november 3/4 My God is BIGGER

We've been up for almost 72 hours straight at this point. Shaun and I aren't worth much right now, but I know how concerned everyone is, so I thought I'd better record todays events before I forgot.

Ava didn't sleep Saturday night which is atypical for her. She was fussy all night. She didn't have a temperature, her abdomen was soft, her food was moving through fine, and her stool output in her ostomy was normal. BUT she is NOT a fussy baby. I gave her tylenol about 5 am and an extra dose of her favorite med, ativan, at 6am. Neither phased her, so we took her to the ER at EIRMC at 7am. There    we were told that it was likely a virus based on her mild increased need for oxygen and low grade fever of 100 at that point. I told the doc about her UTI and septic history so he ordered a septic workup. I refused IV pokes from anyone except NICU nurses. Finally the 5th attempt got one in her scalp, which is the least desirable location because they are lost so easily. The ER doc tried to talk me into an IO at that point (an IV into the long bone of the leg) and I told him I wasn't ready for that yet. He gave her a dose of Rocefin to cover the possible infection that I was worried about, though he still thought it was a virus. We decided at that point that we felt comfortable being admitted to the PICU at EIRMC. This is a very NEW unit. Dr. Olson did an assessment and told us that if she got worse that care might be turned over to the attending. Ava was resting but not quietly and was still breathing fast and was slightly tachycardic (fast heartrate). She was given vancomycin and gentamycin. I left for a few hours and Shaun stayed with Ava. When I got back Shaun said that she was still really fussy and inconsolable. The PICU attending had taken over her case. It was now night shift and there were two nurses that drive up from primary children's hospital to work 2 weekends a month. The nurse that had Ava actually had her in the NICU in the past. The doctor was talking to me about getting better IV access and trying to get a central line. All of a sudden he noticed that her breathing changed, basically respiratory failure. At that point he ran a "code" meaning loads of support staff, pharmacy, respiratory therapy etc. Ava was sedated and intubated. At this time the doc was able to get an IJ line into her neck with two ports on it. This line was a huge blessing. Now we decided that we felt more comfortable flying Ava to Primary children's. It was so late, and SHaun and I were so tired that we decided to drive together and get a head start and meet Ava in Salt Lake. So we went home and packed and started driving toward Salt Lake. Before we had left Ava's blood glucose was 11 by one account and 29 by another- either way extremely low in a way that would send a nurse running to the med room to get some sugar solultion for the IV. So on our way, part way to Blackfoot, I decided to call and make sure they got her sugar up appropriately. The nurse told me that the were running another Code on Ava- but this time they were actually doing CPR and compressions. 11:53pm Shaun turned around on one of those emergency vehicle only spots in the median and started heading back to Idaho Falls. I was shaking like a leaf. I called the highway patrol to see if we could get an escort back to the hospital. They said "no" and to drive the speed limit. yeah right. Shaun pulled up to the Er and IO sprinted back upstairs. He followed with Ivy. My dad met us at the hospital too. I watched them run the rest of the code with the life flight present. The attending told me that Ava was in no condition to fly, but that it was necessary to get to Utah. He said that she could cardiac arrest in flight, but that basically this was a risk we had to take in order to get to primary children's hospital. I spoke with the admitting physician in Salt Lake and she stressed the same thing. She said that Ava needed to get on ECMO as soon as possible. In the meantime the EIRMC attending was trying to place an arterial line to get an accurate blood pressure for Ava in flight. This was unsuccessful.   Because of Ava's risks, they let both Shaun and I fly with Ava and my dad drove Ivy to Salt Lake. We took an ambulance to the airport and a fixed wing to salt Lake. The flight was 50 minutes. In flight the RT had to manually bag Ava because she did better than on a ventilator. Then they added nitric oxide to the bag and she liked that better. They were able to keep her oxygen saturations in the 80's and 90's. She was getting milrinone and multiple doses of epinephrine to keep her heart beating hard enough to get that oxygenated blood throughout her body. Praise God she did not code in flight and the heavy doses of medicines were keeping her sustained, not stable, but sustained. At the SLC hangar Ava was immediately put in a helicopter because it could get to the hospital in about 5 minutes. They landed at primaries before shaun and I even got out of the bathroom. Shaun and I were taken by ambulance which is about 15-20 minutes. It was about 3am at this point.  