Update: Questions & Frustrations

[Trecurtis]

So I wrote my first thread last week after being a lurker regarding Cash and his sat's and trusting my gut! Thankfully with your guys encouragement I trusted my gut and we headed to the ER.

We qualified for nursing on the first of May, but have been having hour nurses visits since his PICU departure on the 17th of April. The nurses would come two to three times per week. I last stated that I though Cash was sick and they would state that he was slightly course (lung sounds) or slightly wheezy. On Friday, day two of nursing I walked in to find Cash sating at 90% o2 and struggling to breathe (chest constricting). The nurse just stated that he looked okay and sounded better than he did the day before and marked on her notes no signs of distress...are you kidding me! Not to mention that Cash has healthy lungs, he is just vented due to his CCHS.

Friday evening it didn't get any better and I got care arranged for the other two boys and took Cash into the ER, he is now in the PICU for the next week. He has a staph infection and pneumonia. His pulmonologist is running lab work to test for an immune deficiency. He has been on 10 antibiotics since his tracheostomy on Feb. 28...and she wants him to have ten solid days on an IV antibiotic. On top of that speech therapy came in and stated that his trach is to large, he has an air leak and may be aspirating. SO it looks as if we have a bronch added in there for a custom trach and barium study.

Thanks again for letting me vent and for sharing my adventure.

[faywrayy]

Well that sure is a a lot to take in isn't it? Tell us again, how long has Cash been home? How would a speech therapist know his trach is too large? AS for the antibiotics, Kate was on tons last spring, for one thing after another. It took a bout with c diff to find what works and what doesn't.

It sounds like everyone is getting to know Cash, and his baseline. It takes time, but you'll know eventually what's normal, and what most certainly is not.

[Ainsley's Mom]

How would a speech therapist know his trach is too large?

And what does she mean he has too much of an air leak? And because it's too large? Isn't it usually the opposite. Big trach = less leak due to trach taking up more space. Does he use a PMV. And I really don't understand how she'd know if he needs a custom trach. Ah well....explain if you want but don't feel you have to.

I'm glad you got him the care he needs and I hope you find some effective antibiotics. Hang in there!

[alizesmom]

Sorry for the frustrations with the nurses. You did right not listening to them. Sorry you guys are stuck in the PICU. I'll say a prayer that you get the right antibiotic. :hug: Karen

[Trecurtis]

I probably should have explained things better, but explained them to what I understood at the time. Cash has an air leak because the trach is to small in width. The speech therapist was referring to the length of the trach he is in a 3.0 peds and she was thinking he should be in a neo. He does have a PMV but can not tolerate it. He has a hard time when the trach is even covered with a finger tip. Once again I apologize for not being clear. Cash has only been home for 27 days, 12 after discharge and 15 after leaving the PICU for the first time. He will remain in the PICU on IV ab's until Sunday.

Cash had his barium swallow today and does not seem to be aspirating, but has fluids going up his nose. Of course I got the standard we will take a further look at it and get back to you. I hope this was a better explanation.:blush:

[Ann]

Tracey - sorry to hear Cash is back in the hospital. I'm sure (hope) that the speech therapist's comment regarding the length of the trach was simply a suggestion, as I'd hate to think that speech therapists are the ones deciding if a trach is too short or too long. A bronch by Cash's pulmonologist or ENT should be able to resolve any questions regarding the proper trach size.

Hang in there ... it's so tough to have a child in the hospital and other kids at home. It's also difficult to have too many people in charge, while at the same time having no one really in charge (a big issue I have with the docs in Phoenix). I know you have a great pulmonologist and hopefully, she will lead the team and get all of your questions answered (trach size, immune issues, etc), so that when you and Cash leave the hospital you won't have to return for a very long time.

Good luck. :hug:

[KJKK8437]

A bronch by Cash's pulmonologist or ENT should be able to resolve any questions regarding the proper trach size.

:hug:


Good luck. Keep us posted; we're all thinking about you and Cash.

I'm curious about Ann's comment. Does everyone do it that way? We were upsized on the basis of an x-ray with the existing neo in place so that the doc could see if there was enough room for the extra ped length. (Huh, I just thought about what I said. I guess that means everyone does NOT do it that way. Silly me.)

[Ann]

My point wasn't that the decision had to be made based on a bronch, but rather, the decision needed to be made by a pulmonologist or an ENT, not a speech therapist.

[KJKK8437]

My point wasn't that the decision had to be made based on a bronch, but rather, the decision needed to be made by a pulmonologist or an ENT, not a speech therapist.

I agree 100% (sorry if I implied otherwise.)

[faywrayy]

Kate was upsized at my suggestion. She was in a neo for over a year, but after that year, she was able to decannulate by turning her head the wrong way. I asked, and ENT agreed.

I'm with Ann, I'd hate to think speech therapists are the ones making these decisions. And doesn't there need to be a leak of some kind in order to use the PMV?

Also Kate was given a PMV less than a month after being trached, but she could not tolerate it for more than a minute or 2. It took until she was 6 months, with 2 holes drilled in the side in order for her to tolerate it at all. All I'm saying is it takes time and getting used to. Eventually, she was able to go back to no holes, but that took some doing on our part.

[Ann]

I agree 100% (sorry if I implied otherwise.)

I should have also said ... I agree that there are many ways for a physician to determine whether a trach is the appropriate size, a bronch being just one way. :)

[drct1245]

Hey Tracey,
I hope you can get more info on the swallow study. :hug: I really don't have much to add...

[welovelucy]

Tracey, just reiterating what others have said, make sure that an ENT and/or pulmonologist is making the decisions (along with YOU, of course!) about upsizing Cash's trach. Speech should NOT be making those decisions for you.

Plus, having an air leak (in and of itself) is not necessarily bad, unless Cash cannot get properly ventilated with it, or is aspirating, or some other medical reason. Having an air leak can actually be good (as long as he tolerates it) because that is how our LOs can learn to vocalize (i.e., around the trach). But unless there is a medical reason (which there very well could be), I wouldn't think he needs to upsize. You could also investigate getting a cuffed trach, rather than a custom trach--because it could then be de-flated during the day, but inflated at night when he is on the vent...

Also, I feel for you on the roller coaster ride you are on. I remember those days--and they were tough (especially since I, too, have an older child). As I mentioned to you previously, Lucy was hospitalized multiple times shortly after coming home, but each time got shorter and further in between. So, as hard as it seems now, there IS hope!!!

Hang in there! (and hang out here!)
Sarah

[Kaylie]

Wow thats alot going on forsure. i hope the iv antibiotics work and your little one gets well real soon. When you come home will you get more nursing hours on a steady basis to help you?

[Kira]

I'm sorry to hear what you and your family are going through. I hope that Cash gets getter soon!