So that is why I have waited to blog - I wanted to focus on Sam and making sure we could do everything possible to make the positive changes stick.
Sam has been coping fine without intravenous feeds. We have been hooking him up to his 2 feed pumps (into his Jejunum) for 12 hours every night as usual, BUT we have also been giving him manual bolus feeds directly into his stomach 5 times a day. The team wanted us to get him up to 3 feeds of 100 mls, but we found he started gagging or vomiting once we hit 80 mls, so not wanting to ever go back to TPN, we have been giving him 5 x 80 ml boluses. Each Saturday I weigh him and let the team know how he is doing. So far so good - 20.8 kg, 20.8 kg, 20.1 kg, 20.3 kg. So although he had a little dip, he seems to be holding his own. I am trying to give him more calories if possible so that we can add some meat to his bones.
Each Thursday I access his PICC line in his arm by drawing back the strong heparin, flushing it with saline and locking it off with fresh heparin again. We need the line so I can do monthly bloods (tomorrow). The team also wanted him to keep the line so we could give him IV antibiotics if necessary - BUT this is the next fabulous news.
We convinced the medical team that reusing urine bags (I get one per week and have to wash/sterilise it and use it 7 times each week) was potentially one of the biggest sources of infection - I have always doubted that reusing the bags, which have a 30 cm skinny neck that you can't actually clean (but could leave soaking in Miltons) would never actually have become sterile again. To me it seemed nuts that we have to clean his urine access site, use a clean catheter and sterile wipes each time, then hook up a bag that probably was dirty. Anyway, our fabulous nurse specialist managed to make it happen that we are using clean bags every day on a 6 month trial. It is being done as a proper clinical trial, so that if the outcomes are positive, the team would then use that information on other patients that regularly get urinary tract infections and also currently have to re-use bags. Well Sam hasn't had a uti since we started using clean bags 6 weeks ago - this is the longest stint without a uti since March 2014! The difference to him (& us!) is probably bigger than getting him off TPN. I know each medical department have their own budget to protect, but surely the bigger picture of the cost of a daily bag (from our home care budget) is much less than the cost of ongoing hospital admissions, expensive antibiotics, not to mention the loss of schooling to Sam and how much his body has to cope with in regard to pain and antibiotic resistance. So, potentially, as he hasn't been needing the PICC, it may be taken out in the next week - NO LINES!!! Just a GJ, poop bag and 2 urine drains - woo hoo!!!
Sam has started back at school today in his winter uniform - long woolen socks and shoes. The smallest socks had the heel nearly at the back of the knee, so they have been washed in boiling water and dried in a hot dryer - still too big, but not laughable anymore. They are folded over many times otherwise he would need suspender belts!
On May 21st Sam will again be a patient for the Australasian Medical Exams. This is where Drs from around NZ/Aussie are examined... so naturally they need patients that they don't know, to be tested on. This will be my third year doing this, and although it is a long day, Sam copes well as long as he has cars to play with, and it's nice to be able to give back to the profession that has done so much for him.
Also I have been asked to be on the newly created, 'Clinical Excellence Committee' at Starship and ADHB. This committee is made up of 12 hospital managers, 1 Maori Rep and 1 Consumer Rep.... I am the Consumer Rep. The meetings look to be monthly with pre-reading involved. I'm not sure I will understand a lot of what will be discussed, but I do see it as a privilege to have been asked and I hope that my perspective can help advocate for families and keep patient care at the forefront of medicine. It will be odd being at Starship without Sam present!!
Sam seems very happy, although he does try to get out of having his boluses, as it is a strange sensation for him. We continue to work with him to try food, but he is very reticent to and very stubborn - but his strong will surely has got him this far!
I leave you with a picture of Sammy helping us set up the caravan at a weekend away! Hopefully the next photos will be of him without a PICC line and the other of the TPN company taking away his pumps, pole and trolley!