At the beginning of October 2021 we had a long overdue face to face appointment with ENT. It was nearly a year later than originally planned due to covid restrictions and consequent patient backlogs.
Elis' sleep studies in 2020 showed that he had sleep apnoea and there had been no changes to his hearing loss in the last two years. ENT wanted to do a physical examination in person before confirming whether or not we should discuss operating.
His appointment went much as expected, his tonsils were enlarged and we agreed that it would help his breathing both at night and during the day (he is normally a mouth breather and struggles to breathe out of his nose at all) to have a tonsillectomy. While operating they would make the decision about his adenoids but it most likely he would have an adenoidectomy during surgery. We also agreed to give grommets in his ears one go - they are little tubes that are inserted into the ear drums to help drain the fluid that has been blocking his ears and causing his glue ear and subsequently hearing loss.
Hearing aids were working well for him so we wouldn't have opted for grommets if it weren't for the fact that he'd be sleeping anyway and they can do it in one go. Grommets can have a tendency of falling out early in kids with achondroplasia from what I've heard so we will only be giving this one shot. We knew we could always go back to aids if need be.
**********************
Elis' operation date was the 24th of November. In the run up we were sent information booklets about what to expect during his/our stay at hospital. There were a few video links although one in particular that Elis enjoyed watching before which seemed to prepare him really well for what lay ahead. The video is filmed from a child's perspective and leads you through the different stages before and after the operation as well as introduces you to the different staff members you'd typically meet from nurse and paediatrician to anaesthesiologist and surgeon. If you click HERE it'll take you to the link (Elis didn't get taken to the theatre in the cool car unfortunately).
Two days before we headed in Elis had to have a PCR test done at a test centre to make sure he didn't have COVID pre op. I had been quite worried as the girls have been awful when I done LFTs on them but he was a true champ as always and didn't bat an eyelid. We got the all clear and could head in for his operation as planned two days later.
He'd been called in to the hospital for midday and we'd been told he had to not eat any solids after 7am, he was allowed to drink water up until we arrived at hospital then he had to fast completely. His older sisters were at school and we had organised for them to go to a friend's house after school but his baby sister wasn't allowed on the ward so my husband (who'd taken the day off) came with us to the hospital to drop us off. Then he went for a walk around Dundee with her, bearing in mind she was about 9months old and still mainly breastfed so needed to be in fairly close proximity to me.
Elis and I headed in on the ward and had a kind welcome from all the staff. We were lucky as we were first on the list so almost immediately we had the nurse putting on the numbing gel on both his hands to prep them for the cannula at the same time as the surgeon popped over to go over risks of surgery (hate this bit as even though I knew statistics were on our side it's still daunting when you hear the risks of bleeding - and one I hadn't been told of earlier which was that sometimes the teeth and or jaw sustain injury due to the clamp they use to open up their mouths). Back to the gel and plasters, he hates stickers on him and he was NOT happy about these being on and complained multiple times. Thankfully the anaesthesiologist was over quickly and suggested we head to the play room to distract him so he could talk to me. He checked Elis' weight as this is how they determine the right dosage to put you to sleep. Then we had a wee chat and he noted that Elis had a bit of a sniffle but as I explained Elis pretty much has a constant one and that I felt he was in good form otherwise. The anaesthesiologist agreed that he was happy to go ahead, he did say that he would normally prefer less of a sniffle but he also knew that this probably was as good as it would get and that it was more important for Elis' well being to have the procedure done. He did mention that the achondroplasia could cause complications and that it wasn't uncommon that the waking up takes longer if you have dwarfism.
After his visit we had a play therapist come and explain the insertion of the cannula to Elis - we had watched it plenty in the video but her talking to him just reminded him of the tape he hated so much. Elis was starting to complain about hunger at this point so I checked how long we had left and was very grateful we were first in line as they were all just doing the final prep. He got given oral medication to make him a bit more drowsy which was just as well as it made him forget his hands annoying him for a bit. The play therapist came over with a tablet and found him some fire engines (favourite thing ever) to watch while he was rolled in to the theatre and so that he couldn't see them insert the cannula. I got to sit with him until he was out and then I had to leave him.
I was told he should be done within an hour so I headed out for some fresh air and had an awful and over priced sandwich as my husband was still out walking about. Then I went back down to the ward, I didn't have to wait too long before the surgeon popped out to say they were done and that everything had gone perfectly to plan. Tonsils and adenoids had both been removed and grommets inserted, he was just in the "recovery room" waiting to wake up. It felt like an eternity before he was rolled out, in fact they came to tell me at one point that he had just been taking a long time to come too. When they rolled him out he was screaming and writhing about in some state. He'd apparently woken up and tried to climb off the bed which prompted them to bring him back out to me.
