lots and lots of oxygen help.
Right now, Bobby's on a special oxygen machine that's one step away from a breathing tube. He hasn't eaten yet and won't eat until he's started breathing on his own - certainly not today but maybe tomorrow. He's on a combination of morphine and ativan to help keep him comfortable. One side effect of all the oxygen is that he has swallowed a bunch of air - his stomach is rock hard from his inflated intestines. When he's awake, he's in extreme pain from trying to pass the gas.
But he's hanging in, as is Bobby's way. The nursing care here is great - so far he's had his own nurse for the entire stay. There are intensive care doctors, respiratory therapists, nurse practioners, cardiologists and surgeons following his case. He's needed the attention.
We're still unraveling the differing doctor's opinions. It seems the different parties are settling on a 3 month timetable for surgery, but that, of course, can always change. In fact, I wouldn't be surprised if it changed by the time I write the next update.
7/22/08
Bobby's Surgery Update
Bobby is fine - resting in the ICU and battling to have his breathing tube removed. Hopefully that will happen later today.
However, Bobby's heart is still not fixed. After opening him up and performing some additional tests, the doctors decided that his left ventricle is to small for the planned repair. They instead put a band around Bobby's pulmonary artery. The band lessens the symptoms of congestive heart failure and buys time for Plan B to be figured out.
But here's where it gets tricky. Our surgeon told us we would wait 6-9 months in the hopes that the ventricle would grow. At that point, we'd either decide to do the 2-ventricle repair or move to our second option - rerouting his blood flow so that blood from his body bypasses the heart and flows directly to the lungs.
Our cardiologist, the same heart doctor Bobby regularly sees, told us that the 2 ventricle repair was unlikely, because of the left ventricle and because he has a problem with his mitral valve. With the 2 ventricle repair off the table, we'd only wait 6-8 weeks for the second kind of surgery.
We're not happy. Obviously, we're not happy that Bobby still has a bum heart. We have no idea what to do in terms of Bobby's day care - do we come up with a 6 week or 6 month plan? We wonder how long we can hold off on his physical and developmental therapy and still hope that he can catch up. And we're simply angry that we're being told very different stories by our doctors. Our cardiologist promised to resolve this tomorrow so now we're in a holding pattern, waiting with Bobby, trying to feed him only the most positive energy.
The good news? Bobby is recovering nicely so far. He has an incision down the middle of his chest and a broken sternum. He'll hopefully be home by the weekend.
Better news? While not a fix, the pulmonary band will make Bobby feel better while we decide what comes next.
The best news? We still have options. While this was a very disappointing bump in the road, it's not the end of the world. The next surgery will come and we will have a healthier Bobby. It's just not today.
However, Bobby's heart is still not fixed. After opening him up and performing some additional tests, the doctors decided that his left ventricle is to small for the planned repair. They instead put a band around Bobby's pulmonary artery. The band lessens the symptoms of congestive heart failure and buys time for Plan B to be figured out.
But here's where it gets tricky. Our surgeon told us we would wait 6-9 months in the hopes that the ventricle would grow. At that point, we'd either decide to do the 2-ventricle repair or move to our second option - rerouting his blood flow so that blood from his body bypasses the heart and flows directly to the lungs.
Our cardiologist, the same heart doctor Bobby regularly sees, told us that the 2 ventricle repair was unlikely, because of the left ventricle and because he has a problem with his mitral valve. With the 2 ventricle repair off the table, we'd only wait 6-8 weeks for the second kind of surgery.
We're not happy. Obviously, we're not happy that Bobby still has a bum heart. We have no idea what to do in terms of Bobby's day care - do we come up with a 6 week or 6 month plan? We wonder how long we can hold off on his physical and developmental therapy and still hope that he can catch up. And we're simply angry that we're being told very different stories by our doctors. Our cardiologist promised to resolve this tomorrow so now we're in a holding pattern, waiting with Bobby, trying to feed him only the most positive energy.
The good news? Bobby is recovering nicely so far. He has an incision down the middle of his chest and a broken sternum. He'll hopefully be home by the weekend.
Better news? While not a fix, the pulmonary band will make Bobby feel better while we decide what comes next.
