Bobby is allergic to milk protein. We went to an appointment at the University of Chicago today, and after hearing our concerns and reviewing the tests previously done at Children's Memorial, the doctor is confident that Bobby has an allergy to milk proteins. Apparently, children can build a tolerance to these issues in the short run, but eventually the allergies lead to the symptoms Bobby's been having. It's not critically serious - he will outgrow it, maybe in a few months. Of course we're concerned, as always, that this is not the correct or complete diagnosis and another ugly issue will rear its head. You'd think we'd be use to that by now.
I'm furious with CMH. The milk allergy showed up in the endoscopy performed in October. It was either overlooked or minimized (our new doctor said that the test isn't cut and dry-it has to be interpreted in the context of the patient's overall condition). So, perhaps they missed it then, but to not revisit the results during our recent hospitalization? Unforgivable. And, we came home to find a message from the Cardiology department at CMH with a referral to a hospital with a good GI department.
The solution to milk protein allergies is what we're doing now - feeding Bobby a formula where the amino acids are already broken down. Its not a great solution, he can't digest the calories he needs. But he's maintained his weight in the last week, which is very good news.
Since its not the sort of thing that will clear up in a matter of days or a few weeks, its onward with surgery. We've asked the surgery team to put us back on the schedule. We'll report back once we have a new date.
In the meantime, Bubs seemed to enjoy getting out of the house today - his first visit outside in 11 days. The boy does enjoy a good car ride, as long as the driver keeps a good pace that is. Our little back seat driver squawks out a long lecture when we have to stop at a light. Its fun watching him voice his displeasure - that boy is getting more like his mama(s) every day!
1/18/09
First Tooth
We came home from the hospital on Friday. Bobby is now on Elecare, a special prescription formula where much of the proteins are already broken down. It passes much easier and helps his gastric flow issues. Feeds are a little rough, but nothing close to what we had last week. He's keeping his food down and is a much happier boy.
What a frustrating week it's been! We can't figure out why Bobby keeps having these issues. We have a second opinion coming up a week from tomorrow, at U of C's Children's Hospital. Hopefully a fresh set of eyes will shed light on the subject.
We won't put him under the care of GI at Children's Memorial again if we can help it. Their behavior was so bad that our cardiologist and nurses were repeatedly apologizing. Patient Relations got involved as well. We don't expect much to improve as result of that interaction - the patient relations representative openly told us that he wouldn't pursue the matter if we had already decided to move on to another hospital. At least we know that the GI department's bad reputation has been fairly earned.
It's lovely having Bubs home. He cut his first tooth on Friday. Just a reminder from him, I think, that he's going to keep doing his thing while he waits for us to get our act together and get his heart and GI tract fixed.
What a frustrating week it's been! We can't figure out why Bobby keeps having these issues. We have a second opinion coming up a week from tomorrow, at U of C's Children's Hospital. Hopefully a fresh set of eyes will shed light on the subject.
We won't put him under the care of GI at Children's Memorial again if we can help it. Their behavior was so bad that our cardiologist and nurses were repeatedly apologizing. Patient Relations got involved as well. We don't expect much to improve as result of that interaction - the patient relations representative openly told us that he wouldn't pursue the matter if we had already decided to move on to another hospital. At least we know that the GI department's bad reputation has been fairly earned.
It's lovely having Bubs home. He cut his first tooth on Friday. Just a reminder from him, I think, that he's going to keep doing his thing while he waits for us to get our act together and get his heart and GI tract fixed.
1/17/09
1/14/09
Hospital Time
We've been in the hospital two days now. We had a rough time Monday night - Bobby could not tolerate even small feeds. He's been on an IV since yesterday, which helped rejuvenate his hydration levels and gave his tummy a much needed rest.
The GI doctors think that this is just a virus. Unfortunately, I'm never quite sure if a GI diagnosis of a 'virus' means "he really has a virus" or means "we don't know what it is, so let's hope it goes away with no treatment and we can bill your insurance company same as if we'd actually done something" or "we don't think you'll accept another acid reflux diagnosis so lets try a virus. It's harder to disprove".
We've started feeds again today. He's done well with Pedialyte this morning. We'll work him up to full feeds over night. If there are no issues, he goes home tomorrow. If there are issues, we'll be back to GI to refine the diagnosis. Once he's better, we'll reschedule surgery, likely in the next couple of weeks.
