PICU, Day #19 – Unchartered Territory

When I woke up this morning, the plan was for Dr. Albright, Dr. Roy’s partner, to do the trach late in the afternoon.  Hannah would also get a gastric tube as well to help with the feedings, and Pediatric Surgery would do that.

I came down around 8 am, and Hannah’s room was completely empty and being scrubbed down by the cleaning staff.  My heart skipped quite a few beats!  I asked the nurse where she was and apparently she was downstairs getting an Upper GI series to make sure her GI tract was clear for the Gtube.  Nice of them to let me know!  Apparently, they did not expect to have to “rush” to do the Gtube today (as it usually is about 3 days or so after it is decided upon – and it was decided upon yesterday when she failed extubation), so they wanted to make sure the upper GI was done.

Around noon, the residents and fellows were asking me for Dr. Roy’s office number because they wanted to get information on what lab tests Hannah needed and to find out timing and everything for Dr. Albright’s surgery.

Around 1 pm, Dr. Roy calls me on my cell and tells me he is coming over to TCH to do Hannah’s surgery himself.   I handed my phone off to the fellow, and I could tell by the look on her face it was almost disbelief.  Apparently, Dr. Roy was coming over in 30 minutes from his phone call to do Hannah’s surgery!  it was a rush to get a Pedi surgeon available, and the fellow even warned me that there was a chance that they may not be able to do the Gtube at the same time because of Dr. Roy’s short notice.    Even one of the surgery residents came in and said basically “we are going to try our best to accommodate this, but we cannot guarantee it.”   Sure enough, they found the surgeon who was going to do it later that afternoon, and she was free so she was able to do the Gtube at the same time.

About 10 minutes later, I had surgical nurses, anesthesiologists, and other surgery-related people coming in and asking me questions, taking a look at Hannah, and getting all the portable gear ready for transport.

Dr. Roy showed up and got everything moving pretty quickly.   Even though I was a nervous the entire time, Dr. Roy’s part of the surgery only lasted less than an hour.  He came out to the waiting room, said she did just fine, and gave me a description of what I would be seeing.  I had asked him why he was doing the surgery instead of Dr. Albright, and he mentioned that Dr. Albright was not able to do it this afternoon.  I don’t know how Dr. Roy was able to get an opening in his busy schedule, but I am so dang thankful that he did because this way Hannah did not have to wait until Monday!

Then I waited for the Pedi surgeons to do their work.  Hannah ended up coming back to her room in the PICU, and the first thing I saw was her face.  I saw her lips, her nose, and her cheeks.  Even though I also saw the trach and its accompaniments, I got to see Hannah’s face after 2-1/2 weeks, and it made everything okay.  I missed seeing her beautiful, beautiful face!

She had her gastric tube in place, and she also had about an inch-long incision nearby the Gtube.  Finding out why that was there took about 8 hours, but we later found it was because they did not do her Gtube laparoscopically, but they did an actual incision instead.  I never did see the surgeons who worked on Hannah (unlike Dr. Roy who came out after), so I never had the opportunity to ask them what the incision was for and, now that I know what it was for, what were the reasons they did it that way?  My guess is her enlarged spleen, perhaps?  But I don’t know.

Dr. Roy called later this evening to check on her and see how she was doing.  She is on a paralytic drip and more sedation meds (argh….).  But for now, she has to be paralyzed and completely sedated as to let the trach settle and heal.  Unlike her gastric tube which is sutured in her body, the trach is a freestanding hole so it needs more precautions as it heals — as the sign on her crib says, “fresh trach precautions.”

It is over and done now.  Hannah has a trach and a Gtube.    We have now gone into the world of the medically fragile child instead of one with just special needs.  Our family has a LOT to learn in terms of how to care for Hannah, not only in terms of  how to deal with the trach, but also in terms of what limitations having a trach has for her (no more hydrotherapy, so sad!).

Tomorrow is another day.  I really am looking forward to getting her weaned off all this crap as soon as we can.  That is really the MAIN reason I am so glad that Dr. Roy did this today instead of waiting 3 more days through the weekend.

One more positive thing, we are now one step closer to getting to Las Vegas.  In a few days (probably Monday), we will have a better idea of when Hannah can be transferred to finish her recovery at Sunrise Children’s Hospital in Las Vegas.  I’m not sure who makes that decision — Dr. Roy or the PICU team, but I know that between the two of them, we will get it figured out!