Appointment Update

Mackenzie had her first GI appointment yesterday in Raleigh and a 3 stage pre-op session today at UNC. We're all exhausted, to say the least. I hate when appointments are back to back like that (and not on the same day), but there wasn't really any getting around it this time.

Starting with GI - a lot of questions were raised and treatment options mulled around. Right now they're on hold until after the bronch to see what her airway looks like. The GI nurse practitioner that we saw (who was terrific, btw) is trying to get a physician to do an endoscopy at the same time as the bronch on Monday but we're not sure how that's going to pan out. She said if she can't find someone, it's no big deal because she doesn't feel that would change the treatment anyway. More than likely what will happen is we'll be switching Mackenzie's formula to a pre-digested one like Enfacare or Neocate. Then there will be some tinkling with meds. They can either decide to increase Mackenzie's prevacid to 15mg twice a day (right now she's on 7.5mg in the morning and 15mg at night because her pulmonologist boosted her up), or they can add Zantac into the mix. I'm fairly confident they'll also add a gastric emptying medicine similar to reglan (with less side effects). I was told that if she is going a day without stooling to give her milk of magnesia (not looking forward to that) to keep up the mobility of her stomach. Right now there's no definite answer to if Mackenzie needs a nissen fundoplication or not. Based off of the drastic differences in Mac that we've seen from the volume/med changes already, I feel pretty good with the idea of maximizing meds. I don't feel like we're wasting our time in doing it. Always good. :o)

SO! On to today's fiasco... that took forever, btw. The 3 stage pre-op basically consisted of talking with a ENT resident and signing general consents, then the ENT performing the bronch, and finally the "pre-care" team and anesthesiologist. We also got to see the trach nurse (we also do - I love her), a social worker (routine), and the NICU case manager who helps me book appointments (another person I love).

The forms with the resident were no big deal. The typical "can we give blood" and "can we resuscitate" statements. I wasn't too impressed with the resident, although I never am. I think it's less of a problem with them and more of a problem with me - I know they can't answer my questions, so I rather not be bothered. It sounds harsh, but has proven entirely true... and when you get to the point of having to coordinate different specialists and that sort of thing, all you want to do is talk to the person with the answers.

Now what I didn't expect in signing the forms was the huge wave of emotion. For some reason it took me back to the very first bronch where Mackenzie was trached, and the memories started flooding in. I joke about it quite often how I gave verbal consent to the trach without a second thought, and how the term "rare" was thrown around to describe circumstances that would involve a tracheotomy... but every so often I guess you get thrown back in time to the emotional intensity of the situation. I'm very grateful those moments are becoming less and less frequent, but the pain doesn't seem to dull much.

The chat with Mackenzie's ENT went a lot better than I was anticipating. I've heard rumors (we all know how much we can trust rumors) that he's "pull happy" with the trach... and for some reason my irrational fear was that he would pull Mackenzie's trach not realizing she needs the CPAP (and back-up rate) at night. I don't know why I even thought he would do that, but it was a huge fear for me. We talked about Mackenzie getting upsized and that I didn't want him to do anything to the hemangioma. He agreed that waiting was our best option and that if we get to the point where Mackenzie's off the CPAP but the hemangioma is still there, we can address treatment options then. I asked what his policy was with regard to decannulation because I was recently told that this particular ENT didn't believe in seasons. ((Basically most ENTs will not decannulate a kid during the winter because of the risk of infection and the child not being able to manage their secretions. Also most ENTs require a child to make it through one winter successfully before being a candidate for decann.)) He told me that he wouldn't pull her trach during the winter, and that typically they do want the child to go through the winter but if a child was ready, in every sense of the word, during the spring that they'd have to decide if waiting essentially another year would be better than decannulation during the summer.

What I, personally, got out of this is that next year will probably not be "our" year for decannulation. Running over the time in my head, Mackenzie would have to be off CPAP by March-ish and be doing swimingly at it. With her using the back-up rate on her vent multiple times every other day and us still not knowing the cause of her apnea episodes, I'm not getting my hopes up for it. Obviously it's entirely plausible and I'm not ruling it out as an option... but with something that life-changing and emotionally charged, I'm not going to bank on it. I think most trach parents feel the same about their child's decannulation plans. You'll believe it when it happens. And even when you see your child with a naked neck, there's still a lot of doubts.

Moving on, we met with the "pre-care" team and went over the nitty gritty on when to stop feedings, what meds to hold, etc. I guess they're not used to children on continuous feeds at night because there was a lot of question when to stop Mac's feeds. I also requested the anesthesiologists give Mackenzie an inhaled anesthesia before initiating an IV. I told them she was a super hard stick, and the less trauma the better. The guy said it wouldn't be a problem since she has a trach and they can stabilize her airway easily. If things go the way I hope, she can be knocked out and not know a thing until she's in the recovery room.

Sunday night, Andy and I are taking Mackenzie to Chapel Hill and either staying at the Ronald McDonald House there or getting a hotel room for the night. More than likely it'll be a hotel room because I don't see us fitting in any of the rooms at the RMH. So we'll stay the night in Chapel Hill, have her bronch Monday morning, and head back home after she's finished recovering.

Right now, I think I'm more afraid of the recovery than the procedure itself. I exponentially trust Dr. Z (the ENT). What I'm terrified of is Mackenzie taking a huge step back respiratory wise. This will be her first bronch where she hasn't been on SIMV ventilation. I'm nervous about her waking up and being too groggy to maintain her breathing. I don't know why, but I just have this paranoia that she won't recover well from the anesthesia and she'll be admitted into the PICU because they can't get her off. Surely it has to be unlikely, but it's one of those nagging fears that I have.

On a different note, I happened to run into a trach/vent dependent family that we met in the NICU. I was surprised to see them, and their daughter is doing so well. :o) The last time I ran into them was in February when Mackenzie was in the NICU at UNC and they stopped by for a visit after being discharged. I lost their phone numbers a while back and I've been meaning to see how they were doing so it worked out great. Gah, I can't believe how great their daughter looked!

I also had a former trach mom approach me. Her son is 5 now, and when I first saw him I thought I saw a sunken trach stoma but didn't want to be rude and ask. Thankfully she started the conversation and told me that he was trached for 2 years and was vent dependent. We chatted quite a bit about the roller coaster of having a trached child, and she cried. Seeing Mackenzie's equipment brought back a lot of memories for her and had I known the woman better I would have given a gigantic hug.

Anywho, this is where we stand right now. I'll update more after Mac's bronch!