We spent Wednesday morning at UNM. Brooke saw her Immunologist, Dr. Clayton, who is the sweetest, kindest man. I just love him and his caring bedside manner. It's refreshing. He had definitely done some research on Brooke's issues before our appointment and had his game plan laid out. He took a lot of blood, most of which had to be sent out of state within x number of hours in order to remain viable. He has some thoughts as to what "might" be causing the high IgM level but he wants the blood work to tell the tale. He didn't know what to think of her spots so he called in an Infectious Disease doctor to evaluate Brooke. Enter - Dr. Martha Muller. WHAT A GODSEND! She seems to be the person we've all be praying for! She's kind, gentle and interested in everything going on. Guess what? She is totally smitten with Neutropenia! Take it on!!! Most doctors run the other direction, but she was like a breath of fresh air. She has some thoughts on various things she saw on Brooke and/or things she briefly read in her chart prior to walking in the room and she wants to do some more reading up on Brooke before she lays out her game plan. She explained things in a way we've never had them explained before and it made sense. I feel so relieved with the visit and I feel we are finally on the right path. Thank you God for putting Dr. Muller in our lives and for Dr. Clayton not giving up on finding the answers we need.
Dr. Clayton will be referring us either to Denver or Houston to see a team of doctors who will evaluate Brooke. While I hate the thought of having to go so far and possibly having to put Brooke through more tests, the possibilities excite me. A second opinion (overall) may be what we need. UNM is pretty much the only place that has ever treated Brooke, with the exception to UMC in Lubbock when she was first born. Please pray for direction for Dr. Clayton as he determines which location will best suit Brooke and her needs.
Can someone please tell me where the switch is? You know...the one that turns off the bad stuff? Enough already!! The home health nurse came yesterday to take Brooke's monthly INR reading. A month ago it was 2.2, which is where they like to see it, but is considerably higher than where Brooke has been in the past. We all felt the INR should've been done sooner than a month later, but we lost that battle. So the results yesterday show her at 4.5. Very thin blood and extremely dangerous. This is so thin that a cut could be tragic. So, no Coumadin last night or tonight and back on the normal dose Saturday and Sunday and a recheck Monday. Brooke is liking it in the sense that we're cramming spinach down her which is a no-no most days. When your blood is thick, you avoid foods with vitamin K because it's a clotting agent and you don't want clotting. With an INR of 4.5 - YOU WANT CLOTTING! So vitamin K is our best friend temporarily. Sad thing is, Brooke doesn't understand any of it. Why mom won't let her eat this or that and now all of a sudden she can have as much of anything she wants. Very confusing to a little girl.
Brooke has felt bad since last Friday. Fever that comes and goes has to be monitored very closely. She seems to be past the 101's and 102's, but the 99's are still very frequent. She's been on an antibiotic for over a week for a skin infection, yet it doesn't seem to be kicking whatever "bug" she has. Maybe the fever is another symptom? Please pray for Brooke. For healing. For comfort. For direction from the doctors. For Mike and I as we tend to her needs.
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