Friday, May 20, 2011

Decisions...

Everyday we make decisions and with decisions comes many questions....especially the what if's....

After the test was conducted, Alayna settled back in and went to sleep. I remember going home so confused. Andy and I had discussed transferring Alayna to a different hospital and it was left at that. The thought of moving her scared me and I didn't want to think about it. As I was fixing dinner, Dr Schneider called....

He went over everything that had happened the past 2 days, what the test meant and what improvements Alayna was showing. De Schenider then suggested an EMG. He stated that this would let us know if Alayna had a neuropathy (nerve disorder) or a myopathy (muscle disorder). He stated that they usually don't do these on kids so small. Alayna was still under 5lbs, she was not growing as a baby should. Dr Schneider also mentioned a possible move to St Louis Children's Hospital. He said that they see more of these cases and have better testing. We also came to the conclusion that St John's was not working out for her anymore and we needed doctors who knew more. He had also been in contact with a neurologist in St Louis about Alayna, Dr Anne Connelly. Now all Dr Schneider had to to do was to get St John's on board. We decided before we made a final decision we wanted to see what more tests could be done here. It was also a thought that Alayna would do tests in St Louis and then be transferred back. The thought of leaving our nurses scared me but I also wanted my little girl to get better.

The next day on June 3rd, Alayna gave us a HUGE scare. She turned completely purple and her heart rate went down to the 30's. All I could do was pray, pray that she would be ok. Nurses rushed in. They suctioned her and bagged her. It was one of the most scariest moments of my life. Within seconds, felt like hours, Alayna was back to normal, pink and sleeping! We have no clue what happened, and this wouldn't be the last time this happened.


Alayna had to be reintubated a few days later. Her tubed had moved and she wasn't getting the proper oxygen to both lungs. Alayna had to be reintubated a lot. For one she hated being on the vent and would wiggle the tube out of place. The next day we were told they were going to conduct the EMG test, the next day, Tuesday. They had found  a doctor in Springfield who had done this on babies as little as Alayna.

At 4pm on Tuesday June 8th the test began. They had us wait out in the waiting room while it was being done. I wanted to be with my baby, I didn't know if this test would hurt or not and I wanted to be there to comfort her. Alayna had already showed us she had a temper and I didn't want it to flare! About an hour later they called us back to her Pod, (Pod F), to discuss the test results. The doctor that conducted the test didn't realize she was so small so he did mention that the results may not be 100% correct.

The test showed that she had no neuropathy or myopathy and possible Congenital Myasthenia Syndrome. Ok we were a step closer to figuring this out! Afterwards Dr Crouse (spelled wrong in previous post) came and spoke to us about St Louis. They had ok'd the transfer on St John's end and just waiting for St Louis to say ok. Wow we were really probably going. I didn't know what to think. What would this transfer do to Alayna? Is she stable enough to leave? Will they give us answers. A million questions were running through my head all at the same time.

On that Friday we had gotten a few DNA tests back and they all came back ok or negative. I really don't remember what they tested for but I remember they were bad things. We were very thankful those came back ok! Alayna had another purple spell. They also had to change her tube again because she had a small air leak, this was causing vent settings to be higher than they should because of it. Slowly but surely she was coming down on oxygen and pressure! This was great news. Dr Crouse said this is a sign that she is getting better and her lungs were starting to grow!!




The whole weekend we waited to hear if we would be going to St Louis or not. We had to make plans, get the house in order. We spent all weekend discussing where we would stay and how we would get by. We decided we would put our names on the Ronald McDonald list and stay at his Grandmas in Godfrey. The hospital was about 45 minutes away. Way too far for me, but what else would we do? Our daughter needed the best care, we didn't care about our inconvenience, her health came first.

On Sunday June 12th we were told Alayna was going to St Louis on Tuesday!! It was still unsure of we would just go for testing or stay until it was time to go home. The next 2 days were very nerve wrecking. We were told she may go by helicopter and St Louis has their own transport team. St Louis transport team brings their own doctor. On Monday we found out we were leaving at 8am by ambulance on Tuesday and St John's would be doing the transport. One of Alayna's nurses (Jenny) would be going with us! This would help a little bit with our nerves! Monday night I cleaned up all of Alayna's things. It was a very sad time. We had only been there 4 weeks but we formed bonds with our nurses. Alayna had pictures everywhere. Her nurses would always run and grab the camera when she had her eyes wide open! This mama could not sleep at all that night!




And so our new journey began on June15th, also my husbands birthday!

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