I will start off with the good news, we may have solved Makenna's high temperature issue. After all of the tests came back negative, they thought it might be environmental She was on a heat bed that would heat up when a probe on her belly read too low. One of the nurses thought we might have been baking her. We turned off the heat and put clothes on her. She has not had a high temperature since! However, she is still not acting like her feisty self.
I got a surprise visit from my friend Kristin Washburn on Wednesday. She flew in to Philly from Utah for some business thing. She then drove up to Hershey to see Makenna, me and my mom. It was so comforting to see her... it made me miss Utah though! The next day, my mom got to hold her for the first time, it was a great experience for the both of them. My dad, Tom and the boys are coming again tomorrow to spend more time with Makenna. We are so blessed to have great family and friends.
Like I said before, one step forward and two steps back... Makenna's blood pressures have been elevated, she has stopped digesting all of her feeds, and she has periods when her heart rate drops suddenly from about 160 to 80 and then back up, sometimes over 200. Her oxygen saturation still dips down as well. The doctors don't really have an explanation. Her electrolytes are unbalanced because of the diuretics she was getting, so they have stopped that. However, they have to keep a close eye on her so that she doesn't start retaining fluid and go into heart failure. This could explain her digestive problems right now and why she is not feeling too good. But, it doesn't really explain her variable heart rate and high blood pressure. The short term goal is to get her electrolytes back to normal and see if some of these symptoms can correct themselves. Once her electrolytes are where they want them, we are going to be really aggressive to get her off the vent and get her home. Some of these symptoms could be from her underlying problem: trisomy 18. We can't fix that! We will try and treat the symptoms to keep her as comfortable as possible, get her home as soon as we can so that we can hold and love her until she is called home. What joy to bring her home...
There are times when I think about loosing Makenna and it feels as though I will suffocate from the weight of my grief. Never have I felt such grief. However, I am so grateful for my Heavenly Father and the peace that comes when ever I pray and ask for it. He is there and has not failed me. He loves me and He loves Makenna. This I know! I also know that He is there for both of us as we go through this terrible and amazing experience. I have alternated between preparing for her death and preparing for her life. I am terrified of both. I have been trying to put my faith in God for His guildence, comfort, wisdom, love and help.
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