Grab A Coffee

It is time for a large blog post. I wanted to update this blog last night but was sort of under the weather due to a bottle of champagne... I swear it poured itself down my throat. In all seriousness it was a way for me to cope with all we were told at the hospital yesterday. So grab that coffee and pull up a chair.

For those who are not aware let me just give you a a brief overview. My youngest son Justin aka Shrimpy suffers form Chronic Renal Failure as well as Failure to Thrive... The renal condition has the fancy name of Hypodysplastic Kidneys. Sounds weird huh. Basically in layman's terms this all means his kidneys have never worked properly his entire life. He will be 16 on the2nd March. So for the last 16 years we have had numerous treatments to get him to bulk up, to grow & to just be well. Over the last few months we had noticed he was walking with a pronounced limp as such. It was more acute when we went away camping before Australia day weekend. Whilst away I rang his specialist in at Westmead Children's hospital...making an urgent appointment for him to be seen. That appointment was yesterday at 1pm. Ok are we comfy? Ready for the long part.

In this appointment I went in to see Dr Lewis before Shrimpy, wanting to vent my concerns & possibly have some reassurance given to me by this wonderful doctor. Anyway I sat there and told her how he walks like an old man & that his bones appear to have issues. I pointed the left forearm where the break was a few years ago now...it is bowed not straight at all. I also pointed out the wrists as to how they do not appear to look normal. Also how is is always tired...and I do mean ALWAYS. He can sleep for 12 hours & still want more sleep. I also pointed out the issue where he is nauseated much of the time & wont eat. The thing to remember with Kidney kids is that they do not have much of an appetite to begin with so for him to not have one at all is rather disturbing. I cried as I was telling her this hoping it would make me feel a little better. Once I had finished she asked me a few questions and wanted my honest appraisal - Did I think his kidneys were shutting down for good? YES was my answer. I truly believe we have approached that time in his treatment where we need to take in hand the ideas of dialysis as well as transplantation. Dr Lewis called Shrimpy into the consultation room and asked him a series of questions as to how he felt, if he was feeling nauseated, was he itchy? She then took a look at his joints and confirmed that it was related to his Kidney's as to why his bones are as they are now. So after a little more discussion she agreed we are at that time to look at further treatments *sigh* So dialysis has now been discussed & we have options on the table. There are two kinds of dialysis to choose from....problem being is he is too underweight to have the fistula put in.

We had blood tests done & we get the results on Monday -- from there we decide the best course of action. If they are as bad as we suspect then Shrimpy & I will be moving into Westmead Children's hospital for a few weeks. We have to pull his birthday celebrations forward as he may be in hospital by then. When he is admitted he will be getting his PD Catheter inserted into his stomach as well as a gastrostomy put back in so that he can be fed all minerals etc required for the a growing who wanted to get her sone so much better. So the time line sort of look slike this:

Monday - results back in ...it will be discussed and there are some changes coming. IF it is as bad as we all suspect it to be he will have to stay there for roughly 3 weeks -- that means me too. There wont be any mucking around -- we want to try to halt this process or more to the point we want to make him a little healthier so he can cope with the transplant.

So after Monday I will post an update but the reason for the heartbreka is because I have carrie d this for 16 years & I am happy I am finally at the winning post so I can back the winner.


Blog Soon -- with new LO's