Well it has been quite a few days since Craig and I have blogged. We blame it on the sheer craziness of the last week. I will try and continue where I left off however.... the tube.
So all of Monday night, Nevan was restless and worried about having this tube inserted. I have to say we were as anxious as he was. But as usual, when you think you can't handle any more, in walks one of the amazing staff to comfort us. Maria is a Child Life worker who's job it is to cheer up the kids and ease their fears about all the things they will be experiencing, however I think most parents in this ward will agree when I say that she does an equally amazing job at calming the parents at the same time. Shortly before Nevan was to receive his Nasal Gastric Tube, Maria came in with a doll, some tubes, a syringe and some colored water. She started by explaining that getting the tube is not because Nevan did anything wrong, or because he didn't take his meds, it was just an option to help him not to have to do the thing he hates doing and keep as many happy moments in his day as possible. She then poked 2 holes for nostrils in this doll and fed a tube through 'into it's stomach'. Nevan then proceeded to use the syringe to feed his doll colored water into its feeding tube for almost 45min. He was having a ball and calmed right down.
Time for the tube. I requested that the team give Nevan an Ativan to calm him further and then Craig and I left the room. We couldn't bare to watch this being done. We walked out of the room with Nevan screaming, but he stopped before we took more than 5 steps. We took a very short walk and came back... The tube was in, Nevan was sitting up watching spiderman and we were all so relieved. He didn't want to talk or eat, but didn't seem bothered by it too much.... Exhale....
Our full intentions were to use the tube for medication purposes only, but the dietitian started him on feeds as well. The feeds, plus eating, plus drinking proved to be too much for little Nevan's stomach and he vomited everything up including the tube only a few short hours after having it inserted!
I asked them to give him a break for the night and re-insert in the morning. They did, and this time we insisted he not be fed through the tube. Nevan tolerated it for a little while longer, but vomited it up once again. It broke our hearts put him through it again so back to negotiating meds. If Nevan could show that he could take his meds, they would send us home. Nevan was excited about this and took his meds In front of all the nurses. They discharged us a few hours later.
Don't get me wrong, Nevan was not the only one excited about this, Craig and I were too. We were anticipating this moment for so long but when it finally came, we didn't feel as happy or relieved as we thought we would. Nevan was in such good hands at the hospital and seemed too fragile to have his care be handed over to us! We would now be his primary care givers and that was petrifying!
We both started preparing by putting together routines, charts, binders, day timers etc. We needed things to get back to Normal.... We just had to figure out what that 'new normal' looked like. Our typical days will now be filled with meds at wake up, breakfast, lunch, dinner and bedtime. Temps need to be monitored every couple of hours and food and fluids logged right down to a single Cheerio. We had to monitor Nevan for rashes, increased bruising and check his PICC line every day. Hands need to be washed constantly and all countertops, door handles, taps, light switches, banisters etc, wiped down with antibacterial cloths daily. "Pee pots", masks, throw up bins and gloves are strategically placed all over the house. Laundry is done constantly to ensure blankies and favorite stuffed toys stay clean. Anything that leaves the house is immediately washed before it is put to use in the house. Just to top up our stress, and almost as some kind of cruel joke, Nylah has developed a very bad cough and cold with fevers on and off. How are we going to keep her away from her 'wa wa' whom she hadnt played with in weeks?
When we walked in the house, there were balloons and streamers everywhere, care of Nana and Nanima. They were the only ones there to celebrate Nevan's home coming as visitors are restricted to 1-2 maximum at a time. Nevan was exhausted and on his last leg at this point but showed some excitement for his animals and his new room. He also insisted that I make him macaroni and cheese for dinner, so that's what I did.
No sooner did we sit down for dinner that I noticed Nevan was developing a rash all over his face. The night went down hill from there. Immediately I called the pediatric Oncologist on call to report his rash. She said to monitor it closely and check for fever and call her back. Thankfully the rash went down over the hour and no fever came on. Nevan was fighting his exhaustion however and his mood just sank. He refused to take his meds again and there was no convincing him. First dose of at home treatment missed. We gave Nevan his first bath in almost 3 weeks and put him to bed. I laid down on an air mattress beside him and our eventful night began. Nylah woke up 3 times coughing and throwing up. Nevan woke up 4 times to use the bathroom and request a midnight snack of sliced cheese. We woke up at our usual 7:00am prepared to take Nevan back to the hospital to make another attempt at the NG tube, except in some sort of sanity restoring miracle, Nevan took his meds no problem! We were so happy and decided not to head to the hospital, but a little while later our problems went from how to get Nevan to take his meds, to how to keep them down! Nevan began vomiting everything he Ingested including his meds. He also developed a tummy ache.
Care for Nylah was arranged and we headed to emerg. We were triaged into isolation right away and Nevan was immediately given fluids to help with his dehydration and gravol for nausea. Instead of putting a tube in again for fear that he would throw it up at home, they gave him an alternative to his prednisone that tasted much better. We were sent home a few hours later and asked to come back first thing in the morning for blood counts and his first clinic day. We drove the 45 minutes home, happy to sleep in our own beds and ready to do it again in the morning.
Cute story of the Day:
Randome statements from Nevan coming out of sedation...
"Mommy, can I have an octopus cake for my birthday tomorrow?" (his birthday is in November).
"Mommy, I miss your grandparents" (Nevan has never met my grandparents)
"Mommy, your so pretty... But don't tell daddy, it's a secret!"
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