Friday, April 22, 2016


We have gone five years without any broken bones. FIVE YEARS! I was devastated when Jacob got the diagnosis of osteoporosis. I was devastated when he broke his arm, had a herniated T4 vertebrae, and had a broken bone in his right shoulder. DEVASTATED. HEART BROKEN. FEELING LIKE A FAILURE.

We proud ourselves of the care we give Jacob every day. We don't take it lightly. We give it 100% at all times. We know what Jacob endures every day to live, and we will make his life the best life possible. Always, no matter what hour of the day he needs us. Somehow I know he knows that's our deal. We will fight for Jacob as long as he is willing to fight. No questions asked.

Jacob has received injections to make his bones stronger for the last five years. It is an injection every six months that takes the calcium from his body and put it all in his bones. Most kids go through these treatments for two years. Jacob has some of the most brittle bones out there, so his endocrinologist decided to go against the typical treatment plan, and told us early on that this was for life. We agreed. We go and visit with the cancer kids twice a year in the infusion center. We love and adore the nurses there. I don't always know what to do with my feelings around the tough cancer kids.

In the last week or so, Jacob has not slept. Some nights, he has not slept at all. Jacob has bad nights all the time, but typically he catches a little sleep. Not lately. His heart rate has been high, and we have been going to his normal causes of pain, e.g. his stomach. In the last 24 hours, we visited Children's three times to try to figure out what was going on. We did tons of labs, checked his urine, and also had an abdominal x-ray done. Nothing was found. In fact, his pancreas looks better than in a very long time!

I had mentioned the word broken bone this morning when talking to Special Care. If nothing was found, I think we would have to look at his bones. At 2 pm when all labs were back, we were asked to come in to check his bones. Dr. E. had said to her team that my intuition with Jacob is something out of the ordinary (thank you Dr. E), and it can't be ignored. A full body scan of a child is not something a doctor takes lightly, but because of my worry, a full body scan was ordered. I must say I didn't believe it myself. I thought it was just another thing we were ruling out.

BINGO! A big break in his right tibia! It is a big bone. A bone I rely heavily on when I bike and run. It was too late to get a hold of orthopedics, so the ER folks came over to give him a splint. We have to follow up first thing Monday morning with Ortho to see if Jacob needs a cast or can get away with a boot. Typically, this would require a full cast, but maybe, maybe, because he's not weight bearing, he might get a boot.

To top it off, the radiologist also discovered an atelectasis of his lower left lung, so we also came home on antibiotics and bipap for part of his day.

I don't know what makes me so upset about broken bones and Jacob. I feel I have failed him. I really feel guilty for this happening to him. He has most likely broken his tibia as we cared for him. It could have been with a diaper change or with a transfer. Jacob is a tall 10-years old kid over 70 pounds. With an added cast or boot to his leg, we're going to have to get very creative with his care.

A little light at the end of the tunnel is that Jacob feels better with his splint, elevated leg with a bag of frozen peas, and pain medications on board. He is SLEEPING.

And I'm a little proud of Jacob for actually telling us yesterday on his talker that his legs were hurting. He has become really good to tell us when his tummy is hurting, when he needs a diaper change or needs suctioning. Yesterday, he told us for the first time his legs were hurting...too bad we didn't jump on it right away.

Please keep Jacob in your prayers for a speedy recovery. Love, Maria.

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