Thank you to my awesome hubby for filling in last night. It was nice to get some good rest, knowing that today was supposed to be an easy day for Keegan. After tanking him up on blood last night, we took a "lab holiday" today in an attempt to keep the blood in him where it belongs, and the doctors otherwise left him alone to give him a day of "rest" before his heart catheterization tomorrow.
Keegan has an entirely different interpretation of "rest", however...
After being cooped up in his room with no energy and feeling like you-know-what for a week, Keegan took out all that pent up energy and boost to his blood counts to run around like a mad man outside for about 30 minutes this afternoon. Follow that with his first bath in a week, and by 7:15pm, you have the end result of...
Sooo, maybe we still have a little farther to go before we're feeling "better". ;)
We met with our general surgeon today, who was able to work Keegan onto the OR schedule at 10:15am on Monday morning for a new central line (port vs. broviac line still yet to be determined). He is on the cath lab schedule as "second case" tomorrow, which means we really don't know what time he will go down yet. We are guess-timating about noon. The heart catheterization will cover his entire annual work-up with heart biopsy to look for rejection, check for plaque build-up along the graft, and pressure check. Additionally, they will look at the venous side of his heart to get a clear picture of any anomaly that allowed the last port to go into the artery. The weekend should be relatively calm in between these two procedures.
We are unsure if we will be able to start the steroid pulse on Tuesday/Wednesday. Steroids inhibit your body's ability to heal wounds, so surgery is obviously concerned about starting a higher dose too close to a procedure. Our cardiology team isn't that concerned about it though, and again, our goal is to get Keegan started, stable, and home on the plan before Audrey's party. We don't want to do anything to put Keegan in danger, but we are ready to be home for a bit. At least as best as we can plan for at this time...barring anything that may come up during the pulse.
We are still of the opinion that the pulse is the best way to treat the cell death process occurring in Keegan's GI tract. All of the infectious avenues have been crossed, dotted, then checked again as negative. SOO, we are coming back to the thought that this may truly be a graft-vs-host type reaction afterall. There are some case reports of GVH occurring in the intestinal tract but not the blood stream. Not sure those repeat tests that will be sent out to Philadelphia or Boston will change our course of action or not at this point.
A few more specific prayer requests for tonight:
- Safety and clarity during the cath tomorrow.
- If anything needs to be fixed based on what they see that it can be fixed easily in the cath lab.
- No rejection or coronary artery disease; no areas of infarction (we know the bad port was throwing clots; since Keegan can't feel a heart attack, we are hoping not to find any areas that have been adversely affected by clots from that line).
- That Keegan's bone marrow is happy with the latest blood transfusion and starts to make a comeback without much more intervention.
I really struggle to express how much we appreciate your prayers for Keegan. Just look at the pictures above...it is not in vain. The Lord provides according to His holy plan and will. Sometimes that's just harder to accept and live with than others.
But then, my dad sends me pictures like these...
Don't you just wanna squish her? Seriously. Cutest...baby girl...ever.
And I know the Lord has blessed our family abundantly. No matter how deep the valley gets. Thank you again for walking through it with us.