GCMN - Surgery Round 5

Apologies first of all for the lack of blog posts, life has been busy.

Apologies also for the crappy phone pics. Despite me packing 3 laptops, a tablet, & chargers, 2 phones, 4 suitcases, 2 back packs, a satchel & clothes for 3 days............... I forgot to pack our camera.



Thursday last week was a busy one. Mr C had to be at the new Royal Children's Hospital for pre-Op check in at 12 so we had all bags packed and ready the night before. Mamma Bear's parents were watching Mr B, Mr T & the 3 Girls and Miss M was coming with MB and I to the hospital.



We made excellent time and had the children at the inlaws by 9:30 leaving us plenty of time to switch from the bus to the mirage and headed into the city. After arriving about an hour early, Mr C was fasting so we had to hold off on brunch instead MB snuck off for a salad roll before we explored the new hospital. I have to say so many things are improved about the new RCH. Parking is ample, its reasonably easy to find your way around, there are plenty of activities for children from large touch screen computer games to a 2 story aquarium, playgrounds icecream shops and much more.



As midday approached we headed up to pre-op and signed in. There used to be multiple waiting rooms on the one floor for surgery there is now one large waiting room, the seating wasn't very well thought out and with 30 odd families crammed in it felt very loud and busy. C was content playing with a couple of transformers I had bought earlier and when they became less exciting he played games on my tablet.



The nurse saw us first weighing him and asking the usual questions before the anaesthesiologist saw us, it was the same doc from C's last op and was very friendly. We were 3rd in line so we were given a pager so we could go for a walk but as we were about to leave it was suggested we should hang around as it would be sooner than expected.



By About 2:30 we were being called in. We changed C into his theatre gown and were greeted by Tony Pennington (his surgeon) along with the anaesthesiologist and one of the plastics registrars. It was discussed and agreed that along with further serial excision of C's Cheek, temple and eyebrow they would also remove the dog ear in his crown from the last op (which was making his hair stand on end). 

Pre-Op Thumbs Up

MB took some snaps before saying goodbye and I headed down the corridor towards theatre. Some gas and anaesthetic and pretty soon C was snoozing so I kissed him and left.

Most times when C is under we grab a bite to eat and hang around the waiting area but because this time MB had arranged to stay and Ronald McDonald House we walked down the road and checked her in and chilled out for all of about 10 minutes before heading back.



We timed it well because we were only waiting what seemed like about 10 minutes before the doc came out and gave us the feedback that all went well. Within another 10 minutes we were by C's bedside in recovery. Some times they have used full dressings on his head other times they have left the sutures exposed, this time they had dressed his temple, eyebrow and cheek and had left the sutures exposed up through his scalp to his crown. He was super groggy coming out of the GA and also on morphine. He was trying to eat an icypole but was clumsily missing his mouth. We were able to start talking to him and soon we were on our way up to the ward.

Recovering on the ward

 The new rooms are really nice, spacious, with seating for a few people plus a chase style couch doubles as a bed for parents. Each room has its own bathroom with dozens of chanels on TV including games and other activities. We kicked back and waited for the drugs to wear off. As soon as he was lucid C wanted food so we started with Jelly and a drink followed by some yoghurt which he brought up pretty quickly.

We left him happily watching TV so I could walk MB to Ronald Mac house and on my return C was already looking for more food. Its hard watching the little ones go all day without food then as soon as they can eat again they go too fast and end up bringing it all up. He did so again with the second serving of food and drink. We decided to leave it til morning so we sat up and watched several episodes of mythbusters on his Laptop while MB and I emailed one another.



I ended up falling asleep at about 1am and slept comfortably although I was woken pretty regularly by some machine in the corridor beeping. I got up around 4:30 and decided to stay up. By 7 C was awake and looking for food. He ate a bowl of corn flakes followed by a bowl of rice bubbles then a bowl of wheat bix, and more importantly kept it all down so I was hopeful we could go home that morning.

Our youngest son and youngest daughter

After a surgical review and some visits by random channel 7 celebrities (of which we had no idea who they were) we had the all clear and headed home.
 

After checking out we played games

Today is 5 days on and we have a Gp Appt to redress the temple/cheek/eyebrow area and a plastics review (and assuming sutures removed) next Monday. C has been propper spoilt (as always) and has truely impressed me yet again with his strength and courage.

Tissue expansion, nevus & the many changes faces of C

Seeing though C has finished his tissue expansion i'm re-tagging all my nevus related posts as..... well nevus as it will be ongoing. Whilst there wont be any more rounds of expansion there will be more surgeries. Nips and tucks as I call them, to fix up his eyebrow, his cheek etc etc.


