It's been a long time between updates - there has been lots happening, but for the most part I've been nervous to set anything in print about what has been going on. We'll start back about 3 weeks ago. Ryan had his first OT visit (occupational therapy to help with fine motor coordination). After the visit, he was eating and afterwards he threatened to puke (reflux sucks). The therapist 'helped' me by holding onto his oxygen tubing and his feeding tube. I guess in the chaos I turned him around while she still had a hold of the tubes, and without realizing it his feeding tube slipped out from underneath the tapes. He'd been doing ok with oral feeds, so we decided not to rush to the ER to have a new one inserted. I made an appointment for 2 days later to have another one put in, but in the meantime we were going to count how much formula he was taking and if he was meeting his minimum daily requirement (or close to it), we could post pone the reinsertion. Fast forward to today.... still no tube! He's like the little engine that could... every day we stressed over if he was going to meet his goal. He often came up a bit short, but since he was still interested in eating, and the reason for the shortfall was often reflux, not a lack of desire to eat - we persevered. Today - he's meeting or exceeding his fluid goals, but hasn't gained weight in a while, so we're having to go for weekly weight checks. Last 2 weeks he was the same, this Friday we're hoping for a gain.
In other news, he was scheduled to have the g-tube (the surgical feeding tube) put in on April 8th. It was probably one of the hardest decisions we've had to make so far. (obviously the hardest decision we've had to make was whether or not to continue with treatment back in June). The surgery date fell in the strangest timing. Our feeding specialist was on vacation for 2 weeks and was coming home on the day of surgery. The nanny had gone home to Holland and was home Apr 3 but got hit with a bad cold, so she couldn't work. Our support system had holes. Big holes. So... tube comes out, Ryan starts eating, oh - both kids got colds. If Ryan was sick, it was obvious that we wouldn't do the surgery. If he was well, then we had to decide if we thought he could keep eating the way he was, or if he was going to need the tube as back up. I couldn't wrap my head around putting him through surgery for a 'back up' tube. He was doing well, not perfect, but well. We needed 2 more weeks but we didn't have them. I had to check in with the G tube clinic on Apr 2 to tell them whether we were or weren't going to proceed with surgery. On April 2 he was still congested, so he wasn't at his 'baseline' of health. That was the immediate concern. He was also doing well with eating, so we (along with his pediatrician and the complex care team) decided that we would postpone the surgery. Of course the day we make the decision, Ryan's reflux struck with full force - causing him a couple of terrible days of eating/vomiting/making me feel like we made the wrong decision. However - a new med was introduced, he began taking his other meds more reliably, and low and behold, his volumes increased, his reflux decreased and here we are still tube free. I'm still on eggshells daily because the meds are the hardest part. The medicines are designed to reduce reflux, but very often when we give them, he gags, coughs, then pukes - before the feed has even started. We've tried all the 'tricks' the med soother, diluting them with water, I even got them custom compounded with banana flavour... He's been improving, so I think he's getting used to them. Until tomorrow.
We have been lowering Ryan's oxygen daily now - so during the day he's on the lowest setting before 'off'. Once he's on this setting 24 hrs, we'll start with 1 hour of 'off' per day. If things go smoothly, I think he could be done with it by June or July. Oh I hope. No tubes will be amazing.
It was one year ago next week when this whole drama started to unfold. I was admitted to Southlake around the 21 of April. Lately I've been wondering how they missed what was going on and feel like if they had sent me to Sinai in the first place, would we have been able to intervene before it was too late. I know there is no point in wasting energy thinking about that kind of thing, but my mind wanders when I'm wide awake between the hours of 3 and 6 am. Lately my internal alarm has been ridiculously dysfunctional and I'm becoming a full fledged insomniac. I wake up and my brain starts in immediately on all things Ryan. He is truly all consuming. I have this overpowering desire to make him ok - to make his life as good as possible but it's coming at a cost. My sanity. I'm working on finding some balance and giving him credit for how far he's come. I find it hard to take credit on how hard we've worked to get him here but sometimes I get a good dose of perspective when I look back at photos and videos of where we were a few months ago. There a few members of team Ryan who work hard pushing me to embrace our successes and I'm starting to slowly allow myself to do so. Maybe if I start to do it more often I'll be able to sleep again. I always have this feeling that things will turn bad again. I guess I have to realize that it can never be as bad as it was 1 year ago.
Ryan's birthday is less than 2 weeks away and we've got a few little things up our sleeves to celebrate. I've become accustomed to not making 'set in stone' plans, so this birthday has quite a different feel than Sadie's first birthday. We'll do something small on the Sunday but I feel the real celebration will be in August when (hopefully) there will be no oxygen and we can have something outdoors (to avoid germs!). Stay tuned for a special birthday post if time and life cooperate over the next few days. My recent pictures are on a different computer - I know I owe some. Thanks to those who have continued to send messages and check in. I suck at face to face visits, but I really do like hearing from the outside world. There are lots of babies being born over the next few months to some good friends - I hope to meet all the babes before they start walking!!
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