Update on Alyssa - April/May

Hi Friends, Sorry I've been MIA for a while - we've had houseguests 5 weekends in a row, numerous trips to hospital, and normal everyday stuff in between. Mandy's been over from Perth and we had fun at the Copics Projects Course in April, and the Printblocks Creative Block with Tracey earlier this month.

Here's our "Chief Delegator" Mandy enjoying the nightlife in Brisbane .....

while Tracey and I were busy working ...

On my last post, we were waiting for a rescheduled date for Alyssa's surgery. Originally the surgery was to insert a line into her tummy (for the Peritoneal Dialysis (or PD), and remove the catheter going into her heart (used for the Haemodialysis (HD). Unfortunately, a few days after the cancelled surgery, Alyssa had to start back on the Haemodialysis. This meant that they now couldn't remove the original catheter until the PD had started - which therefore meant two surgeries instead of one.

Anyway, we got a date for the first surgery - Tuesday 19 April. The day before, we spent the day as usual in hospital with Alyssa having her dialysis, but then she started to feel quite nauseous on the way home. By 7.30 that night, she was vomiting so violently that she popped a rib. Then her urine turned bright red again, and she was so sick she asked for an Ambulance to take her to hospital. We rushed her in and had 3 doctors immediately attending to her. Their first thoughts were perhaps a blocked bowel, an infection in the line leading to her heart, or perhaps a urinary infection.

Thankfully it was none of those things, so tests were then done on her liver and gallbladder. Also, something weird was happening with her blood - a number of blood tests were taken, but they were unable to conclusively get any results. Obviously the surgery was cancelled for Tuesday.

The vomiting finally stopped Wednesday morning, and as all tests had so far come back clear, they decided to go ahead with the surgery on the Thursday. It went well although the poor darling was in extreme pain (they called me down to recovery to help comfort her). They gave her plenty of painkillers, so much so that she was also on oxygen for a while. Then on Friday during dialysis, her line completely clotted off which automatically stops the machine. They tried to give her some medications through the canula in her arm, but unbelievably that had clotted off too. I was then obviously concerned about any clots going directly into her heart through the line, and about 1.30am on the Friday night she started having chest pains. The pain seemed to be more in her lungs than her heart, but they organised an ECG and chest x-rays to be sure. They also tested for the return of the Goodpastures Syndrome, as if she gets it back, it will be in her lungs.

It would have been one of the worst weeks we have had, and in the end, they couldn't find anything. No diagnosis for all these things. Good - but frustrating. We came home late on Saturday night, and she then recovered quite quickly.

While she was in hospital, Alyssa received a visit from two Easter Bunnies - one very suave...

the other very cheeky...

I love this photo of Alyssa with her Dad.

And here she is getting her Easter basket ready on the night we got home.

Since then, we've had a few intensive days of training for  Peritoneal Dialysis, had 2 pallets of boxes delivered to the house, and I am now doing the dialysis myself - 10 hours a night - scary. We've also been able to bring her blood pressure down (finally) with a new medication. There are a few unwanted side-effects, but we can live with these.

We now wait for a date for her next surgery (to remove the catheter), then the next step is meeting the transplant team. Although transplant is not possible before January, we want to be as ready as possible before then.

The year seems to be going so quickly on one hand - but really dragging on the other. If only there were more hours in the day. It's strange how your life can completely change - and a funny example happened when Mandy was recently staying with us, and we were all sitting around the dinner table. Now, normal dinner conversation would be - "How was your day?" "What did you do at school today?" etc. etc. But this was us - "What was her blood pressure this afternoon?" "How were her levels at the hospital today?" "Have you had all your tablets?" It didn't occur to me until I looked at us through Mandy's eyes, and thought it was absolutely hilarious.

Anyway, we're all getting there, and thankful every day we're all still together. My eldest celebrated his 17th birthday on Thursday (I can't believe it), and we all had a wonderful day.

Alyssa and I whipped up a "cookies & cream" cake ...

And we enjoyed a special birthday dinner at a steakhouse ...

Stay tuned for the next update which will outline all the fun we're having with the PD - not to mention what we've done to the machine.

Thanks for checking in.
Till next time,
Tereesa & Alyssa