Broken Heart | Broken Day

Broken Heart | Broken Day

Today was a rough day for a number of reasons, but I will get to that in a minute. Some of you may be asking how is AA? What is his current state? Well, to tell you the truth, surprisingly well overall. He has been improving on a daily basis in regards to his eating and behavior. Behavior wise: He has been more animated than he has been in a while and was actually up laughing the night away last night until 11pm watching some of his favorite cartoons such as Chuggington and Mickey Mouse.  You could definitely see he loves being home. Meal wise: He has been eating more and more each day. Yesterday, he ate two meals and today he ate three times. We are definitely happy about that. We hope that this improvement could aid him in being happier and who knows, maybe God has a trick or two up his sleeve. At this point, I would really love for God to prove all the nay sayers wrong.
How was today a rough day? Well here goes.
AA:
1) Since we have been home on Saturday, AA has been on IV supplements called TPN. TPN contains various nutritional items to help him stay up to date with his nutritional intake. Well TPN can cause some people to have either very high or very low sugar levels in their blood and this could be very dangerous. It seems that this caused AA to have a blood sugar level of 27. Any of you diabetics out there know that those levels are extremely dangerous. The nursing service had another RN come out to do a blood retake and again his sugar level was a bit higher at 40 but still very low. At this point, Michelle and I were extremely worried and addressed this to the MD team. They believe that the TPN could be the problem because AA has never had this problem. They decided to send us a new IV pump that will control the flow of IV TPN to AA a bit differently than the previous pump. This should help they say.
2) After having this happen, I noticed AA was slightly hot after waking up and let him wake up a bit before taking a temperature. Thankfully I did, because he had a 100.4 F reading, for pediatric cancer patients that is a fever. Well, I got AA ready ASAP and rushed to Sloan to make sure that he can be seen. His temperature went down on it's own. They checked his blood levels, All was okay there. They performed bacterial cultures on his mediport to see if he has an infection, results are not back yet (takes about a week for full results). He also had a throat swab to make sure he doesn't have a throat infection, results are not in yet either. He was given an anti-biotic as a precaution and was given some fluids. They also did a urine analysis which came back negative (negative in this case is a good thing). We should have some more results back tomorrow given that we are going back for a second dose of anti-biotics and will also get some fluids as well. Now he is stable and is sleeping and had a much better night at home.
Now For Michelle:
It actually has been an ongoing struggle for her, given that she has had to go back to work numerous times in order to help provide health insurance for AA and the house for us due to me leaving work and school to care for AA.  Then with the recent news we received last week of the long term prognosis for AA and his battle with cancer it got worse. Yesterday, she had to go prepare all of AA's bereavement arrangements, funeral home, cemetery plot, church mass. That's a lot for any parent to have to bear. This morning started with AA's sugar level scare, then on her way to work, she got off the bus four stops before her stop and was then disoriented as to where she was. The stress and worry has been obviously bothering her. Well, when I called her that I was going to Sloan with AA she finally decided she had enough worry, stress and anxiety. She approached her HR Dept about taking a personal leave of absence due to the over whelming emotions related to what the doctors say will happen with AA within weeks to months. They approved her request for the next month and we will have to see what happens after that. It will be a leave without pay BUT her company was nice enough to let her keep the health insurance for AA's treatment. At this point what is more important, a couple extra dollars or irreplaceable time with AA. I believe I do not have to answer that question for you. You see, medical professionals may not do physically demanding work, but mentally they receive a beating everyday. It is definitely a mentally draining job. She can not afford to have an off day, because that off day can cause her to lose everything she has worked so hard for while also damaging the reputation of her company. What are we going to do to get by? Who knows? Some how God will get us by...
As for me:
Nothing major happened to me thankfully, except for what appears to be a broken crown on one of my teeth. There is now a nice space over a portion of my tooth that was not there before.

We hope for a miracle from above and for health and peace for our lives for all three of us and Beemer of course. Have a good evening!
Roi