July 20-21 Wednesday-Thursday
Our family was gone. It was just Ryan, Corinne, and myself.. Every day was a waiting game for the next test results. The big result we were waiting for was the genetic and metabolic testing (Long Chain Fatty Acid test) that would confirm or rule out if Corinne had Zellweger’s.. It could be any day or another week until the results came back. During that time we were trying to keep Corinne stable so we wouldn’t have to make any drastic decisions…. If Corinne needed assistance breathing and needed to be put on a ventilator there was some concerns she wouldn’t be able to ever get off of it. Children cannot leave the hospital on a ventilator. There were concerns that Corinne could start to have heart failure and we would have to make a decision if we wanted to do an open heart surgery to repair the holes. If Corinne had Zellweger’s we were not prepared to put her through something so evasive that could potentially only give us weeks or months more with her. But if Corinne’s genetic disorder gave her a longer life expectancy then a heart surgery may be worth it. We just hoped we wouldn’t have to make any decision like that until genetic results came back. Corinne at this point had a tube going up her nose delivering her oxygen, she had an arterial line in her belly button so they could draw blood from her without having to stick her with a needle every time, she had a picc line in her foot which went up around her heart to deliver her medicines, nutrients, and lipids, she had a pulse ox on her foot which would tell you the amount of oxygen in her blood and then she had leads on her stomach that read her heart rate and respiratory rate. All of these things made it difficult and sometimes impossible to hold her. Corinne was 8 days old and I had only held her 3 times totaling about 30minutes. Ryan had held her twice. The ache I felt to hold her was so strong some times and then I would focus on what I could do. I could touch her and rub her feet and hands, give her kisses, change her diaper, and even bath her. Every morning I would come in and write down all the medicines she received, their amounts, and when/how they were given. Every morning she had an x-ray done of her heart and lungs to see if fluid had started to build up which could lead to her heart failure, I would write down whatever the cardio team said. Every few hours she was getting blood drawn and tested which would tell us her her pco2 and ph levels (if they got to high we would have to put her on a ventilator). I was almost obsessed with knowing what every little thing said and meant. Every day the team of doctors would meet at Corinne’s bedside to discuss where she was and what needed to be done. If Ryan and I were sitting bedside they would review her case with us.. so Ryan and I would just linger for hours hoping we could get information as to what the next steps were and how she was truly doing medically. We were always afraid to leave and we would miss out on updates. We understood the doctors had lots of patients and they didn’t always have time to meet with parents to give updates. So we always wanted to be readily available. Then at night I would call my sister Sarah and go over Corinne’s day medically and emotionally. Sarah would help explain things to me and offer suggestions on questions I should ask. I was so overwhelmed by all the information to learn but I was determined to know it! During our meeting with the team of doctors on Thursday they decided to take out her arterial line because they weren’t drawing blood as often and to remove the tube that ran down her nose and delivered oxygen and replace it with a nasal cannula ( just a t bar that stuck in her nose and delivered a flow of oxygen it was less evasive). By removing these two things it would make it easier for us to hold her. We were so excited! But since it would still be a difficult process to hold her and potentially taxing on Corinne we decided we would go grab lunch and then come back so we would be prepared to hold her for a long period of time ( over an hour!) When I returned Corinne was having a seizure, it lasted for over 3 hours, towards the end she stopped breathing and they had to bag her to get her breathing again. That night we knew there was a big chance Corinne would be put a ventilator and her chances of getting off would be slim. It also would make it so we couldn’t hold her, I never held her after lunch.
No comments:
Post a Comment