Oh dear! What a day. I honestly did not want to write a word today because I have had one of those days. But who doesn’t? So in my usual practice what you preach kind of way, I decided to soldier on, pull myself up and drop a line.
I had series of meetings with different doctors today regarding the best course of action to move my son’s treatment forward. Honestly I felt like all my pleas to go in a different direction were just falling on deaf ears. I guess it is also a dilemma for the doctors too. At the end of the day they also wanted what was best for my boy. It’s just that I was not seeing any sense in their argument.
Fred has suffered with acute and chronic Pancreatitis for a few months now. In fact that was the primary reason for this admission. Unfortunately, in the mean time he bagged some other complications along the way (you don’t want to know the details of that!)
Pancreatitis is an excruciatingly painful condition that attacks the pancreas in the gut. In fact I met a lady who refused to discuss the subject simply because she had suffered with it for 2 weeks previously. She was so worried that by talking about her experience she would jinx her life and re-invite the pancreatitis into her system. She scarily likened it to a constant labour type pain.
Panky (as I like to refer to the horrid disease) struck my son last year. He was in a lot of pain all the time. Unfortunately being a non-verbal child meant that there was really no way for him to clearly communicate this to us. For my son, being non-verbal meant an inability to communicate with words which led to frustration and ultimately crying. The bad news about cry-communication was that there was no way of telling what each cry sequence represented. For example I don’t want more food, cry. I want to go out, cry. I want the TV channel changed, cry. I have a dirty nappy, cry and I really need to be changed, cry. We had to always guess what he wanted. It was an elimination process until we could isolate and narrow down his needs.
At the time, he cried constantly. So we took him into hospital and he had many tests. The results did not indicate Panky’s presence. So we just honestly put it down to an attention seeking behaviour. His school thought the same too. I decided to ignore the constant crying but unfortunately things got to a height when he cried non-stop for 2 straight days. Something was definitely not right. By the time I took him to the hospital, he was in excruciating pain at which point the diagnosis was made.
Well fast forward 6 months later and we are still here waiting for the Panky’s departure! (it had definitely overstayed it’s welcome). We are not only dealing with Panky but also all the friends it has dragged in without even any notice (by this i mean the various complications as a result of it). At one point, he was in so much pain that he had to be on very strong pain killers to snuff out the pain. The problem was that he was nearly snuffed out alongside. As soon as the medicines in question were administered, he slept off instantly (and for hours too) waking up in pain for which he got given more pain relief (and obviously going right back to the sleep from which he had just finally arisen). Although we wanted him pain free, we lost our son to an endless marathon cycle of sleep, groggy awakenings and painful screams. We also felt helpless as parents. It was so sad to watch especially as in no time, he seemed to be a bit resistant to the medicines. There was also the real fear that all the concussion of painkillers could strike with horrendous side effects.
The doctors (in their infinite wisdom) at the height of the pain decided to bypass feeding him orally into his stomach. They fed him an intravenous (IV) nutrition called TPN. The pain did not disappear immediately. It took about 2 months of not feeding him orally (into his stomach) to relegate Panky to the background. He was then weaned off the painkillers as his pain subsided. The IV feed idea has been God send because although Panky is still in the picture, not feeding into his stomach has meant that we have seen less of the patient (that has defined my son since he was born) and more of the boy- my little boy.
That was all just to give you an idea of how the past two weeks of near pain disappearance has felt for the whole family including all the staff here. We have watched him play, scream happily, hum his songs and become a little mister full of character (at one point waking the whole ward up at 2am with his sing-songs!). He has been the best he has been since he was born. I never knew he could glow as much as he has done. It has been a pleasure to behold. However, amidst all the joy, the presence of Panky was never forgotten. It loomed in the background reminding us of its existence by sending sporadic pangs of pain every now and again.
Unfortunately, the time for the IV TPN feed seems to have come to an end. The doctors in their numbers have come in today to tell me (in not so many words) that we have to restart his oral feeds again. Now, we all know that will be equal to inviting Panky to resume its attack on my son! I can just see it accepting that invitation with all pleasure and leaving us all helpless. But they insist that it is a chance we have to take. He cannot survive long term on the IV TPN feeds. Nobody does without meeting even more disaster in the end (I hear those feeds are meant for short term use grrrr). Using them long-term brings a wrath which they unfailingly unleash on the liver.
I was even told that there is a large spectrum of liver disease that could possibly be acquired as a result of being fed the TPN long term.. My confusion was that I thought the initial plan was to leave him on the IV TPN feeds for a bit longer in order to give his gut more time to rest. He was to have a Hickman line inserted to enable us administer the IV feeds at home. We were to be taught how to do these feeds safely at home. It was all a happy plan until this decision U-turn (or maybe i heard wrong). I had wanted that initial plan badly. I wanted anything to keep my boy being a boy and not a patient. But the truth is that the doctors know best. I cannot possibly win an argument for which I am not even able to fully understand the ramifications of my own opinion let alone the doctors’ opinion cum advice.
I argued that i wanted my boy to keep being as happy as he has been these past few weeks. Now that I have caught a glimpse of the true boy in him without the pain or struggle, I don’t want to let go. I don’t even want to try this new plan. I hate it all. He is only 3 yrs old for God’s sake! But I know the truth. I know that although I say I don’t mind the liver disease that the IV feeds will bring in the future, it will be like postponing doom’s day. It will be an inevitable disaster waiting to happen. I have to let them try again. I have to let them give him his feed orally. There is still the slimmest 0.000001% chance that it might work.
I know that I have to let go of my fear but I also feel like I have to protect him now from the possibility of pain. I hope that this retrial of oral feeds will not go as disastrously as it had earlier done. For some reason God (mother-nature, the universe, life…) decided to dish out a bad gut to my son. I have no idea why but that’s just what it is. Since we bypassed feeding him through that gut of his, he has blossomed into a totally different child. It’s such a big shame.
On a brighter note, I wish I could have framed these past few weeks. I have taken enough photos and recorded enough videos for England (smiling). Well, who’s to say that the plan won’t work eh? Anyway in the meantime, i have worn myself out today emotionally. I just had to get this off my chest especially to share a bit of the difficulty I face sometimes. Thank you so much for your time. Knowing that you share this journey makes all the difference to all of us here. Cheers!
Thanks for reading.
Photo credit: Pixabay
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