A Lot Can Happen In a Single Day

It has been almost 36 hours since I last wrote and alot has happened since then. I guess I will start with what everyone wants to know. How were the results of the T and B cell markers? It took a while since the results needed to be reviewed by the appropriate doctors but they finally did make their way to us by early afternoon. Parker will have to remain in isolation for at least another week as his T-cell numbers are not high enough to go home. As a result of the PEG-ADA injections his NK-cells and B-cells have increased quite a bit. Unfortunately his T-cells have not. Yes they are higher than they were when we came to Sick Kid's but they are extremely low still. When Parker was admitted he had 9 CD4+ cells and 1 CD8+ cells. He is now at 39 CD4+ and 15 CD8+ cells. These are the TH and TC cells respectively. The normal range is much higher than this. To give you an idea, people who are HIV+ have their CD4+ attacked and depleted. When they finally do get below 200 CD4+ cells they have to take medication for their HIV. Again, Parker currently has 39 CD4+.

What does this mean? It means we are not going home next week. The test will be repeated next week to see if his numbers have continued to increase or they remain similar to what the test revealed today. Apparently his results were expected and are not concerning. Let's just pray that his numbers do rise when they do the next flow cytometry test. That said, we are pleased that his NK and B cell numbers did have a much more dramatic rise.

I have mentioned quite a few times in the past that Parker's weight has increased quite dramatically since coming to isolation. What I have failed to mention is that his head circumference has been doing the same. Parker was born at the 50th percentile for his head circumference and when his measurements were done yesterday we were told that he is now in the 90th percentile. I figured it is better to have a big head then one that is too small. Seen the movie Beetlejuice? Well, since his head has grown so quickly and not remained at the 50th percentile an ultra sound of his brain was done to see if there was something abnormal about it. Parker slept right through the ultra sound like a good boy. The test came back by the end of the day and displayed no abnormalities in his brain. To be honest, I have not been charting head circumferences but I did just recently take a look at where Parker is on the chart and it reads between the 55th and 60th percentile for boys. If you look at where his head circumference is for girls it is the 90th percentile.

Parker has also switched formulas again. I had mentioned that he had moved to the 3300 KJ/L formula a couple of days ago. Yesterday, he moved to regularly concentrated formular (2800 KJ/L) with sugar added to increase the calories to 3300 KJ/L. By being on concentrated formula, he is receiving increased amounts of the different vitamins and minerals as well as calories. Parker's CBCs have been coming back with elevated values for calcium and magnesium and most recently potassium. By using the normally concentrated formula with sugar, Parker is receiving the regular amount of vitamins and minerals and we hope it will bring his electrolytes (calcium, magnesium, and potassium) into the normal range. Parker spent Thursday on this new formula. Recently, I have spoken with the dietician and we have decided that Parker does not need to continue to grow at 35+ grams/day and that normal formula without glucose will suffice. Parker started normally concentrated formula today.

So, alot has happened in the past 36 hours. Maybe I need to write more often? Actually, once a day should be fine. Thank you again to everyone who has been visiting this site and supporting our little boy in his fight against ADA deficiency causing SCID. Come back tomorrow to see what the next 24 hours bring.