We've been on the waiting list for the next op for over a year now. The waiting for his first op was excruciating but all ops since I've swayed more towards a "whatever,whenever" attitude. Its not like its something to look forward to, taking your child to hospital, having to sometimes restrain them as they go under and comfort them after they come out. I try not to think of it, just casually remind C with a stroke of his cheek that we will see the doc again to sort that out.I recently went back and looked through our old photos from when he was born, it blew me away just how much he has changed. His nevus has lightened considerably and I cant help but feel anxiety about the what ifs. What if we left it, his hairline would be more natural, he'd have both eyebrows but then I also look at him now and see the changes for the better. Maybe its in my mind but while he still never feels the cold he doesn't seem to overheat as much as he used to. I know the expansion wouldn't have created more sweat glands just spread them out over his scalp but I like to think its made a significant improvement. MB sees it more than I do..


Self Portrait


I joke with family and friends and say he is my favorite, I know i'm not supposed to say such things but he and I share a closeness that I don't have with my other children. I still feel guilt for the emotions I had when he was born. I think that my guilt combined with what we've been through together makes me show him extra favoritism and lenience when he misbehaves. He really has turned into quite a cheeky little boy, spoilt by his father for sure and you know what? I wouldn't change that ever.


Some of the shots give you an idea of where he is at and can show his scars, man it was tuff trying to find imnages


Showing the hypertrophic Scarring
We've decded that he is best with longer hair so when it gets some length this time around we will start taking him to the hair dresser (as opposed to me shaving his head) and get them to shape it to suit his scars and skewed hair line

Looking Back 5 years its quite a surprise to me the various color changes within the nevus I think it definitely got darker after birth then lightened up. Maybe its just me

Dark

Lighter
DarkUntil Next Time....

The Master & the Apprentice

C had a follow up appointment with his surgeon today, we actually made great time on the drive in and were seen early. He will not require any further tissue expansion treatment but the doc does plan to do some follow-up smaller ops to fix/adjust/smooth out some areas that are still a work in progress. He asked me if we wanted to have some time off from surgeries or get back into it with an adjustment to his eyebrow first up. Given we were on the waiting list for over a year last time I figured might as well start waiting now so he added us to the waiting list.

C and I then headed over to my work. I set him up on my personal laptop with a few movies and TV shows over the partition from me and I think it’s fair to say he had a ball.


What's funny is that he is such a loud boisterous child except when he is around strangers then he is the opposite, quiet, softly spoken & shy.

He was lucky enough to also be spoilt by half a dozen members of staff with lollies and all sorts.

It tuckered him out, he slept the whole way home.

Until Next Time........

Update on Tissue Expansion

Busy Busy the last few weeks, for some reason i've started getting quite a few migraines, i've managed to stop them from going full blown by medicating and getting sleep but in the past 2 weeks i've had suffered from the onset 6 times, each time its been a food triggering it.

Anyhoo onto tissue expansion

Its now been 6 fill ups, if I remember correctly:
40ml
105ml
125ml
125ml
125ml
125ml

C is really looking quite…………how should I put it?? Freaky??

Its hard watching him run and play and jump and be a 4 year old boy without worrying about it. We had a great day out in Ballarat a few weeks back with Apwool & co. and I couldn’t help but notice all the stares he was getting from other people, both parents and children.

He noticed it for the first time on the way home from the hospital. We were parked at the lights next to a bus stop full of teenagers and C said from the back seat “they’re looking at me” I didn’t know what to tell him, so I said “wave a them, if they don’t wave back poke your tongue out”. We took off before we could test this but its there for next time.

Our only regular family outing is swimming on Saturdays which is great as we have been going there for a year now, everyone knows us and people don’t really pay much attention to C.

I have pre-booked the next 5 sessions, I hope they don’t put 100+ml in each time as his head will be huge, dressing him is tough now, we bought lots of button up shirts but he insists on wearing t-shirts. Getting his head in is like trying to put the tshirt over a head then over another head.

He has been great with the fill ups though, no tears or getting upset, I think it’s the combination of the great staff and also the many distractions they have for children plus he knows we always get an ice cream when we are done.

Some weeks we are in and out in 10 minutes like yesterday. Other weeks its 2-3 hours which can be draining.

I wish the end was in sight.

Until next Time…..

Tissue Expansion Update

Its now been a month since C had is expander inserted.


In that time we have had 4 visits to the RCH, 3 of them for fill ups. 40ml on the first, 100ml on the second and 120ml just 2 days ago.

Combined with 80ml (done in theatre) brings us to 300ml and equates to this:

As I've said before I was dreading it this time around but he has been a real inspiration.

We have standard a booking at the hospital so our weekly routine is spot on and consists of me waking him up, having breaky, then applying angel (EMLA - Numbs the skin) cream to his port, placing a piece of glad wrap over it then bandaging it in place. I also put on his special hat to cover everything and prevent curious fingers then we head off for the hospital, its about a 90 minute drive give or take, time is usually spent chatting, listening to music or playing games on my iphone.
NOt every morning has been smooth sailing, try waking anyone 2 hours earlier than normal on a cold morning and they would be grumpy.


I try to make it as positive as possible, talking about how cool his balloon is and how it's going to get bigger then in "a few weeks" be gone forever. He has shown a little anxiety towards seeing the doc but usually forgets it when we hop in the car and I hand him the magical iphone. The ballon its self is much larger than his last expander and softer (well there is more space) he slept in my arms the otehr night and I just stroked it for an hour.





