Another day with no fever!!   Today was kind of a grumpy day for us, but we did get some good info. Steroids are doing their part as our inflammatory markers were down 50% which is great. Some other numbers still high and inflammation still high, but we're making some progress on that front. Of course not where we need to be yet to allow for diagnoses, but hey, we'll take baby steps. Also some slight improvement on the lung..still has fluid but it's appearing to also start to look a tad better in some areas. Still a long way to go on all fronts, but we'll take any progress in any area we can get.[...]

"Faith isn't a feeling. It's a choice to trust God even when the road ahead seems uncertain."

Today was a very good day all things considered. Day 2 of steroids, anti-inflammatories, and nutrition via PICC line. We have gone over 48 hours without a fever! Yahoo!  It's been weeks since we've gone without a fever. [...]

We still have several tests and second opinions pending with the various divisions, but they are really leaning toward thinking Cole has the IMT (inflammatory myofibroblastic tumor). Yes, the extremely rare tumor(s) even seen in adults let alone children.[...]

Today has been a pretty good day for Cole. We are officially back on the HEMOC floor and settled in our new room. The PICC line has worked well so far and has eliminated some of the pain from the constant pokes and IV meds he was getting. He is not hooked up to IV fluid so we are trying to drink and eat as much as we can to avoid that. Need some tummy movement as he doesn't want to eat while his tummy hurts. He also isn't hooked up to any monitors today so he can move freely around the room which we need lots of movement to help his muscles and especially lungs.[...]

We got a PICC line put in this evening to allow easier access for the numerous blood draws Cole will continue to need so he won't have to continued to be poked all the time as well as administer various medications he'll need. He has been poked more times than I care to count so it's good that this will eliminate some of that.  All he keeps saying is he doesn't want to keep feeling pain. Breaks our hearts to hear. [...]

Trying to briefly summarize yesterday & today. It's so much and overwhelming.

Two more teams on board (pulmonary & rheumatology again) making it 6 groups working on Cole's case.[...]

Thank you to everyone for the thoughts and prayers for Cole! We are so blessed to have such an amazing support system, and we are grateful for each one of you.[...]

The surgeon came by after speaking with the pathologist. Cole has necrotizing pneumonia/infection, but they cannot tell if something caused it, or it caused something else.[...]

Surgery came by and said it looks good after removing the chest tube from their standpoint so that just needs to heal. No air leaking from the lung which is great 👍🏼[...]

Doesn't seem like we're going home too soon yet. We'll see what tomorrow brings.

Surgery removed his chest tube, but the infectious disease people don't feel comfortable having him leave yet with the high fevers and not knowing if his current antibiotic is even helping anything or what kind of infection they may even be treating. They want to do more bloodwork tomorrow to check inflammation and see if any preliminary pathology results come back so far. Some tests may take weeks as well.[...]