Boy time sure starts to escape and run together all at once when you are in the hospital as long as we have been! We first went to the Mary Bridge ER for what we thought was going to be IV hydration and anti-nausea medication on Monday, July 20th. Flash forward 5 weeks later - we have been through 3 surgeries and are looking at another 5-6 weeks before we can discharge home. Harrison is stable and improving some every day. He had his latest surgery last week to insert his new G-J feeding tube that delivers continuous formula past the stomach and into the small intestines (J). The “G” portion of the tube allows for venting to occur from the stomach. This was something we had been considering for quite a while due to the myriad of feeding difficulties we’d been facing for well over a year now. This will help reduce his vomiting and deliver the optimal amount of formula needed to maintain plus actually gain weight. Yay! We are hoping to roll back the tube to just a G-tube for regular stomach feeds so that he can not be fed 24/7 (G-J requires continuous feeds). The stomach can expand to accommodate large quantities and slowly moves it through into the intestines whereas the small intestines cannot tolerate large volumes. That is an easy process to switch to but it will be a battle another day…for now we’ll focus on the J-feeds to ensure he gets what he needs while he’s healing without vomiting & constant constipation.
Harrison’s tracheostomy stoma is healing well although it is larger than they were hoping for. That plus a “false shelf” is complicating his trach cleaning routine. His trach ties have to be very snug in order to keep the tube in position within the airway, otherwise it works its way out and into this weird spot that makes him struggle with oxygenation. This has happened twice and was the culprit for our Rapid Response/Code Blue a couple weeks ago. His stoma is a little angry right now (red and irritated on the top) because the extra snug ties and the suctioning hooked up are pushing the tube too high in his throat creating a keyhole wound. The Wound Care nurses are going to take a look and see what could be done differently to settle the site down.
Harrison’s Halo vest is holding up remarkably well. They are cleaning the pin sites routinely and so far he has not had any drainage from those 8 screws securing the Halo to his skull. We have roughly 2-3 months left of this before it can be taken out. He vomited for the first time the other day, but thankfully it was just spit and stomach secretions, so it cleaned up pretty easily. They had to do an additional trach site cleaning and bring in the orthotics team to carefully remove the liner and clean it best they could, as well as to ensure the skin underneath was thoroughly clean and dry. Man oh man…talk about a hassle. We’re SO grateful that his reflux is under control and that we’re feeding past the stomach (J-feeds) because this would be IMPOSSIBLE to keep clean with how much he vomits normal!
Finally – Harrison’s spinal fusion is healing well. No real news on this. They decompressed the area from C1-C3 to help free up room for the spinal cord. They also took some bone from his hip and fused the base of his skull down to the C3 to reinforce and fix the instability caused by the damaged (or possibly malformed) odontoid process. That lesion is still in the C1/C2 area, but they feel that it is likely evidence of past trauma/inflammation that didn’t have anywhere to go. The low muscle tone caused by his syndrome made him highly susceptible to this type of injury…we’re just so grateful that it was caught in time & wasn’t worse!
Now for the burning question most of you are probably wondering: Will he be on a ventilator for the rest of his life? Short answer – we don’t know. We are hopeful that he won’t be, simply because they continue to modify his ventilator settings downward so that he is less dependent on the machine for initiating breaths and continuing to only need standard room air (not additional oxygen). His respiratory treatments are reducing in frequency too. The medical team will continue to challenge Harrison and are closely monitoring new changes with regular blood gas tests to see how well he is doing with his oxygenation/CO2 exchange.
He’s still being evaluated for the potential of Inpatient Rehab but he’s not quite there yet. His tone is still returning, and we only saw him start to adjust himself in bed (& lift his bottom off the bed during diaper changes!) for the first time three days ago. We have seen movement in all four limbs but there is definite decreased abilities and sensation, and so it’s just too early to see what the extent of the long-term effects might be from the spinal injury. His syndrome (AHDS, MCT8-deficiency) makes it hard on him normally for gross and fine motor control. Part of doing rehab is being able to respond to prompts from therapists and he struggles to do that normally. This may be a situation where he continues receiving therapies while we finish our family training and recruiting our in-home nursing team. We cannot be discharged until we’ve been fully trained on how to deal with the realities of his trach/ventilator (6-weeks of training minimum!) and have in-home support in place. He has to have somebody trained with him 24/7 from here on out. We qualify for 16-hours of daily in-home nursing, but we’ll have to see what the agencies are able to find for us. In-home nursing is always tricky to find coverage, but at least COVID seems to be making this slightly easier with the reduced amount of care people are seeking at their local doctor’s offices and fewer elective surgeries being scheduled. A lot of in-home nurses are scared to go into other people’s homes (understandably so!) but some of them simply need hours so they can have a paycheck, and are actually more available than they used to be.
Well that’s the news for now. We’re going to be celebrating Harrison’s 4th birthday shortly (8/29) and are simply grateful to still have him with us! We came dangerously close to losing Harrison, and it was only with an amazing group of medical professionals at both Mary Bridge and Seattle Children’s that he’s alive, stable, and beginning to improve. Life is slower for us right now but it’s good - there’s peace in the pace and small victories continue to be found daily.
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