Whoa, so it really was a trip! Leaving the house with small children is usually an undertaking, but, imagine with me. Ryan, his car seat, diaper bag, pulse oximiter attached to him, oxygen tank and tubing, feeding bag with pump inside and tubing and suction. We NEEDED the stroller as it takes 2 of us, fully loaded, just to get in and out of the car. Our stroller was stuffed to the gills, but, we were MOBILE! (note, we have been here and there with Ryan, but not until lately did we begin bringing suction and the pulse oximiter with us everywhere we go. That was the first time).
We decided to bring the pulse ox because Ryan had been pretty fussy in his car seat lately and we were wondering if he was dropping his oxygen saturation because that position does make it harder for him to breathe. Thankfully he didn't drop his O2 sat in the car, just in the waiting room at the radiology department!! After 2 attempts to suction him and failure to "snap him out of it" while holding him, when he started giving me that glazed "i don't know what's going on look", I sent Chris for help! We needed a room and a place to lay him down and the waiting room (potentially full of germs) was not the place. We got him to his side and cranked up his oxygen. Luckily, he came back up fairly quickly and was his normal self soon after. His parents more weary than he was probably.
So, after that, we went to see the pulmonologist for the first time. He listened, helped discuss our options for Ryan and showed us the chest x-ray that was just taken prior to our appointment. Ryan has "atelectasis" (whitening of the x-ray in the lung) in his left lung only. It took up pretty much the entire left side. The Dr. said that "atelectasis" could just be from swollen airways that weren't being filled with air, or it could be the start of a case of pneumonia. So, Ryan started antibiotics just in case there is any bacteria present. With SMA, it is very important to begin antibiotic therapy early because even a small illness can become very serious due to Ryan's inability to clear secretions, cough and breathe deeply into his lungs. We were also given some tips to help drain the fluid from the base of his lungs by laying him with his bottom higher than his head a few times a day and doing some chest physiotherapy (patting his back) to help loosen the secretions that are trapped in there. Ryan could also be aspirating his formula in his tummy, or his saliva. That is one of the huge problems with him not being able to swallow and cough.
Suction has become a key intervention with us several times per day, nose and throat. Ryan doesn't seem too bothered by the suction and usually calms pretty quickly afterwards as he probably feels better. His sister, on the other hand, HATES the machine, even though it has never been used on her... She treats it with the same animosity as the vacuum. They must have the same frequency but to her, they are absolute torture to listen to. Not many things can send her into a full blown blubbering, sobbing, moaning, clinging fit as these. But, it must be done as must vacuuming. We hope that somehow, Charlotte will forgive us for using these appliances... none of which have EVER harmed her directly.
So, the appointment with the pulmonoligst himself wasn't really productive, wasn't unproductive. I think physicians caring for a child with SMA type 1 have a difficult time with not being able to "cure" them. Advising patients on what to do when there are no clear choices is a difficult thing to do, especially when the end outcome is what it is. We did receive some reassurance from the visit as Ryan's capillary blood gas results came back normal. So, he is functioning well enough still on just a nasal cannula for oxygen to keep his gases within normal limits. GOOD BOY! He was also 14# 2 oz! We were so excited about his weight gain, only to have the Dr. later tell us "you can't let him get too fat because it is harder for him to breathe". Makes sense, but that has been like the ONE good thing we've had going (physically). So, no cramming him with calories necessary and we will eventually probably need to cut his feeds back. Children with SMA can also have huge problems with fluid overload, another concern of feeding him too much. So, we are entering a realm yet uncharted by the Hawn Family. Less can be more... who would have thought?
A light note to end this entry. I know that things have been pretty heavy on this front, me expressing a lot of what is inside. By no means is it for the purpose of making my audience pour their salty tears onto their computers and jam up their keyboards. Truly, truly, I write what is inside, unfiltered, me. It is what is way down deep and one way that I process what has happened in the past few days to move on to the next. Each day is truly different. Some stand out for GREAT reasons, holding Ryan in my arms as he happily sucks on his pacifier or not so fun reasons like we experienced the day we went to the pulmonologist. I will do my best to share more of the GREAT moments with you. I guess my entries tend to focus on the hard stuff because the joyful, fun stuff is easy to process. It simply feels great. I hope that in our pictures, you see those times for yourself. Although this has been undoubtedly the hardest time of our lives, we are still smiling every day, still thankful for every day.