Hi all, just a quick update and request that you keep little Kyle in your thoughts and prayers this coming week.
Yesterday, Kyle started getting congested, and it appeared that a teething cold was coming. As simple as this could be, it always spells concern for us. For the past 1.5 months+ Kyle has been pretty much off oxygen during the days (only using it for naps & sleep). He was satting fine throughout the day, but his reflux got considerably worse. Which can be hard to determine from a child that usually vomits 5+ times/day. In this case, he was emptying out every feeding we put in – and if forced us to put him on electrolytes to help ensure some hydration.
He spent most of the night coughing, spitting up and crying. But in the morning (9:30am), he was still satting fairly well (1/8 litre). I went ahead and kept him on the oxygen, monitoring him periodically. After his nap, I did another spot check, and he was desatting – and started crying (which usually makes sats drop futher). Within 3.5 hours he went from 1/8 litre requirement to 2 full litres. That’s are notice, per the drs… When he hits 2 litres, go to the ER – so off we went.
He peeked at 3.5 litres by 5PM. Chest xrays revealed what I feared, that at some point this morning, he aspirated. We caught it very early – within maybe 10 hours of it occuring, and it didn’t seem too bad. Official diagnosis was Pneumonia due to Aspiration. With no fever and minimal impact, the treatment wouldn’t even call for antibiotics – but with Kyle, things are always more difficult than that.
This is the second time in the past 7 months that he’s aspirated. We caught the first instance pretty quick as well – desaturation and monitoring is always a giveaway when a problem occurs. We were informed that if it ever happened again, one of two things would happen – both requiring surgery. The first was changing his g-tube to a gj-tube. The difference is that the gj would filter directly into the small intestine, instead of going into the stomach. Kyle currently is not an “ideal candidate” for that procedure because he forceably gags and vomits at the smell of food and other things that effect his aversions (site of a spoon or toothbrush, even a bottle).
The next option would be a fundolication. In this instance the surgeon would create a fold in the stomach, essentially pinching off the area going back up to the esophagus. This is not reversible, and does offer some risks. They can however make the fold not as tight, allowing more flexibility – and prevent stomach atriphe (sp?). We’ll go over that final option in the morning with the dr. With this procedure, Kyle will not be able to throw up again – the issues of reflux will most likely be gone. In addition, he will be able to eat when we overcome his aversions. But it comes with a 10-15% certainty of some alternate issue arising (either during/shortly after the surgery itself to the stomach not functioning ever again).
It appears that we won’t be able to get the procedure until Monday or Tuesday (unless some miricle occurs). In the meantime Kyle cannot eat for risk of aspiration and future complications. It’s very difficult watching your child go through this, and maybe I don’t focus on the bad days and hardtimes enough.
I always try to remain openminded, and informed when it comes to Kyle’s care. I don’t like to worry or stress out too much before a procedure – because it’s out of my control. My only sanity is kept in believing that what’s about to happen is the best thing for him. What I focus on is his recovery. Making sure I know all the potential risks and warning signs, lobbying the hospital staff to ensure that he is taken care of properly and made as comfortable as possible. Helping to reduce risks associated from intubation (our biggest fear is long term intubation and/or trach). And remaining in good spirits when we’re with him. It’s so very important that I’m able to comfort him, and not breakdown. He knows when I’m upset – and it does affect him. All I can do is try to make him feel better – because what we are about to face is probably our second greatest fear (next to a trach) when it comes to critical procedures.
The decision however is not ours – we know that something had to be done, and it’s our resposibility to do what’s best for him. Giving your child over to the drs as many times as we have – putting faith in complete strangers to do the right thing. Knowing that your child will with all certainty face great pain and discomfort. Well, it’s truly the hardest challenge as a parent. You want to protect them from all of this, but in doing so – you’re only causing them more harm. People that have never faced these decisions in life will never truly understand, or appreciate what we’ve been tasked with as parents of this little miricle. Certainly there is simpathy and remorse – but for us, it’s like asking you to choose which bit of torture your child can afford to live with.
I’ll try to update more in the coming days. Please keep Kyle in your thoughts and prayers.