Although everything has been going along “routine”, Levi has still felt the need for just a little bit of excitement. It is becoming more and more apparent everyday that he is just not feeling great. His party gene has taken a bit of a back seat for most of the day and he occasionally gets a sudden burst of energy which is fleeting at best. As with all boys, when he gets sick, he is really sick and there is a craving for attention and focus on him. As a result there is little time for anything else and managing to get a break to grab some water is like wrestling with a crocodile with a pen knife. And needless to say, it is not a knife that works in this situation. So, feeling that Jayde needed a well earned break away from Levi, myself and more importantly the hospital I sent her away to the northern beaches on Wednesday. It was to be 24 hours of excitement, Levi juggling, and apparently, normal responses to the assortment of drugs that he is currently.
A bit of a background first leading into the excitement that was to be the next 24 hours. Levi’s music therapists noted my distinct fat fingers as I was attempting to play “I’m a little teapot” on Levi’s loan ukulele and decided to lend me one of their classic guitars last Thursday. As a result of many hours of practice over the weekend, I am feeling that I really enjoy plucking strings on the guitar which at the moment is literally all I am doing so I took a walk down to Coogee SunBurst music to check out their range of guitars and see what was available once we left hospital. It was one of the most surreal, and coolest experiences that I have ever had in a music store. Granted that I have not actually had many music store experiences, I will let you judge.
I walked into the store with Jude and was greeted by Doug, the proprietor. I told him my story and how much Levi is loving the music side of hospital and that I am in a bit of a pickle for when we leave hospital as I will be giving back the loan guitar and have a limited budget. Well, Doug looked at me with a big smile as his eyes peered out from under his straw cowboy hat and said, “have I got the perfect guitar for you, follow me out the back”. I was intrigued. Unable to wheel Jude any further than the front door, I asked if he was ok to be left at the counter, Doug told me that it wouldn’t be a problem and I reluctantly walked out the back. Our discussion started with a brief history of the guitar that he had picked out for me and then Doug gave me a demonstration of its capabilities. I am not sure what I was more impressed about, the sound or the longing to be able to play as well as what he could. As the guitar was thrust into my hand, I was then given a 10 minutes one on one lesson on the basics of guitar playing (as I was clearing lacking this). Feeling compelled to ensure that my second born was still safe, I ended our lesson and went back to Jude only to find the shop assistants playing sweet lullabies on some ukuleles as Jude was smiling and rocking out to their soft jams.
As the afternoon progressed, Jayde made a bolt for the northern beaches with Jude and then there were two. Levi managed to get a full service as the night wore on. NG repositioned, central line dressing changed and an evening bath accompanied by some low level mood lighting and Sarah McLachlan playing in the background. Yet still he was wired for sound and unwilling to relent to the sandman before a late 9:30pm. All was well with only the occasional da-da through the night…. Then 2:30am come round.
I was woken by Levi sitting bolt upright and coughing! I knew this could only mean one thing. With sick bag in hand I lunged across the room, failing to catch the vomit that projectiled down the bed. Now for any one that has ever smelt PeptiJunior formula, it doesn’t smell great on the way down, so coming at you from a child’s mouth, let just say, not pleasant. Then Levi decided to stop breathing as he choked on the by products of mucositis. As I patted him on the back I was torn between reassuring him to keep breathing and waiting for a nurse to respond to the call button or lunging for the emergency call button. Anyone that has a choking child will know that look that they get in their eyes when the most basic of instincts fail them. Fortunately, as I was literally an inch from hitting the emergency call button I was hit with a flood of relief as I heard the familiar gasp of air filling his lungs. A quick sheet change and clothing change, Levi fell asleep on me within 20 minutes, unfortunately it took a lot longer for my adrenaline to subside.
Feeling as though I had been side swiped by a b-double and then cleaned up by a road train, the sun was up and this meant the entourage of doctors, specialists and nurses was to begin. But Levi beat them to it as he finally had a bowel movement. I have never been so happy to see a number three as he had been holding this for close to 48 hours, which is not good for a normal person let alone someone with no immune system. So Levi started the day with another bath, mood lighting, but no Sarah McLachlan, I was lucky to now smell like spoilt Peptijunior formula and essence of chemically tainted toddler poo. It was turning out to be the start of a great day.
Sleep was going to be a luxury today. Levi felt the same as he played with his trains, watched movie after movie, coloured in his books, and hounded dad for cuddles. It was when I was given a brief respite by our ward friend that I was able to grab a shower, well actually she took one look at me and sent me to the shower.
By the time Jayde got back, Levi was extremely perky, a hell of a lot lighter and looking like his was ready to play. Me on the other hand, looked like death warmed up. Thursday night followed the previous night, though this time, I was a little bit nimbler to dodge the projectile vomit and managed to save the majority of Levi’s bedding. It was also a “poo smear free zone” which was even better for my mental health. Though the choking still threw me but I was better prepared to handle it than the night before. Nighttime is bringing a very cuddly boy who demands me to sleep next to him, so I fear that I am creating a monster with a very hard habit to break when we get home. As his white cells continue to climb in a steady trend we are resisting the urge to become to excited as the more important neutrophil have not made any movement which is the true sign of engraftment.