This week we focused on getting ready for Bobby's surgery. Tuesday he had a sedated MRI and echocardiogram. This procedure was necessary because the physiology of his heart isn't ideal for a standard AV Canal repair. The doctors needed more information to decide what to do next.
We had a surgical consult on Friday, where we found out their verdict. It turns out that he's got a very high likelihood of having the standard surgery - about 90%. If for some reason that repair doesn't work they will know while he's still on the operating table and they and will start work on the backup plan.
To understand the surgeries you just need to remember the primary job of the heart - take in blood from the body and send it to the lungs to be oxygenated. Then, take in oxygenated blood from the lungs and send that to the rest of the body.
Right now, Bobby has a big hole that prevents these two functions from being separate. Blood that's been to his lungs sloshes into the wrong ventricle and gets sent back to the lungs instead of out to his body. The whole process is really inefficient so his lungs have to work overtime to keep his oxygen at acceptable levels.
The traditional surgery, the one Bobby likely will have, involves putting a couple of patches on his heart to close the holes. In addition, and this is the tricky part, he also currently has only one valve sending blood from his atria to his 2 ventricles. He needs separate valves. However, the doctors are a little concerned that Bobby doesn't have enough tissue to do the job correctly. If this happens, we have a second option.
This second option doesn't involve a repair of the heart. Instead, the doctors will relieve the heart of one of its two functions. Over the course of two separate surgeries - one as an infant and one when he's three - the upper and lower arteries that feed the heart would be detoured so that they bypass the heart and flow directly into the lungs. The heart then would only have one job - to take blood from the lungs and pump it into the body.
Both surgeries have very positive outcomes. Less is known about the long term viability of the second, simply because the surgery has only been around 20-30 years so they have no data on what happens when folks get older.
In terms of success rates - since 2000, the doctors of our hospital have performed just over 60 traditional AV Canal repairs. Only one child failed to survive, and this child died months later of an unrelated liver failure. The surgeons are very obviously proud of this statistic - one we will be more than happy to add to. Otherwise, the most serious risk of this surgery is that one of the valves will leak and have to be repaired with Bobby is older; more common but less severe problems can occur if Bobby develops an infection as the result of the surgery. These infections slow recovery but don't have long term repercussions.
As I mentioned, less is known about the second kind of surgery but it's success rate is also very high. The survival rate is 94% and Bobby should be able to have a normal activity level after the surgery.
So we're feeling good. Our timeline has been moved from the original 3 month mark to somewhere around 4 months. The side effects of Bobby's heart failure are fairly well under control so, unless that changes, we're going to let him grow for a month longer before surgery.
5/31/08
5/21/08
Bobby Bear's back where he belongs
Bobby's hospital adventures have come to an end, hopefully until his surgery. It wasn't easy. We spent 10 days experimenting with heart medication and diets and were almost ready to go home when Bobby started having mysterious temperature spikes. As is the protocol with young infants, the hospital did blood and urine cultures and a spinal tap. All were negative so they cut us loose even though he was still having the fevers. We've spent the last week working with our pediatrician trying to figure out the problem. More blood tests and more sticks of the needle haven't revealed any major infection. Fortunately, the spikes are becoming less frequent and less severe so we hope that they will soon be a thing of the past.
In keeping with our family traditions, Bobby hasn't allowed his fevers to stop him from gaining weight. Since we hit upon the right type and frequency of formula, he has blossomed from 7 lbs 6 oz to 8 lbs 12 oz in just under two weeks. All this after having been stalled for the three weeks before then.
We're thrilled to have Bobby at home. Its sometimes scary - two days after he was released we were back in the emergency room because his respiration rate was above 100. The doctors have explained that we will just have to live with some of these moments between now and the surgery. Still, now that we're home we can appreciate some of his development. He can now maintain eye contact for short periods of time. He gives us small smiles. He loves his light projection toy - cooing and waving his arms at the light patterns we project on the wall.
His first Early Intervention assessment was Wednesday. EI is a state sponsored program that sends speech/physical/occupational/developmental therapists into the home of special needs kids. Until Bobby is 3, we will have access to these home visits with financial coverage being provided first by our insurance and, if and when that runs out, largely subsidized by the state.
