Not a whole lot of changes going on here. They have upped her Viagra and it seems to be helping her pulmonary hypertension a little bit. This mornings X-ray looks better both fluid wise and in that her heart has decreased a little. Her blood pressures are improving as well. Piper is still slowly being weaned from the ventilator settings and tomorrow they will be weaning the nitric oxide... This is the last step to go before taking the literal tube out of her throat and breathing alone. Her fevers are spacing out some; instead of every 8-10 hours apart, she last had one at 3:00 this afternoon, almost 15 hrs apart. They took her catheter out this afternoon after getting a urine sample to test for a Uti. She continues to be itchy but consolable and spends a lot of time playing with small toys in her lap or watching movies. Remember that she is still being given sedation medications and is still very groggy...even with this all going on, she has a pretty constant stream of nurses and doctors peeking in at her in amazement as she is reclining and playing. Piper is requesting water and we have been given the "okay" to put small amounts on her sponges used for oral care and to let her suck on them every so often. Doesn't thrill her but it's a little something. Piper still very much wants me to hold her and I don't know what's worse...when she cries when I tell her I can't or when she just turns away in resignation.
Neither should be an option.
It hurts me to see her like this and yet she is doing so much better than we thought she ever would last week.
So that's me whining.
The main issues will continue to be the weaning off of the ventilator and her heart condition. There is also the ridiculous balance of input and output and fluid gain that changes daily. Piper needs to have some counts come in and they have been very slow...please pray that when we do begin to see counts that they will be leukemia free.
This entire process is arduous and we are all wearily pressing on. We miss each other and nobody is actually getting good sleep...I constantly tell myself that this is just but a season but frankly, it's turning into a beautiful spring outside and we are missing it all.
As you can see I am whining and this is not allowable in our position. Piper is doing well and we are together (ish).
And God is still holding us upright.