Embolisation Reloaded

Good evening everyone,

It’s been a pretty quiet weekend, nevertheless I have much to report. On Friday my paediatrician decided to intubate me again, so I’ve been on a ventilator since then. The reason for this is to give my little body a bit of a rest. Without being on the ventilator I really struggle to breath and my little heart works overtime. It is for this reason that I’m not putting on weight even though I’m on a pretty hefty diet of 65ml of breast milk every three hours with some added supplements to bulk me up. Basically I’m fulfilling the typical laws of physics: energy output cannot exceed energy input! Because my energy output is so high, i.e. my heart and lungs working overtime and burning excessive calories, none of the calories stay behind to be converted into weight to bulk me up.

Secondly, after some CT & chest scans in the latter part of last week it was discovered that I had suffered from partial atelectasis, which, put simply, means lung collapse. This is as a result of my being permanently on my back, and the fact that I’m recruiting a great deal of my lung capacity to sustain my heart’s zest for vigour. There was a concern that I also had pneumonia, but this has since been dispelled. Owing to the atelectasis, I am more prone to pneumonia, subsequently I am on some antibiotics to avert this additional complication.

Thirdly, my liver function seems to be settling, which is absolutely wonderful news. My alpha fetoprotein (AFP) count has been in excess of 359 000 µg (micrograms) per litre. The reference rate is around 28 µg per litre, which means mine is significantly higher than what it should be. It is thought that the high reading of AFP has been as a result of my liver regenerating from the many numbers of drugs and chemicals that I’ve had to endure over the past few weeks.

Lastly, and most significantly, I have been tentatively booked for another embolisation on Wednesday this week. I’m being monitored very closely to confirm that I am clinically stable, thereby ensuring my prospect of undergoing this next procedure. You may all recall that this next embolisation was only going to take place much later on, typically when I reached six months of age. However, given that my heart and lungs are under such strain, and that as a result I’m not picking up much needed weight, it was considered prudent to bring this procedure forward by a good few months.

In order to undergo this next embolisation, I will need to be transported via ambulance back to Unitas in Centurion (for the international readers, this is about 50 km North from where I am now, and is close to Pretoria, the administrative capital of our country). In preparation of this transfer to Unitas and my embolisation, my Dad has been busily phoning and arranging authorisations and pre-admissions to ensure everything goes smoothly. Fortunately, like most service industries, the hospitals’ administrations and the medical aids operate 24/7, allowing Dad to do all the calls etc. from the comfort of his study on a Sunday afternoon. Viva 24/7!! He also discovered that the hospitals do pre-admission online, and as you all know, my Dad is ecstatic about online capture at source technologies. Viva the Internet!! Thankfully, its because of all the technological advancements that my prognosis is so good, and that I’ll soon be well enough to go home.

On the home front, Mom has returned to work to ‘save’ her maternity leave for when I do go home. In that way Mom can spend a number of months at home with me. I’ve heard that my room is being well looked after and is kept sparkling clean for my big day. Regardless of this, I have heard that kitties of the likes of Shatzi and Sonic occasionally spend a morning snoozing in there, and Maple wonders in every so often to give his approval of the situation. Aside from this, I’m really sad that Mom is back at work, as my folks can therefore only visit me in the evenings. I can sense how exhausted they are from all the stress I’m putting them through, and the travel back and forth from home to the hospital, but regardless, they spend a number of hours with me each evening, and they remain strong and cheery. I look so forward to their visits, and now that they’re less frequent, we’re working on more ‘quality time’. I still get visits every other day from my Granny and my Opa; unfortunately my Oma cannot see me during the week as she is really drained and weak from the chemo. She did however visit me today with Opa, which was really awesome again. Because I’m intubated I cannot be picked up; but my Mom, Dad, Opa, Oma and Granny nevertheless rub my tummy or hold my hand, or read or talk to me.

Yesterday, while Mom and Dad visited, I had to be suctioned, as much mucous and gunk builds up in my airways from the tubes in my throat. Although it makes me feel much better, the process is really uncomfortable and sore, and I actually shed my first tear. My Mom and Dad were so distressed about my anguish, but at the same time enormously elated at the sight of a tear. I think for them it must really be strange to feel two dichotomous feelings simultaneously: distress and joy.

For the times that I don’t have visitors my Dad has hooked up a sound system over my crib that plays lullabies or my favourite classical music. I overhead that he is going to leave one of his iPod’s here for me, with podcasts of the latest happenings at NASA and interesting articles from New Scientist and National Geographic.

Well, that’s about it for tonight. My Dad is itching to go home so I will need to relinquish the laptop. Please keep me in your thoughts and prayers, send me guardians and angels to look over me, not only during my procedure on Wednesday, but also during my transfer to Unitas. As it is not yet 100% confirmed that I will undergo another procedure this week, I will post an update on Tuesday for your benefit.

Love,

Jarrod

Figure 1 Aunty Gillian and Uncle Oliver sent me the closet little slippers from Minnesota – now I’m really determined to get better so that I can walk around in them

Figure 2 Footloose

Figure 3 Cuddlebunnies

Figure 4 Tubed and Dripped (again)

Figure 5 In the words of The Simple Minds’ song from the Breakfast Club “Don’t You Forget About Me”

Tags: Dad, embolisation, liver, Mom, Oma, Opa, paediatrician, Unitas