Hospital Results....

Sorry it's been a few days since I've posted...I know many of you have been worried or simply just curious as to what we've learned from all of Jaime's tests.
After much begging on my part, Jaime was discharged on Friday. I told the doctors that I really wanted...no NEEDED to be at my Grandmother's Wake and funeral. After spending the day getting results back, they agreed to let us leave! It was nice to be able to attend the funeral as a family. It's nice being back home, too! Jaime has spent way too much time in the hospital. He's spent a total of 21.5 weeks in the hospital to date. (I know there are some babies who were in the hospital longer...each case is different. Rainbow's currently has a 6 mos. old CDH'er in their NICU).

On to the results:
Chest X-ray: Unchanged, still slightly diminished right base.
Echo cardiogram: Mild pulmonary hypertension and an atrial flow issue
Respiratory Panel: Negative
Barium Swallow: Penetration/Reflux
Sleep Study: Tacypnic with periods of Apnea during REM sleep.
PT Eval: Low tone and weakness in the core muscles

So in English...just about all of it does not come as a surprise. The chest x-ray will probably always read as such, the echo was a bit disappointing, but again, not surprising. Jaime has been off of his pulmonary hypertension medication since his last hospital stay in Cincy. As for the atrial flow...that's just something that will need to be watched. Jaime will have to go back to 3 month cardiology follow-ups. :(
As for the respiratory panel, we're thrilled that it was negative. The thought of Jaime having RSV...UGH, I don't WANT to think about it. He does have a red ear, most likely that will lead into (if it hasn't already) a full blown ear infection. Again, no surprise. Jared had ear infections with every new teeth. Jaime is definitely teething.
Now for the swallow study...well, there are mixed feelings on this. Jaime is still showing signs of penetration with thin liquids. This means that there is definite potential for aspiration. Jaime is still refluxing pretty bad, too, it even showed up on his swallow study. He is at the highest dose of his Prevacid at this time. We are being referred to a GI dr. There was some talk of conducting another PH and impedance probe (study to test reflux) and there was talk of strictly NG feeding Jaime formula while continuing to spoon feed purees. There was also talk of a Nissen (stomach wrap to prevent/control reflux.) This would mean another surgery...I'm not willing to consent to this as of yet! We'll see what the GI doctor has to say. In the meantime, Jaime will be having a stomach emptying test. They want to see how quickly his stomach empties, if it's slow, there are a few medications that he can be put on to increase motility. The theory is, if his stomach empties faster, then there will be less in it to reflux. Again...nothing will be changed until GI sees him and Dr. Mom researches all of this! Seems so invasive to me!
Now on to the sleep study. I was pleasantly surprised to hear that his apnea spells were NORMAL. OK, normal for a baby of his age...it's a preemie thing. The reason his spells are so significant is because he is tachypnic. That means that Jaime's normal respirations are very fast, so when he has an apnea spell, it's impressive. They only last 8 seconds and off of O2 his sats drop to the high 80's low 90's. The doctors prefer his sats to be more in the mid 90's range, so at this time the treatment will be to continue O2 at night. After talking with both the pulmonologist and the cardiologist, they both agree it's important to keep him on O2 to protect his heart. The study will be repeated as he gets older, but for now, no real change.
Speaking of O2, we are to keep his sats up in the mid 90's at all times, so when he's low, he needs to be on continuous O2. All this means is that we'll have to monitor Jaime's levels a little more closely. So, I guess sometimes you'll see Jaime with O2 and sometimes not. As for now, he's on it continuously. He still has a pretty bad cough that is causing him to choke, gag and vomit more, but with clear lungs, we can only hope he improves more and more each day. His cough is wiping him out, so the O2 is more of a comfort than anything else at this point.
The final thing I mentioned is his evaluation from the Physical Therapists in the hospital. They both agreed that Jaime isn't reaching his milestones because of his weak abdominal (core) muscles. We know this, it's not a surprise either. It makes sense though. Without a strong core, nothing can be done. They did give me some wonderful hand-outs on exercises to do with him to strengthen his core. I'm hoping it will help! He so wants to move, but just can't. (He can in his walker, though...he LOVES it. Him and Jared were playing "cars" today. Jared made street signs and lights and hung them up all over the walls. It's pretty cute.)
Oh, I almost forgot, the speech therapist at the hospital agreed to see Jaime as an outpatient in our home. She's very sweet and energetic. She knows exactly what issues Jaime has with feeding, swallowing, etc. She was extremely helpful during his previous Rainbow stays, too. Hopefully we can get something scheduled soon!
So, that sums up our hospital stay. We have LOTS of follow up appointments in the next few weeks. (GI, Pulmonary, Cardiology, Allergy...etc.) Honest there's never a dull moment in the CDH World.

Below are some pictures that we took yesterday.

The boys all dressed up for the funeral. My Grandma would have been so proud of them, they were both really well behaved yesterday (they looked super cute, too, thanks to Aunt Janet.)

Jaime & Poppy (A.K.A. BP) rocking & relaxing last night.

The boys! :)

Grammy & Jared playing BINGO...the exact game that we played with as kids from my Grandma's house, dated 1974. Jared LOVED it...Grammy did, too!
BINGO!!!!

Tired Titi! ;)

I just want to take a moment to thank all of you for the many thoughts, prayers, cards, food and flowers that you sent our way this past week. All were very much appreciated. My Grandma's funeral service was very nice and well planned by my Aunt Sandy and Mom. Grandma would have been pleased with the girls hard work to make everything special! My father read Grandma's eulogy what turned out to be my blog posting from the day of her passing. When I wrote the post, I didn't plan on it being her eulogy, but it was a great honor to be part of the service, especially since I wasn't able to help out with her funeral planning due to Jaime being in the hospital. Anyway, all and all it was a very nice, fitting farewell to my Grandma! She will truly be missed, but we are all finding comfort in the fact that she is no longer suffering.

Thank you for continuing to follow Jaime (and our Family's) journey! It is wonderful to know that we have so much support out there!