The GI doctors think that this is just a virus. Unfortunately, I'm never quite sure if a GI diagnosis of a 'virus' means "he really has a virus" or means "we don't know what it is, so let's hope it goes away with no treatment and we can bill your insurance company same as if we'd actually done something" or "we don't think you'll accept another acid reflux diagnosis so lets try a virus. It's harder to disprove".
We've started feeds again today. He's done well with Pedialyte this morning. We'll work him up to full feeds over night. If there are no issues, he goes home tomorrow. If there are issues, we'll be back to GI to refine the diagnosis. Once he's better, we'll reschedule surgery, likely in the next couple of weeks.
1/13/09
1/12/09
Surgery Detour
Bobby had a very rough GI weekend - he was sick most of Saturday and then Sunday we put him on half feeds. We think he has gastritis again. He can't handle much volume in his stomach right now. Anything over 3 oz makes him sick.
So, when we brought our concerns to Bobby's presurgery hospital visit, they opted to postpone tomorrow's surgery. Instead, we were admitted out of concern that Bobby is getting dehydrated. That's bad for anyone, but its extra trouble in a cardiac patient who takes diuretics.
The other goal of this visit is to get a consult with the GI department. But, it seems, they don't see patients after 3 pm so we'll have to wait until tomorrow to have a doctor take a look at him. We're coming to the conclusion that the GI department here is pretty poor. This morning, they decided, without even examining Bobby, that he had no GI problems serious enough to delay surgery. Fortunately, his surgeon thought otherwise.
My prediction is that we'll be here most of tomorrow waiting for our consult. Hopefully, though, this will be our only night here. Based on Bobby's diagnosis, surgery will likely be in a couple of weeks.
Thanks to all of you for keeping us in your thoughts. Right now, I'm sitting in the dark next to Bobby's bed listening to him raspberry himself to sleep. He's had a rough day. He spent 2 hours getting blood drawn this morning, had a chest x ray, was examined by various nurses and cardiology specialists, and is now enduring a night in a strange place. The nurses have made quite a fuss over how big he is and how cute he continues to be. The extra attention definitely helps with the stress of being here. At least it helps his proud mama. I can't imagine a better patient than my son. He is a patient, sweet love. I just wish he didn't have so much to be patient about.
So, when we brought our concerns to Bobby's presurgery hospital visit, they opted to postpone tomorrow's surgery. Instead, we were admitted out of concern that Bobby is getting dehydrated. That's bad for anyone, but its extra trouble in a cardiac patient who takes diuretics.
The other goal of this visit is to get a consult with the GI department. But, it seems, they don't see patients after 3 pm so we'll have to wait until tomorrow to have a doctor take a look at him. We're coming to the conclusion that the GI department here is pretty poor. This morning, they decided, without even examining Bobby, that he had no GI problems serious enough to delay surgery. Fortunately, his surgeon thought otherwise.
My prediction is that we'll be here most of tomorrow waiting for our consult. Hopefully, though, this will be our only night here. Based on Bobby's diagnosis, surgery will likely be in a couple of weeks.
Thanks to all of you for keeping us in your thoughts. Right now, I'm sitting in the dark next to Bobby's bed listening to him raspberry himself to sleep. He's had a rough day. He spent 2 hours getting blood drawn this morning, had a chest x ray, was examined by various nurses and cardiology specialists, and is now enduring a night in a strange place. The nurses have made quite a fuss over how big he is and how cute he continues to be. The extra attention definitely helps with the stress of being here. At least it helps his proud mama. I can't imagine a better patient than my son. He is a patient, sweet love. I just wish he didn't have so much to be patient about.
1/7/09
Surgery
Well, we're coming up on another big day for Bobby. He's going to have his second major surgery on January 13th.
We approach the date with mixed emotions. Handing a baby over to a surgeon is rough - the hardest part of the mama gig as far as I'm concerned. Plus, we're not getting the surgery we want. After getting a second opinion and having a conversation with Bobby's surgeon, we've reconciled ourselves to the fact that Bobby's heart problem cannot be repaired. We have to go to a Plan B work around.
We've been talking about Plan B for a long time - this is the fix where his blood supply gets rerouted so that blood from his head flows directly to his lungs (the bidirectional Glenn shunt procedure). In a couple of years, they will do a second surgery that takes the blood from his lower extremities and sends it to the lungs. At that point, his heart will be a single ventricle, meaning we're only asking it to do half of its normal job and pump the blood from the lungs to Bobby's body.
