Operation #6 – Vesicostomy & New Gastrostomy Tube

Christopher did so well today with his operation. He was taken to Theatre at about 3.30pm and was in HDU by 6pm, with a Stoma in his tummy and a new (bigger) Gastrostomy Tube. A Vesicostomy is an operation which makes an opening (stoma) below the belly button. Christopher has a Neurogenic Bladder with urine retention. The muscles holding urine in do not get the message that it is time to let go. He has been experiencing recurrent UTI’s which if not treated in time will inevitably cause kidney damage. His bladder will continue to grow as he does and will fill up and then empty directly into his nappy from the stoma. This means Christopher will no longer need to be catheterised and this will limit the amount of Urinary Tract Infections that he will get. The Vesicstomy will be reversed by the time Christopher is 2 years old.
The bigger Gastrostomy Tube, means that it won’t take so long to feed him and the tube is less likely to get blocked.

When Christopher came to HDU, he was breathing on his own and was a fantastic pink colour and very calm. I am so proud that he came through the operation as well as he did.

Countdown to Operation #7 – Cleft Lip Repair.

Operation #5 – Ureteric Reimplant

Today Christopher is 6 weeks old 🙂 This time has flown by and dragged all at once, if such a thing is possible. Christopher was due to be extubated today as his lungs were clearing up so well, apart from one small hitch. He had only pee’d out 8ml in the last 24 hours. Another Ultrasound showed that the abdomen was fuller than it was last night. So they took him into the operating theatre at about 2.30pm and the surgeon went in to find that the hole left by the SPC had healed over, but he had a hole in his Ureter (the pipe from the kidney to the bladder). The surgeon had no idea how that got there (nor do we), so she removed it from the place it was at, shortened it and reattached it into a new position (and this now puts a stop to the kidney reflux he had). Christopher is now resting comfortably from his 5th op in 6 weeks and he is now weeing in the right direction!!!! Possibly all this was a blessing in disguise. Oh and they had to put drips in his head – because he has inherited shy veins from his mum! Christopher was extubated this evening as he was fighting the ventilator and seemed to be doing well.

Operation #3 & #4 – Cardiac Surgery

Its 8am and we meet up with Cardiac surgeon Dr Y.D., a French Speaking Belgian,who discusses the routine of installing the BT Shunt and then meet the British Anaesthetic Doctor (Chris is getting a very multi cultured experience here in Melbourne). We go back to the ward and find Chris wide awake and taking everything in. He is too cute!! At 9.15am we walk down with him o the Operating Theatre holding room and say our goodbyes to him. He was still awake and didn’t make a peep of a sound on the trip down or when we said goodbye to him. He is such a calm little baby, let’s hope that doesn’t change when we get him home!

At 1.30pm, we get a call from the surgeon to sat that the Shunt is in and everything went well and we will be able to seem him in the Paediatric ICU in about an hour. We receive another call about 2pm, to say that his blood oxygen levels plummeted and they will need to go in again and go on heart by-pass briefly to adjust the shunt. At 3.30pm we are informed that the BT Shunt has been shortened and he was on by-pass for 6 minutes. They are leaving his chest open with a dressing over it, which they will close up once he has been stable for 24 hours. This basically means that Christopher had 2 operations today. Its 5pm once we get to PICU and see more tubes and IV’s that we have ever seen before in Chris’ little body. I think it would of been a terrible shock if he hadn’t started off in NICU since birth.

After the Op

Operation #2

Christopher had his second operation today at 11 days old. This was to fix the fistula, and do the full reconstruction of his bottom. This surgery was to take 4-5 hours, but Chris was back in 3. He coped very well and is currently recuperating with his legs wrapped up in a mermaid formation to allow healing and reduce movement. This little boy keeps teaching me new things every day and manages to show me just how brave he is. Christopher started off the end of week 2 with blood transfusion of 40 mls to replace the 20 mls of blood he lost during his operation. 20mls in the scheme of things doesn’t sound like much but when you only weigh 2550grams its quite significant. He was quite pale after his op and his blood pressure dropped a bit too low, and his colour has now returned and he is looking much better. He is also resting comfortable, thanks to some fine pain relief.

