Loss Never Ends

I just realized it’s been a month since I last wrote. I guess that’s because things have been going well and we have been able to get into a normal routine. In the last month Rosie has had her 2 month bronch where everything looked great. Her rejection was at 0 again! She had her ph probe placed while she was asleep for the bronch. Placing it while awake proved to be too much for Rosie and we had to move to plan B. She has been back to doing school work and is doing exceptionally well. It’s amazing how much we can get done now that we don’t have to stop for breathing treatments ans she isn’t worn out from just trying to breathe. She made a friend at the Ronald McDonald House. Alek is 15 and also had CF. She had her double lung transplant a few weeks before Rosie did. Rosie and Alek spent a lot of time together and became a good support for each other while they were living away from family and friends at home.

A week ago Wednesday Rosie started to feel a little sick. I thought she might be dehydrated. Her favorite thing to drink is Dr. Pepper, Sprite, Fanta, Root beer. Any type of coke really. She hadn’t been drinking much water or Gatorade. I cut off the coke and had her drinking water on Wednesday and even gave her some water mixed with formula through her feeding tube that night. She woke up Thursday morning and was feeling worse and started to run a fever. By the time we got to our already scheduled clinic appointment her temp was up to 101.4. She was admitted and it was discovered that she had pseudomonas A in her blood. The Monday before her blood work showed that her white cell count had dropped below 1000 putting her at a high risk for infection. We stayed at our apartment except for going to clinic on Tuesday to have her picc line removed. I was trying to protect her from picking up a virus out in public. Little did I know that the pseudomonas in her body (most likely her upper airways) had found a way to get into her blood stream. She was admitted to the hospital and has been on IV antibiotics. She did not feel well at all and spent a lot of time moaning and whining and crying out. Sunday we discovered that her headaches and nausea develop about 30 minutes after one of her IV antibiotics (Cipro) is given. They have decided to pre treat her with zofran, an anti nausea medicine before giving the Cipro. that has been working.  However, her kidneys have become very unhappy with the IV antibiotics.  Her port was removed two days ago. They feel that was the source of the infection.  She will get a few more doses of IV antibiotics and then those will be stopped.  They are hopeful that her kidneys will heal over time and get back to normal again.

I’m so tired of being in the hospital. I am reminded of something the doctors told us about transplant. Transplant is not a cure. It is trading one disease for another. I guess I had forgotten that since everything was going so well and she was able to live life for the first time in a very long time.

Then we got the news  that Rosie’s friend Alek died last Saturday morning. It still seems unreal. She was doing so well with her new lungs and was ready to go back to her home in just a few weeks. They think she may have had a heart attack sometime Saturday morning. Her mom found her unresponsive in the bathroom. I can’t imagine what her mom felt. The irritation I was feeling toward Rosie’s whining resolved right away.  I’m so thankful to be able to lay in bed with her and rub her back, snuggle and watch TV shows on the iPad.  I’m so thankful that I had the time with Melanie right before she died.  I wish she could have been able to talk to me but I know she could hear me and knew I was there.  Losing a child is horrible.  But I can be thankful that I had some for knowledge and was able to say goodbye.

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