Yes, I've been away for a while. Not on some fabulous trip unfortunately, but the past few months I've been away from the blog have been bookended by two attempts at a family vacation - the latter finally being successful.
Going on "vacation" (in quotes because I am using the term very loosley!) with a medically fragile child is no small feat. Some may even call us crazy to attempt it as much as we do. The last successful trip - meaning Ella did not get sick during or immediately following - was in April earlier this year. We literally packed the car, picked her up from the hospital where she was ending a two-week stay and headed down to my family's place at the beach. We figured coming off of an illness was a good time to go for it since we typically get a break for a month or two between hospitalizations. It worked!
Now, packing for a medically fragile child is nothing short of ridiculous. There are trach supplies, feeding supplies, medicines, equipment for providing heat and humidification at night, oxygen tanks, etc. The list seems endless and it has taken me up to 3 hours to pack her up to go somewhere. So to say we have to be really committed to take a trip is an understatement!
Besides the packing, we leave behind our nurses who assist us in caring for Ella at home. This is the main reason I use the word "vacation" so loosely because we actually get less rest and time off from her care than if we were to stay at home.
To give you an idea, a typical day with Ella starts with getting her up out of bed and dressed. Sounds normal enough, right? First there is the suctioning which I have mentioned before and again, will spare you the details. Suffice it to say it's not a pleasant task and she can be quite "junky" in the mornings. She needs to be removed off her nighttime equipment, a heated trach collar, which includes a heater, air compressor and sometimes O2. Trach care must also be performed, and then we can move on to more typical things like picking out a cute outfit and matching bow and fixing her hair. But then it's time to move her and her equipment (pulse ox, feeding pump) downstairs and do her nebulizer and chest physio-therapy treatments. Once that's done, it's time for morning meds (I think we're at a total of nine right now including her inhalers). She is usually ready for a nap mid-morning which works out well because we are, of course, also exhausted by this point!
At 11 a.m. it's time for her first bolus feed - this includes preparing the formula, priming and setting the feeding pump, turning off the pump, flushing the feeding tube, etc. She has two additional feeds during the day at 3 p.m. and 7 p.m. At some point we'll get a bath in followed by another trach care session, nebulizer and chest PT, and at 9 o'clock it's time for nighttime meds (a total of 10). Soon after it's time to put her back to bed - take her and her equipment back upstairs, set her nighttime feed, put her back on heated trach collar, etc. Then pray she sleeps all night which unfortunatley has become a more rare occasion lately.
Are YOU tired yet?! So you get the idea...
We had a foiled attempt at "vacation" in June of this year due to the oil spill since it wasn't a good idea to take a trached child to the shore where the air was filled with fumes and such. But by Labor Day we felt conditions had improved enough to try again. So we did. After packing, driving 6+ hours and spending one night, we woke up with a very, very sick child and were forced to retreat back to our home-base hospital where she spent the next two weeks fighting pnuemonia.
Typically, if Ella gets sick it follows a trip which isn't "good" but at least we are home or on our way home. This time, we hadn't even started our vacation and after all that planning and preparing, we had to pack it in and head home - one of my worst fears come true! And it was pretty depressing sitting in ICU with your child instead of at the beach, but this is our life.
Recently we found it within ourselves to try again and I am happy to report all went smoothly!
But no, "vacations" at this stage are not very relaxing for us, however the opportunity to be with family, smell the ocean air, eat some delicious seafood and just get away from appointments and work for a bit certainly evens things out.
