We headed to the Children's Hospital this morning. I was nervous all night last night and this morning. I know it was just a consultation...but you never know!! We got there at 8am and they sent Zeke and I across the hall for admitting. When we came back, the office was packed. I've got to tell you...it was a little hard sitting in a room full of children who had all lost their hair due to treatments. It really broke my heart. All of the kids and parents knew each other...that is their reality. You never really think of things like that until you are right there in the middle of it experiencing it for yourself.
They called us back and first put Zeke on the scale. He's a whopping 39.6 pounds. That seems so tiny to me. Every time we have been to the hospital they have been so wonderful. Before they took us to the play room to wait on the doctor, they gave Zeke a big bag full of toys to keep. He was so excited! We went into the play room and he had a great time playing on the car track. When Dr. Kirkpatrick was ready for us they came and took us to a room. I think ALL doctors offices should do this!! That way Zeke and the other children weren't bored out of their minds in the room waiting on the doctor. They had an area to play and watch cartoons. Dr. Kirkpatrick talked to me about how Zeke had been doing since we have been home from the hospital, etc. Then he started telling me about wanting to do the bone marrow, which I already knew he wanted to do. I had a big list of questions and he was so wonderful. He sat down and answered every single one of them for me...this took a long time. I had lots of questions and he was very thorough in his answers, which I appreciated!! Here are some of the questions I asked and the answers I received:
Q: Will you be doing a bone marrow biopsy, aspiration, or both?
A: Both, since he will already be asleep he wants to go on ahead and get everything that he can to test.
Q: What conditions are you testing for?
A: Essential Thrombocythemia Themia and Chronic Myelogenous Leukemia...I need to Google what those mean...but I'm afraid, Google is a scary thing!!!
Q: Who will be performing the bone marrow biopsy/aspiration?
A: Dr.K or one of his colleagues
...I did not like this answer and expressed my concern for a doctor I had not met performing it...so he said he would do it.
Q: What type of sedation will be used?
A: Propofol
Q: Where will it be taken from?
A: Back hip bone...you know where most people have 2 little dimple type things above their butt...there.
Q: What complications may arise during/after the procedure?
A: Possible to leave a hole where it is taken. Infection could occur, but is not common
Q: What can I expect to happen during the procedure?
A: I will be with him leading up to the procedure. Once he has been given a sedation and falls asleep, then I will step out. Dr. K will clean the skin and put a drape over him. The procedure will take 1-3 minutes. Zeke will be hooked up to oxygen, blood pressure cuff, and a heart monitor.
Q: How long will he be in pain during/after the procedure? What will be done to reduce the pain?
A: He might be in pain for one day but it's not common to be in pain longer when it is the first time the bone marrow is done. He will be given Tylenol or Motrin to reduce any pain. When he is running around/playing he may feel pain from it at times but not enough to where he stops what he is doing and cries about it.
Q: Will this test diagnose what is going on?
A: No, but it will tell us what is not going on.
Q: How long until we get results? Who will explain the results to me?
A: Today's blood work will be over a week. They are going to run genetics and other labs to test. Those take time. The bone marrow will be 24-48 hours. The bone chip he removes has to sit out for 24 hours for the calcium to be removed from the bone before they test. I will be called back into the office to discuss results.
Q: How soon can he return to normal activities after the procedure? What is the down time? Will he have any limitations?
A: Most kids feel fine right after. There are no limitations.
Q: How should I care for the wound?
A: Soap and water for the first 24 hours. Then he can emerge in a bath after that. Neosporin.
I asked some more questions, but hopefully that will give you all an idea of what is going to take place. I am so glad he sat there with me as long as he did to answer all of my questions. Most of the time you feel rushed in and rushed out. So we still don't know what is going on inside his little body, but I do feel better.
He told me after the bone marrow Zeke will be placed on an antibiotic called Anagrelide. It is a medication to help lower the platelet levels. He did mention that once he is on that he will have to come in for another bone marrow...but I didn't write down the reason and I've already forgotten. Sheesh, stress makes you very forgetful!!
After my consultation with Dr.K we went back to the play room to wait on the lab lady to come. While we were waiting I called my mom and gave her all the details. By the time I got off the phone lab had arrived. We went back into room 2 for lab. The last time he had lab my mom and I and two nurses had to hold him down. I informed them of this so they were aware. He sat on my lap. I crossed my leg over his legs and held his right arm down. The lady said she was going to give his left arm a big hug. She got a great vein and stuck it with her needle. He did scream...really loud...but we didn't have the kicking and everything else after. He was so good that he got a Phineas and Ferb band-aid! I guess that is big around there. When he had settled down, the nurse took him into a toy closet to pick out another toy and she gave him some Cars stickers. That made everything all better!!
We scheduled our next visit, bone marrow, for Monday, January 30th. So until then...we continue to wait!
I was so proud of how brave he was. When we left, I took him to school and told him we'd go get a special treat after school. When I picked him up, he had decided he wanted an ice cream cone from McDonalds. So we had a special little date.
Zeke playing in the play room waiting on Dr. K
I don't think he realizes he is eating it from the bottom up!
Ice cream face!
He quite possibly could be the only kid that likes to dump all of his ice cream out and just eat the cone.
Wow. This is all so scary. I am continually praying for Zeke. All of your questions were very well thought out. I can't imagine being in your shoes. You are so strong!! Good job Momma! Keep us updated.
ReplyDeleteLove you!
The staff at children's is AMAZING! I was incredibly impressed during our time there. It sounds like you had the perfect list of questions and are doing a fantastic job of being a part of your child's care. You aren't helpless - remember that you are a part of the team and staying informed and involved is the best thing you can do! Waiting is the hardest. I'm keeping your little man in my thoughts and sending lots of strong momma vibes your way.
ReplyDelete-Elle Fowler