Yesterday was a rough day. Madison was admitted in the hospital and Ryan had to come relieve me because I was sick with a migraine. Thank you to my little brother who dropped Ryan off in STL and then drove me home!! Madison is having a colonscopy and endoscopy this morning. Praying for answers, healing, and return home!
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Madison has been sick all week. Last Sunday it all started with belly pain and a fever that reached 101.9 for Madison any temperature above 100.4 is dangerous. I took her to the emergency Sunday evening. The fever broke and an iv antibiotic was given (this is routine for oncology patients). Thankfully we were discharged. The rest of the week was the same. Fevers on and off, skin gvhd rash getting worse, and diarrhea. I've been in contact with Madison's team multiple times a day. We returned to clinic Thursday and today and again thankful they are allowing me to care for her at home. Madison's viral panels have all been negative along with blood cultures. As most of you know hospitals are full of germs and with the 4th floor full of oncology kids with viruses I prefer to avoid if possible.
Madison has been off cyclosporine (anti-rejection med) for two weeks. We have weaned her off of this med very slowly, but we fear the gvhd of the gut is back. Obviously, we don't want to jump the gun so if her symptoms don't get better she will have a colposcopy next week. Madison was weeks from having her broviac line out and was doing extremely well. At this point she is on iv fluids 24 hours, continuous feeds through g-button, and several meds that have been added back in. We plan to return to STL early morning Monday unless she is worse and will return sooner. On a positive note her new immune system is working. It is fighting fevers (in the past once she had a fever there was no way to get it down without meds and now it is doing it on its own). Her counts have stayed about the same!!! Thank you God! Our lives are day by day so please continue to pray for each of us as we handle this bump in the road. We pray you all are healthy and enjoying the beginning of summer! We love you all! Stage 1: Clean out the barn.
For 10 years we have made the barn our dumping ground. Disorganized chaos! Items we haven't wanted to deal with, felt guilty about throwing away, things we thought we would use.... The list of reasons and justifications goes on and on. For two days we unloaded the barn! A keep pile, donate pile, dumpster pile, and recycle pile. Item after item went to one of the above piles. Except for the trellis! The trellis went in my front yard near the road... why I tried to figure out what to do with it. The trellis could go into any of the piles above... The question is, "Is it worth my time?" Unloading our lives and evaluating every commitment, relationship, and facet is draining yet rewarding. As I stood in my empty barn, I prayed for God to guide me in what needs to fill the space. The barn contents were now in my yard. Standing in the barn I now had to decide what I would put back in and what I wouldn't! We all allow our lives/calendars to become full of stuff. If you were to make piles like I did when cleaning out the barn. What would be the first thing that takes up your time you would throw in the dumpster? Remember in order for God to work he needs space/time in your life. Tomorrow I will be addressing the trellises in our lives.. Madison hasn't been herself all week. She has battled fevers off and on, stomach cramping, and diaherea. Today was filled with viral swabs, labs, and another dose of rocephin. To no surprise admitting her was the plan, but with no real answers they allowed us to go home on the understanding we would be back first thing in the morning.
Madison has been off cyclosporine (anti-rejection med) for two weeks. She has experienced mild gvhd of the skin, but this week could be a gvhd flare of the gut. In that case, it would mean several steps backwards. Still no answers, but like all things will come. In the meantime, Harrison has his first T-ball game tonight! Yes, I will be the cheering parent! Harrison has waited for t-ball since last summer! |
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