Roadtrip done and dusted

Well, we have done our roadtrip to the ABR clinic and returned yesterday from Sydney.
All in all, Harri travelled well. 2 days to get to Sydney, 2 days there, 2 days to get back. He really was over it by the last day. Although we had left ourselves only 450km to travel, it took most of the day to get here.
The clinic was good, with new techniques (the egg) and improvements to the supercharger. It was a little disappointing to get the conformation of very little change for Harri since the last clinic. But that was expected, given the surgery and the problems we have had since. I will post again soon with more feed back from the clinic. cheers for now, Matt

Getting ready for a road trip

Harri and I are getting ready for our road trip to Sydney. The next ABR clinic begins for us on Friday. We are driving down as it will be to difficult to commute in Sydney without a vehicle and all the stuff we need to cart around with us now. Report back soon.
Regards Matt

Titan's game

Harri went to a Titan's home game last weekend, against the NQ Cowboys. The Titan's got away to a good start, but some poor luck got the Cowboys back into the match. From there, the Cowboys had the edge, with the lead seesawing, the Titan's still in it until 4 minutes to go. In the end the Titan's went down 28-20. It just has not been their season, and they may just get the wooden spoon.

regards Matt

feeling better still

The last week has been the best since Harrison's recent surgery. Harri is feeling better and although we still have some moments where we get into difficulty, he is much better at settling himself and not fully reliant on me being there to reposition him constantly.

We are jammed up with clinic appointments, visitors and just getting the everyday things done. next week should see us with more time to settle back into a routine. We really need to get back into our ABR routine as we have an up coming clinic in early August. We have not had much time for ABR recently and also missed the clinic earlier this year. So i have to get us back into the routine to make the most of the clinic.

Harri recently received a bundle of balloons from family that really cheered him up and brightens up the room. I have attached a photo. They are in his favorite colours, that of his team the Gold Coast Titan's, although they need a lot of help this year, they are not going so well. Harri will be attending their next game on Saturday 23rd at Skilled Park. Look for us in the crowd.

Regards Matt

Breaking down the issues

Our recent visit to the Royal Children's Hospital in Brisbane, and their approach of breaking down the issues into more manageable size issues, has Harri well on the road to recovery.

While Harri was getting pain from the recent muscular surgery, possibly from the nerves at the back of his knees being stretched because his legs now straighten completely. The only way to tell for sure would be a nerve conduction test. But we have be reassured that the nerve pain will subside over time.

Complicating the pain in his legs, Harri was getting abdominal pain and was also having trouble with his breathing ( laryngo spasms ). What we were not aware of was that until now, when ever we were in the hospital, Harri was receiving 1/2 the dose of Omeprazol. A drug that had been prescribed to reduce the acidity of his stomach. This is because Harri suffers from refluxing and occasional blood in his stomach. At home we use a more user friendly form called Nexium, but this is EsOmeprazol, and twice as strong, but the Mater did not pick up on this, the Royal did. As Harri is almost adult size and weight they also took the measure to give an adult dose, and raised the Omeprazol to 4 times what he was given at the Mater.

We were also informed at the Royal of the strong link between reflux and laryngo spasms. with this in mind they also decided to remove all Neurofen from Harri's medicine list, as this can increase the acidity of the stomach. Since implementing these measures alone, Harri has had a great reduction in the amount of breathing difficulties.

A review of his diet also noted the high fibre formula the Mater had prescribed, had been making him blotted and adding to his discomfort. A new formula for 1 week has seen a significant decrease in the amount of blotting Harri is suffering.

Although Harri is still getting some break through pain from the nerves in his legs and some abdominal pain from gastritis, these will both settle down over the next couple of weeks. Harri is much more comfortable than he has been in for weeks.

Regards Matt

Gaining control

Gaining control over the chronic pain. After another 1 week in hospital ( the Royal Children's this time ), Harri is getting control over the chronic pain. The Royal has the only chronic pain management team for pediatrics in Brisbane. They have put us on the right course. Unfortunately while we were in hospital Harri developed pneumonia ( potentially life threatening condition for Harri given his respiratory problems ), but they got it early and he is well on the road to recovery from that and the surgery, from 8 weeks ago.

It is good to see a smile on Harri's face again.

Regards Matt

The obstacle to recovery

The obstacle to recovery is Harri is in chronic pain. We have been back to the hospital this week for 2 days, for chronic pain. Harri is now on morphine patches and they don't know why he is in pain. We are 7 weeks after surgery and they agree he should not be in this much pain. So we have been referred to the chronic pain clinic at the Royal Children's Hospital in Brisbane.

Regards Matt