He must've been too drugged to fully comprehend that I was there though as he just kept wailing and asking for me despite being in my arms. I have to admit it broke my heart seeing him so distraught. He was also very, very upset about the cannula and kept clawing away at it in agony. Now I hate having cannulas in myself and usually beg to have them removed so I totally understand how he felt. He was given medication to calm him down and help the pain but every time he touched the cannula or so much as looked at it he would go into a fit. I kept asking staff to remove it, I understood why they wanted it as a precaution but personally I felt they could put a new one in his other hand if he needed rolled back into theatre but that the screaming he was doing wasn't going to help his recovery in the slightest.
We spent a couple of hours in limbo, him crying or being in a lucid sleep. He was attached to me like a limpet and any time I moved it would set him off. I won't lie, it was one of the most draining experiences because I couldn't do anything but hold him and wait it out in the knowledge he'd not remember it later. I got a message from my husband that they were back and that Elis' baby sister was now screaming for food. I managed to slide out from under Elis without waking him as if he knew this was necessary and my husband and I did a swap over at the ward doors. I needed to head home to collect the older two but I didn't want Elis to think I had abandoned him since he was so upset before. I fed his sister in the car and then headed back to the ward, in the time I'd been gone Elis had woken up and was stuffing his face with the food and chocolate that had been left for him by the hospital staff. He couldn't have been a more different boy than the one I left! It was such a relief to see him in better spirits.
He had requested I stay the night with him (he would need a sleep study machine attached to him over night to check his oxygen levels but they'd also have wanted him to stay purely due to how far we live from hospital) unfortunately I couldn't stay with him as they wouldn't allow his baby sister on the night ward either and she feeds regularly at night so my husband was spending the night. To be honest at that point I think I needed the swap over because I was so beat emotionally. So I headed up the road and spent the night with my 3 girls.
My husband and Elis shared a ward room with 3 others and it seemed to be a restless night for both. The sleep study machine beeped loads as Elis kept removing the probe. In the end they were happy enough with his levels to just turn it off. Elis apparently woke up crazy early and started running circles around the ward so he was definitely feeling better. I drove down to Dundee (which is an hour from our house) as soon as I'd put the girls on their school bus. Once again we swapped at the wards doors, Elis had been shown the play room by the play therapist we'd met yesterday. The lucky kid had the WHOLE room to himself, and it was a BIG room full of ALL the toys. He barely even acknowledged me as he was so busy playing. We eventually managed to get discharged, it had taken a while as we were waiting on all the medication he would need post op. Mostly paracetamol and ibuprofen in high doses but even a very small amount of morphine for days 3-5 or so as those are apparently the sorest although we were advised to administer the medication for a full 10days to ensure he wasn't bothered. It's really important to keep drinking and eating after a tonsillectomy so that the wound is kept clean.
We headed home with him and he was in great spirits although tired for the coming couple of days. The evening after we had a power cut due to Storm Arwen hitting Scotland and we were without power for 64 hours, we also had snow and freezing temperatures so it was not an ideal set up for operation recovery. By day 3 we weren't managing to get him to take any of his medication unless forcefully held down - prior to that we'd been bribing him with chocolates and sweets after every syringe but he wasn't even accepting those at this point. He became lethargic and was throwing up (we felt it was due to mucus build up although nausea was listed as a side effect of both the meds and operation), he barely drank, definitely wouldn't eat and mostly slept.
Hours before our electricity came back I was on the phone to the hospital, ready to take him to A&E as I was so concerned. They felt that this didn't have anything to do with his operation and that I should treat it as a stomach bug. They just recommended stopping the meds (he wasn't crying in pain even without them) and focusing on getting him hydrated again. I didn't think he had a stomach bug but did know he needed fluids so I focused on that and he did perk up slowly as I got sugars into him. It took another couple of days before he accepted food but he was at least drinking. Exactly a week after he'd been discharged we did LFTs as my husband and I both felt very ill. We both came back as positive for covid (which is another post in itself) and shortly after it was confirmed that Elis also was positive which made a lot more sense with how awful he'd felt. Elis quickly recovered after that and has since slept so much better and his breathing as been hugely improved both while awake and asleep. His hearing has also been so much better which has been noticeable by all the new words and sounds he's learnt in the last 2.5 months. It was 100% worth it having the operation despite the awful recovery week after which made me nearly regret it all until I realised it was Covid making it worse.
Comments
Post a Comment