This past week was very long. We were in Houston for his 1 year check-up. It was to be uneventful, but instead we had to extend our stay for 3 additional days for more testing. To rewind a bit… since my last post Timothy hasn’t been feeling well. He had lost his appetite and starting gagging which lead to vomiting and fever. We concluded it was just a virus that needed to pass. When we got to Houston, his platelets completely tanked. He had petechiae, bruises around his body and inside of his mouth. His mouth was so raw, it started bleeding. To further investigate and to strengthen his body, Timothy had a bone marrow aspiration and biopsy along with platelet transfusion and 2 days of high dose IVIG to boost his immune system. We are still waiting on the biopsy results. Before we left Houston, his platelet count went up on its own. This is a positive sign that his body is making his own platelets (instead of destroying them which would mean he would have to be on steroids again to suppress the antibodies that are destroying his own platelets). But nothing is certain as of yet. We have another appointment tomorrow, with a platelet specialist. Perhaps then, we will have a better idea of the treatment plan. Please pray for tomorrow's lab draw…that his platelet count is higher than on Friday’s (59) . Normally, his platelet count should be above 150 (thousand). In Houston, it was 5. On Friday, it was 59 (due to the transfusion).
So all of his 1 year stuff has to be postponed… like his immunizations. We have to figure this issue out first.
Thankfully, Timothy is still 100% donor cells :). I was getting a little nervous about this in light of his platelet situation. I didn’t know what was going on with his body. But I was so thankful we were at TCH for this. We really love our doctor there and he, as expected, took such good care of Timothy and us. God’s timing and providence is truly impeccable.
Here are some pictures from Houston after our last visit to the doctor. By this time, Timothy was eating a little. Of course, we took him on a train ride which perked him up a bit…
Over the 2 weeks he wasn’t eating, he lost about 4 lbs… but not on his face :). He was pretty cranky throughout all the procedures and tests, but whenever we were at the BMT clinic, he was very cooperative. I think he remembered the staff and the familiar place. As far as the other tests are concerned (EKG, ECHO, GFR, CXR, bone age, chemistry and other counts), they all look good.
Emotionally, it was up and down for me. Whenever I saw his listless and tired body, my heart ached and all sorts of thoughts raced through my mind. Thankfully, we were together as a family and that alleviated a lot of the mental stress for me.
And here’s our Claire. She was so good throughout the week. She had to wait a LOT. We were at the hospital everyday and most days we were there 6 to 8 hrs, and on one day we were there nearly 12 hrs. She was very patient and understanding… for the most part :).
Needless to say, we are tired. When we got home yesterday, Timothy went to bed at 3 pm and didn’t wake up until this morning. He also had a fever yesterday. And the rest of the family slept early too.
Thank you for your prayers and love. We appreciate all of you!
I've been thinking of you guys. What a roller coaster we all are on! I will pray harder for Timothy this week.ReplyDelete
Oh my goodness! So sorry to hear the latest! Glad you were able to have Dr K make decisions...really wishing we were there right now. Prayers that everything turns around quickly for Timothy! Praise God for 100%! Take care!ReplyDelete
I know... I realized how much we trust Dr. K. And when things happen here, I totally wish we could be there. I have been thinking and praying for C. Hang in there... This winter has been tough for many... Hope C gets better soon.Delete
I'm sorry to hear about your setback. What a blessing to be at TCH when it all happened though. I wonder if it has something to do with his meds. J's platelets were being destroyed last August, and they finally determined it was medication related. When he came off immunosuppressants, his body started to stabilize. I hope they are able to get answers quickly. It's such an emotional roller coaster. I will pray for you and sweet T. Sending love and prayers.ReplyDelete
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