Christopher’s Journey.

Hooray, we are home!! There really is “no place like home”!! Chris is back in NICU at the WCH. Not sure what the next step is for the time being, apart from trying to fatten him up and hopefully come home sooner rather than later. We got back from Melbourne about lunch time, followed by our little man about 4pm. He travelled quite well, enjoying the turbulence, but being a bit stroppy when it was calm. So it looks like it we will have to buy shares in a petrol company, to be able to take Christopher on long drives!! His gastrostomy tube came out in Melbourne (with a temporary one put in) and had to replaced when we got back to Adelaide. This is kind of essential, seeing as this is how Christopher is being fed (apart from about 10mls from a bottle when he is awake at feeding time).

Chris was really alert when we went to see him today, We are coming home tomorrow, once again with Chris on a RFDS flight, with us to follow on a commercial flight.

Chris is still on the ventilator. We have decided to go to the Melbourne Zoo today, for a bit of a break and to do something different, rather than spend another day sitting in the hospital. We did ask Chris if he wanted to come with us, but he decided to sleep instead! We bought him a Meerkat toy (which is about half the size of Christopher). By the time we got back Chris was extubated and 2 of the 3 remaining chest drains were removed. It was lovely to be able to see his whole face again. The BT Shunt is working well - his blood oxygen levels are now between 85% - 95%, nice figures to see, seeing as he was, on occasions, dipping down to 61% blood oxygen levels prior to us leaving Adelaide.

Pain and sedation medication have now been stopped completely, with plans to extubate him this afternoon. Chris is awake and is currently NIL BY MOUTH to make sure that he doesn’t vomit when they take out the ventilator tube. The Doctors have now decided that they want to give Christopher 2 doses of Steroids to make sure that his airways don’t swell up when and close when he is extubated. This was done as a precaution only.

(1 month old) - We moved to another apartment this morning. It is called Max’s Place. http://www.heartsofhope.iinet.net.au/max/max.html It was founded by Tim and Heather Round, who lost their little boy Max in 2002, when he was just 13 days old. Max had heart problems. They bought an apartment right across the road from the RCH to help families who have to stay in Melbourne, whilst their kids have Cardiac Surgery. A lovely tribute to their son, Max.

Chris’s pain and sedation medications have now been halved. He has opened his eyes briefly and looked at me, but he was pretty bombed out and I am not sure whether he knew it was me or not, but he is starting to hold on to our fingers again.

Another stable night for Christopher. He had a chest ultrasound to check the Shunt and they are concerned about a bit of fluid building up around his right lung. No issue at the moment, but this could cause problems when they start to wean him off the Ventilator. So another chest drain is inserted under his right arm. So one drain out and another drain in!!  They are also starting to wean him off the pain killers and sedation tonight to allow Chris to start breathing himself.

Chris had a really stable night and has given the Dr’s and Nurses no trouble at all. He had his chest closed this afternoon, and had one of the 3 chest drains removed. They will keep him sedated and drugged up for another 12-24 hours to make sure he doesn’t take any backward steps.

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.

All packed and ready to go. My Mum & Dad picked us up at home to take us to the WCH to say farewell to Chris. When we arrive there is a neo-natal ambulance stretcher there ready to take Chris to Melbourne. It has a special cot and all the essentials for a complicated medical transport. He will travel with NICU Nurse Caroline and Neonatologist Dr A.R., so he will be in great hands. Mum and Dad say goodbye to Chris and us, as they are leaving to go back to Canberra tomorrow. Greg has one last cuddle with Chris and places him in the stretcher. The Dr’s have started Chris on Prostin to keep his ductus open, to make sure that there are no unexpected complications during the RFDS flight. The ductus needs to remain open until the BT Shunt can be put in place to allow adequate blood flow to the heart and lungs. We arrive in Melbourne and drop our bags off at the apartment, where we are staying, and walk 5 minutes up Flemington Road to the RCH to meet up with Christopher. Chris has just being wheeled in when we arrive, and he get measured and weighed before being placed in a new cot that will be his home, for who knows how long at this stage. All the fussing about has unsettled him, but he soon calmed down once he hears our voices *gush*. The nurses are lovely, and Aaron, the nurse looking after him today calls him “muscles”. We say goodbye to Caroline and Dr A.R. (which felt like saying goodbye to family, as we had been in the NICU every day for the last 3 weeks). A few more tests, for the RCH Dr’s, an ultrasound and some blood tests, in preparation for his operation, scheduled for Monday. After we left that evening, we receive a call from the hospital, telling us that they aren’t able to access any of Chris’ veins for a blood test and advise us that they will be taking the blood from a vein in his head! Poor kid. He now has a bald patch on his noggin and I am now the proud owner of Christopher’s hair from his “1st hair cut”.

