Bone Marrow Biopsy and Lumbar Puncture

Ryman had her bone marrow biopsy and the lumbar puncture yesterday.
Her spinal fluid was clear and had no red or white blood cells so that is a good sign. We will not know about bone marrow for a couple days but might get a prelim report before then. They said they would be surprised of it wasn’t in her bone marrow so we expect to see it there. Otherwise we start looking for another reason she isn’t making new red blood cells. The MRI did have a few spots but not from the infection. They think its possibly from pre CPS1 stuff or fat that develops around nerves until age 2 but they do not have scans here to compare too. I think we did one at Georgetown so they are sending it to Dr. Yazigi to compare if so. But no infection there so for this treatment that is a really good thing. She got an NG tube yesterday to start extra food (Boost) just to catch up on nutrition. She and Jeremy hate the tube but I think its a good thing for now. Her albumin is low causing some fluid in her abdomen and lack of consistent nutrition (NPO for the past there days on and off) has added to her mobility issues so her stomach is so swollen. She has been really lethargic for days now and had me really worried. She seemed a little more responsive last night but is back to being weak and sleepy this morning. I pray that it’s just exhaustion from fighting the infection. Still no fevers so that is a good sign. We are probably looking at 4 weeks of IV antibiotic and 1 year of oral antibiotic therapeutic dose and then probably a couple years of a low dose antibiotic. Insane! But if that’s what will get her better than bring it on.
I am thankful today that Ryman is still here with me and that I get to be by her side each day. Sometimes its hard to be thankful when she is so sick but I know that it is a blessing to get each day with her regardless of the circumstances.
My devotional said “Thankfulness is not some sort of magic formula; it is the language of Love, which enables you to communicate intimately with Me. A thankful mind-set does not entail a denial of reality with its plethora of problems. Instead, it rejoices in Me, your Savior, in the midst of trials and tribulations. I am your refuge and strength, an ever-present and well-proved help in trouble.”
He definitely is a well-proved help in trouble. Teaching me daily to lean and trust.

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3 thoughts on “Bone Marrow Biopsy and Lumbar Puncture

  1. It does seem so difficult with the unknown, the complications, the watching, and waiting for answers, but this is not a surprise to God, and He can sustain us through it all.
    He is with us in our time of need, and He will be with us after the storms of life. There must be great things ahead!
    Love and prayers, and Praise that this time will soon be seen in the natural.
    It’s all settled in the spiritual realm. Love you !!!!!!!!!

  2. A feeding tube is never the most fun thing but at least with the NG it’s temporary and can definitely help her get nutrition if she’s have problems PO or with motility. Praying for you and your sweet girl. I wanted to come with Mindy to see y’all at Vandy (I’m there lot for work) but now I’m sick so I best stay away. šŸ™‚

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