Wow it has been a long time since I have blogged!!! A is back to himself and has been for about a week now. He came off the oxygen last weekend and by Monday of last week he was smiling and his happy self. Not too sure what the issue was with him, but I am not complaining!
So things have been interesting with him yet again. We went to Sick Kids last week to see his complex care team and his chest team. More or less just a follow up of his stay that he had there in March. Anyhow, as you probably all remember, he tested positive for pseudomonas while he was intubated. Once we were out of ICU and onto the floor the chest team had come and told me that they did not believe that he really had pseudomonas. They believed that it was a contaminate of some sort. So they wanted to do a swab of his throat to see and the main doctor said “I can guarantee you that it will be negative.” He was VERY sure of himself. I had to trust him as he has been doing this for many, many years.
Well we found out that A’s swab was POSITIVE. His complex team and the chest team have NEVER seen a positive pseudomonas swab of the throat. It is just mind boggling to me how A ALWAYS and I mean ALWAYS is different. So while we were there they did another swab.
I just got word yesterday that this swab was also positive. YES, I can’t believe it. I don’t understand it. And I hate how we NEVER EVER seem to have ANY answers for everything that happens in A’s life and my own for that matter. The chest team called today and they are going to start him on tobramycin. I was so upset on the phone I was in tears. When they first found the pseumdomonas in the ICU, they had started him on two different antibiotics to treat it. But after only two days they took him off those and decided NOT to treat as they believed it was not a real positive. WHY couldn’t they have just finished the course of antibiotics?!? UGH it makes me so angry.
Anyhow, besides that there is not much new with A. We are patiently waiting for his metabolics/genetics appointment which is next Monday. We have been waiting for this day since last March!!! I have started a list of things I want to talk to them about so that I do not forget anything. The complex care team also told me to make sure that I mention our recent loss of H as maybe they will wonder what is happening too.
Speaking of H, I just got my tattoo on Saturday for him. I absolutely LOVE it and I am so happy that I did it. It is hard for me at times because it is like I can NEVER not think of him as I see my arm all of the time. I am getting used to it though and love the fact that I can see him whenever I want. It is just beautiful.
I can’t believe that it has already been almost five weeks since we lost him. Time just goes so fast and it really makes me stop and think about how I have to slow down and enjoy things in life because there is no turning back.
I went on Monday to see high risk to discuss my loss of H. We are starting with some smaller ideas to see if anything shows up and then we will discuss the results. I had bloodwork taken to check my thyroid as well, she is wanting to test me for diabetes. There are some swabs she wants to do as well but we are going to wait for a few weeks for when I go in for another procedure. They are going to insert water into my uterus to see if there is anything wrong with the structure of it. Any of things would be okay because they are FIXABLE. But over 50% of women never have answers that are that easy so I am not getting too hopeful about it. Wouldn’t it be nice though if just once things went in my favor?!
On another note, this little girl needs all the prayers she can get. Every time I read her blog I am in tears. She had went into hospital for a g tube placement and a fundoplication and is now brain dead. Just so horrible that I don’t even know what to say.