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Tuesday, August 25, 2009

Intake visit

Here we are, pushing thru our initial Loma Linda visit. We met for our intake appointment early this morning with a truly fantastic pediatric doctor, Dr. Chinoock, one of our amazing transplant coordinators and our social worker.

When we got to Loma Linda University, we were immediately impressed with the area. The campus is pretty large, since it is also a school. We made our way to the hospital, which is split into 2 halves. The right half is the main adult hospital and the left is the children’s hospital. We got up to ‘5800’, the floor that will soon enough be the location I spend sleepless nights and stressful days alongside my healing princess. When we made it to the floor, one of the coordinators I have been working with met us. On the way to the conference room, we saw the transplant recovery wing and met Gabriella’s future ‘drug dealer’, the insanely intelligent transplant pharmacist.

We sat and listened to Dr Chinoock talk all about the wait and process to obtain a heart, the transplant itself, and the recovery process. He went into great detail about the medications, how they are balanced, how they are weaned, and how we tackle the inevitable problems we will face as a result of being immunosuppressed. We talked in tangents about faith, medical advancement, and his constant search for new information in regards to post-transplant care. TONS of information. The best part of it all was how he spoke to us, in such a way we knew exactly what he was saying. Cautious of what words he used around '”little ears”. As hard as it all was to hear again, and some of it to hear for the first time, it was helpful. The little things are what get me. Like when he talks about her “dying heart muscles” or “critical problems”. I did ask my famous question to him though. “Doctor, have you ever seen anyone have exactly what Gabriella has?” This is a man who has been doing this at an extremely well respected teaching hospital for 20 years….. and his answer was “No, what she has is highly rare and unique”.

Things we talked about that are key points for my family and friends:

  • An actual doctor and  a transplant coordinator go to pick up the donor heart to ensure the heart is in top condition. Gabriella will be in and prepped, surgery started, before the new heart comes.
  • The surgery for someone of her overall good health is 4-6 hours.
  • She could be in the hospital as little as 1 week, up to months, post transplant. Again, her good overall health is on her side.
  • We will need to live close to the hospital for 3-4 months after the transplant. I will be taking her to clinic twice a week, blood draws weekly, if not more. Biopsies monthly to test for rejection. Living close is going to be crucial.
  • She will be constantly evaluated for med levels, so get her on the right system for her.

The coordinator went over some paperwork with us, also. One paper she put in front of me finally broke me. It was a ‘Consent to autopsy post mortem’. I had to decide and sign a paper saying that in the event God takes my baby from me, they can run tests on her body. No matter how many times I tell myself  she is going to  make it through this and be okay, I was forced to put myself on the other path for that decision. I had a small glimpse of the side of the table I never want to see. The one I had to sign off on or decide something in the event of her death. I surely pray there’s no more paperwork or decisions about that ever again.

We met with the social worker too for a bit. She gave us a tour of some areas of the hospital. She analyzed us and our ability to care for Gabriella. Gave us some resources and information. She gave us some advice we need to pray about, as it is more general advice than anything. It was more cookie cutter information, so we will pray and meditate on all of that from today.

So they are listing Gabriella soon. Most likely in the next couple weeks. I need to get them her dental records and a copy of her social security card…. the 2 missing pieces. She will be listed as a level 2, which is the best case scenario for her. Level 1A kids are the ones in the hospital, struggling and on some form of support, i.e. IV medicines or heart pump. Level 1B are kids who are more critical, but not admitted in the hospital. Level 2 are kids like Gabriella, able to maintain at home and through frequent doctor’s visits, until the donor becomes available. The wait is a bit longer, but necessarily so. They feel she is a good candidate for Level 2 because she is still thriving and growing.

We are not 100% positive when we will be coming here more permanently. There are so many things to consider and avenues we can go. Hopefully that path will become clear through prayer and opportunities. Please pray for guidance to help us know when and what is the right way to go about this!!!

Amidst all of this, Gabriella has had a terribly rough week, so I ask for your strong prayers of comfort. I just recently posted how good she has been, not having many symptoms or problems. But this week has been another story. She is really struggling. Her ‘cardiac asthma’ (inability to breathe well due to the heart-lung connection) is so terrible, she is coughing often. She only has a couple minute breaks between coughing fits, and it was so bad today at lunch she threw up from the force. She has been very tired and weak, also. We are working on fitting in a chest X-ray before tomorrow’s cardiology appointment. The good thing is we are here for the rest of the week seeing the transplant surgeon and more of the facility and participating in a clinic with other post-transplant kiddos. No better place to be if something goes wrong, right?

Thank you everyone for your prayers. It has already been a trivial week for us, but we are prepared to go into the other appointments just as strong.


Megan@SortaCrunchy said...

I am praying right now for sweet Gabriella - that her breathing would calm, that her energy would surge, and that God's Hand would continue to lift and support her. Prayers for you and Paul, too, and of course little PJ. Wrapping arms around you in my spirit, friend.

The Simmons Family said...

It's all so overwhelming at first, but it becomes second nature! I hope the next few days are just as informative as today was. And NO it never gets easier to sign waivers for "in case of death." It's aweful.

Corey~living and loving said...

oh me oh got me teary again. So many prayers.

Mary Ellen said...

Sending prayers