Thursday, October 21, 2010

Home Again, Home Again


Well, suffice it to say I'm no professional blogger. There's such a mass of lag time between my posts I probably lose half of my readership each time. But at the moment, Em is slack jawed and spread out upside down on her bed and Jacks is spooned up to his sock monkey, Mike is tending to a broken down ambulance and I'm pouring what the bottle says is an award winning glass of Moscato, batting down the hatches and catching up the best I can. I'll try to cover the important stuff without boring you to tears.

The bronchoscopy went well. Although we discussed at length the risks of the procedure, we decided to go ahead and see if there was an underlying infection causing J's symptoms. He had been in the hospital 5 days, and although the wheeze was better, he was still running an elevated blood pressure and low o2 sats. There was still a lot of 'junk' in his lungs, and if there was an infection present that the throat and nasal cultures hadn't detected due to geography, he would end up right back in the hospital. There is also the risk of long term damage and scarring to his lungs from undetected infection. In the end, we decided with his doctor that we would go ahead with the bronch. He took the sedation incredibly well, didn't look freaky or pass out, just became very relaxed and gave me a slow smile when I kissed him as we left the procedure room. The waiting room made me so uncomfortable. A woman in there was sobbing for whatever procedure her child was undergoing and I was more upset for her pain than nervous about Jackson.

The day Jackson was diagnosed we walked through the halls of the Hospital carrying him in his seat. My face was mottled and swollen and my eyes looked like I had been on the losing end of a prize fight. I saw a flicker of recognition in the faces of other parents who looked at me and wondered in that moment, when I would be the one to whom it was old hat, feeling the memory of past trauma as I glanced across the weeping newcomers. That moment came more than once during our stay.

This woman, whose husband sat stoic but red faced and held her, whose mother came and took her turn bracing her sobbing child, this woman who was in fear for the life and well being of her baby...this woman was intensely upsetting to me. I just wanted her to stop. Pardon my language, but I'm absolute shit at processing my own emotions, and it's near impossible to deny the danger of sorrow when you're watching another mother grieve the pain of her child from only feet away. There were several moments like this during our ten days. Very sick children, weeping mothers, visible reminders of some of the worst life has to offer. They always upset me more than the fact that we were there. I spend so much of my waking life trying to accept J's disease rather than grieve or be angry that a hospital admission seems more like a necessary chore than a pitfall of heartache. But seeing it happen to someone else is excruciating. I am also reminded that while our path is not the one of least resistance, I could be reasonable sure I was leaving that building with my baby in my arms. I'm haunted by the question- which of those mothers will not be as lucky?

Ultimately the bronch turned up no infection. Around day 8, Jacks stopped waffling between puniness and recovery and really started to seem himself again. His appetite stabilized (without the help of steroids), his weight began to climb more steadily, and his trademark grin returned to the delight of his many enamored nurses. A couple more days to ensure he was indeed on the path to wellness and we were allowed to bring him back home.

When we got home it was the strangest feeling, as if those ten days had passed in a dream state, just time lost forever. I had both of my children back under my roof again, I could let go of the guilt that felt like I was having to choose to be with one or the other of them. I'm now basking in the glow of the mundane, again newly appreciative of the things we all usually take for granted. And I should be scrambling to catch up on all the things that went untouched for ten days, but most of them will keep.

This hospital stay was also kind of a wake up call. In spite of my best efforts I wasn't completely able to stave off the idea that Jacks' prior robust health, 'easy' weight gain, and lack of serious infections meant somehow he had a 'lighter' case of CF. His mutation (homozygous Delta F508) is known to GENERALLY be one of the more pervasive, and CF is progressive. We were so lucky to have newborn screening intervene before he failed to thrive. All of these factors put him ahead of the curve and made it almost possible to believe he wouldn't have it so hard. The truth is, we don't know how 'severe' his case is, and only time will have that answer. But I am reminded that this is without a doubt Cystic Fibrosis, and we will be locking horns with the ugly beast until a cure is found.

There is more... more detail I'd like to impart. The relentless schedule of breathing treatments, PT, antibiotics, steroids, and regular meds. Insane tips, tricks, and antics in an effort to get this baby to eat. Vital sign checks, weigh ins, blood draws, and 5 separate IV's. Nurses, respiratory therapists, housekeepers, social workers, child life specialists, doctors, phlebotomists, care partners, and volunteers streaming through our doors at any and all hours of day and night. Carefully planned symphonies and impromptu surgeon serenades down in the atrium. A bona fide celebration and congratulations echoing from every corner as we made our grand escape. Hours of quiet rocking with tiny pink fingers stroking my cheek. Hours upon hours upon hours.....just being, just waiting. Waiting for the drugs to work, waiting for the cultures to grow, waiting for a visitor to break the conundrum, waiting to see if our world still existed outside Cook's candy castle. We were more than slightly pleased to discover it did.

In those ten days, we lived in a microcosm of emotions. The worst of the worlds fear and pain live without pretense within those walls. But Hope lives there too, and it shows itself in the strangest of places. In the pink glitter on a little girl's chemo stripped head. In the peals of laughter emanating from the play therapy room. In the brief smile and outstretched arms of a little boy coming out of sedation, there is unlikely joy. The moments you have mean infinitely more than anything you don't. Which is perhaps why I'm such an unreliable blogger. My priority is living each of those moments, and I sometimes forget to document them along the way.

(I did photo-document much of our stay, but haven't uploaded or edited any pics yet. I'll roll out a photo-only post this weekend. Pinky promise.)


  1. I feel like my comments are ending up all kind of being a re-wording of the same sentiments. BUT- that post made me cry, so I want to send all of those sentiments your way again. Love and hugs and hope and cheering and so much more.

  2. what a precious picture. Sorry you had to go through the hospitalization. those are never fun. praying your baby feels better soon.

  3. So pleased to hear that there were no infections/bugs cultured. That's fantastic news! Also glad he is now back to his old self.

    Hospital stays are the most tiring experience ever. A lot is down to emotion overtime the rest I guess is due to lack of sleep in general.

    I've learnt not to ever let my guard down with CF after the last couple of days. You'd think after 3 and a half years i'd know not to do it but I did, and then got the biggest slap in the face ever.

    Anyway, he's getting more handsome the more he grows!

    Really pleased to hear the good news and that your family has reunited.