My 2016 Journey Part Three (includes some 2017)

Well we hit another milestone on Saturday night. Here’s what I posted on Facebook:-

Now for some backstory on that feed tube. But an upfront warning, some of this will be a little detailed, I will try not to go into too much but if you are incredibly squeamish then you have been warned. I should also mention that The Royal Children’s Hospital has been absolutely amazing and 95% of the people and experiences we have had have been as good as they possible could be given the circumstances.

Now I know i did mention some issues with the PEG in My 2016 Journey Part One. But now in more detail. When you go into The Royal Children’s Hospital you will see a lot of kids (particularly in the cancer ward) with a small tube going across their face and up their nose. What you don’t see is that this tube continues up their nose, down the back of their throat and delivers food straight into their stomach. It’s a liquid diet and sometimes you’ll see the upside down baby bottle attached to a tube hanging off the back of a stroller or wheelchair or hanging on a pole next to their bed. Apparently they can be a little uncomfortable but overall fairly non obtrusive. Because of the location of Hayley’s tumour filling her nasal cavity, this wasn’t an option. One, because they wouldn’t be able to get it through and Two, because the radiation wouldn’t be good with the hose there.

So on Monday 11th July, 2016, Hayley was in the operation room getting a PEG (Percutaneous Endoscopic Gastrostomy) installed. This basically means that they inflate the stomach so that it pushes on the abdomen wall then cut through, just above the belly button, and into the stomach. They put a hose in with a small balloon on the end which they inflate to hold in in place. The rest of the hose hangs directly out of the stomach. There is a small rubbery bumper on the outside as well. We attach a bag or bottle of feed, run the line through a little purple pump, tell the pump the rate of how many millilitres per hour to run at and hit start. All in preparation for when treatment prevents her from being able to eat normally.

Someone comes to train us on how to operate the purple pump. The Gastro team install the PEG. The Stomal team tell us how to look after the wound. The Dietitian comes and tells how much food to put into it. While the whole time we are still dealing with the Oncology team about the actual cancer itself (wow, nearly forgot that was there with everything else going on, sigh).

Gastro team: Well the procedure went well. She might be a little sore when she wakes up but the nurses will help with that. Should all be healed in two to three days.

One week later

Us: It is not getting better.

Gastro team: That’s because of the chemo.

Now I already was aware that the way chemotherapy works is by stopping the cancer cells growing. I was also aware that the downside of this is that chemo attacks all fast growing cells. This includes cancer, hair, lining of the mouth and stomach and e few other parts. The gastro team also knew this was a cancer patient who was receiving chemo. Why tell us 2 to 3 days? The site got infected and the infection didn’t disappear for a while (chemo). Then one day this half metre long hose got caught on something, causing it to become embedded into the inside of her stomach wall. A little blurry on the memory now so I’m not sure if this was the time I was watching my little girl looking all tired and drowsy as they pumped in the morphine and ketamine to help with pain or if that was another time.

The Gastro team decided to take the big hose away and replace it with a thing they call a MIC-KEY. They then put this little plastic thing in the hole and inflate a small balloon on the inside that holds it in place. There is a small cap on the front with a one way valve behind it. We open the cap, attach the feeding tube, then the rest is as before. Back under anaesthetic as they didn’t know how long it would take as they didn’t know how embedded the thing was.

Sitting her in the bath at the hospital one night we saw a the feed leaking out around the PEG and out of the wound. It was more like running than leaking. We panicked a little and started pushing buttons to get nurses in there. Apparently it was nothing to worry about and is fairly common. At this point I will just remind everyone that we are parents, not trained in any form of medicine beyond a kiss better or a band aid. A little bit more information needs to be given to parents, especially when they expected to do all these things. In general there are no real manuals on parenting, let alone when shit like this happens. Although there are some experts, usually childless.

Reminds me of a Louis CK routine about parenting. basically about a mother and child at McDonalds, kid upset, mother upset. Childless people walking past judging “What a horrible mother. When I have children I’m going to… blah blah blah” While the other parents walk past and think “What has that horrible child done to that poor woman!” It’s hilarious and I have veered off the point, so look it up on Youtube.

Anyway, they needed to swap it over. The swap over was done while Hayley was wide awake and without painkillers. Just her dad laying on the bench holding her still while they take this thing out and replace it while she screams. I eventually got to sleep that night, I could still hear that scream as I held her still.

