and the journey continues….

I have been blogging about my daughter’s health conditions and her journey’s for quite some time. I don’t have a very big following but that is ok. I am good with whatever comes as it makes me feel good to share her, our journey. It helps me to speak about things, hear it for myself and I enjoy writing sometimes.

While everyone all over the internet is going crazy talking politics, I am mostly quietly sitting in my daughter’s hospital room. I am likely to be doing something for or with my daughter or chatting with our hospital family as I call them. This staff of amazing people that truly continues to grow. This admission has been 10 days so far or maybe it is 11 I can’t even be sure. We have very high hopes of discharge tomorrow and very much looking to be home.

We initially went into the hospital for stomach and back pain and throwing up. She is now 8 months post Kidney Transplant and is having some complications. She has BK virus, which I have written about if you would like to know more, Somehow this particular virus likes transplanted kidneys. It is trying to take over but the doctors are like, nah we are really not going for that. So they have done a few things to try to get it to go away but it is still there and putting up its fight. It is quite likely they will reduce, stop or change what little anti-rejection medication she is still currently taking. With this many things can happen, what we would hope for is that her immune system would increase on its own. We would hope that her body would fight it off. If this does not happen there are not too many options and it is likely it will damage the kidney. I have learned from other families that they have experienced this and the kidney is still hanging on, they just have a lot of complications.

During this admission she has undergone, 3 ivs at least 15 blood draws from all up and down her hands and arms,  She got two shots of pain medication before she could even get an iv placed, she has had kidney ultrasound, and nephrostogram and stent removal and replacement. She has had x-rays to her stomach, a head MRI cultures of everything they could culture and finally the gastric emptying study.

I will hope for the best and understand it is not in my control. I can only do what is best for her and let her have fun and enjoy life.

We found a source of her stomach issues by doing a gastric emptying study. It took about 5 hours, she had to eat some scrambled eggs with some radioactive stuff in it and then take x-rays one time an hour starting 5 minutes after eating. This shows how quickly the food digests and looks like it is very very slow way more than normal. They are going to add a medication to see if it can help with that. Should resolve the stomach pain as long as she is not throwing up or anything else that has been on and off for a little while now.

I am pretty sure she is heading on the other side of this urine infection that she has. She is getting annoyed being in the hospital and when she does not feel good she does not want to be at home wondering if she will go to the hospital she would rather just go. So when she starts feeling better she looks forward to coming home. I decided to come home tonight as it was midnight and I just need to sleep in my bed. I have two knees that need replacing and some joint pain throughout my body and I can do 2 nights in a row but the third night if she is well I come home.The chairs that open are tolerable but the older I get the harder they are to sleep in.  She is 12 and totally has a blast with the nurses when I am not there. Some of the nurse’s and tech’s have cared for her since she was a baby. The interventional radiology department , knows her so well that they sedate her for procedures quite regularly and they are on first name basis’ and she is totally comfortable in their care. She has nurses that just come in the room to get hugs from her , just because. That is the amazing part of this whole journey. It is about the love. The people who come to work to survive their own lives and actually work diligently to save other people’s lives. It is beautiful and amazing and rarely appreciated.

Social Work, worries about paperwork. Make sure you have all of your papers in order. Make sure everything signed. I know they do this to protect the hospital and the patient so I follow formalities. The Doctor’s order tests and work on figuring out the sources of the symptoms. The nurses try their hardest to follow every procedure and always hoping for the best outcome, knowing that sometimes it is going to hurt the patient or maybe scare them. They have to put up with the personalities of the patients, families, doctors , techs,  and other personal , it is so much to do with each patient having constant needs and they get it done, and they show compassion almost all the time. My daughter knows the housekeeping staff, the dietary staff the lady who sits in the front desk information,She is buddies with child-life, she knows the people in admissions and the transporter people and they all do their jobs with the intention of making that hospital a place people can feel confident to trust them when they are already vulnerable.

I am truly thankful for these people I just spoke about but I am also thankful for the experience. I have learned about compassion and empathy and how they interact and are not the same. I have learned strength and vulnerability and I have learned just how far a little information can comfort a racing mind.

I will continue to share bits and pieces of my daughter’s journeys and of other things I decide to write about and I hope somehow sharing her ups and downs along this thing called life, that somehow it will make it a little better to go through. Perhaps her strength will be someone else’s rope when they are falling down and need help back up.