Monday, July 26, 2010

Kansas City Day 2 CMH Day

Today was a LOOOONG day. We got up, got all 7 of us thru the showers and had breakfast here at the hotel. We headed to the hospital and WOW. There was alot of people, alot of waiting, alot of moving from area to area, and the kids didn't do so well.
Bob stayed in the waiting room with the kids during testing.
1st was Eli's esophagram. Got him all situated and got the barium ready, and Eli really struggled. He couldn't get his swallow well at all, and had trouble getting enough down to even fully run the test. He coughed once and everyone was concerned he aspirated, then a minute later he coughed and sputtered again and we clearly saw the barium enter his lungs. So the test was obviously immediately stopped. They knew his history so they had the suction and everything ready to go. They were super great! Gotta love being at a children's hospital.
Then we immediately went into his kidney ultrasound. His right kidney was huge and completely full of fluid. It looked horrible.
We met up with Bob and the kids and had a quick lunch and headed up to the kidney surgeon. He said we will continue to wait on the kidney. We will do ultrasounds every 3 to 6 months. We will however go ahead and do the testicular surgery. He thinks their is a hernia that is keeping his left testicle from descending and he still can't feel anything on the right side. For the surgery Eli will be cut open on the left side and they will attempt to remove/repair the hernia, and lower the testicle. He won't know for sure until he's in there, and he says at this point nothing is a guarantee. Until he can actually see it, he can't guarantee if he can fix it, and what Eli's reproductive prognosis will be. So this surgery is schedualed for October 19th. Because Eli is high risk we have to do a ton of pre-op stuff on October 18th, including meeting with a pediatric anesthesiologist, and tons of other things. So it will be quite a few days in KC.
We checked in with the GI clinic, and they are going to wait for full test results and a chat with the doc. They are hoping to get his scope and motility testing done on the same day as his above surgery. Since he will already be under anesthesia they would really like to do it all at the same time.
During all of these tests and visits Bob spent tons of time in and out of the bathroom. We think Ari has a UTI and was in and out of the bathroom 700 times. She had an accident, luckily the hospital gave her a change of clothes. The kids got fidgety and fussy and bored.
This evening we went to the Plaza and had dinner at the Cheesecake Factory. The kids loved it! They thought the cheesecake was "to die for".
Now we are back at the hotel and tiny man isn't happy. He's soooo sleepy and honestly his breathing isn't quite as good as I'd like it. Hoping to get him situated soon. If not will call up to CMH and see what they suggest.
More updates later.

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