our 3yr old son Connor has had a terrible start to life and has already had multiple major surgeries including a colostomy, a reformation of his colostomy and an illeostomy when the previous stopped working. we are currently living in canberra but his specialist surgical care is
based in sydney which has meant considerable time away from home and more than a few unplanned hospital stays with us just returning from a 5 week stay after going up for 2 days of appointments. connor still isnt well he is having trouble walking due to the pain he is in, even tho we are in contanst contact with his dr we still have no idea when he will have surgery.
Connor’s journey
When Connor was born Dave, Lola and I were truly blessed with a beautiful little boy, it was such a long and tough road from the
medication to fall pregnant with him and then to find that it was twins and then going through the loss of his brother at 13 wks gestation was the most heart breaking thing ever to this day the grief is still so raw and no doubt it always will be.
I went into labour at 23+6 with Connor which was heart breaking when the NICU teams and drs come in to have “that” talk. The talk no one wants to know about let alone hear. The contractions kept getting stronger they started to prep me for my c section but lucky they
injection of terbutaline and GTN patches they gave me started to work and Connor was still safe where he was meant be to keep growing. I
ended up going home but had 6 more trips to birth unit in labour and each time they stopped it.
Thursday 1st feb 2018 was the day it all started and ended up being the longest 3 days of labour my whole body was numb I was mentally
exhausted, physically exhausted but my body knew it was time for Connor to come even the meds did not help this time it was time Saturday 3rd feb at 11.57pm weighing in at 2kg.
Dave heard Connors cry from the anaesthetic bay as I had to be put under, it’s the most beautiful recording hearing those cry’s Connor was born at 33 wks on the dot and had amazing spar scores of 9 ea time but his tummy was big and he looked like he was pregnant himself, he was taken to NICU where he started to need help breathing which of course was there my worry at 16 hrs old Connor crashed and drs and nurses came rushing in Dave and I got pushed out and they had to work on my baby to bring him back. For 2 days Connor was fighting, and he showed them how strong he is and how much life meant to him and how much we need him.
We noticed Connor still hadn’t done his 1st poo one I’m sure every mum think is tar. We kept asking about if he has done a poo and nothing and his tummy was still big this lasted until they gave him and enema and manually helped him do a poo. We asked the NICU drs about this as we knew it wasn’t normal and they said they will watch him, this went on and on we kept at the drs about it but they just said it can be
normal for a baby not to go every day as, we got moved to special
care where Connor got to go home at 35 wks gestation which was amazing for us, our daughter was premmie so the nicu life and premmie life wasn’t new for us. The drs kept saying he will go on his own well Connor never did we ended up taking him to Westmead children’s
emergency so many times we have lost count and they just kept saying up his laxatives, Connor got admitted several times as he had temps and each time, they done lumber punchers septic work ups everything but Couldn’t find the issue.
This went on for almost a whole year Connor went through weight loss, vomiting where he wouldn’t gain weight it got bad, we tried
everything he was tube fed, he would have bowel prep fed to him for days in hospital.
When we got to meet Connor’s gastro dr she helped us she got tests done x-rays. Put him on formula where its better digested and done
rectal biopsies they have even come back clear. connors gastro dr made the call to get the surgons involved involved which was the best
thing ever she has saved my little boy
Connor was having adult dosage 3 time a day of laxatives plus microlax enemas , bowel prep. connors surgon reached out to drs from all
over on advice on what would be the best cause of action.
It was a long wait to get into see connor surgon but when we did she knew Connor needed help, she had Connor on her table on 19th June 2019 wks after 1st meet Connor.
Connor went to theatre to have his 1st laparotomy done, plan was to give him a colostomy bag but surgons came out and had a chat about trying the chait button which we agreed, his surgon came out hours later to have a chat as she finished she had removed Connor ascending colon as it was so stretched no way it would of gone back to normal and Connor had the chait button in place hia surgon also noted that
Connor was covered in lymph nodes through his whole bowel when she showed us the photos it was mind blowing .
Connor looked good he was resting, a wk later we started wash outs threw his chait button started going well and then he started to get
blocked again Connor had to go back to theatre and have a wash out under GA which worked but little did we know it was the start of many surgical wash outs he will need Connor had to have 3 more before his colostomy formation on the 4th November 2019, Connor
went in my heart was aching having to hand over my baby boy again.
Connor looked good he was resting, a wk later we started wash outs threw his chait button started going well and then he started to get blocked again Connor had to go back to theatre and have a wash out under GA which worked but little did we know it was the start of many
surgical wash outs he will need Connor had to have 3 more before his colostomy formation on the 4th November 2019, Connor went in my heart was aching having to hand over my baby boy again
But I knew he was in the best hands and the only hands I will ever trust for Connor, once his surgon was done she came out again and she was blown away again with the amount of lymph nodes again Connor had, Connor was settled on the ward where the nurses love him and are now part of our family.
Connor always likes to keep the nurses on there toes after his surgery’s from bleeds, to high bp, pulse all which require Rapids getting
called.
Connor had to have few more surgical wash outs before Christmas and more again after Christmas. his surgon took Connor every time
this time she noticed that Connor’s stoma was pulling back in which is unheard of so Connor was booked in to have a revision of his stoma which was done 10th feb 2020 his stoma looked amazing and was working wahoo
This was short lived when Connor got sick and things started to get worse, Connor wasn’t gaining weight he was in hospital with norovirus which he was in immense pain worst I have ever seen, we got transferred up from Canberra hospital
Connor was put on strong pain killers, antibiotics and started TPN for the 1st time
The TPN was amazing he picked up we went home after 3 wks in hospital
Connor was still having more issues and had more wash outs until we said enough and his surgon closed off his colostomy and made his
ileostomy where againhions his surgon removed many lymph nodes from Connor, Connor ileostomy has been amazing he has been able to poo and do things a normal 2 yr can and would do
We have never seen him so active, he talks so much now, he has adjusted himself to climb and do many things.
Since Jan 2019 to 28th august 2020 Connor has had 15 surgery’s we are now up to 18 surgerys which incules bowel washouts
xmas 2020 we went on a break to brisbane for xmas and connor ended up again in hospital with a blockage this happened again in Feb
2021 and since then he has been going down hill he is having trouble eating, walking basic day to day living due to the pain he is in his
surgon say he keeps kinking in his small bowel which is causing all this.
we went up in may for 2 appoiments and ended up with a 5 week hospital stay and left with still nothing much done due to drs not knowing and diffrent teams wanting to do differnt things and not talking
connor had a full Gut reset which hasnt worked, we are awaitng to here when he will need to go under again this one will be massive they
have told us that they will place a decompression tube to stop adheasions forming aswell as doing other things while his is opened up, we donot know what to expect but all we know is that this has worked for other kids and we are wanitng to give it a go and to get him out of
pain and be a happy 3 year old.