This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

July 14, 2007

Wednesday, April 14, 2010

Below is the first installment from our original CarePage, edited for privacy.

Well, it's Saturday, and it is our first time to try to post something to this new website. Michael had his first surgery last Tuesday night, and his second surgery on Thursday afternoon. He has been sedated since Tuesday afternoon and on paralytic drugs since Tuesday evening. We are hopeful that he will begin to be weaned from the medication on Monday, but that decision won't be made until Monday. In the meantime, Michael is taking a little vacation while the machines do everything for him. He has round the clock devoted nursing care watching all his vital signs.

Interestingly enough, Michael is not completely unaware. He can hear people talking, and he can feel. Depending on how well he is doing, we can touch his head and legs, and talk to him, and they assure us he knows we are there. He is communicating to his nurses through his blood pressure, which elevates whenever someone talks near his bed, or when he is in any discomfort (at which time they rush to figure out what it is and make it right).

Now, for the details. If you don't want to know, stop reading now.

Michael's first surgery was to install a trach tube in his trachea and a G tube in his stomach.

Pre-op was difficult. He had a lot of lines and tubes inserted, and we could not be with him as much as we liked. As a last step, Michael had to be intubated, and because his airway was unstable, the doctors wanted to do it while he was awake and still in the NICU. Unfortunately, they were not able to get the tube in after several attempts, and they needed to take him to the OR without it, to try again. So, down to the OR Michael went, with us in tow. We don't know exactly how many tries it took to intubate him in the OR, but it took more than one, and it was an effort.

Everything seemed to go well for a few hours after surgery. The surgeon was pleased with everything, but late Tuesday night the trach tube failed, and Michael needed to be intubated again. Thank God for Doctor B____, or we would have lost him that night, but Doctor B_____ successfully intubated him on the very first attempt. Despite the great efforts of the medical team and Doctor B_____'s great talents, Michael's oxygen levels were compromised for 20 minutes, reaching as low as the 20's and 30's for several minutes. As a result, neurological testing and brain ultrasounds are in his future to see if permanent damage was done.

On Thursday, Michael had the trach tube replaced with a longer one that the surgeon believes will be more stable, and so far there have been no issues with the tube.

Despite the scare, Miracle Michael again has convinced us that he is fine, because he has shown evidence that he still recognizes our voices when we come to visit. Before the surgery, we used to sing to Michael to make his blood oxygen levels go up, and now when we sing the same songs, his blood pressure drops a bit, so we know he hears us and recognizes what we are doing.

Adjusting Michael's ventilator settings has proved a task of constant adjustment, but there have been no more spells as bad as the first night. He's had a blood transfusion from Aunt Kim's donated blood, and a diuretic to reduce water retention, and pain meds and post-op drugs, but otherwise he just lays quietly while the machines do all the work.

We are looking forward to the day when he is allowed to wake up, and we will keep you posted.

Megan and Adam

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