Update (July 13 – July 16) – Part 3

Now that we had Evan’s heart issues figured out it was now time to figure out why he wasn’t eating. It is not uncommon for heart babies to have feeding issues; your body gives priority to organs and tissues in your body with the brain being top priority and your gut is a little farther down the priority list so if his stomach was not getting enough oxygen that could be the cause.

Monday, July 14th was moving day. The entire cardiac unit was moved from the 8th to the 7th floor. The morning of the move was rough and Evan was not able to hold his formula down. Due to the emesis ( medical term for vomit) they wanted to run some tests to determine if there was anything structurally causing it. He had an x-Ray and sonogram which both turned out normal but a large amount of stool (sorry TMI). The plan was to give him IV fluids in order to give his stomach a little break and suppository.

On Tuesday (14th) they started pedialyte very slow and Evan tolerated most but threw up a little. Since, he threw up some of the pedialyte they wanted to do one more tests before starting him back on fluids. He went down for an upper GI test which follows barium through his upper GI tract to ensure there aren’t any obstructions. Again, that came back normal…praise God! The plan was to start feeding him formula again very slowly. They started out at 1 ounce over 2 hours through the NG tube every 5 hours and would increase the amount by a half an house until he is up to 4 ounces every 4 hours.

In the meantime, Ryan and I decided Evan would have the surgery here in Pittsburgh and then go to Boston for the first dose of the drug. I promise I will give more details of the trial in a separate post. Evan was scheduled for surgery on Wednesday, July 16th and would be the first case. We were preparing for surgery and had met with the doctors. Evan’s cardiologist had been in contact with Boston and during rounds we learned there was a window after the surgery that they need to give Evan the medicine and if for any reason he couldn’t get to Boston in time he wouldn’t be able to get the drug. My initial thought was he is going to be well enough to get to Boston and we wouldn’t have any issues so we would proceed with the surgery here in Pittsburgh but I wanted to talk with the surgeon before we made the final decision.

Later, that evening the surgeon came in to talk to explain the surgery to us. He explained what he would do and he also mentioned that he was aware of Boston’s protocol and while he was capable of repairing the vein his fear was that we would miss the window to get the Gleevac and as a parent himself he didn’t want Ryan and I to question “what if we had gone to Boston?” So….we made the decision we are going to Boston!!


2 thoughts on “Update (July 13 – July 16) – Part 3

  1. marylou Holliday says:

    He is so gorgeous. Baby superman Evan . He makes my heart sing. kiki you are so detailed, I feel like I’m there seeing and hearing everything that’s going on. God Bless. Love Ya.

  2. Karen says:

    Evan, you are so adorable! Love to see your pictures and feel like I can hear you laughing. Keep fighting little warrior, you are doing great! God Bless all of you!

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