Thoughts on recovery variations among the kids

[Pooka1]

Lisa (Kitty) asked what people thought about the differing protocols and seemingly different recoveries of kids that she has read about on this group.

Here's my opinion.

I, too, was struck by the wide range of protocols and listed them out in a previous posts. Things like days in ICU, when allowed to drink, eat, etc. Most recently, it was whether or not kids even need to be restricted for several months.

While there is most certainly variation that is dictated by the individual case histories (lung function, etc.), the variation among the kids with no complications is so wide that it can only be explained by personal preference of the surgeon.

It's also the skill of the nursing staff... if high, the kids can get away with only a few hours in ICU. Things like that.

One thing that I think shouldn't vary so much perhaps is when kids are allowed to drink/eat. Our surgeon was VERY strict about not even allowing ice chips until the bowel sounds could be heard. As a result, my daughter had no problems with stomach distension or discomfort. She was home three days before she had a BM if I recall correctly (8 days post-op). There was not one word from the surgeon or nursing staff about needing to have a BM prior to discharge. If I didn't read about that in other testimonials I never would have known other surgeons require that.

As to all other matters, if there is one right answer on these things, it's not obvious from reading the testimonials what it is.

[Kitty]

Hi Sharon,
This is interesting. I also recall people expressing surprise some months ago when i informed all that the hospital had estimated approximately 2 weeks in hospital, thinking that was way too long!!

Re the ice cubes, Tahlia was given that in ICU to alleviate dry mouth but anything else was strictly forbidden. As for BM, Tahlia was expected to have a BM first before the catheter came out, when it was then a focus on bladder/urination. Everything has been done gradually and systematically, whereas from what i've read on the forum with surgeries in the US it appears that things have progressed much much faster. To be honest, as a parent I think I would have been extremely stressed seeing Tahlia go through all that so quickly.

Here is a quick run-down on how things have progressed with Tahlia:
Day 1 - surgery
Day 2 - ICU and removal of ventilator (physios start work on breathing and coughing)
Day 3 - ICU and insertion of chest tube (only due to lung collapse). Physio involvement with breathing and coughing only.
Day 4 - HDA . Physios ditto above. Just starting to eat, IV drips removed only when starting to eat and drink.
Day 5 - 10 (today) up to orthopaedic wards with continued emphasis on physio and sitting only when Tahlia is ready and breathing has improved. Gastric tubes removed only when Tahlia is eating and bowel sounds are heard. Catheter removed only when Tahlia passes first BM. PCA pump came out about Day 7 with continued oral meds as needed (hardly having any now).

Once she is better, only then does she progress to the next stage (rehab) by being transferred to Shenton Park (which is the rehabilitation campus of the hospital). We are nowhere near discharge because she has to go to rehab first and get a brace before she can go home. However, this has been delayed in our case becaue of air around her lung (pneumothorax) so they're keeping her on the wards for a couple of days longer to monitor this before they send her to Shenton Park.

So you can see my amazement at how different hospitals do things differently.

What do others think?

Lisa