In the PICU (pediatric intensive care unit) they were already prepping Ava for ECMO. There were multiple specialty doctors and fellows in her room. There were about 20 people working to get it done. The same doctor who did her heart surgery and her general surgeon who worked on her esophagus and another cardiology partner worked to place the tubes into her neck veins. Because of her anatomy and the heart "clamping" down he was only able to get 2 10 french tubes in, smaller than he would have liked. From here the blood is diverted from her body and oxygenated with a machine and sent back to her body. The problem was that her severe infection was causing "leaky" capillaries. All of the fluid in her blood stream was leaking into the surrounding tissue. In order to keep her blood pressure up they had to keep giving her fluid boluses. As a result Ava is edematous and is about twice the size of her usualy stuff. Her ostomy drained with loads of bloody fluid. She is very very very sick. Because the two 10 french tubes were not allowing them to correct her pressures appropriately they decided to place another tube in her femoral vein in her groin. This was not desirable because it would limit the draining and circulation of that leg.  They discovered that her lungs were filling with fluid. They decided that the pressures in the atrium in the heart were so high that they were causing blood to be backed up into the lungs. If it continued it would cause the blood capillaries in the lungs to essentially burst. Something had to be done. At this point a PICU doc and multiple cardiac docs took us into the "special" room and told us about the intense risks of taking Ava to the cath lab to try to correct the blood pressures in the heart and lungs. They said that she had a good chance of dying in the cath lab if we decided to go that way, but they were urging us to consider letting her pass away right now instead of having her undergo more interventions. Obviously we fell apart. They left us. We disagreed about what to do. We called Roger and he prayed with us and we all came to the conclusion that we were obligated to perform life saving procedures as long as they were an option and that any "dying" would take place on God's terms, not ours. If God wanted to take her in the cath lab that was up to Him. For the next few hours I repeated to myself that MY GOD IS BIGGER THAN THE CATH LAB. I know it sounds stupid- but it made sense to me. Those next hours were a struggle. We struggled knowing that our God can do anything, but the docs were telling us not to have high expectations. The waiting was intense. Roger and Jen Manwiller showed up. We were trying to pass time by forcing ourselves to eat in the cafeteria. I kept running into Ava's NICU nurses and cried and cried. Eventually it was completed. The cardiology cath lab doc showed me the pictures on her computer. AS IT turns out one of the tubes in her neck was in an incorrect location in her heart. It was an honest mistake. Ava has a pulmonary vein that returns to the wrong side of the heart and the end of this tube was in this vein rather than draining the right atrium like it was supposed to. The cath lab doc was able to thread her wire right next to the tube in her femoral vein and sort of lasso the tube coming from above and direct it to it's proper location. AMAZING! Praise God. This immediately helped to correct her blood pressures. The doc also created an incision between the right and left atrium to help relieve pressures there. THe right atrium was "50" and it should be about "6-8". They got the pressure down to 20. She returned from the cath lab to the PICU. AMAZING!       At about 7pm Roger and I went back to the PICU to check on her most recent lab draws. They were all slightly improved. This is good news, but by no means changes her critical condition. Her survival is really in God's hands. She has a LOT to work through at this point...the organs that didn't have much oxygen for hours and hours, than lungs, and perhaps the brain too. We just don't know what we are dealing with. The next 24 hours will offer more information.    We got a complimentary hotel night through the parent resources coordinator so we are finally here and Ivy is screaming so loud that people are knocking on the walls..so Shaun says I must go.  

Thank you for praying with us and for us on the hardest days of our lives. We don't know what the future holds but it is obviously out of our hands. I love my baby Ava. Lord thank you for giving me another day with her.

The pictures are nothing I would wish anyone to see. Shaun doesn't even want to go in Ava's room. I might post some of the flight or something later.