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.)

Wednesday, October 13, 2010


Tomorrow at 8am, Jackson will have a big breakfast, his last good meal for a little while. Sometime after noon, he will get some local anesthesia and some sedatives to make him sleepy and relaxed. Then his doctors will send a small, flexible scope down his airways and into his lungs to have a look. They will irrigate with some saline and take a sample of mucus that lies deep within his lungs. This procedure will allow them to test if he has an underlying virus or infection that has not made its way into his throat and nasal cultures.

When I first learned of this possibility, it was scary. It seemed too invasive for his little body. But much like other aspects of CF care, I adjusted quickly in order to keep my boy as healthy as possible. This will give us some answers we don't yet have, and rule out underlying problems that could ultimately cause permanent scarring and lung damage.

Right now I'm not nervous. He had a great day, and really seems to have turned the corner on this illness. He's still a little clingy and moody, but he is smiling and playing again too, and his appetite is returning to its former ravenous state. Since being admitted he has learned to wave, click his tongue, and make kissy sounds. I have to keep him in the best condition possible. I have to keep those little lungs mint condition, because the answer is coming. The day is coming where CF will be manageable, not fatal. The day is coming.

To my CF family, I love you so much. Even though we are different, as individuals are like to be. Even though we've never met, I love every one of you as if we were blood. Thank you for giving us a place to be normal, and for the unflinching kind of support you can't find outside. Yes, I repeat myself, but- I love you so much.

Everyone else... I love you too. I still say I'm only human, and not worthy of your admiration, but I love you intensely for the unwavering support.

I will report again tomorrow, now that I've discovered how to blog from my phone. All typos must be ignored and forgotten until sych time as I return to a computer.

Tuesday, October 12, 2010

Hospital Updates

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.

Friday, October 1, 2010

Head, Heart, Lungs

This post has been brewing for a while now. First, I didn't really have the words to put it in....then I was late on my Internet payment ;) Excuse my emoticons. Head

As you know, Jackson was granted an eleventh hour pardon from a hospital stay last weekend when his o2 sats (oxygen levels in his blood) suddenly dipped to a borderline dangerous number. He recovered, and came home to finish kicking the virus that was the culprit of our little adventure. He didn't get well as quickly as anticipated, and has lost close to a pound due to his lack of appetite. Since he's also only six months old, we don't really know what to expect of his particular case of CF. He hasn't had any real run ins with illness yet, so we don't know what his tendencies are. That leaves for a LOT of questioning whether I'm overreacting or being appropriately vigilant. After many phone calls between his nurse and I this week, we went in today to follow up on all the action. Although his spirits are good and we've managed to curb the weight loss (with diligence and coconut milk!) , he still has a rattle and wheeze you can hear from twenty paces, which was concerning. The nurse also noted that his retractions were visible through his shirt. The gave him a breathing treatment in office and reassessed his lung sounds. News was good, as the resident mucus was thin and movable, and since all his vitals were good, we would get to go home again today. We decided with his team to try another round of steroids to oust the funk and are to report back after the weekend on his progress.

There have been some stressful and worrisome moments over the last couple weeks. I haven't gotten a lot of sleep, either, since I have 'mommy hearing' and awake every time he so much as sighs. It was unnerving to see his skin suck in around his ribs when he struggled to breathe. He waffled back and forth between restoration and decline, and I questioned just about every decision I made regarding his care. I relived his diagnosis some. I cried when no one was around. I wondered if our impossible run of prime health was coming to an end and CF was going to really make its presence known. Combined with financial stress and missing the outside world, I was a little beside myself. I longed for the sense of grateful wonder I felt a few months ago, when everything was a gift and nothing was taken for granted.

Ask and ye shall receive, right? Jackson didn't hit the wall, health-wise. I'm confident he will recover from this, and that it was a relatively mild illness. He has access to top medical care. We are unbelievably lucky that his pediatrician at the medicaid clinic is vigilant in staying on top of his progress, and communicates with our clinic doctors before and after every visit. (that's not the norm, even with private insurance peds, from what I understand.)
In addition to all of those gifts, there's the absolute glut of information coming out about CF. Even since my journey into this world only six months ago, I've noticed a markedly accelerated outpouring of data, research, and discoveries. From the mapping of the Irish Genome, to crosstalk between ion channels, to the amazing potential of the Vertex drugs in clinical trials, I'm left feeling like salvation is a breath away. My heart is in the rafters with the hope that my baby and all of his CF compatriots will grow OLD together. Their lives won't be marked with pain and struggle just to draw breath. The fact that this is a real, palpable possibility and not a hope we merely cling to out of desperation is too big for words and it swallows me whole.

And when I think about all of the brilliant hope shining ahead and the blessings of the present, I can't help but think of the past. Of the people who have suffered. The ones celebrating transplant anniversaries, or desperately waiting on a new set of lungs. The ones whose lives have been studded with endless pills and machines and therapies and surgeries. Flesh and bone warriors to whom middle age has previously not been an option. The ones who only a generation ago rarely even made it to school age. The ones I follow and talk to now daily, and those I never got the chance to know.

And then I feel guilty for feeling bad for our situation. I try not to. I try to allow myself room to process my emotions and recognize my feelings in healthy ways, but it's not always possible. It's very similar to survivors guilt, what I feel. How is it that we should be so fortunate while others still suffer so deeply? I recognize it as the wild card, the uncontrollable variant, but it's still hard, and on occasion, the guilt wins out, if only for a moment.

For now we soldier on, indescribably grateful for all we have, try to help those who's struggle is harder than our own, and retain compassion for those who have yet to understand adversity.