Thursday, March 24, 2011


Last week Kaitlyn had another blood transfusion. She had blood work done on the Tuesday and her hemoglobin was 71! We went in on Wednesday for a very long day in house. They couldn't admit Kaitlyn as our hospital is very short on rooms right now and is full of RSV! We do NOT want to be anywhere near that stuff. We were given our own room and our own nurse (thanks Linda!!) in the Medical Day Unit. Because it was a Wednesday we also got to see Kaitlyn's pediatrician who does rounds in our hospital! It was so good of her to see us!! She arranged for us to meet with a nephrologist to try and get this hypercalcemia under control.

The nephrologists believe that Kaitlyn may be leeching calcium out of her bones. This can happen when individuals are immobile for entended periods. Right now their main concern is her hypercalcemia! Her serum calcium is at critical levels (3.19) and they have been trying to bring the calcium down slowly. Kaitlyn has been started on additional sodium both in her TPN and in her J-tube. They are also adding additional water to her TPN. Their goal with the sodium is to get Kaitlyn to excrete more calcium in her urine by increasing her total urine output. In almost one week of this treatment Kaitlyn's total serum calcium has dropped a smidge (although she also had a blood transfusion), so they are treating more aggressively this week with more sodium to try and bring the calcium down into a normal range. Once this is accomplished then they will deal with the cause of the hypercalcemia.

If her hypercalcemia is due to leeching calcium out of her bones, then they can treat that by the addition of biphosphonates (ie. pamidronate). In the meantime we will just have to watch her close. I have no idea how weak her bones are at this point, but calcium leeching out of her already weak bones kind of scares me! Biphosphonates kind of scare me too because of their side effects. Luckily we know several SMA Type 1 children who have already had these transfusions (pamidronate) so we will lean on them when the time comes ;)

In less than two weeks Kaitlyn's hemoglobin is already below normal values. Her hemoglobin was 104 yesterday. Normal values are 115-145. I cannot wait to get these acute issues dealt with and see if we can't get her a little more stable! Perhaps then her hemoglobin won't drop so fast! She doesn't feel herself when the hemoglobin drops too low :(

Some recent shots of the kids! Sorry I haven't posted any in so long :(


Devon said...

Sweet girl!!! Her hair is getting so long. I hope they figure out these issues for her and soon!!!

Smilen Champ said...

HI Kaitlyn
My name is Jenna and I came across your site. U are such a brave courageous fighter. U are my hero.
I was born with a rare life threatening disease.

Ritu said...

Hi Kimberley.. sorry to hear Kaitlyn is having such a hard time.. She'll be in our prayers, may God make her well soon.
But whatever it may be she has a diehard spirit and one of the most beautiful smiles in the world! God will give you all the strength to get through this.. victorious!