With a medically complex child, there are many specialists involved in the care, and accurate record keeping is vital for the health and safety of that child. A small error can result in major complications. Complications that can be life threatening. Thankfully, that didn't happen for us, but with everything that fell through the cracks with Kai during this last surgery, we are very very lucky it didn't.
We've had an interesting couple of weeks. Kai went in for his third surgery on his ear. In conjunction with his surgery, he was supposed to get his new ventilator. J took off two days of work so that we could not only be there for Kai's surgery, but also get the training that we needed for the new ventilator.
The surgery went smoothly, and Kai did well. He was back to his cheerful self within a few hours of waking up. Dr. M said that Kai's eardrum looked a little funny (more explanation in a later post), but he was able to successfully widen Kai's ear canal (for the moment), and he didn't see the colesteotoma. Hopefully it is all cleared.
Kai was put on the Trilogy (the hospital version of his new ventilator) during the surgery. Post-op he was kept on the hospital ventilator so that he could do his overnight observation on the new vent. So far so good, right? Well, not so much. Kai had no issues with the transition. He rebounded surprisingly well. The issue came with the fact that the home vent had never been ordered. What? This had been in the works since August. In fact, I repeatedly made mention about the vent switch whenever we talked with anyone (meaning docs, registration, staff, etc) about the surgery. Everyone was aware this was happening, but the vent was never ordered. Errr.
Second, we were supposed to receive training on the new vent while Kai was in the hospital. It was one of the main reasons J took two days off work and I had my grandpa on standby to watch the girls, so that we could get the training required. It was three days of training for the LTV (the old vent). J was told that the new vent was ordered and that we would receive the training at home by Kai's home Respiratory Therapist. Okaaay, a little unorthodox, but we won't argue.
Third, before going into surgery, all stats are taken--a minimum of three times.
1. You get the registration call--you give the person all the history and info on your kiddo, including trach size, vent settings, prior surgeries, current medications, etc. This can be a lengthy process.
2. Next comes the information call. They call to inform you of surgery time and when to stop food and meds in preparation for surgery. Since Kai is vented, they also go through vent settings, trach size, and meds just to double check.
3. Finally comes the day of the surgery. If you are lucky, you only have to go through all the information in Step 1. once with one person (usually the nurse). If you are not as lucky, you have to go through Step 1 at least two to four more times, with the nurse and the anesthesiologist and any docs (who aren't Kai's surgery doc) that may come in and are assisting.
Having gone through all that, there shouldn't be room for error, right? I mean, things have been double, triple, quadruple checked...right?
Haha, isn't that the irony of it.
Somehow, things still get messed up. The vent not being ordered was a minor (yet major to us) thing. The fact that we didn't get the training in the hospital was slightly more of a big deal (although not so much to us, we're pretty savvy when it comes to our son's breathing--but a HUGE liability for the docs if something were to go wrong). Even bigger was the fact that written down on all the records was that Kai has a cuffed trach. He has
never had a cuffed trach. For those who aren't familiar with the inner workings of a trach, a cuffed trach has a balloon that fills with air to help with leaks and large stomas. Kai has a leak, but not enough of one to warrant a cuff. On top of all that, Kai's discharge papers say that his trach is a size bigger than it is. So they have him wearing a cuffed trach a size bigger than he actually has (on paper, anyway). That is huge. If there was an emergency and they had to get a new trach, going on what they have written, it wouldn't fit Kai and things could go south very very quickly.
The part where things really just fell through was vent settings. The LTV and the Trilogy are different vents. Yes, some things about them are similar, but it is like comparing apples and oranges. They are both fruit, and round, and good to eat, but they are very different. The Trilogy has more in-depth sophisticated settings, and because whoever was in charge of writing things down didn't write down exactly what they had set the hospital vent settings, Kai's RT had to do some guesswork when he was setting up the Trilogy for us at home. Guesswork when it comes to our child's breathing? Oh no. Luckily, I have some knowledge, and between the two of us we were able to brainstorm what would work the best for Kai. The RT was able to give us the training, but he was very nervous about doing so, and even said that had it been anyone but us (because we're just that good ;-)) he would have sent us up to Primary Children's to get the training. He came over twice that first day and then again the next day to make sure that Kai handled the change.
It has been a week on the new vent and so far so good. Kai seems to be adjusting to it well. There was a small scare the second day when he was just overtired and hurting. He wasn't acting like himself and hadn't slept for more than two hours since switching vents. He goes through those spurts, however, and after giving him some Tylenol, he conked out for twelve hours. He's been a happy boy since, not giving us any more scares.
