Day 116, 117 & 118 - Surgery!!!

Wow, so Jett has had his surgery!! Finally..

I have written this post in 2 parts.. Pre op and post op..

Part 1 - Written 1430 on Monday January 23rd 2012 while Jett was in theatre, while waiting in the parents lounge of the Peadiatric Intensive Care Unit at Royal Children's Hospital :)

Yesterday, the day before surgery was a hard day. It was in the back of my mind that spending time with Jett is very precious. It's a big surgery coming up..

Last night I got a lovely cuddle. From 9.30pm - 2am. I then put him back to bed and changed his nappy expecting him to sleep and for me to go and have a few hours before his big day.. That didn't happen. Jett was wide awake! I couldn't leave him wide awake. I didn't want to leave him wide awake.. I stayed with him til he fell asleep at 5am. I went back to Ron's for a quick shower and packed my surgery survival kit. When Mum woke up it was still early, so I had a half hour power nap from 6.30 til 7am. We arrived at the hospital at 7.30am.. There wasn't a time for surgery but it was booked for 11am.. The time went surprisingly fast. Jett had to have his tube re taped, and his bag had leaked but instead of changing it all I just re enforced it with comfeel. It wasn't enough though, it leaked again!!! All over his clean blankets lol! Re enforced again but this time with a bigger piece of comfeel. Jett was then changed into a theatre gown, I applied some calm and clear essence to his pulse points and the waiting began.

Cuddles with mama night before theatre

Jett in his theatre gown

While we waited I held his hand, cuddled him as best I could and sang him songs. I told him how there are so so many people thinking of him and praying for him. Nurses wrote good luck messages in his little diary I keep by his bed.

Then word came that the surgeons were held up.. It would be after midday now.. Mum went down to grab me some subway for lunch and I ducked out quickly to eat it in the parents lounge. I didn't want to spend precious time away from my son. I needed him to feel my presence and gain strength from that.

Then the time came. The surgeon Dr McB came and spoke to me with the anesthetist. He explained that while him and other Surgeon Dr R were operating the anesthetist would be looking after Jett's ventilation ect.. Dr McB told me that the aim was to untangle Jett's bowel, cut out affected areas and join up the good bits. He said more than likely there will be multiple joins so they would form a stoma above the joins to give them time to heal before making them work.. He said they would do as much as they could.. As much as Jett will let them do. If he becomes compromised they'll stop. It could take more surgeries to do what they need to do. Once they start today, they will have to keep operating until they do what needs to be done. Even if it means multiple surgeries.. The risk he mentioned was operating near the liver. Once the liver starts to bleed it can be hard to stop.. They have blood on standbye for him..

Not long after that Jett was loaded into the neo cot and off we went to the children's hospital. It's about a 10 minute walk through the Royal Women's to get to the children's hospital. Jett's ID was checked and consent form was double checked. Then it was time to say goodbye. I kissed Jett's hand multiple times and told him I loved him and needed him to be strong. I asked him to let the surgeons do what they needed and I'll be here when they have finished. I silently asked my big boys Taite and Seth to look after their brother. He was taken to theatre and I cried..

Loaded in the neo cot just before leaving to go to the children's hospital

As I write this I am sitting in the parents lounge of the Peadiatric Intensive Care Unit. This is where the surgeons will most likely come to once they've finished. When it's over Jett will be loaded back into the neo cot and back to his normal room in ICN..

Part 2 - Written today, Tuesday the 24th Jan 2012. One day post op..

The day of surgery was a long one.. After writing that post yesterday, I killed more time playing on the internet.. I spent time on facebook, dodging people's questions about when surgery was.. Hardly anyone knew the date.. I didn't want to do lots of updates, I didn't want people to be asking me if he was out of surgery yet..

Finally at 1750 my phone rang. It was surgeon R. She explained the long way around what they did in theatre. I wasn't listening, I wanted to get to the point.. Is my child going to survive? Finally she wrapped up the conversation with "So he has 2 joins in his bowel and no stoma" I cried! No stoma, thats fantastic!!! She told me I could meet him in his room in the ICN in about half an hour.. I explained I was right there at the PICU parents lounge. "Oh well, come to where you left him then and wait" So Yay! I hugged Mum and cried, my baby was ok!!! I waited about half an hour outside the theatre then finally he was wheeled out in the neo cot. He looked beautiful! So big. He didn't look sick! I cried with happiness and said hello to my precious baby. I silently thanked everyone for keeping us in their thoughts and prayers. I thanked Taite and Seth for watching over their brother. I thanked Jett for being so strong and never giving up :)

We got to his room in ICN and I was hugged by many nurses! Yay, Jett made it through. The operation was successful! No one could believe he didn't have a stoma. No one could believe they only made 2 joins in his bowel.. This was GREAT news! I was so excited, I couldn't stop crying.. I was exhausted so once I knew he was stable I left to have a sleep. It took me some time to wind down, but once I fell asleep I slept soundly..