So far the angel cream has worked well, he hasn't flinched or felt pain when the needle has gone into the port, the doc usually injects saline until C shows discomfort or the skin tightens. On the second occasion we were in and out in 15 minutes. This weeks visit was an hour and a half so it is hit and miss i'm afraid. I cannot praise the staff enough, they are always friendly and happy to see him and also lend a hand hen he needs entertaining during the fill up.





As i've mentioned in my last tissue expander post there are apparently 5 other children going trough tissue expansion at the moment (normal its just one). So far I have seen a little boy with what i'm guessing is a bathing trunk nevus (covers the back) with an expander across his shoulders. I've also seen a little girl with a cape nevus (covers the back and head) with an expander on top of her head and another on her cheek.





Its amazing how resilient children are. mHaving a water balloon on top of his head hasn't slowed C one bit, he still swims, runs & jumps just like before, its his poor parents who cringe every time he trips or bumps his head.

Hoping it continues going as well as it has been.




Until Next time..........

First Tissue Expander Fill Up

C did Really well today, I expected him to get scared & upset but it didn't seem to phaze him one bit.



40ml was put into the expander, he also had almost all his sutures out. It was a long morning though, we left at 8 and got home at midday, I hope to make better time next week though.


Until next time.....

Hosital Visit #1

C and I had a follow up at the dressings clinic on Thursday, all is healing well. We can start getting the scars wet in an effort to dissolve the sutures.

He did quite well, we had the same nurse we did 2 years ago, she remembered him and commented on how more calm he is now, when he was 2 years old he was non stop running up and down the ward, this time around he was more easily amused with things like the Nintendo DS and was a little shy with some of the new faces.

Next Thursday we will be back to have any remaining sutures removed and probably the first expand.

In Other news its been a nuts fortnight, I've had a few nights were I've been really late home from work and have fallen off the coke wagon a few times but I hope to be able to switch back to water come tomorrow.

Until next time....

Tissue Expansion Has Started

Mumma Bare, Miss H & I Took Mr C to the RCH last Thursday morning for his next op, He had to fast from 8am so we got up early (6:30) and had breakfast, unfortunately this is at least 2 hours earlier than his normal breaky time so he wasn’t really peckish. We packed a bag and hopped in the love bus and headed in.
Sleeping in the bus

BEFORE

The wait is a killer, its mainly to ask all the relevant questions, sign forms and observe the child is in good health but for a 4 year old who had had 2 mouthfuls of cereal to eat all day its torture. He finally went in around 3pm so Mumma & I were able to get some food into ourselves also.

After about an hour and a half it was all done, we were paged to come to recovery. I know I left MB behind as we walked in as I was so anxious to see him, in his previous ops he has been all bandaged up so when I first laid eyes on open suture lines it was upsetting. Due to the scarring last time the doc wanted his stitches left open.

He was extremely groggy but wanting to rub his face this made things difficult. I had to help the Nurse hold his hands, which he hated, in the end we thought it best he sit on my knee and eat an icypole to occupy his hands. Most of the remaining Nevus on his check was gone, and beneath his blonde hair you could see where the expander sat. He was soon transferred to the ward. I think by this stage it was about 6pm, he was still pretty groggy, we tempted him with jelly but he only had a mouthful then fell asleep.

Mamma Bare & Miss P headed home, so I sat on the Chair beside the bed and tried to get some rest. C woke around 11pm and wanted to go to the toilet, he was given some pain relief and then had some more jelly. Whilst eating he felt his face and his head and asked me where his birthmark was. I explained that it was still there, but some of his cheek has been removed and that he had a balloon under the skin on his head (we had shown him numerous photos of his last round of expansion) He wasn’t happy about this, he said “I want my birthmark back, I don’t want a balloon, its ruined” What can you say to a 4 year old who drops this bomb. I immediately felt the wash of guilt come over me, It was our decision to put him through this. I didn’t know what to say, I just hugged him and cried.

The moment was broken by him bringing up his jelly and pain meds, I leant him forward and missed his pyjamas but the bed was messed up. I sat him on a chair in front of the hand basin while I nurse changed, cleaned and remade his bed. He quickly fell asleep and I moved him to his bed. He slept well, I cant say the same for myself, our room was noisy and bright. He woke around 3 AM and started to touch his stitches so I laid beside him and held his hand until he fell asleep again. It was good to be able to get sleep for a few hours.

Morning came around, he devoured his breakfast and quickly started asking to go home. I tried to kill time by walking the corridor and when the activity room was open we did some painting and playdo but he wanted out. After a clean of his sutures and a prescription we were off.

Mamma bare was already on route but we decided to walk (he really wanted out of the hospital)

We decided to take the opportunity of only having 2 children to our advantage and did some shopping. C picked out a bumblebee transformer and we got a gift for each of his siblings.

AFTER

Taking his anti's

That’s about all I can recall from the hospital.

Until next Time……..