We are all adjusting to life after Bobby's surgery. Valerie and I agree that this new world we're in feels very different - his heart is no longer our primary concern, we have moved on to thinking about daycare and therapy and getting rid of the feeding tube.
Bobby doesn't feel well today. We think we may have aggravated his sternum that still needs to finish healing. He's been so active that we probably rushed his recovery a bit. I stayed home from work today and Valerie and I have been exchanging worried phone calls all day. I'm very comfortable now with dealing with symptoms of heart failure - not at all comfortable when he's achy or has a stuffy nose.
We're looking for new daycare, starting the end of next month. It's very difficult - folks are scared away by Bobby's feeding tube, even though, as we tell them, its much less work than bottle feeding. That said we have one option that's logistically challenging but feels like a great fit for Bobby. So we'll continue to look, knowing that we have a safety net. Its very hard to have so many people turning down our wonderful son. The good news - no one seems fazed by his Down Syndrome, just that tube.
We're starting physical, occupational, and speech therapy. In speech, our goal is to get rid that darn tube. Bobby's progressing - what was a horrible oral aversion has become manageable. He's learned to suck on his thumb. His poor muscle tone won't let him keep his hand to his mouth for long, so he's learned to use both arms - one as a brace and the other as the object of his thumb sucking desire. I love to see the resourcefulness in him.
In Physical and Occupational therapy we're working on his neck extension. Again because of muscle tone issues, Bobby can't turn his head from side to side. Instead, to see around a room, he extends his head back and views the world that way. Another resourceful ending, but one we can't encourage. So, we have exercises to work on his neck muscles. The new direction feels very appropriate - Bobby's learning to face the world with his chin down and his eyes straight ahead while Valerie and I are changing our focus as well, attending to Bobby's future in a world beyond heart defects. It's awkward and exciting for us all.
8/18/08
8/2/08
Bobby's Home
Bobby came home this morning. We are very relieved that today was the day - he's so tired of being poked and prodded that he was screaming at even minor procedures. Who can blame him? He got the last of his 3 IV liness out today - this one a central line that went into a vein by his heart. Last night they removed the stitches from the arterial line in his wrist that bled forever when they took it out last week. His chest is still swollen from his broken sternum. His cheek is scratched and raw from the tape that's been on his face to hold various feeding tubes and oxygen support. He's had endless thermometers and stethoscopes waved in front of him, stuck on and in him. Enough is enough. Now, he's asleep in his bassinet, tucked under his own blanket in his own house. It's quiet, it's dark, and it's a relief for all of us.
And an even greater relief? The swayhawk, suffering from little care and Bobby's tough times, is bowed but remains unbroken. We'll be washing it and returning the hawk to its full glory later on - after we give Bobby some time to recover from his debacle.
Thanks to all of you who have supported us these last weeks. It's been a tough time but your thoughts and prayers have seen us through.
And an even greater relief? The swayhawk, suffering from little care and Bobby's tough times, is bowed but remains unbroken. We'll be washing it and returning the hawk to its full glory later on - after we give Bobby some time to recover from his debacle.
Thanks to all of you who have supported us these last weeks. It's been a tough time but your thoughts and prayers have seen us through.
7/30/08
Input and Output
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.
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.
7/29/08
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.
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