It's been very frustrating getting here. We were first told there was a 90% chance of sticking with Plan A, the complete fix that has few long term issues. That moved to 60%. Right now, we're pretty much at 0%. And trying to get a prognosis for Plan B has been really difficult. We've heard "We know people are fine with it until their 30's. The procedure is too new for us to know more". We've been told "Well, you'd like to do the complete repair but this is a good option." We've heard, "he might have problems within 2-3 years with this repair." We've ended up with what finally sounds like a reasonable prognosis to us - about 80% of patients who have the single ventricle repair do fine and have normal activity levels into adulthood. As our surgeon says, in 20 years they might just give Bobby an artificial heart, so there's no use worrying about adulthood now. About 20% of recipients have problems in the short or medium term. There's no way of knowing what those problems might be - each sort of issue is rare in and of itself. But, by asking the body to take on a function it's not built for, you risk taking a toll on the lungs, the kidneys, the liver. However, all this pales next to the prognosis of doing nothing - Bobby would not survive his teenage years.
The most encouragement we've gotten happened during our last visit to the hospital, to visit with Bobby's surgeon. We were waiting outside of the surgeon's office. The doctor was delayed in the operating room. An older man, graying hair and beard, walks up to the door, looks to see if Dr. Backer is in, and then turns to us, asking if our child is about to have surgery. We tell him a little about Bobby and then ask if he has a child waiting for surgery. Well, no he doesn't. It turns out he is from Iowa City and is visiting for a cardiac conference. He had heart surgery at the hospital 52 years ago, when he was 3 weeks old. The doctors in Iowa told his parents at birth that he was not going to survive, but an uncle in Chicago arranged for him to fly to the city for an experimental surgery. He since has had 2 other surgeries - one when he was 16 and another when he was 45. The last surgery was performed by our surgeon at the children's hospital. Turns out the 'childrens' hospital will sometimes treat adults suffering from defects that tend to most often show up in childhood.
He talks about how the surgeries are no big deal to him, about how they have always been a fact of life. He tells us that he is self conscious about the scarring and that we should teach Bobby that his scars are a badge of courage. We talk about insurance companies, about how they told him his last surgery was 'elective' and would only be considered necessary if one of his arteries burst (at which point he'd likely be dead).
All the while I'm amazed at how good this man looks. He is a little short of breath, but he's tall and he looks to be pretty fit. He jokes that he is going to need 1 more surgery and wants it done before he's 60 because he can't imagine being a patient in a children's hospital after he is retired. He tells us that he wishes they'd let him be more useful when he is in the hospital, that he'd like to share his story with the older children, help them understand that they can live a happy life.
Then our surgeon comes in. The two men exchange greetings. The surgeon asks after our new friend's golf game. They make plans to meet up at the conference.
We go in to talk to our surgeon about Bobby. We voice our concerns about the lack of clarity surrounding Bobby's surgery, about how we are frustrated that no one will give us a straight answer about what the complications are, so we're having fears that Bobby is going to be in and out of the hospital forever, that he might not live to be an adult. We finally corner our surgeon on the matter. "But what can we expect?" we ask. "Is he going to live 5 years? 10 years? Will he live to be an adult?" The surgeon motions to the door and says "Well, you were talking to the man outside, right? He got a single ventricle repair when he was 3 weeks old and he looks pretty good don't you think?"
Valerie and I are of the mind that we met Bobby's guardian angel that day, coming in to give his mama's some hope.
As for things that make me hopeful, I'd like to give an update on the day care problems we had back in September, where the center (we believe) discriminated against Bobby on the basis of his disability. We sent a letter (detailed in the October blog), copying many, many people. Today we got a letter from Senator Durbin's office, saying they had forwarded the matter to the Department of Justice. After reviewing our concerns, the Justice Department is opening an investigation into whether the center violated the Americans with Disability Act. We don't know what will happen. We still hope to resolve the issue directly with the day care center. But its very energizing to me to know that someone read that letter we sent and someone thought enough of Bobby's situation to act upon it. And for me, someone who usually lets such things go, its heartening to know that it is worth taking the time to be heard.
Please send your prayers Bobby's way in the next week. We'll update the blog with his progress.
We approach the date with mixed emotions. Handing a baby over to a surgeon is rough - the hardest part of the mama gig as far as I'm concerned. Plus, we're not getting the surgery we want. After getting a second opinion and having a conversation with Bobby's surgeon, we've reconciled ourselves to the fact that Bobby's heart problem cannot be repaired. We have to go to a Plan B work around.
