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. 
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.
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.
I am so glad Jackson didn't have to go into the hospital! This post really hit home for me as I have had my fair share of 'survivor's guilt,' and don't really know how to deal with it honestly. My emotions are all over the place, and I don't always know how to express them. I often get so overjoyed and grateful when Lucy is doing well that I don't even want to talk about it publicly knowing that there are so many people suffering in the world (CF or not), but on the other hand I get enraged when I hear of parents speaking badly about there children constantly or complaining about the most mundane things. Knowing what the CF community has gone through decades before our children were even born keeps me grateful for every single moment I have with my daughter, and hopeful for the future. I really do think that Jackson and Lucy will grow OLD!
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