The previous 12 months have not been kind to the Pierce/Kaczka clan. I think it would have been a hard enough year had we not had children, but some of the things that have taken place have been more trying with kids. Not only are you processing as an adult, you're also trying to walk your kids through experiences that they've never really had before. Things started last October, when Elisa sweet grandmother started going downhill. At the end of the month, she passed away and we had to start teaching Lukas about death and what it meant. If you've been reading the blog, you already know that Lukas tends to express his worry and anxiety through...ahem...projectile means. On the day of the funeral, he got sick and we thought he would miss it.
During the mourning process, Elisa tried to help Lukas conceptualize the idea that Great Nana was still watching over him. Every night, Elisa would send Lukas to bed with the statement of "make sure you let the angels work on you!". Lukas converted that to "every night, the Angels hammer me." That creates an interesting image. After Great Nana passed away, Elisa let Lukas know that the Angels now had an extra helper. Great Nana and the Angels would be hammering on Lukas to help him grow, keep him healthy, and watch out for him. In July of this year, my Grandmother went downhill and died as well. Talk about the 1-2 punch in the face. Yet, amidst the grief, Lukas was already showing us that he was about 5 years ahead of himself. He informed us that when the Angels worked on him, they were not only joined by Great Nana, but now Great Grandma. Together, the Angels and his two Great Grandmothers would help him grow, keep him healthy, and watch out for him.
This evening, Elisa, Lukas, Miles and I were snuggling on the bed. I was just getting ready to take Miles to his room when I heard Elisa ask Lukas to "talk to the Angels, Great Nana, and Great Grandma and see if they can't work a little (aka hammer) on Sam. I thought it was really cute, and a good way to help Lukas "do his part". When it was time for Lukas to go to bed, I asked him if he had asked the Angels to work on Sam. He scoffed. He had asked them while he was snuggling with Mom, of course. It seemed preposterous that I was even asking the question. Out of curiosity, I asked him what they said back. Lukas plainly stated "they said they would, but they'd have to divide up the work. So someone's going to work on Lukas. Someone's going to work on Miles. And someone will work on Sam." He crawled into his bed and added "it's too big of a job to do all at once."
I'm hopeful that those Angels keep their hammers out over the next few days. If this afternoon is any indication, I'd say the quiet tinkling of hammers you hear is actually a group of Angels, trying to get Sam home. Because we had a mini breakthrough today. After 3 failed attempts yesterday to wean Sam past 0.6 lpm, we appear to be making some excellent strides. When we went in for our 2:00pm feeding, Sam was at 0.4 lpm and was barely tolerating it. His oxygen was hanging around 89-91. (They want him above 90 at the least). At the 5:00pm feeding, it was slightly improved, but he only tapped out at 94, and was hanging around 90-92. Fast forward to the 8:00pm feeding, and it really feels like Sam is starting to wrap his focus around 0.4 lpm. He was consistently 92-96 in oxygen levels, and while Elisa was feeding him, he even hit 100 4 to 5 times.
This is a big step for a couple of reasons. First, we had kind of stalled for a day and a half. It's nice to start the progression down again. Second, Dr. Peterson indicated this morning that once he got to 0.5 lpm or less, they were now in the range to start observing and potentially think about discharging him. We haven't officially been told, but in my mind, I can see the observation clock perhaps starting tomorrow. And third, it is the most clear example of Sam's willingness to let his body regulate to weaning. We have been told that no more adjustments will happen this evening (that's fine with me...he's earned a night off!), but we now want to start eyeing the possibility of getting down to 0.3, 0.2, or even off of the oxygen altogether.
One of the most prevailing feelings I have struggled with throughout Sam's story is that I feel so helpless. I am a fixer - I need to have my hands dirty in making things better. Tonight, I watched in awe as Elisa used her own feelings of helplessness and asked for love, support, and some hammering Angels from our most tenderhearted supporter. Something tells me that Lukas, Miles, Great Nana, Great Grandma, and Sam are going to make it happen.
Hammer away.
Brad
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