WOW! I am packing up the last few items to relocate to St Louis with Rosie. I can’t quite process that I will not be living in my home for up to a year. I have lived in this house for 18 years. It is going to be a big adjustment for all of us. Rosie and I in St Louis. RD and Adam at home in Avon.
Rosie has been in the hospital since Wednesday. She was running a fever for several days and her CF doctor decided to have her come into the clinic on Wednesday. At first she thought it was not her lungs but after an xray and blood work they she thought there were two small areas in Rosie’s lung that looked like the start of pneumonia. So she was admitted to our local children’s hospital with the plan of moving her to St Louis on Monday. The decision on how to move her has gone back and forth. At first the plan was to use an ambulance or plane to transport her to St. Louis. Then they thought she was stable enough for us to drive her to St Louis ourselves. Yesterday, Rosie had another fever and her oxygen sats dropped to 86%, her heart rate was 156 and her respiratory rate was 52. Normal is 94%, 110-120 and 32. She had to go up to 5L of oxygen (normal is 2-3L). The ICU team was called but they decided to watch her and see if she got better once the tylenol kicked in and the fever went down. That is what happened. By the evening she was back on 3L and all her numbers were normal again. But because of that the doctors are telling us that we won’t be able to take her to St Louis ourselves. Rosie is very worried that they will not let me ride with her. We haven’t really gotten and answer one way or the other.
All of this is very stressful on all of us. I am trying to focus on Rosie and not worry about the rest. I’m very worried about my husband. He is very stressed out and I’m worried that this is going to be too much for him to handle. I know he is worried about loosing Rosie and I don’t think any of us could handle loosing both girls so close together. I have chosen to have faith that God will not allow that to happen. I pray that God will allow Rosie to get her transplant and have the change at life that Melanie never got. I think a lot about Melanie and what could have been done differently. There are things that could have been done that were not done. I blame myself for not knowing, for not acting sooner to move her to a different hospital. She could have had a chance somewhere else. Another CF transplant person said this of the same hospital Melanie was at – they sent me to rehab to die. She went to St Louis and got her transplant and is doing very well. I wish we could go back and do the same for Melanie. I hope and pray that taking Rosie to St Louis is the right thing to do. I hope and pray that this is where she will get her second chance at life. she has so many dreams and aspirations for her life. So many friends and family that are praying and supporting her through this journey. I’m not ready for God to take her. I was not ready for God to take Melanie either but He did and He has given me the strength to live without her. I’m not sure that I have been doing much walking on my own. I’m pretty sure that when I look back on this season of my life I will only see God’s footprints in the sand. He has been carrying me much of the time this year.
I started out writing about moving and ended up writing about something else. Funny how writing does that. I try to imagine what it will be like for Rosie and I living in St Louis. It’s hard to picture since I don’t know what anything looks like. I’m sure our apartment will be much different that what I picture in my mind. And I know that living in an urban area will be much different that what we are used to in the suburbs. RD is at the hospital with Rosie and I’m at home finishing up the packing. When I leave my house later today I will have no idea when I will be back. It’s a strange feeling. I’ve been away from my house before on vacation or during hospital stays but I always had an idea of when I would be back again. Now I will be making another place my temporary home. And so begins another season of my life.