Platelet transfusion day
On Tuesday we stopped in for some more platelets, he was at 23k. The plan was to draw his blood for the lab before we started platelets. I told the nurses that there should be an order for 10ml of blood to be drawn from Hayden into a green vile, for St. Mary’s lab. In notime Dr. Delgado and the nursing staff had everything rolling.
As I told you a few days ago, it was arranged for me to initially draw the 10ml of blood from Hayden. After I talked to Rick and Grandma Sue (RN) we decided that this is too big of a job and too risky for me to be doing. Come to find out, 10ml is the MAX that can be drawn from a 23 lb child. So caution definately was needed.
My mom was staying with us for Monday and Tuesday so she was able to come with us for this appointment. She got to see what Hayden goes through each week for his platelets and got to spend more time with us instead of going back to GB.
I left my mom with Hayden at 3 to drive over to St. Mary’s so I could drop off his blood vile and get my lab work done. It took more time to find the right part of the hospital than it did to give my blood and have a consultation with Melisa, the genetics counselor. She was wonderful in explaining more about how these test are going to happen in Washington. Dr. Hans Olof (I love saying his name) is widely known as the WAS doctor. He has researched and knows tons about this autoimmune disease. He and his staff have agreed to run tests on Hayden and my blood to determine a number of things;
1. They will be able to determine if I am a carrier (which I am pretty confident I am, with my ITP issue)
2. They will look at his genetic makeup and hopefully determine how he is producing protein even though ALL the letters in the coding are deleted-that is what the protein reads. Protein makes up the immune system.
3. Cell lines will be created with our blood-I think this is where they actually grow the lines to determine how they work in the body.
4. This testing will also benefit Hayden post transplant to determine how to address his issues.
5. It will help answer questions that other WAS patients have as well.
We will have a time frame for a turn around time soon.
Hayden still has a cold that both Abby and he got on Friday. Abby shows no sign of the cold now, but Hayden is still snotty and coughing. Hopefully it remains mild and doesn’t turn into an infection. He is really struggling with a chapped mouth. We gob on the vaseline, but with him drueling so much from teething it doesn’t help. He wakes up from naps and in the morning with a blood covered mouth and bloody sheets. Each day I change his sheets and wash his “cuddly” which is a small, very soft blankle with a head of a lamb on it. He will hold on to the small little ears as he falls asleep or put it over his eyes as he grunts himself to sleep. My mom has bought a second one, so we can alternate them while the blood stained one is getting washed. The new one is a dog, but he doesn’t seem to notice the difference yet. As long as there are ears for him to hold, who cares!
He also has been getting blocked up. Without being graphic, his Hemotologist prescribed an oral med to help him have a bowel. I have cut back on the grains he has been eating, but I can’t bring myself to give him pruns just yet. We will try massage and the med first!
Once one thing is resolved with him, we go into another issue! We have no time to get into trouble at the Blatter house!