Christopher’s First Week

What a week, Chris’ first week has been.

After being in a hurry to enter the world in the first place, he was also in a hurry for his first operation. At 5.5 hours old, Christopher went to the Operating Theatre for a 4 hour operation to attach his oesophagus to his tummy. When I went to see him the next day, he was intubated and was paralysed. They had his neck flexed downward to enable the wound to heal properly. This was most important as they wanted the oesophagus to knit well to ensure that there would be no leaks and cause problems with feeding later on. He also has a small drain in his tummy to allow gas to escape, as he is not pooing at the moment, because of some bowel problems (which will be fixed later this week).

The Dr’s were worried about his left kidney (the right one is multi-cystic and will never function), as it is on the small side and not as well formed as a kidney should be. it had a little air in it which could be due to reflux or it being connected to the bowel, which of course could increase the chance of infection. The week has showed that Chris’ urine input is increasing, which is a big positive, but only time will tell how long the kidney will last (2, 5,10 years or forever??), and we will have to wait until the Renal Specialists can do some more tests, but its unlikely they will be able to provide us with a definitive answer, so while the kidney is a concern, we will just have to wait and see. It may surprise us all.

On day 3 they reduced the oxygen being pumped into Chris’ lungs. he was on 50% O2, but is now down to 21% O2, which is what we all breathe.

They took blood for genetic testing, to see if they could pin-point, a syndrome that may be affecting Chris’ (but on the other hand they may not reveal anything) we are still waiting on the results.

Chris’s has been under lights for Jaundice a couple of times, and he has these very groovy “glasses”, that he wears to protect his eyes.

Chris had to have his intubator tube adjusted as he was getting a little distressed when being turned over, they took a chest x-ray and saw that it had moved in his lungs and that’s why he sats were going all over the place. He is a lot more settled since they have fixed that up. He is also having physiotherapy every 4 hours on his left lung as it had partially collapsed. The gunk that they managed to suck out of his lungs after the physio, was impressive as well as a bit of a worry, but he responded very well to it and is now breathing partly by himself and partly by the machine.

Day 5 they removed the drain from Chris’ oesophagus operation and he has a very neat 10 cm incision just under his right lung, which will not be visible when he gets bigger, not that there is anything wrong with having a few scars, I anticipate that Chris will show off his “War Wounds” to the girls when he gets bigger!

Day 7 Chris was weaned off the paralysing drug and was starting to move about a bit, he will grip on your finger if you place it in his hand, which is just amazing, it melted my heart when he did that for the first time. Yesterday, I spent nearly the whole time with him holding my fingers whilst he slept on and off.

The cheeky little bugger opened up his left eye and looked at me a few times and his eyes are a very dark blue at the moment.

Christopher also had a Brain Ultrasound to make sure that there were no bleeds or blood clots on the brain. We are still waiting on the results, but the sonographer advised that she couldn’t see anything out of the ordinary. Hooray – another positive for Chris!!

The staff are taking Chris down to have an MRI this morning. It sounds like a logistical nightmare, as they need to take down his cot and all the apparatus surrounding him down to the Radiology Department. He will also be placed under a light anaesthetic to make sure that he is absolutely still for the scan. The MRI will be used to determine the structure of his bowel and they will also look at his spine whilst he is there. The structure of the bowel is important, as it means the surgeons can decide how they are going to tackle the next operation. As they wish to limit the amount of operations on the bowel as the more they play around with it, the less successful subsequent operations may be with scar tissue etc.

Christopher’s main Dr is realistically confident with his progress so far. He is doing well enough to move on to the next step, especially seeing as the Dr’s were very concerned about how Chris would cope with everything, considering there are so many things that are wrong with him. The Dr’s are also very happy with the function of his lungs, heart and kidney function at the moment. Obviously every thing needs to be taken day by day and week by week.

I am awake!CryingCool Dude