We've had a very hectic week.
Bubsy hasn't felt great - he started off the week with some bad GI troubles. His little tummy works very hard, but it just can't process all the food he needs. We have another appointment at University of Chicago on Monday. We had a good talk with out pediatrician this week about the fact that we may just have a boy who has his gastric ups and downs. We're not convinced, but also believe that the only long term solution to this is to get him on more solids (thank you sheri t. for the perspective). It's so hard to know when to push and when to accept that this is just a difficult situation, especially since his earlier bacterial infection would not have been diagnosed if we hadn't kept pushing for more testing.
We had Bobby's early intervention assessment. This is where he is worked out by physical, occupational, feeding/speech, and developmental therapists. Overall, he is developmentally in the 4-6 month range, depending on the skill. He has regressed a bit from where he was 3 weeks ago as all the sickness has weakened him and made him lose some of his hard won progress. But we'll win it all back again.
The feeding/language therapist was excited about his interest in food and in communication. So, post surgery one of our main goals is to work very hard on both of these areas - with feeding obviously taking the lead. I'm very excited about the language piece. He understands that communication is a two way process - he will spend long periods of times trading raspberries and dinosaur calls with us. He regularly stares at our mouths trying to mimic the movement. My greatest hope has always been that we have a boy who will have good communication skills. To me, that seems to be the key to happiness for a boy as social as he is.
We will be moving to having physical therapy 2 times a week until he has recovered from his surgery and gets back into a good groove. No matter the developmental area, the main challenge we have now is getting him to sit up. With that, feeding and cognitive development will be greatly enhanced.
In the not so distant future we'll start on orthotics, which are plastic braces for his feet and ankles that help him distribute weight equally when he stands. From Nanny Beth's experience, these are something he will likely have forever. She also attests to the fact that they aren't the braces like we old people think of braces - they are fastened with velcro and are not a big deal to the kids who wear them.
Surgery is 2 weeks from today. It will be good to get past that hurdle and get back to making progress on these goals. In the meantime, its going to be 50 degrees tomorrow so we hope to get out of the house. Bobby loves being out. I can hardly wait until summer time comes and we can go for long walks and play in the sun shine.
2/6/09
2/2/09
New Surgery Date
Our new surgery date is Friday, February 20th. Our goal is to stick with that date, GI issues are no, simply because we don't want Bobby to develop more severe complications from his heart problems. His oxygen saturation levels are falling a bit (that's the % of the blood flowing through the body that is oxygenated. In a healthy person the levels are near 100%. Over his young lifetime, Bobby's levels have gone from low nineties to high eighties to mid eighties to low eighties...you get the picture.
And it looks like we might still have GI issues. After the optimism of last week we're back to vomit vomit and more vomit. We're feeling a bit demoralized. Its scary having this issue that gets worse and worse over time, with every apparent 'solution' falling by the wayside and, quite frankly, its hard to keep our chin up when we're being drenched with vomit every few hours.
For now, his doctor has suggested that we give him a lighter food load for the next 24 hours in the hopes that this is just a temporary set back.
For his part, Bobby enjoyed his introduction to football during last night's Super Bowl and is wonderfully sweet. He's regaining some of his strength and will have his next set of Early Intervention assessments this week. Incredibly, he seems as happy now as he's been in his life - his smiles and laughter are coming easier and easier. He's become very ticklish under his chin and on his belly. He's learning to give kisses, sloppy affairs that cover our whole cheek or chin. And he's blissfully unaware that his mamas are freaking out.
And it looks like we might still have GI issues. After the optimism of last week we're back to vomit vomit and more vomit. We're feeling a bit demoralized. Its scary having this issue that gets worse and worse over time, with every apparent 'solution' falling by the wayside and, quite frankly, its hard to keep our chin up when we're being drenched with vomit every few hours.
For now, his doctor has suggested that we give him a lighter food load for the next 24 hours in the hopes that this is just a temporary set back.
For his part, Bobby enjoyed his introduction to football during last night's Super Bowl and is wonderfully sweet. He's regaining some of his strength and will have his next set of Early Intervention assessments this week. Incredibly, he seems as happy now as he's been in his life - his smiles and laughter are coming easier and easier. He's become very ticklish under his chin and on his belly. He's learning to give kisses, sloppy affairs that cover our whole cheek or chin. And he's blissfully unaware that his mamas are freaking out.
2/1/09
1/26/09
And the correct answer is...
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!
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.
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