Last week we had 2 pretty important appointments for Kaleb.... Endocrinology-I was far too optimistic about this appointment. After everything thats happened, I really thought hed have something helpful. But he didnt. Worse, he thinks the pancreatitis was caused by dehydration. The labs do support it. But Kaleb only got dehydrated because his belly pain was so bad we couldnt feed him. By the time the labs were drawn it had been 12 hours. In my humble Mama opinion, the pancreatitis came first. So where does that leave us? With low doses of calcium and frequent labs to make sure Kaleb can handle it. I probably shouldnt have, but I told him it wasnt good enough. As a specialist in the field of Kalebs latest area of need, you should not come to the table with only one option...and that option already hurt my baby once...according to every other endocrinologist at Dallas Childrens. Its simply not good enough to send a mother out the door with a you just have to be patient and it took him a long time to get into this, its gonna take him a long time to get out. There simply must be something better out there, and if there is, Ill find it. Orthopedics-I wasnt surprised at all that Dr Wilson didnt want to remove the cast/pin last week. His X-ray looked stable. Theres lots of new bone growth, and the pin is holding well. We go back in almost 2 weeks to remove everything for sure. He doesnt want to push the limits of risk for infection. Of course, he wants to remove everything and put him right into a brace, so Ill be working on my negotiating skills between now and then. As much as Id love for Kalebs arm to be out of that thing, I desperately want to keep it safe! In other news, were on-call(sort of) for any cancellations in Dr Seikalys office. Hes the metabolic bone expert that everybody keeps saying we need to see, but since Kaleb is a new patient its been challenging. We REALLY need to see him since our Endocrinologist is uninspired. Well also be moving up our next GI appointment to see what Dr Barth thinks about the pancreas. Its important that we figure out what caused the pancreatitis so that we can prevent a reoccurrence. Also, our Ped was worried about Kalebs pancreas numbers and his hemoglobin, so we had labs done. The good news is that his pancreas numbers are coming down nicely, and his hemoglobin/hematocrit are both higher. There are still a few numbers that dont make sense, so she may send us to a Hematologist for answers-yay! Mama says facetiously. Hes so happy though, his color is improving, and hes stood quite a bit recently. We need to get him walking more, but that will come along with time. Im trying hard not to worry every minute of every day that hell get hurt, and start this whole thing over again. I know my strong, sweet boy is and always will be in the loving hands of God, so I must trust that he will stay safe...its just so hard sometimes. I want answers, solutions that heal him now and not months from now, and Ive never been good at being patient. I pray for trust, patience, and for a better way to treat Kaleb...not in that order. :) Thank you for continuing to pray for, think about, and love our boy! One day, one hour, one minute at a time... Pics : 1. Happy at Endo appt 2. Hiding from Dr Dickson. Hes never done that before. Guess he knew the appt wouldnt be impressive. :) 3. Multi-tasking waiting for Ortho. 4. The latest X-ray of his arm. Its still crazy how long that pin is.
Posted on: Mon, 13 Oct 2014 05:46:21 +0000
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