Yesterday, Wednesday, Alicia had a small procedure done, she had a PICC line inserted (a long thin line, I call it a tube, put in through a vain in the arm and ending just above the heart). The purpose of this line is to be able to give her more medications through an IV. She currently has 12 IV’s hooked up to her in different places. I think this procedure caused so much stress on her that unfortunately she had 2 extremely long seizures one lasting for 3 minutes and the other for 5. The doctors immediately did an ultrasound on her head to see if there is any bleeding and thank God that there was no bleeding They will repeat the ultrasound again today to make sure that everything is OK. These were unexplained seizures, nothing before the procedure indicated that she might have one.
Hopefully they will never come again. This week she also started to tolerate her feeds better, but that too had to be stopped yesterday as she developed a bleeding in her stomach. I hope the bleeding goes away quickly, she needs her food and nutrition as she needs to grow. She hasn’t gained any weight or grown anything for the past two months.
Boy!!! It wasn’t a good day at all yesterday. Why?
We aren’t having an easy time with Emily either. Our constant visits to the hospital are taking a toll on her as well. Unfortunately we can’t take her to the hospital as she is too young and during our visits she has to stay at different people’s houses. She misses us a lot and even though she doesn’t show it during the day her stress and frustration comes out at night. She doesn’t sleep well, she goes to the bathroom often at night and constantly scratches her hands as she says they are itching her. As never before, she also asks us if we love her. We have decided to spend more time with her and coordinate our hospital visits to very early mornings or late evenings. Emily is extremely smart though she surprises us with some of the comments she makes and even though she doesn’t like us leaving her alone with others, she seems to understand that we need to visit Alicia often. Many times when we leave for the hospital she finds any toy that’s lying around the house and tells us that we must take this for Alicia as she is all alone.
I will end my post on that note today and will update you tomorrow as to the results of Alicia’s second head ultrasound and CT Scan
Mirek and Kasia
