We are also meeting with our Nephrologist this Wednesday to see what we can do about Kaitlyn's hypercalcemia. There are ways to treat hypercalcemia if the cause is identified. Our nephrologist believes that Kaitlyn is probably leching calcium from her bones. This concerns my husband and I a great deal!! Kaitlyn is already osteopaenic. Her bones are brittle and she has now been leeching calcium from them for the past almost six months!!!! We have had bone density scans done for the past three years. Kaitlyn was due for more scans this past January! Our doctors felt that the scans wouldn't be much help? I'm not sure I agree :( I feel that we would have a fairly good comparison from the past three scans. Perhaps it would give us some insight as to the extent of bone degredation (if any) to the calcium being slowly removed from her bones! If she is leeching calcium from her bones then there are ways to prevent this from continuing!
One way is to treat Kaitlyn with bi-phosphonates. One such drug is called Pamidronate which is used by several SMA children for brittle bones. It helps keep calcium in the bones. Currently we are adding ZERO calcium to Kaitlyn's diet!! This concerns me greatly as calcium is good for more than just bones! Our doctors have increased Kaitlyn's sodium and fluid intake trying to get her to "pee" off the excess calcium in her blood. So far this has been working, but it is only a band-aid! I do not believe that she has an indefinite supply of calcium and I also do not want to wait until we break one of her bones before we treat the problem!
We had a rough week two weeks ago. Kaitlyn's J-tube blocked when I was giving her afternoon meds! This happened on Monday afternoon. We couldn't take Kaitlyn in until Monday evening. By then, being Easter Monday, there was nobody around who knew what to do with Kaitlyn. They admitted us so that we could see our surgeon early Tuesday morning. By admitting us they could also administer some IV fluids/meds to replace the fluids Kaitlyn would be missing from her J-tube. Kaitlyn gets about 300cc's per day through her J-tube. Not to mention medications.
Anyway, my story....Tuesday morning arrives and our surgeon comes to tell us the bad news. We haven't a replacement tube in the hospital. Kaitlyn has a GJ Mickey Button. To my knowledge she is the ONLY child using this tube in our children's hospital. Our surgeon had to order TWO new tubes from the States. He had surgery time tentatively booked on Thursday. Rather than discharge us from the hospital, they sent us home on a pass so that we had the IV fluids we needed and IV medications. We went back to the hospital on Thursday in the morning. We were scheduled for afternoon surgery. Our surgeon came up in the afternoon to tell us that the J-tube hadn't arrived, it was stuck in customs at the airport :( We decided to stay overnight and Kaitlyn would have her surgery Friday morning. Kaitlyn had her surgery and everything went well. She lost another tooth when the anesthetist intubated her :( She is now missing both her two front teeth.