A year ago today on Facebook I posted this picture and said "Longest Day Ever". At the end of April we finally found the reason for his trouble breathing, which he had been struggling with since the fall... tracheal stenosis (narrowing in his airway). The entire next week we tried to get in for a CT. We struggled to get an appointment with a specialist, the earliest available being months out. After a long weekend with little sleep we knew that we simply couldn't wait any longer and on Monday we decided to head to the main UofU ER in hopes that they would see the importance of the situation and consult with the highly recommended specialist there, Dr Smith. The nurse in the ER (named Michelle) was amazing, she was very concerned and a great advocate. They scheduled him for surgery the next day and then moved us up to a room where we felt tucked away and forgotten. Another long night with with only 30-60 seconds of sleep at a time, his oxygen would drop into the 70's (normal is 95-100) and set off the alarms and no one would ever come. We were both exhausted by the time morning came. They weren't sure when he would have surgery so he wasn't allowed to eat or drink anything all day. They finally took him back for surgery about 9:30 PM and I sat in an empty waiting room. The surgery was supposed to take less than 2 hours, but finally in the early hours of the morning, around 1:00 Dr Smith came and told me he was done. It was a difficult surgery unlike anything he'd seen, he put my mind at ease and said we'd done the right thing by bringing him to the ER. Shortly after a nurse came and took me to see Chris in recovery. It was great to see him, but shortly after I arrived it was apparent that he was struggling. He was on Bi-Pap and the look in his eye was pleading for me to help him. I felt so helpless not knowing how I could possibly help, so I held his hand and told him things would be OK. The nurses were doing what they could, but he was in respiratory distress. He needed more help. It wasn't long before they rushed him down to the surgical ICU and I was sent out to the waiting room. They said they would come get me in about 45 minutes.
The longest day ever became the longest night ever. Sitting in a new waiting room I waited anxiously wondering how he was doing, trying to sleep a little with only minimal success. Someone had come out and said he was stabilized and so I tried to wait patiently for them to tell me it was OK to come in. Finally at 5:00 I decided to try and figure out how to get back to the ICU. His airway was so small (even after the surgery to open it) that they had to intubate him with a pediatric tube. It was so short that they were very concerned it would come out so they had it carefully tied in and his hands restrained. The backup in case it did was taped to the shelf and every shift change the nurses would make sure they knew where it was at. He was also still sedated. As scary as it was to see him hooked up to so many things, he was so peaceful that it was a huge comfort compared to seeing him in recovery.
The longest day ever turned into the longest week ever as we stayed in the ICU. On Thursday they tried to remove the tube and allow him to breathe on his own, he did good for awhile but then it quickly became apparent it wasn't going to work. This time I was tucked away in the corner and watched the team as they had to re-intubate him. It was terrifying and comforting to be in the room as they did so. So many people making sure he was OK. Staying tied down, hooked to a ventilator wasn't a long term solution so on Sunday they put in his trach. It was about this time that I started this blog. Another week in the ICU and then to a regular room and eventually we were allowed to go home. Life at home with a trach was a tough adjustment. We weren't given the training that they promised and care for his new trach fell squarely on my shoulders. It was terrifying. At his follow up appointment at the end of the month his airway was still about 70-80% blocked.
The longest month ever turned into a long summer as we adapted to his trach and new challenges and trials emerged. We learned and tried to overcome, but things got tougher and harder. Now, here exactly a year later from the "longest day ever." We are sitting at Huntsman with his 3rd infusion of his new DRd medications. Hospitals, blood tests, medications, side effects... it's something we deal on a very regular basis. Our lives have changed and it's hard not to long for the life before, the life we had hoped to have or to be frightened of what lies ahead. Many people in the support groups for myeloma talk about how hard they remember the first year being. We've still got about 5 months before we can put the first year of cancer behind us, but at least we have a different 1 year milestone to celebrate. We are so very grateful to those who have come to our aid and support during this difficult year.
The lyrics to a Mariah Carey song come to mind....
And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive
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