The past few days have been tough. On Saturday night at 1:30 in the morning Shira’s SAT level crashed. I was in a deep sleep with the monitor beside me but as you all know I sleep with one eye open and both ears on alert. I flew out bed and into Shira’s room and she was not doing well! I started frantically working on her performing CPT and using cough assist. Shira’s mucous was thick like glue but clear so the first thing that went through my mind was she might have RSV (Respiratoy Synctal Virus) again. I kept working on her with Maxine hooking up the oxygen to the ambu bag so we could give Shira some restful breaths with O2 in between the chest physio and cough assist. Once I got Shira stabilized I looked at the clock and it was 2:10 a.m. The time flies by when you are so focused trying to make your child breath on their own. You work and work and work on them while you watch them slip away then come back, then slip away then come back. I was just telling Maxine that day that I needed to de stress a bit and relax then that night Shira crashes.
Once I got Shira stabile I started listening to her lungs with the stethoscope and her lower left lobe sounded like a door on really creaky hinges. When I turned Shira onto her right side with her left in the air she did not do well and I immediately turned her to her opposite side. Usually I would stay home after removing a mucous plug but the creaky lung coupled with her desating while on bipap made us go in for an x-ray and cultures to make sure Shira wasn’t sick! I was so focused on Shira while working on her I didn’t realize Maxine had called the ambulance. Once the ambulance arrived it was the same old questions as to what Shira has and how it affects her etc. which I don’t have time to go into. Maxine and I are gong to send some information to the ambulance service and see if we can educate them a little. I am thankful they sent an ambulance with power this time even though we travelled on our battery back up system.
Once we arrived at the hospital we had to go into the ER where our Dr. met us to check Shira out. By this time Shira was in a great mood but not able to come off bipap without crashing so we decided to stay until morning. We were moved into a room of our own in the ER (thank g-d). Shira was hilarious calling out to our nurse Craig, “Craig, where are you, help me Craig!! I think the ER enjoyed having Shira there as a welcome break from all the adult problems they have to deal with.
All of you know how we try and bypass the ER because of germs and go straight to the pediatric intensive care unit and get placed directly in an isolation room to avoid germs; well I was freaking out washing down the room and everything. We had a wonderful night in the ER listening to a woman scream out in pain for 5 hours straight and people vomiting endlessly. I was nothing less than horrified that Shira will catch something.
In the a.m we were moved up to the PICU and into an isolation room. All of the tests for influenza and RSV came back negative and after the consultation with the nurses and doctors we determined that Shira was dehydrated. Shira’s food was put on continuous which cut the rate in half and I started adding more water and she started to recover! It was great seeing everyone in the PICU but of course we prefer running into our nurses and doctors around town rather than in the hospital! We arrived back home at around 3:30 and Maxine let me sleep for a couple of hours as I was up giving Shira her treatments in the hospital through the night while her secretions were starting to loosen up.
I made good use of our time in the hospital this time having our dietician weight Shira, measure her and perform a skin fold test on her. Shira is doing well nutritionally and still growing well! I have plans to have a DEXA Scan done on Shira and with those results see if we can optimize her diet further based on our findings. I’m also arranging for Shira to be looked at by the department of physiology at the University of Victoria and have extensive testing on her physical make up done there also to cross reference with the other tests done on Shira. I really want to understand Shira’s physical makeup and take her nutritional requirements to the next level by being able to deliver nutrition based on more science rather than a lot of conjecture. So while it is always a horrible and very stressful experience dealing with plugging and desat episodes we used our time well in the hospital and got out of their as quickly as possible!
Thank you for all the thoughts and prayers it really helps knowing so many are behind us when the going gets tough!! Brad and Maxine.