Hello Everybody! Apologies for the lack of updates lately. September was a very busy month with a lot of stuff happening. In the most part, Max has had a very good time of it since we last updated you all. Over about a three week period during September, he really came ahead in leaps and bounds; he began to walk unassisted, his speech (and his ability to make demands) improved out of sight and he now wears big boy pants during the day i.e. no nappies. Over the past couple of weeks he has been laid low a bit by a cough and as we found out last Saturday, an enlarged liver (more on that later). The doctors don't seem too concerned by the latest turn of events and we think he is still ahead on where he was at at the start of September so hopefully this is just a little speed hump.
So when we last left you, we had just discovered that Max's bone pain was caused by nothing more insidious than bone fractures, brought on by the poor strength of his bones. As we have mentioned in previous blogs, one of the side effects of the large doses of steroids he had been taking is that they reduce the amount of calcium the body is able to be absorbed, which can in turn can induce osteoporosis. Having narrowed down the cause of the hot spots, the decision was made to give Max an infusion of
Bisphosphonate via Mr Hose, a relatively painless exercise, to help try and improve the ability of his bones to retain calcium. We noticed an almost immediate improvement in Max. Not only had Max had trouble walking and putting weight on his legs, almost every time we picked him up, he would let out a little yelp of pain if weight was put on his back or if he had to twist or turn. Within a few days of the infusion, these symptoms were gone. Needless to say, after all the bone scans, x-rays and daily visits from the nurse to give, as it turned out, unnecessary injections of antibiotics, this was a major relief. Depending on how he goes, he will most likely have another infusion down the track.
To help the fracture's in Max's spine recover, the doctors decided to prescribe Max a back brace. A couple of weeks after having it fitted, Bee and Max went in to hospital to pick it up. On trying to put it on Max, Bee discovered pretty quickly that it was not a very good fit for him. So we have given up on the idea of the brace until we have an appointment with the osteo surgeon this coming Tuesday.
Blood counts, blood counts, blood counts. They have been over the shop lately. His red blood counts (Hb) are just below normal range - but stable. Somedays platelets are good and the white counts are down, other days its the other way around. It's worth mentioning that during September he recorded his highest platelet count ever: 177! Thats in the normal range (between 150 and 450). Considering that one of the main symptoms of the illness he had before the transplant was low platelets, this is some cause for celebration. They did go down to about 48 but are now up around 80. Haemoglobin was last counted at around 95 (normal is above 110). Neutraphils went down to a very low 0.3 so they decided to give Max a single injection of long acting GCSF. At last count they were back up to around 3.0.
As you may recall Max was fitted with a Hickman line prior to his transplant (around 7 months ago). Very simply, the Hickman line is like a hose or tap surgically inserted into a vein in the chest that saves having to use a needle to give medicine intravenously and to take blood samples. Max very quickly got used to having a couple plastic lines hanging from his chest, but with all the troubles he has had with his skin, it was very difficult to keep Mr Hose's protective covering ('raincoat') on. The covering not only helped keep the exit site clean it also helped prevent Mr Hose from being pulled out accidentally, which in Max's case was a real possibility, given that the cuff on the line that was supposed to bind with Max's skin had also come out. And as handy as the Hickman line is, it is also a source of potential infections. For all of these reasons, Bianca had been gently nagging the doctors during the last few visits if we could have Mr Hose removed. Two weeks ago, we got our wish, and with far less effort than it took to get installed, with a gentle tug from the nurse, Mr Hose was out! Bathing Max all of a sudden got so much easier as we don't have to worry about Mr Hose taking an unplanned swim. Bee has noticed that as Max is lowered in to the bath he still goes to hold his chest where Mr Hose used to sit. Mr Hose, you're gone but you wont be forgotten.
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| Pre Mr Hose removal |
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| Post Mr Hose removal |
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| Enjoying bath time |
So that brings us up to the end of September. Not on Max's last regular appointment but the one before (a Tuesday), Max had an IVIG infusion as the tests of his immune function showed that it was not where it should be. This made sense as he had the sniffles and a bit of a cough. He spent a lot of the week taking it easy, watching a lot of Top Gear and generally not wanting to do a lot. His appetite was also diminished. On Friday morning, he was sitting quietly on the couch, having a bit of a coughing fit when he vomited up his breakfast and morning medicines. He did the same thing again on the Saturday morning, so after calling the ward to get their advice, we headed on in to emergency at the Childrens Hospital to get him checked out. Bee and I of course were fearing the worst and that Max would have to be readmitted to give them a chance to take a better look at him. Some tests were ran, and apart from a slightly enlarged liver, everything checked out ok. The suspicion was that it could be a bit of the GVHD manifesting itself in the liver so his dose of steroids was dramatically increased for the next few days to try and knock it on its head. Crisis over. Not only were we home by five, giving us time to get ready for the Challenge Ball that night (Challenge being the charity that does a lot of work on the ward and helped us out a lot during Max's time in hospital), we missed out on having the chance to watch any of the Grand Final! Win Win! By the way, we had a great night out at the Challenge Ball; thanks to those that came along and made it such a fun night out.
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| Bee, Tommy G and Tim |
Max has still been pretty flat this week, but we are hoping that he'll get over it pretty quickly.
Cheers,
Timmo
Hi, Bee here..... I just need to add in a few thank-yous, to:
- Ephie, Manny and Conner for the very well received Top Gear gift.....some say it maybe tacky, but all we know is Max enjoyed it immensely!
- Paul S and family for the present for Max and the very generous gift for Tim and I....still waiting for that special time to indulge in it .... hopefully it's no too far away?!
- Yvonne, albeit belated, Max enjoyed the next transformer in the series.......and thank you to Linden for stopping by to drop it off
- The Martins for the great dinosaurs and snakes, much fun has been had!
- Aunty Jo for the special lantern and delicious meal
xxx
