Thursday Update

Yesterday I wrote saying how Andie took a turn south. Well, lets just say that we feel like we're at ground zero again.

Andie stats continued to spiral down during the course of the night. The night doctor had the luck of putting two new IV's in. One in her arm and the second in her neck. The reason why they put the new IV in was because they felt that the one in her left leg was old and possibly getting infected. Also the left leg had started to leak. We felt maybe that's one of the reason why Andie was not coming back to her normal stats like before. We had in the past an IV leaking and once it was replaced she shot right back up to her normal stats.

After the new IV's were put in all the pumps and tubes on the tree of life had to be replaced. Which the night nurse changed out. It took most of her shift to do the deed. But after all her hard work, Andie's stats never really improved but rather crept down slowly.

In the morning Brooke and I looked at Andie and started to look at each other. We knew something just wasn't right with her. Andie was looking pale and gray. Not the right look in the condition she's in. We also realized that we have to accept the reality of how sick Andie actually is. It's a conversation that we didn't want to have, but had to. In the past whenever one of us was down, the other would support the other with words of encouragement. But this morning was different.

We spoke to the day nurse who has been with us since day 1. She knows Andie and has been there through the best and the worst of times. I mentioned to her that we should have a meeting with all the doctors involved which she said "I think that would be best at this time". So we met - the staff dr., the cardiologist, the pulmonologist, the nurse and the hospital social services director.

We had a few hours to wait before all the doctors could meet together. It's very hard to get their schedule to meet for such a meeting, but they did. It felt like forever before we met with them. Brooke and I discussed everything we wanted to talk about. Our mothers came in and immediately fell into our sadness of the reality in front of us. Let's just say it was a very emotional morning.

When we met with the doctors I was first amazed how strong Brooke and I actually were for this conversation. It's a conversation that no parent wants to have with a medical professional in regards to their child. The doctors knew why we wanted the meeting and they started with saying that they have exhausted their toolbox of solutions in helping her hypertension. in fact they had two colleagues from around the US that they had calls into for any advice on something they could try. We know the doctors have tried everything and they've been very patient with us with all the questions we pose to them every day. But they are just as baffled as we are. Probably more so because they know what they're doing. They did suggest that Andie may have Peripheral Vascular Occlusive Disease. Its a very rare disease and is not the best to have. But if so, then this would explain why she has gone south the times she has. But we're hopeful that she is just stubborn and has PPHN. We discussed other topics and options that are personal so I won't go into any further details on the meeting.

After the meeting I went home for a couple of hours. Got some new clothes and did a couple quick chores around the house. When I came back to the hospital there was a crowd in Andie's room. The pulmonologist had an idea to put one of medication that helps relieving stress on the vessels directly into her breathing tube. The amazement was her stats improved and her color started coming back. So at this point we (I mean they) are trying something new out of the ordinary. But so far it seems to be working. Where this takes her, we just don't know at this point. But we're hopeful.

It's been a few hours since the enabilizer was introduced with the milrinone and she started her SAT in the high 90%. She has dropped into the mid 80%. But we just don't know what this means. The staff is still trying different variations of her meds hoping to get that right dosage. We pray for a smooth night. I think we all need it here and we could use some decent sleep for a change. We're used to the chimes of the medical equipment and know the good beeps to the bad beeps.

I miss waking up at 3:00 AM and checking Andie and seeing her big eyes looking around. I would always wake up Brooke and we would talk to her. But now she is heavily sedated to keep her calm and help her heal.

Duane