The best news? We still have options. While this was a very disappointing bump in the road, it's not the end of the world. The next surgery will come and we will have a healthier Bobby. It's just not today.
7/19/08
The Swayhawk Kid
We're in the home stretch now - only 3 more days until Bobby's surgery. Valerie says it feels surreal; I feel numb; Bobby is unconcerned. We take him in Monday for a long series of tests - blood work, echocardiogrm, etc. Tuesday morning we're back for early morning surgery.
We had another emergency room visit/hospital stay last week. Bobby's chest was congested so we went in for an xray and found that, sure enough, he had extra fluid on his lungs. One day and a couple of Lasix IVs later, he came home feeling much better.
Bobby is so much fun to be with. He's started baby talking a mile a minute (like his Mama V. :) and kicking up a storm during bath time. We've even taken him in to the big person bathtub a couple of times- something he loves. His spark is getting brighter every day.
Through these first months, the outward sign of this outgoing, funloving boy has been his mohawk. It started out as some hair sprouts on the top of his head and then extended front to back into a full hawk even a professional wrestler would be proud to call his own. Now its starting to bend to one side of his head. No longer a straight line, its organizing into a semi circle, still waving proudly in the wind. His mohawk has become a swayhawk.
That hair has grown over the course of 4 hospitalizations. When he stopped growing, stopped gaining weight, his hair got longer and stood up even straighter. That hair has helped defined his persona during these early months - to the nurses at the hospital he is Bobby with the mohawk. It draws people to him. It's the hawk that can't be stopped. And when I start to get scared about this Tuesday I think about that hair. It just seems to me that open heart surgery is nothing to the Swayhawk Kid.
We had another emergency room visit/hospital stay last week. Bobby's chest was congested so we went in for an xray and found that, sure enough, he had extra fluid on his lungs. One day and a couple of Lasix IVs later, he came home feeling much better.
Bobby is so much fun to be with. He's started baby talking a mile a minute (like his Mama V. :) and kicking up a storm during bath time. We've even taken him in to the big person bathtub a couple of times- something he loves. His spark is getting brighter every day.
Through these first months, the outward sign of this outgoing, funloving boy has been his mohawk. It started out as some hair sprouts on the top of his head and then extended front to back into a full hawk even a professional wrestler would be proud to call his own. Now its starting to bend to one side of his head. No longer a straight line, its organizing into a semi circle, still waving proudly in the wind. His mohawk has become a swayhawk.
That hair has grown over the course of 4 hospitalizations. When he stopped growing, stopped gaining weight, his hair got longer and stood up even straighter. That hair has helped defined his persona during these early months - to the nurses at the hospital he is Bobby with the mohawk. It draws people to him. It's the hawk that can't be stopped. And when I start to get scared about this Tuesday I think about that hair. It just seems to me that open heart surgery is nothing to the Swayhawk Kid.
7/1/08
July 22nd is Our New Surgery Date
We found out yesterday that Bobby will have his surgery on July 22nd. The doctors don't have any new concerns - our cardiologist just wasn't happy with the original July 31st date so she pushed for something earlier.
It's a little scary, for sure. July 31st seemed like forever and a day from now. July 22nd is 3 weeks from today.
In less scary news, Bubs has broken the 5 kilo mark, which was the weight our doctor was shooting for. That's 11 pounds, 3 oz for us non metric-ized folks. He also slept from 9 pm until 5:30 am this morning. That's just a little something for us.
Three weeks to go isn't very long, so I'd ask on his behalf that you send extra prayers and good energy his way. Today he is struggling with a 90 breath per minute pace. Four weeks from today, that should be cut in half.
It's a little scary, for sure. July 31st seemed like forever and a day from now. July 22nd is 3 weeks from today.
In less scary news, Bubs has broken the 5 kilo mark, which was the weight our doctor was shooting for. That's 11 pounds, 3 oz for us non metric-ized folks. He also slept from 9 pm until 5:30 am this morning. That's just a little something for us.
Three weeks to go isn't very long, so I'd ask on his behalf that you send extra prayers and good energy his way. Today he is struggling with a 90 breath per minute pace. Four weeks from today, that should be cut in half.
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