Today I told Brandon that he could do anything for 8 days. Of course to a kids 8 days seems like a lifetime. I can understand how 8 days can seem long when you can't eat anything through the mouth and your peers still can. Smelling all those foods and just wanting that macaroni and cheese when you cant have it is torture. Brandon had his swallow study and upper GI Friday. We have had a series of visits with his specialists this week to get the results. Brandon passed the swallow study but just barely. The speech therapist said he was at high risk of aspiration. He also passed the upper GI but "Dr Rummel" does not believe it was read correctly by the radiologist. The report said Brandon swallowed the barium for the GI study and in fact the barium was put in through the g-tube. We are re-looking at the results. "Dr Rummel" does not think he did that well on the upper GI. The specialists believe Brandon should not eat through the mouth at school - 8 MORE DAYS. He can eat very safe foods 100% supervised with me at home and pedisasure through the g-tube. The specialists also are worried about a possible stroke or bells palsy. We are going to have a MRI to check. "Dr Rummel" is not as worried about a stroke or bells palsy, but I do think it is a good idea to recheck any brain activity given the uncontrolled seizures Brandon has had over the last year. Brandon also had another chest x-ray today to see if the pneumonia has cleared and has another appointment with the pulmonologist tomorrow. OKAY ENOUGH ALREADY. How do I even work.
Anyway, bottom line - Brandon will be heavily restricted in food choices over the summer with hopes his lungs will clear and his swallowing will improve. "Dr Rummel" has high hopes he will be back to 100% by the end of the summer if not before. I have had a discovery of a few new devices to help with checking Brandon's lungs. Seventeen years ago I received a pulse oximeter for Brandon that weighs about 10 pounds. They now have a new, portable, electronic pulse oximeter that fits on the finger and provides plenty of information. The one I bought is about $100 and well worth it. I am loving that.
For Brandon it probably feels like a lifetime without his favorite choices for now. As a mom who hates having to make those mom choices- for now no food at school, very limited food through the mouth with 100% supervision and lots of love and support for Brandon this summer.
We have lots more to share in the coming weeks about Brandon's transition, but for now - just lots of hugs and kisses.
More later
Leah
1 comment:
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