We spent most of the day at the hospital today having blood tests, a bone marrow poke and an NG tube(feeding tube) put in. As you can imagine, this was not something Emily was very excited for! Mike, the child life specialist, came in with a new doll and helped "Dr. Heaps" put an NG tube into her nose. It was fun for her to have things explained to her as she performed the procedure on her doll.
We are hoping that she will be eating on her own again soon, but for now, Matt and I are excited that she will actually be getting some much needed nutrition into her body! I was excited until they started telling me everything that I would have to do to hook her up at night.(I feel tired already!) I know it will just take time to get used to and everything will be just fine.
When the nurse came in after seeing that Emily lost weight this week she tried to convince me that all I need to do is FORCE her to eat. "It will only take a few times and she will learn that she can't win." I looked at her in awe and said, "I will not force Emily to eat. I am doing my best but I am not going to force her to eat and then watch her throw it up!" I am realizing this is just one of those times when I have to listen to to spirit telling me what to do. I know that Emily is not just being difficult and trying to prove a point when she doesn't eat. She doesn't have an appetite, she has no desire to eat and when she does eat, she gets full very fast. She is not trying to prove a point that she is the boss. I can understand this could be the case with some kids; and that is why the nurse is saying what she says, but she's MY daughter and that just doesn't sit right with me. (Sorry, I had to do a little venting!)
Emily doesn't like how it feels in her throat and in her nose; who would? Mike assured her that she would get used to it and forget it's even there. This made her feel better and more at ease. It's so great that she trusts him, I LOVE child life!
We were concentrating so much on the NG tube that when we put Emily in the car to go home and she said "Ouch it hurts!" we weren't sure why. We laughed at ourselves remembering that she had also had bone marrow taken out of her hip; of course she would be hurting!
The test results will be back next week; we will then be meeting with the doctors to discuss what the plan will be. We are concerned because her counts have gone down even more from last week. Her ANC is now at 400 and her white blood count is also really low. After the nurse took out Emily's bone marrow she said it didn't look good. This could mean that it just needs more time. The doctors are excited to get the test results and try to figure out what is going on. We are still wondering if it is the Epstein Bar virus that is just taking it's toll on her.
Today is the official 100 day mark. Ya Hoo?? Just a reminder that it is just the time when Emily has more tests done to see if there is any "activity" going on. For us, it really doesn't mean much but they like to count it down anyway. We thought it was a huge milestone the way they talked but with SCID kids it takes a LOT longer then 100 days to make a real difference. regardless it is amazing that it has been 100 days!
9 comments:
We will continue to keep little Emily in our prayers. We love you guys.
Jill I wish I could take this trail from you, as a mom I know how hard it is. But you can do anything you have certainly proved that. The Lord loves you so much, and I know Em is a miracle, we just have to remember that she is being watched over, and trust and have faith, which you and Mat have! You are always in our prayers . Love you
Em- Dolce LOVES her toy you gave her. Its her very favorite . You are the best!
Jill,
I am so sorry! We love you all so much and I feel like I am going through it with you! Those counts just have to come up! Emily has the strongest spirit! I know your family is being watched over and we are blessed having you in our lives! You are an amazing mother and advocate for Emily. I know she is where she is at because of your inspiration you get from listening to the spirit! What a comfort that is in all of our lives! Sis I love you so much and am so proud of you! I'm asking a special prayer tonight that you will be given extra stength and energy to get through this time! This to shall pass!
You guys are the best. We feel like we are going thru it with you. Our prayers are with you constantly. We love you so much!
Love you, love you! I feel so close to you when I read your writing. I just wish I was there! I agree with Monica, "this to shall pass".
I remember having one of those feeding tubes, no fun! I wish I could eat for her. Then she would gain some serious weight!
Numbers are meaningless! Especially things like 100th day (of anything), everyone just wishes they could measure stuff like this. Every kid in her own time. Maybe her bone marrow is just kind of stubborn, it is related to Jill after all!
Jilly, read Jer's again....and put my name to it. (in fact, i ditto all the comments above.) I also completely agree with Jer's comment about the 100 day mark. Meaningless!! Don't let that get you down. I'm so glad you have the stubborn streak in you! J/K....it's called strength and you have a lot of it even if you don't feel like it sometimes as you are watching your little girl get a feeding tube. I have tears as I think of you, oh, how I wish I could take some of your load, if even for a day to give you some relief. Your family is so loved, hold on to each other...."this to will pass!"
Love you all. You have so much love surrounding you! Lean on all the prayers that are being offered up! If you need a date night, you know who to call! LOVE YOU!
I'm so sorry you're still having to be so brave. Watching Emily get a feeding tube had to be so hard. I know Heavenly Father is watching over Emily.
I can just imagine the whole Heaps family doing the victory shout when these trials subside. It is going to be a glorious day.
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