spring awakening
- ashleydking89
- Mar 1
- 5 min read
First off - apologies for the long stretch between updates. It has been a very.. busy but buckled down past couple of months. We have so much to share about our Mighty Warrior! Brace yourselves for a long post - I probably should have broken this up into multiples. Stay until the end and we hope you are blessed today!
First off - his surgery in November went GREAT! The timing was absolutely perfect. We went up on a Tuesday, had surgery that afternoon, and were discharged around lunch or so the next day. He handled surgery well but anesthesia always comes with its own discomfort. Recovery from that alone took almost 2 weeks for him to really feel good again. Not to mention the swelling from all the things he had done (see here). He came home on a 2.5 size trach and we haven't looked back. This is huge in and of itself! Smallest trach size is the next huge step to getting rid of that thing.
A couple of weeks post surgery Gideon got to go to his FIRST Mainx24. This was so, so special. To feel a sense of normalcy. To have all 5 of us together out there doing normal human things. Not only did he get to go, but I got to wear him and I just felt so many parts of Gideon and I healing that day. Baby strapped to me. Big kids running around. Mimosa in hand. We got to see so many friends, stopped by our friends store, enjoyed all the treats. This may have been one of my most favorite days of 2025. Having such a rough past 2 years has really put these mundane moments into perspective and I am thankful for that.
A few weeks later. Literally the week before Christmas, Gideon started showing signs of a cold. He was a little grumpy but was getting junkier and snottier as the day went on. I decided to take him for a walk down our street - and he was using his speaking valve (breathe in through the trach, out through mouth and nose). About one hour after that, Gideon plugged his trach. This was both terrifying and a huge learning experience for us. Read more about our first full on plugged trach here.
Not even 2 weeks after the plugged trach, we were all in bed one night and noticed Gideon's sleeping noises (he was using the vent that night) were unusually.. loud. Not only that, but he started actually crying. Daniel went to check on him and he called for me because the trach was OUT. It was out and slid alongside his neck. This of course put me through a panic after having just dealt with the plug a few weeks back. It was 10:30 at night and we were guessing it had been out at a max of 2 hours.. and was not going back in. The stoma had already started to close up. This is literally something we've joked about but were NOT ready for it to happen yet. The one were trying to get back in had extra tubing on the side. We wound up washing the one without extra tubing and eventually it went back in. That was an exciting night.. the kids went to school late the next day because we were ALL up and were expecting to have to go to the ER which would have been traumatic for Gideon if they had had to put him under to make the stoma big enough for a trach again.
A week after new years Gideon had another surgery - urology for chyptorchidism. We were expecting (and praying that this would not be the outcome) to have to have 2 surgeries and there be complications from it. It was the BEST possible outcome we could have experienced. Gideon did SO great during surgery, even with 7 incisions. He required no oxygen coming out and was pretty happy until the initial numbing wore off. We were definitely not expecting that many cuts for a laparoscopic surgery. Another bout of anesthesia is never fun and it was another 7-10 days of many contact naps and keeping him comfortable.
Fast forward to this week after a few continuous colds. I swear everyone has had something off and on for a month but no one has been terribly sick, just stuffy noses. Thank goodness for vitamin D, elderberry, and echinacea!
We met with our pulmonologist yesterday - a month earlier than originally planned. Gideon has been sleeping off the vent most of the time, only using it for humidification (because the trach site gets DRY!), and for allowing us some sleep because that tiny trach size fills up with goop so fast. We have direction on what to expect next. We are on the wait list for a capped sleep study. In this, we will be in out patient, cap him, get him to sleep, with extra monitoring on his head as well as O2 levels, heart rate, etc. They will be watching to make sure there is no central apnea and that his upper respiratory - the cleft has affected his nasal passage and we hear him snore and snort a lot - is the only thing that may impact his sleep/ breathing. That we can work with. Central apnea is a little more tricky and would be a whole other conversation. As long as he passes the sleep study, we will do a bronchoscopy fairly soon after. If THAT is clear, then we will talk decannulation (getting the trach out).
WHEW. That was a big update as I said. There has been a lot of prayer, coming up against spiritual warfare, and WORK on our end these past few months. The battle isn't over but we are working our way through it. In addition, Gideon is CRUSHING feeding therapy. We've graduated to 2 times per month because he's doing so well. Our big things right now are BITING down and chewing. About 3 weeks ago he started putting his oral stem tool in his mouth all on his own and chewing on one of the tools. Since then, he has been exploring with his mouth A LOT. Toys, paper, whatever he can get his hands on. He is sitting (with some support) and starting to flex his body to push up into sitting. He is even propelling himself forward a tiny bit when he's on his stomach. Again there has been A LOT of work on our end. I take what the OT and PT and SPL's give us and try to repeat those 1-2 times a day (feeding is obviously most meals). It is literally a second job sometimes and somedays we just snuggle and lounge all day (check the snow day pic below). We are thankful to be in such a different place than we were, not just 20 months ago, but even a year ago. Thank-you for sticking around, reading this incredibly long update, and for continuing to pray for our Mighty Warrior and family. Everyone's life has been changed these past 2 years!
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