Monday, March 14, 2011

Kaitlyn is such a Chatty Cathy!!!

From the time that Kaitlyn was an infant people have been telling us that it is highly unlikely that she would ever speak. Speech is incredibly difficult for an SMA Type 1 child. They have neither the lung strength nor the articulation to make speech. Against all odds our girl has begun her journey with words!! She has had a few simple words since she was about ten months old. For three years now we thought that the few amazing words she could belt out were all that she would ever have. Well since coming home from the hospital in December our girl has developed an incredible desire to speak!! She "talks" almost non-stop now! She is still not talking in full sentences, but her enunciation and vocabulary have definitely grown :)

I never thought that I would see the day that my daughter would be able to tell me verbally how to help her! She has been verbally asking for coughs and/or physio for a while now. The other day she was fussing and fussing. I changed her diaper, smoothed her clothing (checked for uncomfortable wrinkles), readjusted her position and nothing seemed to help. I think I even took her temperature! (Force of habit :P) I got a little frustrated that everything I did wasn't helping! I finally asked her "Kaitlyn what is wrong?" Kaitlyn said, "Ishy (itchy)". Me, "Itchy what?" Kaitlyn, "Itchy head!!!" So I told her to stop crying that I would scratch her head and I did. I couldn't help but be a little speechless, amazed, and a little overwhelmed!!! My girl just communicated something to me in a WAY that I never thought would EVER be possible. As I'm scratching and wondering when I should stop....She says, "that's better!!!" The first thing I did was chuckle and shake my head in wonder and then ran for my cell phone to tell Tim :)

The other night Tim was lifting Kaitlyn's upper body off the bed in a big bear hug. He kind of squeezed her and gently rocked her from side to side. Kaitlyn says "easy" then "too rough!!" LOL We both looked at each other and just laughed. Daddy said, "Sorry Kaitlyn"!! His hug certainly didn't look rough to me, but we are both so thankful that she is finally able to communicate with us even in these simple ways!!!

Kaitlyn has been dealing with anemia. Two weeks ago her hemoglobin was 88 down from 116 two weeks before that! Normal hemoglobin is 115-145 g/L. She has bloodwork again this Tuesday and will likely need another transfusion. She seems to need a transfusion about every six weeks. I want to add that Kaitlyn is not iron deficient. Her serum ferritin is 1368.1! Normal values are 12-120 ng/mL. Serum Ferritin can also be elevated from inflammation within the body.

On top of the anemia Kaitlyn has been dealing with back to back urinary tract infections. Six weeks ago we had to learn how to catheterize Kaitlyn to help empty her bladder. She was going 12+ hours consistently without urinating! We cathed her once in the hospital and got 540 mLs!!! Kaitlyn has had urine retention for several months, but it has only been the past few weeks that she has had difficulty urinating "enough" on her own. She always seemed to urinate well, but NEVER completely emptied her bladder. Now she is having difficulty some days urinating at all. Urine catheters were ordered for every eight hours. We have been placing the catheters every day. Since beginning the catheters we have had back to back UTI's. Last week we started an antibiotic for UTI number three. Friday, Kaitlyn's urine really started to stink. An aweful sulphur smell (rotten eggs). I didn't know what to think. Well last night when I cathed her there was a LOT of sediment in her urine. When I dipped the urine there was a high level of blood in the sample. This is after five days of antibiotics. The bacteria was sensitive to the antibiotic Kaitlyn was taking. We can only assume she has managed to grow a new bacterium resistant to the antibiotic we were using. We started a new antibiotic today and are keeping our fingers crossed that when the sensitivities come back that we are NOT going to need IV antibiotics! The lab said this sample was almost pure puss :(

The third issue we have been having is with elevated serum calcium. Both the ionized calcium and total calcium values are elevated! I have no idea what this means! Her phosphate levels have been normal so our doctors do not think the hypercalcemia is due to the parathyroid. They think her issue is kidney related, but I'm not sure in what way! Our paediatrician is going to consult Kaitlyn's renal doctor who follows her for her high blood pressure. Hopefully he will have some suggestions. Tests we can do, or some sort of treatment! We have taken out ALL oral calcium and Vitamin D3 supplementation ordered by endocrinology. They wanted her to have 800 mg of elemental calcium in addition to the calcium in her TPN. The calcium in her TPN was below normal levels for a typical TPN order. They have also taken that reduced calcium down by an additional 20%. They have been trying to lower her serum calcium, but alas the serum calcium continues to rise! Her total serum calcium was 3.19mmol/L two weeks ago. Normal values are 2.1-2.7 mmol/L. I sure hope they figure this one out soon as her ionized calcium has been high since we were dicharged back in December!

Kaitlyn has routine blood work this Tuesday and will likely need to be admitted to hospital for another transfusion. Our hospital is reportedly full of RSV!! We will NOT have to go through ER or admissions! Our doctors always triage Kaitlyn right from the comfort of her hospital room! They are also great at isolating Kaitlyn from the nasty bugs and we never share a nurse that has an isolated kid!

Please keep Kaitlyn in your thoughts as we try to figure out what is going on inside her little body!

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