Eventually that one got infected too. Pumping Endone into her every 4 hours to stop the pain. The nurse will occasionally get caught with one of the other patients in their care and it turns into 4.5 hours and she is screaming. Carrying her and cuddling her to comfort until the painkillers have kicked in again and she falls into exhausted sleep. Here’s a challenge for the parents out there. Pick up your beautiful angel for a cuddle, hold them close to comfort them, but, at the same time, make sure that no part of you makes any contact with their stomach. At all! Please also remember at this point she is 7 years not 7 weeks old. Please tell me how you go. Hopefully you never get the chance to add the attached drip at the same time into that equation. To all those who have, my heart goes to you.

Here is a bit about someone who isn’t part of that 95% I mentioned at the start of this story. The nurses called the Gastro team (the person on call for a Sunday afternoon) and they said it wasn’t worth coming in for. So we kept the painkillers running every 4 hours through the night. The Monday I got to hold her still again as they swapped the MIC-KEY for a wider profile to see if this will help stop the leaking and stop the stomach acid burning the red skin around the wound. For a second time my legs were coated from the leaking caused by the swap over. It worked for a while.

The next time (yes, number 4 for those counting) she went back under general anaesthetic. This time she got what I believe is called a PEJ. From the outside looks the same but instead of just the balloon inside, there is a very skinny hose that runs past the balloon, through her stomach and continues down the intestine a little bit. There are advantages and disadvantages to this but I have waffled on enough. This horrible dark green stuff came leaking out of the wound. Again we are concerned. Then some give’s a explanation about the one way valve that people have in their stomach and the tube they put in was holding this open so naturally there will be some gastric fluid coming back up and into the stomach and can leak. Naturally. NATURALLY! Should I make my parents point again. No uni, let alone bloody medical uni. We are not (were not??) trained in this subject that you have specialised in you arrogant knob!

We are then visited again by the Stomal Therapy lady to check the wound after the surgery and advise on looking after it. Now, as I mentioned, this is the 4th attempt and several months in. My wife and I had been washing the area and changing the dressing every day and often several times a day since it had been there. Every Day! As Instructed! With the gauze we had been given and sent to buy more of. The Stomal Therapist says (remember months and 4th attempt) “Oh don’t use gauze. That traps the moisture in and that can lead to infection. Use Allevyn” I felt shell shocked. I don’t think I even spoke as she finished inspecting Hayley and left.

We got the nurses to track down this special dressing that some of them had never heard of. We even had another nurse organise an official bit of paper that got us 50% off the price of these things when we bought some to take home for the daily redressing. That brought them just under $8 each. Luckily we cut them in 4 so one sheet last 4 days. so about $15 per week.

This tube inside her got blocked so back into this little room while I hold her still again while they fix it. No pulling it out this time. Most of the screaming was anxiety built up from the previous visits to the Gastro people.

Things started getting better and we could get rid of the big tube and back to a normal PEG again. Again I hold the anxious angel still. I watched them pull the hose out. Covered in the green liquid I am now familiar with. It was not as skinny as I was lead to believe. Anyway, number 5 was now installed and things are improving. Chemo changed from nasty to maintenance. Hayley’s hair is growing and her weight is going back on so time to start getting rid of the feeds though the PEG. Hayley was on 2 x 500ml bags a day which we slowly dropped to 1 bag and ran at that for a month. Her weight dropped a little but then went back up so we started weaning the 2nd bag. For the last 5 days she was on 100ml a day (overnight) and Saturday 29th April, 2017 (nearly 10 months after initial installation) Hayley received her last 100ml. She wanted to see it so I hooked it up to run during a movie watching instead of at bedtime. So now we monitor her weight for a few weeks and all being well we remove the PEG completely and hopefully forever. Hayley is super scared and anxious about the removal as it is done while I hold her again and she will be awake. It will be so different this time, no long tube inside, no infection, not embedded in her stomach wall. I hope we can convince her between now and then and her nightmares stop. This pole and purple machine currently sit in the corner awaiting return. Farewell and good riddance!

An awesome thing to see the back of. We were getting tired of hearing how this almost never happens and how wonderful these things are.

We also had our 3 monthly scans a few days ago (4 months after the previous 3 monthly scan) so hoping I can tell you the results next week. I hate waiting even when I know in my heart they are good.

Another awesome milestone to celebrate and finish off on. Hayley received 6 months of strong, horrible, harsh chemotherapy with five and a half weeks of radiation in the middle of it all. Then that is followed by 12 months of maintenance treatment. This equals 18 months in total. Then end of March marked about 9 months finished so theoretically April is over halfway and now April is finished so well over halfway. We also know that these plans are fluid and can change suddenly or slowly but may not change at all. I will let you know. Take care and hug your loved ones.

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