Plans....

Today was a CRAZY day...OK, I don't even know WHY I said that, EVERYDAY is crazy!

I spent LOTS of time with the pulmonologists, OT, SP, and Dietitian here at Rainbow's today. We have a really GREAT team on Jaime. The pulmonologists are "officially" his primary drs. here in Cleveland. We even love the medical student, Danielle who has been a wonderful listener and advocate for Jaime! Wooohoooooo, way to go, Danielle!!!! Dr. Andrew Sokolow has been following Jaime and is our primary Go-to-Guy! He's pretty great, too! (He was very upset that he was not consulted last week when Jaime was re-admitted and assured me that Jaime will always only be on pulmonary service when admitted.) I think between Danielle and Andrew, we spent about 1/2 of our day together brainstorming. Late this afternoon the attending on Pulmonary service came in...I can't remember her name right now, but she, too was helpful. I liked her because, well, she knows our AWESOME Cincy team. Her nephew was a Cincy patient and Dr. Crombleholme did his surgery. So, she felt very comfortable calling down there to come up with a plan for Jaime (she even had Dr. C's cell # in her phone!)

Apparently, Andrew and Dr. Cahill (Cincy Neonatologist) spoke in great lengths about Jaime. The consensus is that Jaime's aspirating (formula is going into his lungs when he swallows) and until that is resolved, his pulmonary issues may not be resolved. Also, his anatomy in general is affecting his overall lung health. There is pressure on the right side from the fascia still being open contributing to some of Jaime's problems, especially when Jaime is constipated or "full" from a large feed. Also, they are thinking that the right base of Jaime's lung is showing signs of collapsing, so the goal is to keep it as healthy as possible to keep it from collapsing. Of course there are all of the other underlying issues that come in to play, too, Jaime's pulmonary hypertension, chronic lung disease, small right lung...etc. Andrew was confident, though that we can "fix" all of these issues and make Jaime "stable" one day. He also reassured me that Jaime's lungs still have room to grow strong and the "healthier" we can keep them now, the stronger they will be in years to come. He also said that Jaime will most likely be on O2 for a long time, but not forever! YEA! There is light at the end of the tunnel!

Anyway, after much discussion between the two facilities, here is their plan as of this afternoon.
1. Jaime's Pulmonary service will remain here in Cleveland.
2. All other services, unless in an emergency will remain in Cincy.
3. Jaime is to be NPO (nothing by mouth) until further notice, per Cincy.
4. All feedings will be NG until Jaime's repeat barium swallow in Cincy next week.
5. There was talk of a g-tube...this is TBD and will be done in Cincy if the need arises.
6. Jaime is to be discharged HOME tomorrow (barring any issues tonight).
7. Jaime will be getting CPT (Chest physical therapy), this they started today in the hospital. In theory, this will help loosen anything that Jaime may have aspirated into his right lung and bring it up and out. Jaime really enjoyed his session with Victorya today. Here's a pic of him through his crib!

8. Back to feedings, Jaime will be placed on 100mls, every 3 hours through the NG during the day and continuous feeds at night. (Tonight it's 46mls an hr. for 10 hrs.)
9. Formula currently is Isomil Advance-soy 20 cal. to be gradually moved up to 24 cal. (again, per Cincy) Jaime's last weight at 12.13 lbs. He needs to be able to intake more calories than he burns.
10. The final plan is to keep Jaime out of the hospital.

We will be going to Cincy on Wed. and have a series of appointments and tests on Thursday and Friday. The outcomes of those tests will ultimately determine Jaime's next steps. It's been quite crazy coordinating everything, but we have a solid plan and Cincy and Cleveland are FINALLY on the same page! Woohoooooooo!!!!

So, we're hoping for a good night so that we can get out of here tomorrow...Andrew said we have to be discharged tomorrow because he's not on this weekend...HA! We agree, we only want him to take care of Jaime and would LOVE to be home.

Well, that has put you up-to-date. We had a super crabby (crying, inconsolable) baby for over an hour because they stopped his oral feeds. He LOVES his bottles, so this will be quite the adjustment for ALL of us! Here are some photos once Amy put Jaime on the pump....2 hours early! Thanks, Amy, good call! We even asked Danielle to write an order that once asleep, Jaime is NOT to be disturbed for any reason (vital signs, weight checks...etc.) This way, maybe we can curb another meltdown due to not being able to feed by bottle! Enjoy the pics...you'll see a happy baby who LOVES his giraffe!



Wishing everyone a great, restful night...this especially for my little Jaime! :-)