The not-so-great thing is that now our nursing is permanently transferred to nights. So, now we don't have anyone there during the day to help us, which makes errand-running more difficult, resting is not an option most days, and going back to work has involved A LOT of paperwork on my part.
Yes - that's right, I've gone back to work. And I couldn't be happier! Yeah for typing at a computer! Yeah for talking to people above my hip height! Yeah for doing SOMETHING NORMAL. I never thought as a government worker that I'd be this excited to go back - don't get me wrong, I am blessed to be a federal employee, but my work...is ... dry? My blood pressure will never rise because I will never find myself in an emergency situation. My brain will not turn numbers and medical criteria into an operable function for someone to use in a life saving situation. Nope. I just type at the computer all day, and answer mundane questions about stuff that really isn't going to save a life. Yup. And. I. Love. It.
So, back to Wyatt. He is just the bee's knees right now. No, he doesn't carry sacks of pollen on his knees, but he's great. That's for sure. He is loving life, he is full of energy most days and hasn't been admitted to CHEO for well over three months now. I think we're approaching a new milestone!! No aspirated pneumonias, which can still happen with a trach, but for Wyatt, it seems to very much help him with NOT aspirating. You see, because Wyatt had the opportunity to develop a "good cough" he is able to very efficiently cough his phlegm/secretions out of his trach, so much so, that sometimes he actually coughs his cap off of his trach. Have you ever been hit in the eye with a trach cap? I have. And you know that's not the worse of it. Have you ever been in the eye/face with a wad of phlegm shooting out of a trach? I have. It's like being slimed by Slimer.
Gross. But my love for Ghostbusters knows no bounds.
Anyway, for those of you who do not understand the difference between a "capped" trach and a regular open trach, here are some pictures:
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| Wyatt with his cap on. |
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Wyatt with his cap off. |
Basically, there is a cap that goes over the trach and Wyatt
continues to breath through his mouth and nose like a normal child
should. If the cap is off, this means we are supposed to put what is
called a Swedish Nose on his trach, to allow the air to be somewhat filtered
and humidified. If there is no cap or Swedish Nose on the trach this can
cause Wyatt to be susceptible to viruses, bacterial infections, dust and other
air contagions because he lacks the ability to filter the air (our nose does this
for us: those tiny little hairs in there - yah, that's their job). So,
for the most part, Wyatt remains capped. When he is really sick, that is,
his nose is plugged up, we can put the Swedish Nose on him, and it allows for
easier breathing; especially at night time.
So, you ask, why do you need a nurse at night, if things are easier with the trach? Well, that's the hard part (does the irony escape me - no, it does not). Wyatt still requires interventions at night, be it, a saline mask, suctioning or repositioning. Same old, same old really. He also has a humidity mask that goes over his uncapped trach at night, which requires monitoring. And with all of the new medical equipment, it meant we could no longer get away with Wyatt spending his random nights out in the playpen in the livingroom (supervised by a nurse) and the rest of nights next to my bedside, in his crib. Now, he has his own room and our middle child has moved into his sister's room and their large double beds have been converted to smaller, twin-sized bunk beds. Everyone has had to change with Wyatt's trach, but everyone is still happy and that is what counts at the end of the day.
Wyatt still gets sick. He is on antibiotics for Strep - and so is mom. Wyatt still has his days where we panic, because we think something is in his mouth, but its been short lived panic attacks...not hour-long brain explosions of worry and hopelessness. Seeing a hole in my son's neck is kind of gross, but it's not like we have the opportunity to see his bare neck often - the trach is in there 24/7 and is only changed once a month. The changing takes seconds and is short lived. It's easier to change a trach than to insert a Gtube, and ten million times easier than inserting a NGtube. So, we were prepared for this new hardware. We have the experience, the know-how, the chutzpa to get the job done and so far, with one yeast infection to date, I think we've done a pretty good job.
Wyatt began his TENS procedure last month, so once again, we find ourselves in a new frontier for his trismus. We are trying to 'exercise' his frontalis and temporalis muscles and the TENS unit allows us to do this with mild, electrical stimulation. The results have been promising so far, he is talking more and our osteopath has been able to "get into" his mouth easier. Dad has even been practicing oral stretching with Wyatt - that means, our 2.5 year old stretches his own mouth, by placing his own fingers into his mouth and pushing down. It sounds simple, but this is kinda a big deal.
Wyatt is also going to be monitored and seen by CHEO's Physiotherapy unit. After seeing his neurologist last week, we were told there is a likelihood the tightness in his jaw will eventually migrate to his ankles and hamstrings. To avoid this, Wyatt (er- his parents) will have to do specific stretching for the unforeseeable future to his ankles and hamstrings. Have you ever done physio with a toddler? Like most things Toddler - it's not easy.
Wyatt's website has been updated: www.whatswrongwithwyatt.com so check it out. There is a new medical timeline that really simplifies the various tests Wyatt has undergone and their results. A new section on his TENS unit, and loads of additional information has been uploaded. Pictures are next!
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| Snow day with his best buddies! |
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