Post BMT +38
Day 101
Post BMT +38
Prayer works! Lilly is out of the PICU. This is not at all the direction things were headed in yesterday. Her infection is responding to the meds, her super scary neuro symptoms are better. PTL! Thank you for praying for her. She likely will have her port removed tomorrow due to the blood clot. No surgery is small on these immunology kids. Keep the prayers coming!
Last night was a little dramatic in our world. Tate ended up eating some toast around 9 PM. She also drank about 1/4 cup of strawberry milk. This was a huge win! By 2 am, her body was desperate to get rid of it in all ways as fast as possible. Quite a bit of time was spent on the bathroom floor surrounded by all said drama. So thankful for extra caring nurse hands last night. Just mine were not enough. Tpn was started and Tate still needed Mag replacement. The TPN runs 20 hours/day. Tate is low in things like calcium and potassium, phosphorus and even the magnesium. All that comes in the tpn and is adjusted for what she needs. I’m hopeful that she’ll feel a little less depleted and the better balance will help with this fluid retention. She’s up another 2.5 lbs from this morning. You can see it in her feet and face.
Esophageal Ulcers continued to give Tate trouble today and whole body pain seemed heightened. She did little more than sleep but did try a few bites of food again tonight. Praying her body cooperates! The cold packs on her head help to give her headache relief.
Blessed Holy Week as we remember the suffering endured on our behalf.