A Rollercoaster Week (now weeks): Days 9-14 - Trach Change, Training, and Waiting

Sunday, November 11, 2007

This place bores me.

Well, this past week has been primarily recovery from the tracheostomy and getting to know everything about handling a child with a trach. On Wednesday night our ENT changed the trach with no complications. This was an important step in her healing as the first trach change is when the ENT removes the sutures and examines her new airway. In our ENT's words after the first trach change, "the site is healing nicely."

Our ENT also stated on Wednesday night that we would probably go home "within a couple of days." We were also promised on the day of the extubation and tracheostomy that we would go home within 3-7 days. Well, my math skills aren't the greatest anymore, but according to my calculations, that would have put us home sometime between Tuesday and Saturday. Hmmm . . .

Well, seeing how we are still here, (I am actually writing this post from Caro's hospital room), once again we have been deceived by Caro's medical providers. Maybe they just really like her and want her to stay (her hair is quite an eccentric cloud of curly fun). Or maybe the hospital staff find my conversation witty and entertaining. Or just maybe there is a conspiracy between the health care providers to keep her here since we have good insurance benefits and they will certainly be paid (I have noticed that most of the rooms here are empty). Either way we're still here.

That said, things have improved dramatically for us all since we moved downstairs to the Pediatric Unit (from the Pediatric Intensive Care Unit) on Saturday. Our new room has a private bathroom with a shower, a nice bench/couch/bed for hanging out and sleeping on, a door that the staff do not keep propped open at all times during the day and night, less intrusive hospital staff that understand that 4:00 a.m. is a time for sleeping for most people and not for loud conversations in the halls or in your room, more storage space for our stuff, no visiting policy - the number of guests and the times they can visit are not regulated, and most importantly, Internet accessibility (I was able to catch up on some much needed work from 9:00 p.m. until 3:30 a.m. Saturday night/Sunday morning as well as post this blog today as a result).

Besides the drop down to the Peds floor this week, we also had CPR training with a trach, read mandatory manuals and watched a video on trach changing, and Erika even successfully changed Caro's trach on Friday for practice (I will be changing it later on before we leave). We also had all the equipment required for a trach (suctioning machine, humidifier, suction catheters, saline bullets, extra trachs, attachments for the trach, etc.) delivered to our home on Friday. Erika was trained on the use, maintenance, and care of each machine at our home.

We asked for the next gen/top-of-the-line equipment. However, as you can see from the pic of the humidifier below, I have determined that in medical-speak, I should always use the opposite word of what I actually intend to mean. I'm not sure why I had not caught on to this before given that we all know that in medical-speak, if you test "positive" for something it is always bad (negative), and if you test "negative" for something it is always good (positive). Regardless, good luck Erika hauling this monstrosity (weighing in at a hefty 40 lbs.) up and down the stairs with an oxygen tank and Caro.

This humidifier probably had its first use in the '50s.

Anyway, as late as Friday night we confirmed with the docs that we would probably be going home on Saturday or Sunday. I should have known, however, that in medical-speak the word "probably" is synonymous with "unlikely/ain't gonna happen" because on Saturday morning, the doc told us that he would never let a patient go home after a tracheostomy any earlier than 10 days after the operation. Best case scenario, he expected us to go home this Wednesday.

So they are basically just monitoring us now (Caro is stable) to ensure that we are comfortable with everything, despite our best efforts to prove that already. A quote from Angela on The Office comes to mind: "I love being judged. I feel that I can hold up under even the strictest scrutiny."

Except that we are getting tired of being judged. We are asked no less than eight times a day now by doctors and nurses alike, "so, do you feel comfortable with all of this equipment?"; "this is a lot of stuff, are you sure you understand?"; "I heard a report that you were overwhelmed by all of this, are you sure you can handle taking her home?"; "you understand the importance of the humidity, don't you?"; "can you suction her?"; "do you come from a medical background?"; you get the idea. We just want to take her home and it seems that unless we pass some unwritten, unspoken of test created in the minds of the practitioners here, we won't be able to. So that's my rant about that.

The silver lining in all of this is it allows us to have time to adjust to all of the changes that have occurred with Caro and become extremely comfortable and prepared for the new schedule of breathing treatments, oral medications, and everything else that goes along with having a trach and a child post-op coming home from the hospital (I counted six new prescriptions for meds that Caro will be on when we get home).

Hopefully we will be able to come home sometime this week (Wednesday is the day being mentioned most).


  1. Thanks Bryce for your detailed posts. Really appreciate them. Love the picture of Caro! What a beautiful child she is! Little bias here. Wow, that equipment is serious bulk and weight. I had no idea. I hope Caro can go home very soon and can get off the oxygen which would be one less thing to transport when transporting our little doll anywhere. Love Erika's posts too. I check this site every day and sometimes a couple of times a day. Great way to keep us all informed.

  2. Well I'm following all of your progress and I think all three of you are amazing. I can't really express what I feel when I read your posts.

    I read this book recently called "The Spirit Catches you and you Fall Down" by Anne Fadiman, and although it's a totally different situation, it deals a lot with the medical profession and miscommunication/attempts at communication between patient and doctor(s). It's about a Hmong family and their epileptic daughter, so again, different situation, but I thought it might be interesting in light of what you are all going through. Lots of similar aspects of their situations, and similar sentiments and problems actually. Like you'd have time to read it though, I bet.

    Well good luck and I'll keep up on your progress.


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