GJ Tube!

Tummy time!

Caelin in his swing!

He looks like a little old man from behind!

Cael doing "tummy time."

The magnificent weekend was followed by an overwhelming Monday. Mondays are usually busy because all the doctors and specialists return from the weekend. Caelin doesn’t normally have a problem with this but he seemed to this past Monday. On top of all the usual Monday visits, he had to get a new IV, and blood drawn for labs. Anymore he gets infuriated during labs and when getting a new IV so needless to say, he got so upset during these that he threw up. Overall, he vomited 6 times on Monday. Fifteen minutes after his last emesis around 6 PM, he began desatting. This means his oxygen saturation dropped from the 70s and 80s to the 40s and 50s. This is shockingly low. They did a chest X-ray and an echo to find what caused it but both were normal. The only conclusion is that he had an over-stimulating day and/or may have aspirated a little during his last emesis. Regardless, this reminded the doctors that he has very little reserves and needs to be left alone every once in a while.

Because of him desatting on Monday, they made him NPO (stopped feeds) until Tuesday morning and later that afternoon gave him 40mL of blood. Combined, these actions seemed to help Caelin recuperate and now he is doing better.

Wednesday Caelin had “tummy time” for the first time. His chest has finally healed to the point where it is okay for him to experience some time on his tummy as long as he is supported by the mini Boppy. He seems to love this! We think this position helps take some pressure off his belly and helps to relax him (he has been pretty constipated and gassy from the Elecare formula).

Tomorrow morning Cael is going to get a G-J tube put in his stomach. This requires him to go to the Operating Room with cardiac anesthesia. It is a relatively quick and straightforward procedure but poses some risk of infection and of course is always risky for Cael because of his heart condition. While he is sedated they are going to draw blood from him for his hematology labs. They will be taking 12 mL from his body for these labs so we are expecting he will need another blood transfusion after tomorrow. He will go NPO (off feeds) at midnight and will not resume feeds until Saturday morning. They have to allow time for the procedure to heal before they start feeding the stomach again. We are assuming that this will make for an agitated, hungry, and in-pain Caelin. Luckily, he should be able to get both Tylenol and Morphine to help ease the pain.