We were a few days away from being out of the hospital for a full year! Jackson was admitted to the hospital on Friday due to high calcium levels. We were discharged this afternoon and are very happy to be all together again at home.

Jackson hasn’t been that great over the past few months. He cried inconsolably every evening of December; he was lethargic and sleepy in January; and he started needing supplemental oxygen during the day in February. We took him to the pediatrician in mid January, which kicked off myriad rounds of testing and countless blood draws.

We were referred to hematology because the inflammation markers in his blood were high. Jackson was diagnosed with a UTI at the end of February but didn’t get any pep in his step after he finished the antibiotics like we were hoping.

We had routine telehealth visits and asked each of his specialists if they had any answers but no one could figure out what was going on.

Then, Jackson had a blood draw on Friday and we received a call an hour after we got home that his calcium was so high we had to bring him back immediately. So, after 363 days of freedom, we were admitted once again.

Jackson was given IV fluids to bring down the calcium and a blood transfusion because his hemoglobin was super low. Endocrinology was called in and they ran more tests. After their labs came back, the endocrinologists concluded that Jackson’s bones are leaking calcium because he is immobile. He received an IV infusion of a special drug to help his bones get stronger and hold onto the calcium.

Jackson looks better and is more alert than he has been over the past few weeks. We hope that these treatments make him stronger so that he will no longer need oxygen during the day. Most importantly, we are waiting for him to smile. We haven’t seen him light up in a few months and are hoping and praying his bubbly personality returns.

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