GREAT Care Conference

Top L to R: Social Worker Heidi, RT Vicki, Dr. Shin
Bottom L to R: Jana, Case Manager Lupe, Dr. Weinberg

So, we had our Care Conference today, and we are so excited...

We are going home on WEDNESDAY! (well, at least it is planned for Wednesday)

I came with a list of at least twenty questions, and before I could even ask them, Dr. Shin answered all of them...Justin always says the man is a walking encyclopedia. He's a genius. =)

As far as Moriah's heart goes, she has high Right Ventricular pressures. No one is happy to see this, but they believe that over time, with continued pulmonary rehab and growth and nutrition, the pressures will come down. There is nothing you can really do about this. We are administering medication (sildenafil) with the hope that this will help. Only time will tell, and we will monitor it with a heart cath in 6-12 months. However, Dr. Shin seemed positive and hopeful about Moriah's heart, given all that she has endured in the past eight months.

Dr. Weinberg, Moriah's immunological Dr., was also at this meeting, and had some great news...
he doesn't think Moriah has my t-cells! They re-tested our blood, and according to this new test, he didn't think that she had them. This was such a relief.
However, he still believes that she does have an immune deficiency even though they can't define it, and that she will require prophylaxis antibiotics (bactrum and fluconizol -sp?) for at least the next year. Also, they will continue to do the Digeorge mutation test to see if she does, in fact, have it.

These were the two biggest topics.

We also have been dealing with Moriah's gut/motility issues. So far, we have been using rectal tubes to decompress Moriah's tummy when it gets extremely distended. We hope that once we come off her narcotics completely that her gut will start moving. In the meantime, we just might have to have a rectal tube at home because I wont let her take Reglan which is the only medication available for motility. When she was on Reglan in the past, it made her have these awful tics that they thought were seizures. The only other motility medication is the antibiotic, erythromycin, but she is allergic to it.
It is just a difficult balance because weaning the narcotics is going to take a while. She is very sensitive to the weaning process, and she is on some pretty hefty doses of ativan and methadone.
Oh, and one more thing, Moriah might be a little too chunky (24 lbs)...they are talking about decreasing her feeds because of how chubby she is. I keep saying it is water weight, but it's okay. I don't have to agree with them on everything. =)

With all that to say, we feel really good and ready to go home.
I'll be honest, and say that we have some anxiety about going back to chla since the last time we were there, Moriah went into severe septic shock. This was the most tramautic experience of our lives, and we definitely have a little post traumatic stress going back to the place where it happened. But, we plan on setting up a Care Conference with her team there, and hope to build a solid, working relationship with them in order to care for Moriah.

Please pray that
-Moriah continues to do well and stay infection-free
-We would have safe travels
-Justin's job transfer would go smoothly
-We wouldn't have anxiety about going back to chla, and that we would trust that God has it all under control
-The right Nurses and Doctors would be provided to take care of Moriah

Thank you all so, so much.
Much love,
Justin and Victoria