This week, my mom and I traveled with Abram to go for his 2+ year follow-up with Nephrology for his Renal Fusion, also known as a horseshoe kidney. I always try to make the most of our little medical trips and book a room at a hotel with a pool so Abram can at least have a good time, swim and enjoy a meal out with us.
The drive to the University Hospital is about 3 hours from where we live and Abram's tolerance to long car rides is pretty slim. Especially since he officially broke his portable DVD player we purchased last summer for our long trek to Colorado to get his medicine. We got a decent hotel rate and stayed at a newer hotel (vs the old "renaissance themed" hotel that usually has someone's old band-aids floating around in it) so Abram could swim and enjoy the hot tub before we went out for dinner. It's always hard picking a place to go so we ended up picking a "higher end" Italian-American Restaurant. In hindsight, I should have known better when multiple reviews said the food was "ok". Poor Abram ended up getting sick there. I should have known something was up when he pushed his food away and started crying. He RARELY cries unless he's really in pain and he has an incredibly high tolerance for pain. I went to hug him and before I knew it - he'd barfed down my entire front and it was pooled in my arm. All they had for napkins was the nice white cloth ones and the sweet waitress ran over to help (shared with my mom that this happens all the time at the bar she works at) and didn't skip a beat as I piled vomit covered napkins onto Abe's plates. I was trying to get it off of me before I ran to the door but I couldn't get up until I had at least cleaned myself up - or it would have gotten EVERYWHERE but of course - Abram starts doing projectile vomiting in the booth. I try to catch most of it in the napkin but he was pretty much covered, the people around us were groaning and I couldn't get out of there faster. I was mortified. I had to walk him out past a patio of customers as well who all stared and to whom I proclaimed "DO NOT EAT THE CHEESEBURGER!" I had to strip the poor kid down to his diaper to get him in the car and I just had to suffer - soaked in puke - until we got back to the hotel - which happened to have a cupcake shop underneath. I told myself I deserved a cupcake - so I walked in with my mostly naked toddler, covered in vomit and order myself a Chocolate Carmel Coffee Cupcake. Luckily, there weren't really any customers to have to see us. The woman by the elevator definitely did a double take at us and had to sit near us the next morning when the "poo incident" happened. The next morning, we needed to get Abram to drink a lot of water so he could get his ultrasound and so the Nephrologist could get a urine sample. We go down to their free breakfast and got him to drink some water and eat a little breakfast. He flirted with the waitress/hostess lady like usual (he is a ladies man, for sure) and as I get him out of their fancy chair - realize that he's had the up the back poop explosion and not only did it come out both sides of the diaper in the back, but up the back of the shorts and half-way up his back inside his super cute new outfit that probably is 100% destroyed now. Yuck. What a mess. The positive? The shirt at least kept the poo off the fancy chair. The actual Nephrology appointment went about as smoothly. We waited forever for someone to announce themselves a Medical Assistant and proclaim that they would be putting the urine collection bag only for her to disappear and not come back. The Ultrasound Tech was crabby about it when I told her they needed a urine sample and she made some crap comment about how she needed the bladder to be full to get the ultrasound. Yes, we know that. But Abram has NO CONTROL over when he pees. It only made sense to get it on before she pushed him around on the guts for his kidney scan. So half-way through - another nurse interrupts the ultrasound to tell the tech that they need a urine bag on him and that the Medical Assistant would be in afterwards to put it on. The ultrasound was taking a while, Abram was screaming his head off because sensory-wise he can't handle the feeling of that gel and being pushed around on and instead of being kind and calming - the tech just squirted more gel on him without warning him and sent him into another bout of screaming after he had just gotten calmed back down. People think I'm over exaggerating when I say he is a fighter but for blood draws/EEGs, etc it takes at least 3-5 people (in addition to me) to get him restrained enough to do a procedure and/or prevent him from hurting himself! I was so irritated. I don't get people who are in the medical profession who have no compassion or empathy for those they have to deal with. He was the FIRST appointment of the day - she should have still have some patience left before 8:30 am. Anyhow - we wait forever for the Medical Assistant to put the urine bag on - and she never does show up. She interrupted the ultrasound about it - but couldn't bother to wait? We had arranged ahead of time that he would need this as he just can't give a urine sample like an adult. We finally get to Nephrology and they tell us that they need us to go to the lab for blood and urine. I remind them again - we have yet to get the urine bag actually ON and they say the lab has it. We get to the lab - and there was NO urine bag. We get escorted back to the appointment rooms and still - no urine bag. When the Medical Assistant chick finally shows up I am already very frustrated and it's already been 90 minutes since we arrived and Abe has officially lost his sample to his diaper. She missed her opportunity for pee, did a terrible job checking his blood pressure (where he also screams so loud he dry heaves and often will vomit) and then promptly FORGOT to put the Urine bag on. Seriously? I had to tell her " you still haven't put the urine collection bag on, yet" and had to help her put it on as she tried to put the sticky part right on Abe's parts that shouldn't have sticky tape. She also tells me to put him on the table and without warning me (or him), has the table move up off the ground with a remote control. My son could have fallen and hurt himself as it startled him pretty badly. Good grief. By the time the doctor came in, I was annoyed. We had to go through all of our medical history (3) times: once with the assistant, once with the intern and once with the Doctor where they proclaim that they have to REDO the blood pressure because it was high. "Well, he has major sensory issues and NO ONE takes his blood pressure anymore because they never get an accurate reading from the cuff. He screams, cries and dry heaves so of course it is going to be high. Other specialists use the one where they get the reading from his toe." But they proceed on to make my child scream and dry heave and finally decide that mom was right - they couldn't get a reading. Then Ms. Medical Assistant comes back demanding for me to check for a urine sample and seemed disgusted that there wasn't one and I make a snide comment about how he's only had it on for like 3 minutes. I share with the Nephrologist my frustrations as they seemed pretty adamant on the phone that they needed a urine sample and made arrangements days before to have things ready for when we got there. I am more than able to put a darn urine collection bag on myself. It was important enough to make a phone call about, interrupt the ultrasound for but inevitably to not actually collect and obtain said urine sample. In the end - we got great news. His kidney looks fine for renal fusion, is operating fine and we don't have to go back for another 3+ years which was good news for me. The bad news, Abram lost all that water we had given him at a restaurant on the way home during lunch and peed through the last of the (4) pairs of shorts I had packed. So that friends, is a LOT of pee, vomit and poo to happen in less than 48 hours but just a taste of what it's like to have endless appointments and the now occasional bad experience in a doctor's office. The positive here is that we leave each appointment these days with good news and we keep just getting positive reports. I'll take all the gross body fluids for good doctor's reports any day but it sure makes for a good story. |
About MeHello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis. MOST POPULAR BlOG ENTRYJOIN US
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