The visit was a little difficult - already Bobby is getting scored. His cognition is at a 2 week level, his movement at a 1 month level, etc. It's tough to hear those numbers and know that we'll be hearing different versions of them for the rest of his childhood. For now, Bobby will receive speech/feeding therapy. The other areas will wait until after his heart surgery. As the therapists reminded us, no child with heart failure develops on schedule. We won't be able to make big gains with Bobby until his surgery.
So, lastly, what about that surgery? Tomorrow Bobby is going to be sedated while he gets an MRI and echocardiogram. These tests are necessary to ensure that the surgeons have the most precise measurements possible. We then have our surgical consult this Friday. After that we'll know a lot more about what the next few weeks hold.
Thanks to all of you for your support over these weeks. 7 weeks down. In another 7, we'll hopefully have a heart healthy baby.
In keeping with our family traditions, Bobby hasn't allowed his fevers to stop him from gaining weight. Since we hit upon the right type and frequency of formula, he has blossomed from 7 lbs 6 oz to 8 lbs 12 oz in just under two weeks. All this after having been stalled for the three weeks before then.
We're thrilled to have Bobby at home. Its sometimes scary - two days after he was released we were back in the emergency room because his respiration rate was above 100. The doctors have explained that we will just have to live with some of these moments between now and the surgery. Still, now that we're home we can appreciate some of his development. He can now maintain eye contact for short periods of time. He gives us small smiles. He loves his light projection toy - cooing and waving his arms at the light patterns we project on the wall.
His first Early Intervention assessment was Wednesday. EI is a state sponsored program that sends speech/physical/occupational/developmental therapists into the home of special needs kids. Until Bobby is 3, we will have access to these home visits with financial coverage being provided first by our insurance and, if and when that runs out, largely subsidized by the state.
The visit was a little difficult - already Bobby is getting scored. His cognition is at a 2 week level, his movement at a 1 month level, etc. It's tough to hear those numbers and know that we'll be hearing different versions of them for the rest of his childhood. For now, Bobby will receive speech/feeding therapy. The other areas will wait until after his heart surgery. As the therapists reminded us, no child with heart failure develops on schedule. We won't be able to make big gains with Bobby until his surgery.
So, lastly, what about that surgery? Tomorrow Bobby is going to be sedated while he gets an MRI and echocardiogram. These tests are necessary to ensure that the surgeons have the most precise measurements possible. We then have our surgical consult this Friday. After that we'll know a lot more about what the next few weeks hold.
Thanks to all of you for your support over these weeks. 7 weeks down. In another 7, we'll hopefully have a heart healthy baby.
5/9/08
Bobby Bobba-Loop's Hospital Adventures
It's been a rough 5 weeks since Bobby was born (he's been in the hospital for 3 of those 5 weeks)... As Anne's last entry discusses, his latest hospitalization started last Thursday (5/1) with symptoms of congestive heart failure (rapid breathing, fluid on the lungs) and poor feeding. We're both exhausted from being at his bedside 24x7, frustrated with Children's Memorial, and not really any closer to discharge.
Shortly after he was admitted to the hospital, the doctors decided that Bobby needed a feeding tube (nasogastric - NG tube), and we were very hopeful that it would solve the feeding issues, but this has not been the case. Instead, he's having problems with food volume, gagging, vomiting, continued excessively rapid breathing, etc. Even the hospital has not been successful at getting him to gain weight... he's the same weight now as he was when he was admitted there (3.38 kg = 7 lbs 7 oz). So, in an effort to give ourselves some respite, we've opted to have a nanny pull the night shift for us at his bedside a couple of nights next week, and Children's has finally (and graciously) offered to loan us a nursing assistant for a few hours, for a couple of nights, too, so we can get some sleep. Bobby's on a telemetry unit at Children's and not the ICU, and in my opinion, they have a really poor policy on how frequently they check on their kids on telemetry... the nurses are only required to do checks every 4 hours. Which means, Bobby might be vomitting from his feeding tube and no one would know it until the next time the nurse checked on him, perhaps 4 hours later. For this reason, we feel like someone needs to be there all the time, since clearly their staff won't be. Frustrating!
