Keeping Carmen Comfy
Carmen update: Carmen was very congested last week but seems to be doing better now. The new nurses (more on that later) are doing a good job suctioning her so I’m sure that is helping. Carmen’s neurologist is concerned that Carmen may have a pituitary lesion that is causing the swelling of her hands, feet and neck. I spoke with Carmen’s pediatrician and we are trying to decide what to do. There are three options: 1) a brain MRI, 2) blood work to test hormone levels, or 3) do nothing. The brain MRI would involve anesthesia so that is not a good option for Carmen. The blood work would be very difficult as no one can get a vein on Carmen anymore. The only way to get blood is to do a finger prick and then pump the blood out. From what I understand, the blood work would require repeated tests. The swelling doesn’t seem to bother her so I think we are leaning towards doing nothing right now.
About a year ago, Dave and I spent a great deal of time thinking about our goals for Carmen’s care. We ultimately decided that our main goal is to keep her comfortable. Each decision has to be based on “is this making Carmen comfortable today?” What we did not realize was how many hard, hard decision we would have to make along the way. To treat or not to treat and how to treat has come up over and over. The last time Carmen was in the hospital, she was in great distress the 45 minutes it took for the nurses to get the IV in her foot. We said no more. Hospice has given us the help and tools to keep Carmen home. Having Hospice does not mean we don’t treat; it means we treat better and with the goal of comfort in mind. Carmen’s pediatrician is 100% on board with these decisions. We want Carmen to be comfortable at home with her family when she takes her last breath, no matter when that time comes.
I have been waiting to update on the nursing situation until we had good news. We don’t have the schedule set in stone yet but things are going WAY better! We ended up switching to a new nursing agency. We were really hesitant about this decision but ultimately decided it had to be done. Carmen’s insurance case manager did her usual crazy-fast stuff and we went from one agency to another in one weekend. We now have four nurses who are doing great. We are so, so, so thankful that Carmen is getting good care again! Thank you God!!!!!!!!!!!!!
Monday, during our errand-running, we stopped at a hobby store and Lauren played with the trains. I tried to take a picture but she was way too fast for me. I was sitting next to Carmen’s stroller and noticed Carmen’s foot hanging over the side. She may not move much but she does manage to get comfortable!
Too cute!
oh, so precious! she does look comfy!
Thats so cute. You always remind me to take more pictures! I love the ones you share.
That is such great news about the nurses! I had been praying for the nursing situation.
I cannot imagine having to make the decisions you have to make regarding Carmens care. You are such wonderful parents to her.
God bless,
Debbie
Yes, in full agreement with Debbie. Answered prayers. YHWH has you all in the palm of His hand. And, your every step is planned. He knew the perfect family for Carmen and the amazing blessing for you. Hallelujah!