Kourtney was not admitted yesterday, despite her severe anemia issues. She is now starting to retain fluid because her hemoglobin is so low. We will be seeing a hematologist sooner than later next week. I am asking for a lot prayer when we go to that meeting, because I feel that this will be my opportunity to ask the right person about the bone marrow transplant. I am taking in letters with me from people I have worked with that can basically vouch for me, that I am capable of making good decisions not only for Kourtney but also professionally as a nurse. I just don't want them to think I am burnt out mom with a notion. I also feel that we have made some very tough decisions in the past and that the one thing I have always have been is realistic in Kourtney's care. I want to be able to share with the Dr. that Shaelyn's amnio DNA showed that she would have EB also and now this healthy skinned daughter is a bone marrow match to Kourtney. This will be a very very huge step for me. I am just praying that this Doctor's heart will be ready to hear what I have to say, and not just listen, but hear that I feel that this needs to be investigated for Kourtney. I think clinically right now Kourtney warrants some drastic measures, and I believe that will be very clear to the hematologist just when he sees her. I don't know what day it will be next week, but we need to be covered in prayer that day. I am also praying that a central line will be considered for administering the iron. I don't want Kourtney to keep on getting poked and I do believe the IV iron needs to be given at least 3 times a week.
Our meetings went OK. Our dermatology nurse, Joanie. will be my go to person and she will then communicate with the Team (there are approximately 15 members of the team, that is why the confusion.) We also feel we need a local pediatrician in Abbotsford that we can go to, and if need be we will be referred on to Dr. Courtemanche and Dr. Prendiville.
But as far as Kourtney's chronic pain goes . . . there is not much that can be done until her anemia issues are dealt with. There were 8 people in the room with masks, gowns and gloves and Kourtney sitting in the middle. I expressed my concern over this inhumane treatment, especially when there were 2 psychologists present. What does this do to an already depressed child? WE have come up with a plan for family counselling, individual counselling and couple counselling. I wonder where Dr. Phil is when we need him?
It did snow on the way there, but the ground was clear on the way home. Kourtney is still snoring in her room. We are now giving her ativan as she is so restless at night (most likely because she is not getting enough oxygen to her tissues so everything hurts).
We did manage to go shopping!!! We got some pretty cool gifts, it made Kourtney feel a little more like celebrating Christmas.
So. . . If anyone else is interested in writing a letter of reference for us that would be great.
3 comments:
Janelle: Dr. Davis is awesome! I am so glad you've been referred to him! I was going to ask who you were seeing, and I was hoping and praying it would be him. He is very easy going! And very reasonable about the fact I'm a nurse. When I brought up the idea of me administering one of paige's future chemo's at home (it's given 4 days in a row) he said that they can just give me everything I need. I told him the nurses said they're not allowed to do that. He said he's sure we can find a way around that. He's very conservative and calm. He doesn't rush give antibiotics with the oncology kids when they have fevers unless their counts are bad. He's very easy to talk to! These Dr.'s are also used to parents having a lot of say in their kids care. When Paige was diagnosed it was made very clear to me that I was the #1 person to assess what was going on with her. I once didn't follow on of the other Dr.'s recommendations cause I disagreed on her assessment. When I told our primary nurse Alison (Dr. Davis' nurse) she said they love it when we can assess our kids and aren't afraid to know what's best for them and question the Dr.'s assessment. I don't know what Dr. Davis will say about a BMT for Kourtney, but if anyone will be open minded it will be him. I feel I have a good rapport with him. Are you looking for reference letters for him? I would gladly write you one! I truly have hope! I will continue to pray! We are at children's thursday for Paige's chemo, let me know when you're going.
Love the picture!!
your daughters are beautiful! kourtney looks just like you, janelle!
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