Day 6 and beginning of Day 7

So the past 24 hours have been INSANE for James and I and we honestly couldn't have done it without all your thoughts and prayers! Friday morning I came in to her room and she was doing good. Her X-Ray looked great and her stats were looking pretty good. Around 1030 am her RT started breaking up a mucus plug that was giving Addy a little trouble with stats. Once the plug was broken up her stats would not come back up so the PICU doctor decided it probably best for Addy to be Intubated. This was definitely something James and I were NOT ready for and had a difficult time handling it. After they Intubated Addy she received a PIC Line to help administer her meds. Once all of this was complete X-Ray to take another picture of her lungs and airway to make sure the vent tube and pic line was positioned correctly. X-Ray showed that her lungs were completely clear and the PIC Line needed to be moved a little (ended up going up towards her Brain versus down towards her heart…not that big of a deal though). We were so fortunate to have a close friend of the family Greg Reynolds (Stephanie’s dad) come and spend the afternoon with us to really help us cope and deal with the past week’s events. He is such a great man and we are so lucky to have him apart of our lives. Our evening consisted of lots of close friends and family by our side to help us deal with the mornings events. Randy, Lindsay, Matt, Stephanie, Christina and Dock were a big help. They brought dinner up and we went down to the cafeteria so James and I could get a break. It was so nice to sit with them for a while and just talk normal gossip versus hospital/medical lingo! Sometime in the evening Addy developed a fever and the we had a difficult time breaking it. The highest it got was 102.7 but it’s been hovering around 100-101. They started an Antibiotic last night to see if that would help along with Tylenol and Ibuprofen.


Addy had a great night last night and slept all night which she definitely needed! She has had a good morning. When I got to the hospital this morning she was awake and waiting on me to get here. Once she saw me she got really excited. She really hasn’t tried fighting the vent to much but definitely gets excited and overwhelmed when she see’s people she knows. We reassure her that she’s ok and to calm down and usually she settles back down. This morning her fever has still be hovering around 100-101 so they have been doing a few other test to make sure she hasn’t picked something up while here at the Hospital. They tested her again for RSV and the Flu which both of those came back negative again and just did a Urine Culture to test for a UTI. Each Culture takes about 3 days to get complete results unless of course it’s full blown and then the culture starts showing that earlier. Her PICU doctor is very pleased with where Addy’s at right now and is hoping to remove her from the vent possibly Monday. Her Vent settings are actually lower then what her settings were yesterday on her Full Face Mask (on BIpap) and she’s actually breathing over the Vent which is good too. Extubation is very scary and even more scary to us SMA parents. We are praying that it is successful when the time comes and Addy will be able to go back on her BiPap machine.