Sickly

I answered a call this morning from a transplant coordinator and the first question asked was, "How's Ashley?" My answer, the only truthful one I could give was this, "Sickly". Don't even know if thats a real word or not, but in our home its what we use to describe not feeling well.

I don't have any answers about what is wrong with Ashley Kate. There aren't any. The best guess is once again ...a virus... but what one or which kind...no one knows and probably won't ever. There are so few identifiable virus' and so far she's tested negative for all of those. So she could be battling anything.

The good news? Her labs look pretty good. I mean considering her presentation and symptoms you would expect her blood work to return looking really ugly, but it doesn't. I think that is God. Simply God. Or maybe not so simply if your not a believer, but since I am I know He is in control of her life and He was once again protecting her. Ashley's symptoms changed in intensity Wednesday night as she tried to sleep. Up until that point we knew she wasn't feeling well and we were doing our best to manage her with the help of our transplant team. I was in contact with her dietician out of Nebraska daily, actually multiple times each day, and we were making adjustments every 3 hours to her feedings and replacement schedule. Unfortunately, it became impossible to keep up with her fluid losses with enteral replacements and the need for IV support was obvious by Thursday morning. I called Nebraska, shared my concern, called her pediatrician, again shared my concern and the rest of yesterday is history. You all know where we ended up. So knowing the amounts of fluids Ashley was losing and at what rate up until her IV was placed there is no other explanation for how stable her lab work is and her kidneys are at this time other than acknowledging that God was protecting her.

Her presentation? entirely different. She is very, very uncomfortable. Sleeping very little. Extremely nauseated resulting in lots of vomiting of bile. Her stool output into her ileostomy is off the chart. Losing in 12 hours what she is allotted for a 24 hour period. Until these two things resolve themselves she will remain where she is. She is finally fever free. She maintained a low grade fever, only becoming high enough for blood cultures one time(which we had drawn Wednesday morning) since Sunday. Today she has had no fever. She is extremely fussy. Very, very shaky and jittery. Dave and I are suspecting perhaps a high Prograf level. Its the only explanation we can come up with for her discomfort so far. We are requesting a lab to check the level in the morning.

The blessings? Obviously her stable blood work. We are also blessed to be here in Longview just minutes from our home and the older children. I can't even describe how much easier admissions are when there are two of us taking turns in this hospital room. Just having the ability to step out, get some fresh air, catch a few hours of sleep, and see the faces of Blake and Allie make all the difference. Such a blessing. I went home last night and slept for the first time Since Monday. I didn't move an inch all night long. I was able to spend this morning cleaning up, finishing up the laundry, and preparing things so that packing for the kids would be easy for the trip next week. We are scheduled to leave on Monday. Who "we" involves remains up in the air and will until the last minute I am sure. The only for sure "we" at this point is Blake since he will be playing in the tournament.

So at this time Ash has drifted off to sleep, Dave has gone in to the office to do some work, I'm about to do some office work here on the computer and Blake and Allie are in search of a pink flamingo for their baby sister. Perhaps in the form of a balloon? Its all I could come up with. Its her new thing. Don't ask me why, but she loves them and points them out to me daily in her books, She also loves for us to say "flamingo". It cracks her up.

I'd post a picture of my sweet girl except that she's wearing nothing but a diaper. Dressing her even in p.j.'s is pointless with all this vomiting. Its just ugly. Thank you so very much for your prayers and your encouragements. You'll never know how much it has carried me over the years and how it continues to do so. Take care. Trish