Archive for July, 2014

Slow and steady, but slow.

NCM950106Here we are 9 days post surgery. Breathing tube has been out for a couple days, and Bronson is still sedated and on breathing support by way of a bi-pap mask. Last night they reduced him to 30% oxygen, which is about room air and the mask is still blowing constant pressure in his nose which helps stimulate him to take breaths. The steps that we’re taking with Bronson are excruciatingly slow, however slow is good in this instance. The nurses have assured us that even though it seems slow to us, he is still flying through recovery.

We are finding humor in the little things like the way he keeps scooting around his bed determined to still be “busy” as much as the sedation will permit. His nurse today has been with him the most and she has finally relinquished her will to keep him neat and proper on the bed. He keeps ending up with one foot up on the side rail, his head turned the other way, and scooted down about half way on the bed. She said this morning that she’s finally given up on the idea and is happy with him just being comfortable

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. So he is staying true to his strong willed reputation and has won his first battle of wills! We have started trading off nights staying here in hospital due to is low level of sedation. It’s important to us to be here in case he does wake up at least one of us is here to comfort and reassure him. So here we stay, waiting on pins and needles, for the next small step toward him waking up and getting us all out of the ICU. Most of the bits of time that we have gotten out of here have been eating and sleeping. As we go through this Tabatha has discovered that her saying of “low stim(ulation)” for Bronson applies to her as well. She managed to hit her peak input after he was extubated and had to go decompress. She called it an emotional detox, and found a nice little park at the harvard medical campus which is right next door to the hospital. The nurse the last two nights told Tab to behave or she’ll be one of those moms that they talk about in the break room. I have found that my stress stays relatively low through most of it all as long as I can have a drink with dinner every couple days, which actually has been direct orders from at least 10 people on his care team.

They are giving him a break from the bi pap mask right now and setting up for the next step that will get him closer to breathing on room air alone. As long as we continue with slow and steady the updates will also be slow!





6 weeks went so fast. We got back here to Boston on Wednesday the 16th, pre-op appointment on the 17th, then dropped Bronson off at 7:30 (after checking in at 6:00) the morning of the 18th. From the time they took him back until we finally got to see him at night was 14 hours. It was a long day for us, a long day for him, & a long day for the surgical team. He was on bypass twice, the first time for a little over 5 hours and the second time for about an hour to control some excess bleeding. Dr Emani said, when he finally got to meet with us, that he was pleased with the way the surgery went and that he had gotten to everything that he wanted. He did some work on the mitral valve, some work on the pulmonary arteries, and looked for a hole that had been spotted on Bronson’s last MRI but he was not able to physically find it. (We’re not really sure that it is even there.) All of that he did in addition to taking down “The Glenn” (single ventricle) circulation and putting back Bronson’s circulation to that of a 4 chamber heart

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. He told us that he thinks there are some more collateral blood vessels going to the heart that may need to be taken care of soon. That could be accomplished in the cath lab, as well as investigating why there are elevated pressures in his heart, probably as soon as Monday. For now Bronson is in ICU heavily medicated and on a breathing tube. He is reacting well to medication, is stable at this point, bleeding has slowed to minimal and he looks surprisingly very good (considering all that time in surgery). Through the day today the staff reduced a couple of his meds and the plan for tonight is to re-start his diuretics. We are anticipating no major changes until they are ready to pull the breathing tube from him, so that should mean a peaceful night tonight and a quiet day for us tomorrow. Meanwhile, we are taking advantage of this “boring” period and keep current with our sleeping. It will be GO TIME when he wakes up with a four chamber heart. BEAST MODE will be in full effect! Bring on the Bronsonator! Pics below from Pre op and before they took him back for surgery.