Day +50: Half Way There!

We've hit the half way mark!

Well, the half way mark for the isolation period anyway. I was a little bit excited today when I realised that we were at Day +50. So far, so good. I could finally see the tiny flickering light at the end of the long, long tunnel.

The first 50 days seemed more like 50 weeks. Some days felt like 100 hours instead of just the stock standard 24. Some weeks felt like months. But then, on the flip side, some days I'd blink, and it was all over.

Sean was going from strength to strength. Apart from the constant runny nose, the cause of which we were certain was related to the NG tube, Sean had not suffered any illnesses or shown any signs of developing Graft-Versus-Host Disease (GVHD). Our doctors were happy with Sean's progress, and each week, their smiles said it all.

We started the outpatient journey with 2 visits to Clinic per week, and Sean was on 2 immunosuppressants to fend off GVHD, 1 medication to fend off Veno Occlusive Disease (VOD), 1 antibiotic to fend off the bug that causes Pneumocystis carinii pneumonia (PCP), 1 antibiotic to fend off any fungal infections, and 1 medication to help alleviate Sean's nausea.

Today, we are down to 1 immunosuppressant and the 2 antibiotics. We'd even stopped the medication to help ease Sean's nausea. Well done, little man! Daddy and I are so proud of you!

Although the doctors continue to be cautious about declaring the transplant a complete success, we were happy that Sean was on the right track towards that announcement. Every week, Dr Trahair told me that Sean may require readmission at some stage, as "all transplant kids do require further hospitalisation", but so far, Seann had not shown any cause for readmission. According to the literature we were given, about 40% of transplant patients do not develop any complications post transplant, so we were hopeful that Sean was one of the 40%.

With Sean being so well, our doctors were happy to relax our conditions of isolation, allowing us to visit the shops provided we took all necessary measures to keep Sean safe from germs. Sean and I had enjoyed some shopping trips to Macquarie Shopping Centre and Top Ryde Shopping Centre - we only went on weekday mornings before the lunch rush, and Sean always stayed in his pram, wearing his mask. Our shopping trips were not leisurely ones - we always ran in and out and only stayed as long as we needed to.

Of course, we'd had visitors and paid visits to others during the isolation period. Our wonderful family and friends were incredibly considerate and always let us know if they were feeling unwell prior to our arranged meetings. Jonathan and I had become very strict with who could come into contact with Sean, and we were very grateful that our loved ones were understanding about our rules.

Our little man was filling out nicely, and he was now a sturdy, stocky toddler who was full of energy and mischief. If you ignored the NG tube taped to his face, Sean was just a regular toddler who ran here and darted there, all inquisitive and cheeky, all day long. The Cyclosporin A was giving him very bushy eyebrows, and there was noticeable hair all over his little body. This was always expected as increased hair growth was one of the side effects of this immunosuppressant. Sean was turning into a little werewolf!

Our little boy just gets cuter and cuter every day. We feared Sean would fall behind developmentally speaking, but apart from being a bit behind with the eating, and the lack of real words, Sean was on par with kids his age. Sean was not really keen on any food that he needed to chew. He was only interested in food that he could more or less swallow without choking. At 16 months, Sean was still eating food that was suitable for 8-month-olds. Anything lumpy or required chewing was refused, with the exception of cheese - Sean liked cheese, and would happily feed himself cheese cubes. He liked cooked carrots too, and was known to eat almost a whole carrot in one sitting.

The focus for the next 50 days will be to get Sean to eat more food and drink more fluids by himself. Sean was not keen on drinking water out of his water bottles. When offered a cup, he would take a couple of sips of water before losing interest. Certainly, Sean was not keen on drinking formula or milk at present - when we went into hospital, Sean was still drinking formula out of his feeding bottle, but once he became ill, he stopped drinking his formula, and by the time he was well enough to start eating and drinking again, he did not like the idea of drinking out of his milk bottle. I will need to concentrate on getting Sean to eat more food, and learn to drink out of his water bottles and sippy cup over the coming weeks. I don't know how to convince Sean to do either of these things, but I hope I succeed. It would be nice to have a "normal" little boy who could feed himself and drink his fluids as well!

Keep up the great work, little man. We need to get through the next 50 days, and then we can resume our "normal" life again. And hopefully, by then, you will be able to eat and drink on your own, without the help of an NG tube. It would be nice to kiss your lovely little face all over without the tube and those nasty sticky tapes!