Our "colocho" ("curly head" in Spanish)
Lately, the majority of my time and energy has revolved around little Zach and keeping him healthy. Between April and December, Zach was hospitalized three times for respiratory troubles. We're in the middle of an especially brutal winter season, with flu and RSV bouts abounding, plenty of good old Utah inversions (translate: bad air that's especially hard on little ones in Zach's situation), all of which has meant a lot of time at home. We've had to improvise and come up with some silly stuff to keep both boys happy, but I can't complain one bit, because, since we've been in hermit mode and we've found the right medicines and treatments, Zach hasn't had one serious bout of breathing troubles. This week he even survived a cold without ending up in the hospital, which for us is monumental!
I sometimes find it difficult to help people who haven't had children with serious respiratory problems understand how much it changes our daily life. The littlest cold or stuffy nose can send us to the ER, because Zach's body responds in such a reactive way. So we have to really minimize his exposure to germs and illness. As a result, we can't be in large group settings, which for us has meant limited involvement in family gatherings, alternating which parent attends church so we can keep Zach home, avoiding taking Zach out on errands as much as possible, definitely no exposure to play places or kids museums, day care or nursery at Church or Relief Society meetings ... you get the idea. It would be one thing if it was just me and Zach. But I feel especially guilty about having to hang out at home so much because of Eliot. They're both such busy boys with tons of pent-up energy, and playing inside just doesn't cut it all the time! This winter is definitely putting to test my ability to come up with creative, energy-expending playtime ideas with my kiddos. We're so used to being out and about, going to the library, visiting the pet store, running errands, playing at the mall play place or making special outings to children's museums, etc. ... no wonder we're all a little stir crazy!
Other ways Zach's struggles have changed our life is integrating breathing treatments into our schedule. He has to have two treatments of Budesonide (Pulmicort) every day. The treatments take about 15 minutes each, and he HAS to wear the mask you see in the picture above the ENTIRE time. He hates it. We hate it. Depending on the day, it can be a total battle. But it's what we do. The cost of the prescription is jaw-dropping, and I'm dreading paying full price for it when our 90-day supply is up. On top of that, Z takes an oral medication (Singulair), the cost of which is almost as mind-boggling as his breathing treatments, as another means of keeping his airways open and blocking germs from getting straight into his lungs. Additionally, we keep Albuterol on hand as a rescue inhaler should he start wheezing or struggling to breathe. There are strict instructions for keeping his Nebulizer sterilized and clean ... it can all be a bit much to keep on top of! In order to keep Zach free of infection, we all have to be extra cautious about not bringing germs home. When anyone walks through the door, they have to wash hands, and depending on where they've been, change their clothes. Instead of Grant getting to scoop Zach up for snuggles or daddy rough-housing at the end of the day, he has to rush upstairs to change his clothes. I'm doing quite a bit more laundry and turning into a deranged, hand sanitizer-toting germaphobe mommy!
I think what has been hardest on me is the constant level of stress and worry. Every runny nose, cough, and sneeze from Zach puts me in panic mode. After three hospital stays, all of which came as the result of what started out as a regular kids' cold but then escalated to labored breathing in a matter of only a few hours, I automatically kick into freak out mode when I see the slightest symptoms of illness. I check on him constantly, pester Grant when I'm away about how Zach's breathing, and keep the baby monitor cranked up at night so I can hear every squeak and movement that comes from Zach's room. I have been kind of a mess! I realized a few weeks ago that I've started holding my breath a lot and have a hard time letting my shoulders and body relax. I feel like a friend of mine, who also has a child with severe respiratory problems, said it best when she said her son's troubles made her feel like her "brain broke." I feel like my brain is broken! I'm one of those psychotic mommies freaking out constantly about hand washing and not touching ANYthing. I shudder when I hear someone cough next to me or hear someone at church excuse their voice when they're teaching a lesson, swearing that of course they're not contagious. If they only knew that exposing their mild illness to families like mine is a source of intense stress, I wonder if they'd stay home. I feel so helpless being at the mercy of other people's consideration sometimes. I know plenty of people with "hardy" kids, who rarely get sick, or if they do, they bounce back like it's nothing. I remember going to church as a child with other kids with constantly icky snotty noses. It makes me crazy and even angry sometimes! I wish it didn't. I wish it didn't bother me. But I'm hyper-sensitive to it because of what I've been through. Another friend commented on my Facebook page, "Other people's kids' cold is my child's 3-day hospital stay." It's so true! It seems so reasonable to me that we can prevent spreading illness by keeping sick kids (and adults) home, but I guess until you've had a simple cold cause you major anxiety, most people shrug it off and aren't willing to be inconvenienced.
I have recognized lately the need to be more positive about all this (so maybe this post was my way of purging my system of all my pent-up frustrations?!), so I will end on this note. I LOVE this kid. I love our Zach. I love my awesome Pediatrician. I'm so grateful for medicine and solutions. I'm thankful that his condition is not worse than it is, even if his respiratory troubles do cause us a fair amount of anxiety and, for now at least, have altered our daily life in somewhat significant ways. But most of the time, he is a healthy, happy kid! I'm sorry if I've seemed overbearing or lacking in compassion in this post. But this is my daily worry and struggle. It is hard, isolating, and lonely at time to go through these struggles. I'm grateful to have come across people who can truly empathize with me, because it's an exhausting constant source of stress. I'm thankful for the people who have reached out with compassion to us and for those who have withheld judgment that we're not at church as much as we'd like to be and have had to modify our lives somewhat in terms of callings, participation in ward and family events, etc. This is our life for now, and we're just doing the best we can to survive and avoid the hospital!
I should also say this -- in some ways I have seen this trial in our life as a blessing in disguise. Up until all of the hospital stays and subsequent testing and treatments, Zach was such an independent baby. He is completely the opposite of how Eliot was as a baby. Eliot insisted on being rocked to sleep and would let me hold him on my lap and read and sing to him. Not Zach. Since Zach was an infant, he hasn't wanted to be rocked to sleep or read to. He would squirm and protest until you just put him in his bed at night and let him sleep. Which, in some ways is really nice. But I'll admit, I missed being able to at least sing my baby one little lullaby or have him stay still in my arms for just one quick story. Well, now he will. All his breathing treatments and his nervousness around doctors has created "forced bonding time." When he's not putting up a big fuss over his breathing treatments, he will let me rock with him and read story after story. I'm finally able to teach him "Itsy Bitsy Spider" and "Wheels on the Bus" because he'll actually sit for it! So in that regard, I will regard all of the medical drama of the past year as a means of bonding at a much deeper level with Zach. That has meant a lot to to me, and for that I should be grateful.
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