I hope everyone had a wonderful Easter! He is risen! He is risen indeed!
Renny has recently developed some beginnings of a pressure sore on her foot. Because she does not have a lot of feeling in their legs and feet, she is unable to know when something is rubbing or pinching or whatnot, and so since she does not (cannot) adjust to relieve that problem, her skin can then essentially lose oxygen and die. It seems she has just the beginnings of a pressure sore on the top of her left foot – it looks like a small red patch of skin, almost like a bright birth mark. After some research and some calling, we happen to have some stuff at home (I save everything that is sent home with us for her – It comes in handy!) that is like a “second skin layer” called Derma..something..and that should protect the sore, hopefully until it heals. If sores are not protected and the skin breaks open, it can be very, very bad and very difficult to heal.
We are also keeping her out of her brace for a few days to help with this healing. I am assuming it is because of her brace that she is developing this pressure sore, because it is made up of a hard plastic material that is most likely rubbing against her wrong. (The back of her heels are also very red, and so I am watching those too for any further developments). Our PT suggested us taking her brace in to get it adjusted so it does not pinch/rub on all of these spots. We also need to find some type of padding for further protection. Hopefully we get this squared away soon so we can start standing her up again in her cast, so we can get her legs strong, so we can eventually work on walking! It has been a long road….
Renny also has had a bout of diarrhea since last Wednesday, so almost a week now. We didn’t think anything of it at first, but then started to worry a little bit after it didn’t go away after 3 days. You know how it is, looking things up on the Internet…not always a good thing. We had the fear that it had something to do with impaction – basically poop being stuck in her intestines – since she has a weak bowel system and has constipation issues every now and then. But, after talking to a nurse advisor on Saturday, then Renny’s nurse on Monday, and then a fellow parent of a child with SB, we are thinking it is just a bug she has. She does not act sick at all; she’s as happy as she usually is. However, though it was appearing to get better (less “blowouts”), today she had a lot of it, so maybe we will call tomorrow, since our nurse said to call if it got worse.
Some other news: Yesterday, we traveled 2 hours to the hospital in which she had her back and shunt surgeries the day after birth, to have a checkup with her neurosurgeon. She had an MRI (quick brain scan) to check the fluid in her brain. While she was lying down for the MRI, they had to tie her arms down so she wouldn’t be grabbing at things. Within a minute she had freed her arms and was grabbing away. The medical staff came back, mentioning how impressed they were with that, and proceeded to do a triple-tie-down of her arms. Within a minute or two, she had managed again to free herself and start grabbing away. Bewildered and amazed, a nurse finally came and held her arms down while they did the scan. Renny was not happy. But, it was a good laugh in the meantime and she was further referred to as “Houdini.” The result of the scan, though – everything looks good; her shunt is working well. yah!
So, we are thankful for the good MRI, but watching the diarrhea and the pressure sores. Pray that both will heal up quickly and without complications. I will try to post some pictures again, perhaps of the pressure sore (Not the diarrhea). Thanks!!!!