Thursday, June 11, 2009

Catching Up

This is surely the longest post I have ever done...its quite like a novel. Make sure you have a few spare minutes, sit back, read and relax...and don't nod off to sleep!
This post may come as a surprise to some of you, and not so much for others. Cayden has had many dreams for his life and I believe that one of them is about to come true. Cayden is about to begin receiving Growth Hormone injections! We know all the pros and cons and feel blessed that he is finally being given this opportunity.
Cayden has always been short and has been very slow to grow. Growth is charted by age on a percentage basis on standardized growth charts. Most traditional charts end at 3%--meaning that at that point there are only 3% of the population shorter than you. About the time Cayden turned 6 he "fell off the chart", meaning he was lower than the 3% mark. He has generally calculated to be at or less than 1%. We thought that that would be enough to qualify for some type of treatment...but that was not to be. Both his endocrinologist in Texas and North Dakota decided to ignore follow him instead. Every 3 to 6 months Cayden was brought into the office and comprehensively measured (by that I mean, they measured overall height and weight, the length of arms and legs, arm span...you name it) and we were sent on our way. In a cruel (or funny) twist of fate, it seemed that Cayden would always have a small growth spurt before his visit. He did not grow AT ALL for 5 months, but would then grow 1/4 to 1/2 inch in the 2 weeks prior to the visit. We were told repeatedly that you never want to do growth hormone deficiency testing when a child is growing...so even though the normal growth rate per year is 2.5 inches and we were never remotely close to that, we were always given a pat on the back and told "See you in a few months". It has been frustrating for us but a thousand times more so for Cayden. He has tried valiantly to not let his height bother him on a day to day basis but its become harder of course as he got older.
About two months ago Cayden had another visit with the endocrinologist and we were sure it would end the same way. After measuring him and plotting his numbers the doctor turned from his computer and started to say something. I interrupted him and said "I know, see you in a few months". He chuckled and said "No, we definitely need to do something, and do it now". My eyes got misty and I made him repeat it. He said that Cayden had not grown even a millimeter during the past 16 months, making this the first good opportunity for testing.
Testing sounded easy...go to the lab, get blood drawn, wait for results. Turns out, it isn't so easy!
The test they ordered was a Growth Hormone Deficiency Stimulation Test. Cayden had to be admitted to the hospital for the day (see picture above). They put in an IV line almost immediately and explained the procedure in more detail. They would be giving 2 different stimulant drugs through the IV and would also be drawing blood every 15 minutes through the IV! Because the drugs they were giving would stimulte his overall system, and because they weren't completely sure how his heart would react to the stimulation, he was put into the Pediatric Intensive Care unit for the test. He had been unable to eat or drink anything (including water) for the 12 hours before the test so he was ready to get it over with.
The beginning of the test was a breeze. The first drug introduced was arginine and it was not supposed to have any overt side effects. For this reason, they let him have some ice water and let him order a movie to watch. The picture taken above is from this time span. He looks like he is reclining in a hotel bed...and for the most part it was. The IV was in by now and he couldn't feel anything each time she drew blood. It looked like the day might be easy...that was not the case.
The second drug they gave was insulin (which sounded fairly innocuous, but wasn't). It was then she explained that they needed to get his insulin low enough for his body to approach a "diabetic coma" without actually doing so. She said she had glucose on hand in case we had trouble but she needed his glucose to be 40 or less for the test to work. 15 minutes after giving the insulin his glucose was 19! She said she was "concerned but not worried"....I, on the other hand, was worried! His body began to react to the challenge appropriately but it was a long 2 hours. He began to sweat profusely, became disoriented, and eventually "passed out" from a combination of low glucose and exhaustion. As bad as all of that sounds, our bigger concern was his heart. His blood pressure and pulse rate skyrocketed. It brought back horrible memories of standing next to Cayden in a hospital bed, running my fingers through his hair to calm him, staring at monitors as if they were the actual lifeline, and praying. As his glucose came up the symptoms abated (his pressures and pulse were still elevated a bit when we left but they had him on activity restrictions for the next 24 hours and felt things would return to normal soon...and Thank God, they did).
The blood samples were sent to the Mayo Clinic to be run and the 2 week wait for results was agonizing. The results show a "definitive growth hormone deficiency"....music to our ears. At least someone had finally tested him and actually found something wrong, something we can fix. We also had to do an MRI to rule out structural abnormalities of the pituitary gland or tumor. We got the results this morning on the MRI and everything was normal.
What happens next is another exercise in frustration. All of his charts and results were faxed to the insurance company and the company that manufactures the type of growth hormone he needs. We need to receive approval from both of them before we can get started. The doctor's office hopes that all of this can be accomplished by the beginning of July...cross your fingers and say a prayer that this is true.
Cayden knows that he has alot to dread and look forward to...he will take daily shots (given by Mom) for up to 4 years....but he also knows that he has many inches in height and immeasurable gains in confidence to look forward to. To those of you who knew nothing of this story I apologize...its been a long road and we hesitated to talk about it much until we were fairly sure of the outcome.

2 comments:

Bobba said...

We are officially blogging!

Thare said...

PTL!