Friday night I couldn't sleep. I believe I slept a total of 3 hours broken in to half hour bursts. Saturday we had quite a bit to do to get ready for the week and I was exhausted.
Saturday night was a rough night as well. We just can't get it out of our head that Haven's health is declining right before our eyes. Haven had a major sleep walking spell around 2am - which hasn't happened in a long time. Kris was on duty and took care of her. So in the morning I rearranged her room and took a lot out so there is nothing that can fall on her if she is sleep walking.
Today I destroyed the house. This is how I clean. I throw everything out of a room and totally destroy the room I threw it all in and then I clean. Once everything is in the catch-all room I load up bags of trash or save bags. Haven's room has been completely remade.
We have been scrubing everything down and making sure all is sanitized in preparation for the chemo on Friday. Miss Haven has been very tired and sleeping all day. She did make time for some workbooks. She loves to do workbooks - and wants to be in school so bad.
We are getting ready to head over to Grandma B-honey's. She is headed to Korea tomorrow for a couple of months. So Haven wants to say goodbye and give her a big hug.
We hope everyone had a great weekend! :)
Misty,
ReplyDeleteIt is good that you have doctors at John Hopkins who are concerned for Haven. A doctor who listens and believes the parents about the symptoms of their ROHHAD child is very important. The first pediatrician for Leigh Ann would not listen or believe me. I quit him after Leigh Ann returned home in Oct. 1992 from the children's hospital in KY. In Nov. 1992 I changed to an Evansville, IN pediatricain who was located 8 miles from our home. This pediatrician was open-minded and he would listen and believe me.
The Evansville, IN pediatricain is the one who diagnosed Leigh Ann with LO-CHS/HD now called ROHHAD in Nov. 1993. He then sent her by air life-flight back to the children's hospital in IN. This children's hospital was 200 miles from our home. Leigh Ann had been a patient in this hospital several times since Nov. 1992. Also we had made several trips for clinic visits at this children's hospital. But they had failed to diagnose LO-CHS/HD. The Evansville doctor had a very difficult time trying to convince the doctors at the children's hospital that Leigh Ann had LO-CHS/HD. In Feb. 1994 the doctors wanted to tranfer Leign Ann to a rehab hospital that used their doctors. But due to the problems we had experienced at this hospital, I had Leigh Ann transferred to a neurological rehab hospital in Michigan. There were good doctors at the rehab in Michigan who had a better understanding about LO-CHS/HD.
Because of the problems with the children's hospital in IN, we started taking Leigh Ann to Vanderbilt in Nashville, TN. The local pediatrician in Evansville, IN asked the help of the Vanderbilt endocrinologist to explain LO-CHS/HD and to assist the other Vanderbilt doctors with understanding LO-CHS/HD.
The Vanderbilt endocrinologist had started Leigh Ann on growth hormone shots just prior to her death. She was treating Leigh Ann for her SIADH problem as well as other endocrine problems related to what is now known as ROHHAD.
All ROHHAD patients need caring doctors. An over-confident doctor who thinks ROHHAD symptoms is only a problem of too many calories can do more damage than good for the child. There is still more knowledge that needs to be learned about ROHHAD and its treatment. However, it seems to me that at least Haven's doctors are trying and care about her.
Love & Prayers,
Vicki