We absolutely love the new vent! It is SO much quieter. It also doesn't give us the "nuisance alarms" that the LTV did--as in alarming every time he coughs or laughs or sneezes, or simply breathes a little differently. The alarm is a lot less annoying as well. It has a chime to it, which is so much nicer than the seven beep system of the LTV. It's digital, so we can see everything that is happening on the same screen. It's also about half the weight of the old vent, which is so nice. It has a few quirks that we are getting used to, such as the exhaust valve being right at chest level, which allows for excess moisture to drip onto his clothes. For some reason it also uses twice the amount of humidification than the LTV. Strange.
As for the hospital. I'm not sure what to do. I still remember vividly when they had written in their notes that Kai lived in a group home. It still rankles me to think about that. I would think that with technology and computers in every room, that accurate records would be easier. I am aware of some special needs parents who have all the information printed out and they hand the paper to all who need to know the info. I haven't gotten to that point yet, but I'm starting to think that it's a good idea--for more reasons than just convenience.
Just a quick update: Kai is recovering well from surgery. We had his follow-up appointment with his ENT and other than some severe granulation tissue build-up, all looks great with his ear. We are hoping that his ear canals will stay wide open. The granulation tissue (which is a normal thing) was actually visible when you looked into his ear, and Dr. M used tweezers to pull it out. Needless to say, Kai was
in quite a bit of pain that day. Thankfully, he is back to his happy
self and his ear seems to be healing quite nicely now.
Kai was put on the Trilogy (the hospital version of his new ventilator) during the surgery. Post-op he was kept on the hospital ventilator so that he could do his overnight observation on the new vent. So far so good, right? Well, not so much. Kai had no issues with the transition. He rebounded surprisingly well. The issue came with the fact that the home vent had never been ordered. What? This had been in the works since August. In fact, I repeatedly made mention about the vent switch whenever we talked with anyone (meaning docs, registration, staff, etc) about the surgery. Everyone was aware this was happening, but the vent was never ordered. Errr. 
Second, we were supposed to receive training on the new vent while Kai was in the hospital. It was one of the main reasons J took two days off work and I had my grandpa on standby to watch the girls, so that we could get the training required. It was three days of training for the LTV (the old vent). J was told that the new vent was ordered and that we would receive the training at home by Kai's home Respiratory Therapist. Okaaay, a little unorthodox, but we won't argue. 
The part where things really just fell through was vent settings. The LTV and the Trilogy are different vents. Yes, some things about them are similar, but it is like comparing apples and oranges. They are both fruit, and round, and good to eat, but they are very different. The Trilogy has more in-depth sophisticated settings, and because whoever was in charge of writing things down didn't write down exactly what they had set the hospital vent settings, Kai's RT had to do some guesswork when he was setting up the Trilogy for us at home. Guesswork when it comes to our child's breathing? Oh no. Luckily, I have some knowledge, and between the two of us we were able to brainstorm what would work the best for Kai. The RT was able to give us the training, but he was very nervous about doing so, and even said that had it been anyone but us (because we're just that good ;-)) he would have sent us up to Primary Children's to get the training. He came over twice that first day and then again the next day to make sure that Kai handled the change. 
Lastly, Kai's scoliosis has gotten to the point of needing surgery. His curve is between a 76-78 degrees. Anything above 75 they recommend surgery. Boo. Super scary, because they will be placing rods in his back to help straighten out his spine. The good news is, he is a candidate for a new technology called magnetic rods, which will negate the need for repeat surgeries every six months or so as he grows. Instead, they will be able to magnetically lengthen the rods as he grows without cutting him open. That's the theory, anyway. It's still a relatively new procedure. When he is done growing, they will fuse his spine. 
Again, taking it back to 2014; Kai had an appointment and Zuri was out of school for the summer. I was unable to find a sitter for the girls, so I took all three to the appointment--and survived! As you can see, by the end Kai was not very happy, but that may have more to do with the appointment itself than the situation. The girls did pretty well. River was happy as long as I was standing up and moving, so I couldn't sit down.
Zuri attended a summer dance class for the second year which was put on by one of the young women in our neighborhood. She had a lot of fun with the dance class. She danced to the Lion King's "Hakuna Matata." 
I have already shared about Kai's sleep safe bed (see Big Boy Bed) but as I was scrolling through my pictures I found a few more that I hadn't shared (and a few favorites I have). Kai also got a new bath chair not long after the bed came in. It seriously felt like Christmas for him.
We happened to be in London the day before the Tour de France. Consequently, they were setting up for the big event, in which they completely shut down parts of Parliament Square to vehicular traffic, especially Buckingham Palace and the road leading to it. So for us, we had the rain which drove many people inside, traffic was already being cut off, which meant fewer people, and the setting sun. Perfect conditions! 