All is well with Christopher. He is alert when awake and his eyes following the person who is talking to him. He watches both his Mummy and Daddy intently, which is just lovely We found out at 6pm tonight, that Chris is going to Melbourne on a Royal Flying Doctor Service (RFDS) Flight at 8.30am tomorrow morning. Greg and I will follow on a 9am commercial flight. Chris will be flown to Essendon Airport and then transferred to the RCH, whilst we will fly to Tullamarine and meet him at RCH.

Had a great visit with Chris today. He is now in a hospital bassinet rather than a NICU Cot. He looked so cute in it, sleeping soundly. He had a scan this morning to see if they could take out the abdominal catheter. It looks like they will keep it in for a little while longer, but clamp it off and see how he goes pee’ing the normal way. I fed Chris another 5mls of formula through the bottle, which he gobbled up with great enthusiasm, he seems to be getting the hang of the suck/swallow/breathe combination, though he does get tired, so the rest of his feed is fed to him through the tube in his tummy. We had a bit of excitement with a feed today - his tummy tube started to leak. The surgeon was called down and he re inflated the little balloon that seals the tube under his skin. Crisis averted.

Chris is now free from all tubes on his face. He is a much happier boy. The nasal prongs that blew air and O2 up his nostril have now gone and he seems to be coping quite well. I fed Chris 5mls out of a bottle this afternoon (he still has the rest of his feed through the tube in his tummy) to get him used to sucking, breathing and swallowing all at once. It took about 15 minutes for him to get through the 5mls, but he did it well, albeit with some encouragement.

All the Genetic Testing has come back clear and Christopher does not have a syndrome or disease. The Dr’s say that Chris has VACTERL Association. Unfortunately, Chris has problems in all the VACTERL Characteristics. Even the Neonatologist said that he has never come across a child who has every characteristic, so yes that is my kid - absolutely unique, original and complicated!!

V - Scoliosis and Hemi-Vertebrae and a couple of abnormal ribs on the right hand side.

A - Anal Atresia with fistula between Bowel and Ureter.

C - Ventricular Septal Defect (VSD); Transposition of the Great Arteries (TGA); Double Outlet Right Ventricle (DORV) and Pulmonary Stenosis (PS).

T - Tracheo- oesophageal fistula (TOF)

E - Oesophageal Atresia

R - Multi-cystic/Dysplastic Right Kidney (will never work) Left Kidney small and abnormal in size and shape.

L - Missing Right Thumb and Talipes (Club feet)

S - Single Umbilical Artery

Today Christopher pooed on the surgeon who did the full reconstruction on his bottom. Poetic justice I thought!! He has also had his nasal-gastric tube removed, so he now only has 3 tubes inserted in him, the gastronomy tube (where he will now be fed all his meals - this tube goes through his abdomen, directly into his stomach), the abdominal catheter and a “long line” drip in his right arm. Its a long way from all the tubes and bits and pieces he had in him just after birth. We spoke with the Cardiologist today, who advised that we will be going to Melbourne next week. Christopher will be flown over by Air Ambulance to the RCH in Melbourne and we will follow on a commercial flight to join him. They are going to operate and put in a BT (Blalock-Taussig) Shunt For those interested: http://www.childrenheartinstitute.org/educate/defects/atresia2.htm) to replace the closing ductus in his heart. The Dr’s want to hold off on a full repair of Chris’s heart for the time-being to see what his kidney is going to do.
The full heart repair will require heart by-pass, which can cause renal failure, and seeing as his only working kidney is not in the best shape, they don’t want to push it over the edge just yet, as he is too little for a transplant or dialysis.

Not sure how long we will be in Melbourne for, depends on how Chris recovers from the surgery and when he is stable enough to be transferred back to Adelaide. Seeing as he will be going back to the WCH, its likely not going to be as long a stay, as if we were going to come straight home. Hopefully, this also means that Chris will be coming home not long after our Melbourne trip I also got my first real smile today. I had a 2.5 hour cuddle with Chris this afternoon and when Greg arrived, he got an hour cuddle. When we popped Chris back in to his cot, he was wide awake and we spent ages talking to him as he looked from me to Greg and back again. He was so alert and I got 2 smiles (thinking it was wind - until the nurse said he is old enough to smile now). Talk about making a Mummy’s heart burst with happiness!!! This kid makes it worth getting out of bed each and every morning.

Chris is still on 50ml feeds every 3 hours, he is doing really well, with this. Had a conference with Chris’s Neonatologist, who advised us that his Ductus in his heart is closing, so we have to think about going to Melbourne soon. We will talk to the Cardiologist in the morning