Anyways, Bobby's on 3 different heart meds now (2 diuretics and Digoxin), and if we can get some weight on him, hopefully he'll be able to have his heart repair done when he's 3 or 4 months old. That should resolve most, if not all, of the breathing, lung fluid and eating issues we're seeing. Hopefully the three of us can hang in there until then! We're very lucky he's such a forgiving, patient, wonderful little baby, because in addition to the medical stuff going on with him, we're still new parents and are still learning how to take care of our first child!
For now, we're taking things one day at a time. :-)
Shortly after he was admitted to the hospital, the doctors decided that Bobby needed a feeding tube (nasogastric - NG tube), and we were very hopeful that it would solve the feeding issues, but this has not been the case. Instead, he's having problems with food volume, gagging, vomiting, continued excessively rapid breathing, etc. Even the hospital has not been successful at getting him to gain weight... he's the same weight now as he was when he was admitted there (3.38 kg = 7 lbs 7 oz). So, in an effort to give ourselves some respite, we've opted to have a nanny pull the night shift for us at his bedside a couple of nights next week, and Children's has finally (and graciously) offered to loan us a nursing assistant for a few hours, for a couple of nights, too, so we can get some sleep. Bobby's on a telemetry unit at Children's and not the ICU, and in my opinion, they have a really poor policy on how frequently they check on their kids on telemetry... the nurses are only required to do checks every 4 hours. Which means, Bobby might be vomitting from his feeding tube and no one would know it until the next time the nurse checked on him, perhaps 4 hours later. For this reason, we feel like someone needs to be there all the time, since clearly their staff won't be. Frustrating!
Anyways, Bobby's on 3 different heart meds now (2 diuretics and Digoxin), and if we can get some weight on him, hopefully he'll be able to have his heart repair done when he's 3 or 4 months old. That should resolve most, if not all, of the breathing, lung fluid and eating issues we're seeing. Hopefully the three of us can hang in there until then! We're very lucky he's such a forgiving, patient, wonderful little baby, because in addition to the medical stuff going on with him, we're still new parents and are still learning how to take care of our first child!
For now, we're taking things one day at a time. :-)
5/4/08
More Hospital
Today is Bobby's one month birthday. Unfortunately, we had to put the cake and ice cream on hold because Bubba is back in the hospital. He was admitted for a fast respiratory rate and difficulty in gaining weight.
The respiration problem was diagnosed in the emergency room - he has fluid on his lungs. This is expected and treatable. In fact, the doctors have already found the combination of drugs that will keep his condition under control while he gets bigger.
Two consultations with the hospital feeding specialist identified our problems there. Bobby can't drink breast milk from a bottle - it's too thin and he can't swallow fast enough to keep it from flooding his mouth. So, he's now on formula by day and fortified breast milk via a nasal gastric tube by night. He's gained 4 ounces since Thursday night, the same amount he'd gained in the last 2 weeks. He's 7 lbs 11 oz now. Our surgery goal is 11 lbs.
He continues to be a good sport through all the poking and prodding, although we're testing his limits as we practice the insertion and removal of the feeding tube. His sweetness draws everyone close to him. The hospitalization is hard on us all but it's been a blessing to make so much progress in just a few days. We look forward to him blowing out the candles on his real birthday cake 11 months from now.
The respiration problem was diagnosed in the emergency room - he has fluid on his lungs. This is expected and treatable. In fact, the doctors have already found the combination of drugs that will keep his condition under control while he gets bigger.
Two consultations with the hospital feeding specialist identified our problems there. Bobby can't drink breast milk from a bottle - it's too thin and he can't swallow fast enough to keep it from flooding his mouth. So, he's now on formula by day and fortified breast milk via a nasal gastric tube by night. He's gained 4 ounces since Thursday night, the same amount he'd gained in the last 2 weeks. He's 7 lbs 11 oz now. Our surgery goal is 11 lbs.
He continues to be a good sport through all the poking and prodding, although we're testing his limits as we practice the insertion and removal of the feeding tube. His sweetness draws everyone close to him. The hospitalization is hard on us all but it's been a blessing to make so much progress in just a few days. We look forward to him blowing out the candles on his real birthday cake 11 months from now.
Subscribe to:
Posts (Atom)
Posts
