Sunday, February 21, 2010

Hospital update...

Wyatt had the sweat test scheduled first. This test uses an electrical current to 'charge' an area on the forearm to make it sweat and they use a special collection device which draws the sweat into a very small tube. It takes about an hour all together and it's not painful, per say, but it's not very comfortable (or so we were warned). They are ruling out Cystic fibrosis with this test.

He did great through out and was happy when he was finished, only to find out he didn't sweat enough. So, the lab tech had to call the doctor who ordered the test and asked him what he wanted to do. He decided to just run the blood version....the Cystic Fibrosis gene analysis. The poor guy....he made it through the first hour long test only to also need labs drawn. But he was a trooper, as always. He climbed up on the chair by himself and put on a brave face.

It's now done and over with....and we wait. I plan to call later this week about the results and also ask about the results of the immune studies that they drew several weeks one ever called me about those. I would usually go by the "no news is good news" rule of thumb, however we've done that before only to be blind sided at a follow up appointment with results that were not as expected. Not fun!

After we finished the sweat test and lab work we headed to have the impedance probe placed. The impedance probe is a small spaghetti sized tube/wire that is inserted through the nose and goes down into the stomach. It measures the amount of acidic and non-acidic reflux a person is having and exactly how far up the esophagus it's traveling. Inserting the probe is not fun. Bryan and I have had to insert numerous NG tubes (nasal gastric feeding tubes) into Wyatt when he was a baby....I didn't like it then and my feelings haven't changed now. The impedance probe has a sensor on the end of the tube that makes it little more uncomfortable to insert at first. It was tough, he was scared and uncomfortable. It broke my heart....but I know it needed to be done to figure out exactly what they can/need to do to help him feel better each day. After an hour of the probe in place he didn't mind it being there. He could feel it in the back of his throat but it didn't slow him down from enjoying his lunch....a pancake, scrambled eggs, bacon and apple juice.

After lunch we wandered through the hospital. His first stop was the gift shop where he scored a few fun items, then the cafeteria for drinks and the last stop was the child life room. I wish I had brought my camera along on our walk. Wyatt had a GREAT time playing ping pong in the child life room!

 His eyes are much bigger than his stomach allows, but he was really enjoying ordering anything his little heart desired! He was SO tired come dinner time that he fell asleep very quickly after he finished eating.

That was when all the 'fun' began for Bryan and I. Wyatt sleeps with a c-pap machine due to apnea which is said to be caused by the neuro-muscular disease. He is also hooked up to his feeding tube and receives a continuous feed through the night (during this test they wanted to run it through the night to see the results...we typically run it during the day due to his comfort.) Anyway, the night was filled with seemingly continuous beeping. If not from the pump that was supplying his food, then it was from the c-pap/bi-pap machine. At one point the nurse noticed Wyatt and the bed was soaking wet....yep, we had fed the bed (the medicine port on the side of the tube opened up and it drained the formula out into the bed.) A lot of good that will do during a test that is reliant on him having food in his belly! Oops! After a new set of sheets, a gown change and a change in feeding pumps the beeping stopped from that area.

The respiratory therapists never did figure out the problem with the one point there were 5 RT's in the room trying to figure out the problem. One of them decided "it was only one night, he should be ok." In my head, I was wondering if she would be "ok" if her oxygen was compromised throughout the night and she frequently awoke with her airway collapsed and unable to breath?!? Maybe THEN she would have cared a little more.

The morning came, along with our waiting for the doctors to round.

The probe came out much easier than it went in and we were on our way home. We're very happy to be reunited with Maggie and Jilly! We should hear from his doctor sometime this week with the results and the next step she recommends.
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