Update.

It has been almost two weeks since my last post, mostly because I have been enjoying almost as
long of a time of having no appointments or hospital trips with Elizabeth. While Liz has had times of nausea and a few fevers, she has had more good days than bad the last few weeks, and I have been soaking in the normalcy of the days. It may not seem normal to others to have to care for a PICC line, worry about germs, manage all of the many medications, or hold a retching child...but it is our new normal and I am seriously grateful for how well Liz is doing right now.
I decided to just take a break from blogging.

Too cool for school. Literally. ; )

I last wrote about how Kate had labs done because of bruising. The results showed that I was correct- her platelet count is low and out of normal range. Ugh. She very well could have the same platelet issue as Liz, in that the body develops antibodies against its own platelets. Kind of a bummer if that is the case, but definitely a "doable" issue if you're going to have to live with one.; she'll just be a bruised girl as she throw her body around as she digs after all of those volleyballs. All of her other counts were great though, and there is NO reason to believe she has any of the same bone marrow issues as Liz. Yay! Because my realm of freaking out has changed over all of this with Elizabeth, I asked the doctor if we could wait until the end of July to test Kate's platelets again (it is something that will need to be monitored, as platelets are what allows our blood to clot). The doctor agreed that as long as she isn't having bleeding, we should just wait the month. I cannot tell you how relieved I am that Kate's other counts are normal!

This coming week is a BIG week in terms of Liz. Tomorrow she will have lots of blood drawn for the many tests we have been waiting for. These tests had to be done two months after stopping IVIG, and tomorrow is the two month mark. The labs will let us know how or if the immunoglobulin infusions changed her blood in the positive way the doctors intended.
You may remember, too, that I went along with the thinking of Dr. Lee and Liz has not had her blood drawn in a few weeks..... we just thought it would be best to give her body a break because she is pretty anemic so taking blood doesn't help the issue at all, and we also were aware that nothing was being done in the immediate as far as her Prealbumin (nutritional lab marker) and other counts, so we wondered why we were allowing GI to keep drawing those labs. I am seriously anxious to hear if her Prealbumin has gone up....that will play a huge role in the decision regarding the feeding tube.
So, lab work tomorrow and then Friday is our meeting with her gastroenterologist to decide on the G-Tube and also to set a date (hopefully) to take out the PICC line. I need this darn line taken out. Each day feels like a victory of not having infection or clotting in the line and while I am grateful for the ways it has helped her, I need this risky iv line out!!
I will admit that I am nervous about all of the labs and also the discussion regarding placement of the G-tube.
Next week, we will meet with doctors at Children's Hospital Los Angeles. We've seen both doctors before, and we've decided to head back. First we'll meet with an Immunologist there who intends on doing some specific white cell testing, and also will use the lab results from tomorrow's lab tests to try to help. Then, we'll meet with a Hem/Onc there and he'll go over labs and also all of the bone marrow biopsy slides I will tote along with me to the appointment.
Frankly, the tests from this week and the visits next week are what will help determine our next step. A few doctors have bluntly suggested we go to Boston, Cincinnati or Texas to get another set of opinions, but I decided to wait for that move until these tests were done.
My stomach is in knots and it is a ll a little stressful.....

It's a good thing that this week will also be filled with happy things! The girls will be promoted from 5th grade this week, and the last days of school will be full of fun- movie day, kickball tournament, graduation and their 5th grade picnic. The plan is for Liz to attend most of the festivities. Good stuff!

****While writing this post, Walt tried to do Elizabeth's daily line care. Her PICC line is occluded, meaning we cannot get blood return and we can't flush saline through the line. This is most likely due to a blood clot. After calling her home health nurse and speaking to my aunt (who is a brilliant nurse), both feel that we can wait until tomorrow morning to have a nurse look at the line, rather than head to the Emergency Room. Ugh. I knew this would happen.