How the time it works against me! I had a couple of posts building in my brain that I was going to finally sit down and spit out after we knocked out the garage sale. Most of my lovely readers know that all of the goods were shoved hastily back in the garage when we were told that the nagging wheeze meant we were headed for our first hospitalization. In the past five days I have lost so much detail I would have liked to share. Not having a reliable laptop to bring along, or the spare item to actually log on the hospital computer service, many of the reactions, glimpses, and feelings have been swept away by the un-ebbing current of inpatient care. I will have to settle, at the moment, for giving you the highlight reel, and promising to document better in the future.
The things I need you to know:
Jackson was not admitted under emergent conditions. There was no drama, no lights and sirens, gurneys, or shouting doctors in scrubs. There was a little paperwork at registration, a visit with our team, and some settling into our amazing room. It's like the Ritz of hospitals, yo.
We are not emotionally devastated wrecks, just barely holding it together or putting on a brave face. We were prepared for this, inpatient maintenance is an inevitable part of even the healthiest CF life, and while we hope it will be shockingly infrequent, we don't look at it as a terrible thing. As much as I am endlessly flattered by the praise of being a brave, strong momma, I'm just a Momma. I have no doubt that you (because all my readers are decent human beings!) would do the same in my shoes. Which brings me to...
There is nothing like walking the halls of a Children's Hospital to make one count themselves among the lucky. The hardest part of this experience is being in a building where the suffering of the innocent is concentrated and displayed without cover. I have to make a conscious effort not to be swallowed by it sometimes. At the same time, the compassion we see here by every volunteer and staff member is without compare. The mission statement at Cook Children's Hospital is more than words, it is [resent iin the actions of every single person I have encountered.
I will have to share pictures with you at a later date. I have been taking some at the hospital, but we will have to be home and settled before I upload and take a look at them.
Em's dad and his girlfriend have been very helpful and supportive with her during all of this. She has handled it all in stride, as my girl is like to do, but when she gets home at night she worries-as my girl is also like to do. We have decided that for the next few days it will be healthier and happier for her to stay with them, where there is routine and normalcy. They have also been good enough to offer to bring her for visits, which does my heart good, as Jackson's face simply lights up when he sees her. (And his legs kick madly and his arms flail with glee)
As for the man of the hour, he hasn't really decided how long he's going to stay yet. His symptoms will fluctuate and his weight does the same, leading our doctors to not necessarily be overly concerned, but neither pleased with his progress. They- and we, honestly expected a fairly hearty turnaround after a few days if IV meds, and he just hasn't been able to kick it like that. If he continues to stall or backpedal in the next day or so, we'll be taking more aggressive steps to look into the root of the illness. It's all very "if, then". And I will keep you updated one way or the other.
One thing I am for sure, is a bit over tired. Even the stealth nurses can't always ensure a solid night's sleep in the joint, so we are a ll a bit on the sleepy side. Having said that, I'm signing off for now with a heart full of love and grace. When things are ideal and less than, the support we have been shown is nothing short of bracing. Perhaps the reason I've not been overwhelmed and upset by things is the indescribable amount of love and support that literally feel by our family, friends, and strangers alike.