Finally some info on my heartboy

Happy New Year!

It's hard to imagine another year has passed, and a new one begun.

I've meant to post so many times this past month, but each time I start I just can't seem to come up with the right words, and so I stop.

 

My dear, dear little Nicholas came home to us on December 4th. In the past 5 weeks he has settled in so so well. He's such a delight, and my other 3 love him so much. He has decided he quite likes being hugged, kissed and drug around the house by his big brother and sisters.

When he came home I was told a list of foods, miles long that he did not like, and would not eat. The few foods he did apparently like were Pap with sour milk, yoghurt and some fruits. He now eats most everything, and usually ask for seconds.

Hope this will help put some meat on his bones. He's 3 and a half, yet only weighs 10 kgs - 22 pounds.

For those of you that don't know, Nicholas was born with a condition called

VACTERL Association.

If you're anything like me, then you won't have a clue what this is. When doctors told me he had this condition, I actually had to come home and google what it was :)

 

VACTERL association (also VATER syndrome) refers to the non-random co-occurrence of birth defects.

V - Vertebral anomalies

A - Anal atresia       

C - Cardiac defects   

T - Tracheoesophageal fistula and/or      

E - Esophageal atresia

R - Renal anomalies

L - Limb defects

 

Nicholas has been diagnosed with the A, C and R.

I still need to rule out the V, T and E.

He shows some red flags for the V, T and E, so once he's on medical aid I will need to have a MRI done as well as some swallowing tests.

 

One of his biggest medical challenges has been problems with his Urinary tract and this in turn affected his kidneys. He had one kidney removed last year. He was having constant UTI's and the doctors thought they might in part be from this "dead" and infected kidney.

This year he continued to battle a little with the remaining kidney, and I was told it was enlarged and not completely happy. I imagined that in the future we might have to deal with dialysis and a transplant, but in the future - the far off future. . .

 

A few days after he came home to us, I had an appointment with my kids Pediatrician. I asked if she could also examine Nicholas, as I was unsure where to start in regards to specialists etc. As soon as my medical aid kicked in for him, I wanted to know where to begin. After examining him the pediatrician said we needed to take his kidney function tests. Everything else could wait until his medical aid started.

She took the bloods, and a urine sample, and told me to call back in 2 days.

 

The very next day, she called me. She said the results had come in, and they showed that Nicholas was in renal failure. She had contacted the government hospital where Nicholas had been treated in the past, and they had agreed to admit him, and start running tests.

As you might imagine, I was in shock. Renal failure, renal failure, now?

So off we went to the government hospital. I was less than thrilled at the thought of admitting him - especially as he was looking so healthy, eating well, perky. . .

But, if they could begin to sort what needed to be done next, then it would be worth the hospital stay. I spent the next few hours getting the date stamp, weight and height, and seeing the admitting doctor. I was then sent to the admitting ward, and told that renal would be in the see us. A little later renal arrived, and when I gave them the blood results, instead of looking surprised or worried, they said, oh, well he's been in renal failure since June.

WHAT!!!!

He's been in renal failure since June??? Why didn't anyone know this???

Turns out the his levels had become worse, but that he was in chronic renal failure. They then said there wasn't really anything else they could do for us, and no they were not going to admit him.

I obviously wasn't about the just take this info and leave. Instead I asked what we could do. They said I could cath him a few more times a day, but that was it.

They would be willing to see us again in the middle of January (it was early December).

I left the hospital shaking my head, and feeling completely unsure about what to do next. My son was in renal failure, but there was nothing the hospital could do? How did this work? What was I missing?

 

Thankfully the home where Nicholas came from had contacts to a private hospital. The Urologist there agreed to see us free of charge, and we made an appointment for the next week. I went through the week in a bit of a daze.

 My son was in renal failure. What did this mean for him, for us? What treatment options were there available for him.

I started researching renal failure on the internet, and learned that there were 5 stages. 1 being very mild, and 5 being "dead kidney".

I had no idea where in this staging Nicholas fell. How much time did we have before his kidney failed?

 

The day finally arrived when I had his appointment with the Urologist. I walked in, and his first words to me were, "you've certainly adopted a sick little boy. He won't make it to adulthood".

Again I said WHAT!!!!!!

He explained that in SA Nicholas wouldn't qualify for a transplant as they've been unable to solve the underlying problem, and so he will just continue to kill kidneys. There are apparently also very limited dialysis facilities in SA and they tend to give treatment to the patients who have the best long term prognosis.

In government hospitals he would have no chance at getting dialysis, and in the private sector there was slightly more chance that he might, short term, but there were no guarantees.

The Urologist said what we really needed to do was keep Nicholas' bladder empty. That would take pressure off the kidney, and might give it a little more time. So I'm now cathing him every 3-4 hours, and at night I tape it in, so it drains all night.

I've been going in every week for blood and urine tests so we can track his kidney function. Every test showed decrease in kidney function, until last weeks, which showed a slight improvement. His urine test 2 weeks ago also showed that he had a UTI that was resistant to most antibiotics. We tried him on one of the few oral antibiotics that did not show resistance, and retested him a few days ago. The new results showed he still had the UTI, it had become worse, and was resistant to even more antibiotics. The government hospital wanted to admit him to administer IV antibiotics, but I begged we try something else, anything else, to keep him out. Once he's admitted he's usually in for 2-4 weeks. I start teaching on Monday, so if there's anyway to keep him home, and sort, I really need to.

They gave him the last possible oral antibiotic, and said I must take another urine sample tomorrow, and see if it shows any improvement. If not, it's into hospital for Nicholas :(

 

On a day to day basis Nicholas seems so well. It's sometimes hard to remember that his kidney is on its way out.
Then I find out things like, his kidney function levels put him at renal failure stage 4 . And I send his results to Canada, and renal professionals say that in Canada he'd already be on dialysis and they would be prepping him for transplant, and then my stomach ties itself in little knots, and my brain feels like it's running circles. . .

 

Through all of this, I am so thankful to know that my God is still in control.

I'm so thankful that I was given custody of Nicholas in such a short time.

That we do have the option of going to Canada for treatment.

I think of all the poor parents here, who have no other options, no other possibilities, and my heart breaks for them.

 

At the moment I'm waiting for his adoption to go through. I'm hopeful that it will go through this month, next month at the latest. Then I need to start planning citizenship or medical visa's or, or, or. . .????

If only I knew how long his kidney had, then I'd better know how to plan. But I've been told that children can go very quickly from relatively healthy (where he is now), to very, very ill.

So, I wait, and keep tabs on his kidney functions, and pray, and pray, and pray. . .

 

Last year was such a full year. Pamela's and Musa's adoptions through in August. Starting the adoption process for Nicholas Sept 30th, getting custody of him December 4th. . .it's been one full year!

However, I have a feeling last year could be nothing compared to what is in store for this family in 2014.

I hold tight to the verse "I know the plans I have for you, says the Lord. Plans to prosper you and not to harm you. Plans to give you hope and a future."

I hold tight to these words, and dedicate them to my dear little heartboy.

Oh, the plans God has for him.

I may not know what they are, but I know they are plans to give him hope and a future.

So, if you ever think of us in the days and weeks to come, please just lift a little prayer on our behalf. Pray that Nicholas will find treatment, when and where he needs to. That God will continue to bring along health professionals with the knowledge and heart to help my little boy.

 

I'll leave you with a picture of my dear one. . .

 

 

Until next time,

Best wishes from Africa