Surgical details:

Jett had about 3cms cut out of his duodenum then a small wedge cut out of where the drain was. So all in all he lost hardly any bowel! His large colon looked good and there is a track from stomach to bum :)

The surgeons managed to divide all the adhesions. Not quite sure if they had to cut through near his liver, I forgot to ask..

Jett did need blood transfusions, but was no where near as critcal as his first surgery. He received 90ml/hr/kilo

Jett received ketamine before coming back to ICN so he was pretty zonked!

The incision is all the way across his stomach.. I haven't measured it though.. It has minimal ooze.

Possible concerns:

Due to Jett receiving blood plus his normal TPN they were concerned about the amount of fluid. It's also a concern when he is so sedated that he wont wee. He did though, no catheter was needed. He still has good urine output today.

It's possible his bowel will be lazy IF he doesn't have any bowel action in about 2wks they may have to do a stoma because they want to start feeding him ASAP.. It's unlikely though, he will need that. There are so many people waiting for this boy to poo! I wonder if he will kill me when he's older for putting this on the internet???? LOl

Infection of the wound is possible. Jett has been put on Ampicillin, gentamicin and flagyl..

Where to from here?

So the aim now is to keep Jett comfortable. He was started on Morph and Medaz last night, 20mcg/kg/hr. This stops him from being in pain and from becoming active and splitting the scar. He did start to wake up a bit today though :)

We want him to fart, possibly poo, and have clear aspirates from his NG tube. At the moment aspirates are green which is normal.. Once that happens feeds will be introduced slowly.. 1ml of Mama's milk 3hrly to start..

Once he has recovered and feeding next step will be getting him off the ventilator and onto CPAP (Continuous Positive Airway Pressure).. He will most likely need steroids because he has been ventilated for so long..

How he's recovering today

Seeing Dr D today was so nice.. She came into the room doing a happy dance and wearing a big smile :) When I saw the surgeon I wanted to kiss her! I thanked her sincerely for the fantastic work she and the rest of the team did.

My amazing boy is doing so well. His ventilation is at a rate of 40, Peep is 8 Pip is at 24, oxygen at 42%. His urine output is great and he is having 6 hrly blood gases. His last gas was good, his CO2 was only 59 so his pip was weaned to 23, but his oxygen saturations were sitting on 94, they should be 95 or above, so they increased the pip back to 24.. Aspirates are green which is normal.. He is needing frequent suctions still. Unfortunately because he is so sedated he is unable to communicate when he needs a suction, so it's not until his saturations drop that they know he needs it. Twice he has had a big mucous plug which has made him splint his chest resulting in a big brady and he had to be bagged. I know that will change though once he's less sedated.

Medications: He is on antibiotics - Gentamicin, ampicillin and flagyl. He's still on lasix, TPN and his sedation..

He had 2 IV's, 1 arterial line and his central line.. 1 of the IV's was removed today yay!

All about Mama :)

I am so so happy! I was relatively calm while waiting for the surgery. All up he was in theatre for 5hrs. I left him at 1.30pm and saw him at 6.30pm. I'm so glad I had my Mum there waiting with me. She was and has been a fantastic support right from the beginning. I love her so much.. The emotions I experienced leading up to and during the surgery were indescribable. The fear, but knowing that we would have an answer and that there would be some sort of plan to go home... I was so terrified I may not be taking him home..To think 11wks ago I was told he may not survive the night. To be told he has only has a 5-10% chance of making it.. Wow!!! My boy is so strong. I love him so much.. There's nothing quite like the feeling of not having the fear your son is going to die. It's so nice that I can buy stuff and not think in the back of my head it may never be used.. In fact, to mark the occasion, tomorrow I am buying a car seat and having it installed. It will be ready for our trip home when he's ready. I am so looking forward to our life together! There's still a long way to go but.... I"M TAKING MY SON HOME!!!!!!!!!!!!

*Massive smile and happy dance!!!*

Just returned from theatre

Jett's incision

Jett waking up but still wacked out today

He definitely scores 100 stars on the cuteness rating :)...