Next week will be 4 months since my daughter got her Kidney transplant. She was on HemoDialysis for about 8 years before receiving her new kidney. I try not to be such a worry wort, but I can’t help myself. I spend a good part of my life trying my best to take care of this precious little girl. She comes with great blessing. She is what some would call “A Hoot”. You are never quite sure what will come out of her mouth, and likely it will be a reference to one of the many shows tv series she enjoys, or something random she has picked up along the way.
Ever since she was a baby, as a family we had to learn to adjust and we had to learn to accept. We have always know that her future is uncertain. We pretend like we don’t know and we live as though somehow everything will work out. I get a lot of real support from my family and some friends I have made around the hospital between the staff and the families we bond in a way that is hard to describe. We can peep our head into a room for a quick hi and how things are going to spending hours on end with one another. I have mentioned before in other things I have written how much our hospital family means to us.
So now that the little one is almost 4 months post transplant, I have had the opportunity to observe a few things. I see that nothing about “After” is guaranteed. I have learned that there will be ups and downs and there will be lab errors. I have learned that just because your transplant book says you should look for these things, means those things are as dangerous as they sound and make you think. We have had a few scares so far. A few weeks post transplant she came down with a virus I am sure some type of common cold or bug. We were very scared but she came through with flying colors. Then there was and still is the Virus that seems to have colonized in her system. This may or may not become a problem but her Nephrologist feels that even though it could happen it does not usually present itself so quickly. She got a terrible set of labs, that turned out to be a lab error and she had a visit to the ER for stomach pains, and she is now admitted to the hospital until tomorrow morning with some strange symptoms that have presented nothing. Her lab work looks great and her Urine is not showing signs of issue other than its output which is poor and she is sluggish. If you read the transplant book it will tell you that these are two signs of rejection as well as her Blood Pressure was very high but came down with her medication. Ultrasound shows a great Kidney so we don’t really know what the sluggish urine output is other than possibly we have been doing a lot more walking and it is hotter outside now so maybe she is losing fluid through sweat which is something we never could have recognized before when she was on dialysis.
I feel like every time her temp is 99 and not 98 something is not right, I feel like each time she complains of a pain(which is multiple times a day) something has come apart to her delicately put together insides. I try to slow down my brain and say these are natural worries, it is new and she had a 7 hour surgery including a new organ, a Urostomy and a stint that jumped out! as I say, just a couple of days after surgery. (In the hands of the wound care nurse so that part was not my paranoid I screwed up, it was the paranoid oh no what is going to happen, answer is nothing ) I have never been a paranoid person. As a matter of fact I kind of go through life oblivious to things. Not that I don’t know, not that I can’t and don’t find out the really important stuff, I just don’t pay mind to it. I have always been the person to find humor to get myself through it all. I did it last night while me, my daughter and my friend who was having her own hospital sleepover with her little boy. They had been there for many days and since, my daughter got admitted around 11 he was sleeping and she could sit with us while we waited for the dreaded labs. I have never done this with anyone other than my sisters, or my children and of course my husband when he was alive, losing him has proved to be difficult and in the hospital situations I really realized just how much I miss him. It was so cool to be having a slumber party late at night and our kids were there but ok. Having a Mom who goes through the exact same worries just with their own personal situations, truly was awesome. She would tell us stories and we would tell her stories and I am sure that the bond between my daughter and my friend has been cemented.
I don’t know if every single time she does not follow the exact path I expect(medically) I will get nervous. I don’t know if we will become the hospital pain in the ass family that comes in just to visit and hang out .But this time, what happened was she was nervous. She woke up and said Mommy I feel swollen like when I was on dialysis, she had a headache on and off and she had low blood pressure in the morning and sky high at night, this all sounded like stuff that happened when she had no functioning kidney. So I don’t know if I just love her so much and want to make sure that I am doing the best I can to take care of her. I don’t know if I am becoming a paranoid mess….