We've been talking about Plan B for a long time - this is the fix where his blood supply gets rerouted so that blood from his head flows directly to his lungs (the bidirectional Glenn shunt procedure). In a couple of years, they will do a second surgery that takes the blood from his lower extremities and sends it to the lungs. At that point, his heart will be a single ventricle, meaning we're only asking it to do half of its normal job and pump the blood from the lungs to Bobby's body.
It's been very frustrating getting here. We were first told there was a 90% chance of sticking with Plan A, the complete fix that has few long term issues. That moved to 60%. Right now, we're pretty much at 0%. And trying to get a prognosis for Plan B has been really difficult. We've heard "We know people are fine with it until their 30's. The procedure is too new for us to know more". We've been told "Well, you'd like to do the complete repair but this is a good option." We've heard, "he might have problems within 2-3 years with this repair." We've ended up with what finally sounds like a reasonable prognosis to us - about 80% of patients who have the single ventricle repair do fine and have normal activity levels into adulthood. As our surgeon says, in 20 years they might just give Bobby an artificial heart, so there's no use worrying about adulthood now. About 20% of recipients have problems in the short or medium term. There's no way of knowing what those problems might be - each sort of issue is rare in and of itself. But, by asking the body to take on a function it's not built for, you risk taking a toll on the lungs, the kidneys, the liver. However, all this pales next to the prognosis of doing nothing - Bobby would not survive his teenage years.
The most encouragement we've gotten happened during our last visit to the hospital, to visit with Bobby's surgeon. We were waiting outside of the surgeon's office. The doctor was delayed in the operating room. An older man, graying hair and beard, walks up to the door, looks to see if Dr. Backer is in, and then turns to us, asking if our child is about to have surgery. We tell him a little about Bobby and then ask if he has a child waiting for surgery. Well, no he doesn't. It turns out he is from Iowa City and is visiting for a cardiac conference. He had heart surgery at the hospital 52 years ago, when he was 3 weeks old. The doctors in Iowa told his parents at birth that he was not going to survive, but an uncle in Chicago arranged for him to fly to the city for an experimental surgery. He since has had 2 other surgeries - one when he was 16 and another when he was 45. The last surgery was performed by our surgeon at the children's hospital. Turns out the 'childrens' hospital will sometimes treat adults suffering from defects that tend to most often show up in childhood.
He talks about how the surgeries are no big deal to him, about how they have always been a fact of life. He tells us that he is self conscious about the scarring and that we should teach Bobby that his scars are a badge of courage. We talk about insurance companies, about how they told him his last surgery was 'elective' and would only be considered necessary if one of his arteries burst (at which point he'd likely be dead).
All the while I'm amazed at how good this man looks. He is a little short of breath, but he's tall and he looks to be pretty fit. He jokes that he is going to need 1 more surgery and wants it done before he's 60 because he can't imagine being a patient in a children's hospital after he is retired. He tells us that he wishes they'd let him be more useful when he is in the hospital, that he'd like to share his story with the older children, help them understand that they can live a happy life.
Then our surgeon comes in. The two men exchange greetings. The surgeon asks after our new friend's golf game. They make plans to meet up at the conference.
We go in to talk to our surgeon about Bobby. We voice our concerns about the lack of clarity surrounding Bobby's surgery, about how we are frustrated that no one will give us a straight answer about what the complications are, so we're having fears that Bobby is going to be in and out of the hospital forever, that he might not live to be an adult. We finally corner our surgeon on the matter. "But what can we expect?" we ask. "Is he going to live 5 years? 10 years? Will he live to be an adult?" The surgeon motions to the door and says "Well, you were talking to the man outside, right? He got a single ventricle repair when he was 3 weeks old and he looks pretty good don't you think?"
Valerie and I are of the mind that we met Bobby's guardian angel that day, coming in to give his mama's some hope.
As for things that make me hopeful, I'd like to give an update on the day care problems we had back in September, where the center (we believe) discriminated against Bobby on the basis of his disability. We sent a letter (detailed in the October blog), copying many, many people. Today we got a letter from Senator Durbin's office, saying they had forwarded the matter to the Department of Justice. After reviewing our concerns, the Justice Department is opening an investigation into whether the center violated the Americans with Disability Act. We don't know what will happen. We still hope to resolve the issue directly with the day care center. But its very energizing to me to know that someone read that letter we sent and someone thought enough of Bobby's situation to act upon it. And for me, someone who usually lets such things go, its heartening to know that it is worth taking the time to be heard.
Please send your prayers Bobby's way in the next week. We'll update the blog with his progress.
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