Forty Days! I can't believe it has been 40 days today. I got to the hospital only to find the iv team at Tyler's bedside digging around trying to get blood. Not a good way to start the day for the poor guy. After that, it was straight down stairs for an echo cardiogram. One step closer to discharge...or so I thought. When the doctor came in to check the echo, I asked him how the flow in the SVC was since the clot had been removed. There was no flow. NO FLOW? How could this be? We JUST had that cath procedure to open up the clot and there should be flow. There is another clot. That is all I was told at this point. Heart looks great where the transposition repairs occured.
After the echo, I requested to speak with the team in charge of his care because I had missed their rounds during the echo. I spoke with the fellow who has been taking care of him. She gave me the report from the morning with hopes that he would be going home by the weekend as long as he kept gaining weight. I stopped her and asked if she had heard about his echo because his SVC was blocked again. She did not know so she couldn't really answer my questions until she talked to the team.
Frustrating. We are getting really tired of being almost better and then having complications. It has been almost six weeks away from home and we really just want to bring our baby home soon. We are also feeling the "what ifs" because we asked for an echo before the picc line was removed but were denied that request because they said there was no way it would have clotted in the two days since his last echo. Well, it did and now there is no picc line in so a heart cath is no longer an option for a repair. We may be facing another open heart surgery sometime in the near future.
John spent the afternoon with Tyler and was hoping to get to speak with the doctors. The resident came in but didn't have any information for him. While he was there, Tyler had another episode of vomiting some large hard chunks. I have been concerned about this since Sunday when he vomitted what looked like large light brown tootsie rolls. I ask the doctors about this every morning and keep being dismissed. Today, John saved the chunks for me to show them in the morning. Something is clearly going on that is not right. No one that sees the chunks has ever seen anythng like it before. I really hope they will listen to me tomorrow, because I feel like this could be a reason why Tyler is having trouble with feedings.
Overall, an upsetting day. John is taking Connor home with him tonight so that he can get back to work. Hopefully, we will get some answers tomorrow and John can come back for the weekend.
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