Cincy Update-the LONG Version!

Wow, where to start? OK, let's go back to Tuesday! Jaime started his day very early with a CT of his Chest under anesthesia. During which time he received EIGHT pokes to start an IV that he had in him for literally 20 minutes. :( He woke up pretty hysterical, but calmed down about 30 minutes later. We went back to the hotel, then met up with The Glahn's, another family with a CDH little guy who was in the RCNIC.

LCDH Ethan & Jaime at Skyline Chili

We had lunch with them, it was really great to see them. After lunch, we headed back to the hotel where we met up with one of Jaime's primary nurses, Jaime.

Jaime & Jaime.

She was pretty awesome....and it was totally by coincidence that we were all in the same area at the same time! :) After her visit we headed back to the hospital where we had our pulmonary appointment.
After lots of discussion about Jaime's history, we looked at the CT together. The CT showed that Jaime has a generous size right lung, however only about 20-30% of it is actually functional. It was much less than we had all hoped it would be. There were some areas that looked like they were slightly damaged, on both sides as well. Additionally, it was noted that the diaphragm area on the right side was slightly elevated, something that will be watched with chest x-rays for reherniation. Yep, I said the "R" word. They are all thinking it's probably from Jaime's inscisional hernia pushing things up, but nonetheless, something that needs to be watched! (UGH)
After the pulmonary appointment, we met up with Carrie and Carter Adler (Jaime's NICU buddy).

Jaime and Carter

Carrie drove over an hour away to have dinner with us! Thanks, Carrie! We had a lot of fun, it was neat to see the boys together and to hang out with someone who "gets it." After dinner, we went to the Luken's house. Bev had a pedicure scheduled, so I went with her...we both have some purty toes! :) (Thanks, Bev, that was a super fun night!) Tom and Jaime stayed at Bev's with Albert and Anna! I think they wore Jaime out....thanks, Anna!

Jaime & Anna

Wednesday was a whole new day of interesting news; it was OR day. We got to the hospital just after 7:00 A.M. where we were ushered back to the pre-op room and greeted by the hemophilia team and IV team....as well as our OR nurse. Jaime got 2 more needle pricks (if you're counting, that's a total of 13 in 3 days...there were more to come!) He received 2 doses of Advate (IV Factor medication) prior to entering the OR. Once ready, I carried him into the OR sedation room, where I held him until he went to sleep....that took like 30 seconds! I HATE leaving my sedated baby behind! You'd think after all of his trips to the OR it would get easier, I think it just gets harder as he gets bigger and becomes more aware! :(

Dropping off my baby in the OR.

After about 36 minutes, they were calling us to the consultation room. There we met up with the ENT and Pulm. Teams. We were told that Jaime still has pretty significant tracheal malacia which is most likely the main culprit to his respiratory issues and that they were unclear as to whether or not Jaime has a narrowed airway below that. Below that his middle right bronchial narrows (he's always had this, too). These things will never go away and will most likely cause issues on and off throughout his life. ENT told us that his tonsils are big, obstructing about 20-30% of his airway, but if they remain large with no issues, he won't have to have a tonsillectomy! :) Everything else looked good. They did biopsies of his nose and lungs, as well as labs while in the OR (2 more pokes) to check on a few other things...we won't know those results for a while.
We went back out into the waiting room, then we were called back by the GI dr. He told us that Jaime's esophagus down to the top of his intestines looked good. He did have bumps in his stomach that the dr. thought may just be incidental and lymph nodes, but he biopsied them to make sure it was nothing serious. Again, we won't have those results for a while.
Jaime went to PACU, we got to see him fairly quickly. He recovered VERY WELL! :) After a few hours, Jaime was taken up to his hospital room where he was admitted over night. Later in the afternoon, Jaime had the "pleasure" of having a barium enema! This is the test that we found out today when we followed up in GI/Feeding Clinic showed a distended colon. We were told that Jaime's colon was basically a "man-size" colon. He is very stretched causing large build ups of stool. This is from his chronic constipation and lack of proper hydration. We are going to give him medication for this in hopes that it helps. I asked how long it will take to improve and the answer we were given was it took years to get like this, it will take years to get back to a "normal" size. If the meds don't work, we may have to consult with a colorectal surgeon to learn how to arrogate his colon daily. Additionally, they have changed Jaime's formula to Boost 1.5 calorie with Fiber, he is to have 3 boxes a day and 8 ounces of water. Anything above that is extra calories for him. Hopefully this will calm things down and start to help, but it's a long process and it won't happen over night. It will take months to see changes! :(

Feeling better after fluids and a bath, post-op.

Other than that, we met with high risk who basically recapped everything for us. The dr. is still pretty concerned about Jaime's significantly sunken in pectus which we're going to closely watch...just in case intervention is needed. We also talked about play groups and toddler classes in which we were told to hold off on for now. It was better for us to wait until he was 3 to put him in the early intervention preschool. It's all about the risks outweighing the benefits. Also during today's appointments, Jaime was reweighed, today he was almost 27lbs, but that was "wet." Meaning he was on IV fluids, so it wasn't a dry weight. His height however was much different than the other day. He was physically placed on a board and measured, he was....drum roll please....35 inches tall! Yep, this is an accurate height with a head circumference of 19 inches. Dr. Haberman was pleased. We were kind of laughing because on any given day Jaime's weights were between 5-50%. Averaging around 20%. :) His height was 50% which is AWESOME and his head is above 50%!

At the Goasis an hr away from HOME! :)

I guess the sad part was his neonatologist gave us his discharge papers with diagnoses added instead of subtracted. I think he has a list close to 20! :( So, now we're home and we have to start the IV pokes all over again in the ER for the next 3 days so that Jaime can get his post-op Factor! Stupid hemophilia!
So, that's the long version. Any questions?