Levi update:
We’ve had a lot happening in the background for this little guy lately. About two weeks ago during an audiology follow up, it was confirmed that Levi has moderate conductive hearing loss. As they were doing the levels to make a referral to hearing Australia for a hearing aid, they then realised that one of his grommets had already fallen out. This needs to be corrected ASAP in order for audiology to be able to complete their report for hearing Australia; so Levi was placed on an urgent surgery list to be sorted within the month.
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During our appointment with the ENT, we discussed Levi’s previous surgery &the diagnosis that came from that of laryngeal/pharyngeal dystonia. In short, Levi’s airway & voicebox are moving involuntarily. This would be quite scary when he is trying to eat & drink hence why he stopped doing those things for the most part. There is no medical intervention available that we aren’t already doing to fix this so it could be a longer term issue. Our ENT has advised that it would be a much more suitable option for him to get a gastrostomy button to give him the time he needs to have more speech therapy & work through his feeding skills without all the tape on his face etc.
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Steve & I have lost hours upon hours of sleep over this decision. It has not come lightly, especially since we just closed Lily’s stoma up. We are believing that this time around his stoma will heal & rather than it being a thing of discomfort & annoyance, it will allow Levi to thrive & grow & get more confident with eating & drinking at his own pace. It will also mean that Levi can have more of a balanced diet whereby we can blend up the food we eat ie. fruits & vegetables & proteins, & give that through his button. This is not possible with an ng so currently he is completely fed on formula. With already having needed 3 iron infusions due to deficiency, he is really in need of better nutrition. This will allow that.
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So this Thursday he will be having surgery. Please be thinking of us & praying that it all goes well. Onward & upward for our dear boy. We still shake our heads in disbelief when we are reminded of all that he has overcome.
We have some exciting news to tell you. Next Friday Lily is having her feeding tube removed. She has been managing her eating & oral intake of water safely for some time now & all agree that she no longer needs her gastrostomy button. 🎉🎉🎉
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It will be really nice to not have to worry about it leaking & causing her discomfort. We discovered whilst meeting with her surgeon that she has somehow managed to get an abdominal fistula so that will also be fixed during surgery.
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The button really has been a bit of an ordeal for her. It was meant to be a better option than the ng, but unfortunately Lily’s body never healed properly & the tract (hole that connects the inside to the outside) has been almost always irritated & stinging, especially when she eats anything acidic. For most people their stoma’s look clean & tidy & painless, but Lily’s has remained red & irritated almost constantly.
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Her surgeon said last week that even if she still needed continuous feeds, it would not be suitable since fluid would be constantly leaking so we would need to resite it anyway. We’ve had a few people comment that it seems too soon to close it, but this decision has not come lightly & we feel that this is a huge step towards normalcy for Lily. .
There are a few things being looked at in the background for Lily at the moment regarding her growth but overall she is doing fantastic. She has come so very far & it’s really nice seeing her personality come alive. So next Friday is the day. She will be in overnight & have a small period of recovery at home. We are looking forward to letting her eat all of the citrus fruits without worrying about them stinging her tummy 🍊🍋🍓🍍🍑🥝
We are home! Yesterday, thanks to Levi’s very understanding paediatrician, we came home. He still has a few weeks of antibiotics to try & kick this bacteria to the curb & he’s come home with a cannula in so that we could finish the remaining iron infusion he needs at our local hospital. In order for this to work, we are dropping in to get his line flushed since his midline (the one we were meant to go home with) cracked at the end of his last infusion. It’s not usually done this way so I’m grateful for a team who know us & understand our situation.
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During surgery, it was found that Levi’s neurological movement disorder not only affects his airway during a seizure but also at other times. Essentially, in the same way that at times his muscles would spasm as if he had Parkinson’s at times, his airway is doing this too. Other than getting a good dose titration with his meds, there is not much we can do about this one. I’m hoping that with time he will improve, but if not, we will just press on.
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The next thing on the list for him is another sleep study so that we can hopefully ditch the oxygen tank. We are looking forward to seeing how much better he goes now that he can breathe better. .
Thanks to everyone who’s been checking in. We love our little village of people. This mama is so happy to be home & I think the little guy is too.
Update.
Another rough night for Levi. He had continued fevers through the night, along with a high resp rate & tachycardia. Some initial results have come back from the lab from the samples taken from his lungs & airway which reveal that Levi has a gram negative bacteria in his airway. In terms of bacteria, this is the kind that is often resistant to antibiotics & can do some damage. It’s likely been there for quite some time since he’s been wet & rattly for months.
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His iron is also at a critical level so we need to run an iron infusion. There’s talk of whether he has aspirated orally or whether he has been aspirating reflux, since the type of bacteria he has, doesn’t really show up in airways otherwise. We are waiting on another doctor to come talk to us about next steps, but one of those will likely include moving his feeding tube further down into the small bowel to reduce the risks of him aspirating reflux. I’ve already been warned that we won’t be coming home any time soon. This will take a while to get under control. Thankyou to everyone who’s been checking in with us. We really appreciate it
