Sunday, December 22, 2013

Once upon a time (Hospital Stay 19,20 and 21)

It's been forever since we posted. Not because we didn't try! It's been a crazy year and honestly neither Sebastien or I had the desire or emotional strength to relive everything again for a second time. It's is hard to describe to others but to sum it up. Life has been extremely exhausting!
Sebastien already posted a little about the house but that's just a small part. 
The year started with several hospital visits and pneumonias (see previous posts). Once we started bipap around April/ May things improved significantly. His lungs were starting to heal and look healthy. Then our nanny got sick right around the time we decided to look for a new house. Many homes were visited twice, once by Sebastien and once by myself as we could not go together. We took Jagger along ones which was very very difficult. 
Our nanny continued to miss more and more days of work and ultimately had to leave us around the time we found a new house due to her health. Moving was a disaster. There was no time for organizing/spring cleaning. Everything was packed mostly by my parents and myself. With my parents help we finally moved around July 4th weekend it was a mess but honestly there was no other way if we ever wanted to move. I am still busy organizing, cleaning and decorating 6 months later.

Then we decided to get nursing. Since our nanny left we had been without help for weeks which had  put a huge strain on Sebastien and my abilities to do our jobs. We both stayed up many many nights till 3 or 4 am just to finish our work when Jagger is sleeping. The whole nursing thing ended up being a disaster also. Usually Sebastien is the one that dramatizes everything but I think he would agree with me. It was one headache after another. 
To make it brief, nursing agency took forever to get doctors orders, insurance approval and find us a nurse. We had two that never showed up. And then two others who quit after 3 days. And one who kept quitting and coming back. The one thing we didn't want and which we made very clear to the nursing agency was that our house is not a revolving door. We want one nurse and one nurse only and not someone new every week. That concept seems completely foreign to them. Also meeting the nurse prior to her coming to start working was another foreign concept. Maybe Sebastien and I are anomalies but to us it seems logical to ensure customer satisfaction. 
After a few weeks of extreme frustration, disappointment and many headaches our insurance decided we no longer need nursing and they denied everything. It didn't help that our nursing agency got orders signed by a doctor that we never met and who doesn't know anything about Jagger. So when our insurance reached out to the doctor to get clarification about prescribed treatments they never heard back and hence denied everything. Two months and two appeals later they now approved it again for 90 days. After that we will see. But a month after approval we still don't have a nurse!

While all this was happening Jagger's health declined significantly. He started having major struggle breathing mixed in with severe pain crises and we ended up in the hospital again in October. This time around though not for pneumonia but atelectasis. His lungs are collapsing because he is too weak to take deep enough breaths. We spent thanksgiving in the TICU for the second time since Jagger was born, so it looks like that his our new family tradition, Thanksgiving in the ICU. We went home the weekend after Thanksgiving but things never improved. Breathing was terrible. Struggling everyday. Doctors started to hint that it's disease progression. We knew this was coming but our hearts still filled with sadness and anxiety. Another hospital stay right before Christmas confirmed that the disease is progressing (Sebastien will post more about that). We were able to do an MRI even though he was awake. Conversations again started to center around further interventions and if we want to Trach him.  I hate talking about it or thinking about it. But I agree with the Doctors. We have to think about it to prevent making any rash decisions in an emergency. It's just extremely difficult because the only reason I would ever consider putting tubes in him is if it improves his quality of life. But no one can guarantee this to us. So we could just potentially prolong his suffering. Its a decision no one should have to make!

After 20 stays we can do it all even de-access a port!

Trauma Room, waiting for an ICU bed, Hospital Stay 21

Let's get on a chair for a few minutes- Hospital Stay 21

Look who served Thanksgiving lunch at CHOA! The Champ himself.

Taking a walk with Mom- Hospital Stay 21

I even got to see Nemo but I was so tired I couldn't keep up with his swimming!

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