This was not exactly how I expected to spend New Year’s Eve! The doctors and nurses were in a festive mood at 11pm they allowed both parents to be in ICU unit. It was nice to have mom and dad right by my side. We are on the fourth floor and there are many windows in the room which made it possible to some pretty good fireworks.
Later that night around 2am my mom noticed that my heart rate was up much higher. I usually run a steady 100 to 110 but I had jumped up to 150. The talk around the doctors that day was that they were planning on taking out my tube the next morning. My blood tests had been coming back good and they seemed to think I was ready to be off the breathing machine. My mom on the other hand was starting to get worried as my heart rate was not going down.
The next morning mom talked with one of the head doctors and told her that she suspected something different was happening with me. My mom knows me very well and she was convinced that I had taken a turn for the worse. The doctor had not seen me yet and she seemed confident that everything was fine. Once she looked at me, she became very concerned. The next thing you know they were not taking out my breathing tube but putting me on a high frequency ventilator. The word around the unit is when you go on that machine things are really really bad. A xray later that morning showed that both lungs were completely white and I had been diagnosed with double pneumonia. Not good.
Everyone was now very concerned. More anitibiotics were administered and I stayed on the high frequency machine for two more days. I looked terrible. My body became completely swollen. My blood pressure kept dropping. My mom and dad were frantic with worry. My mom asked the doctor if we were at the end of the road. She said she still had a few tricks left in her pocket. The doctors now had added another medication to help boost my blood pressure. If the second drug did not help to bring up my blood pressure then we were in trouble. Thank goodness the second medication helped bring it back up!
The cardiologist came to see me that day. I have a murmur that I always get checked out once a year. The heart doctor said my heart was functioning 100% so that was good news. I am very gray looking and the swelling of my body looks terrible! Recently the hospital had sent by the social worker and the pallative care people. My parents are not so excited to talk to them.
I have a very long road ahead of me in regards to recovery. I have a huge support group out there praying for me. I am not ready to throw in the towel and nobody else should be either!
Love little bull
Oh little Malia, You already hold a special place in my heart, and I’ve never met you! Your website was the first thing I was brave enough to look at when my baby boy, Jaron, was born with MDS in March 2010. And I’ve followed your blog ever since. I’ve been praying so so much for you to fight for your life and for God to heal you! I just love you to pieces and am so thankful that God knows every day ordained just for you! And your mommy and daddy are taking such great care of you! Now get better!