Hello all! Today was expected to be the worst day of the immediate recovery, but we have almost made it through and have even seen some improvements.
Last night, Andrew's swelling seemed to reach a plato of some sorts. He began with swelling just at the incision site and in the areas around the top of the head where the tools were used to hold his head in place for the surgery. The RN in the ICU explained that this "tool" was kind of like a "vise" and that the pins in it had created the painful holes in the side of his head and swelling surrounding them.
On day one, his eyes began to swell and looked red with a blueish tint. This swelling gradually increased and consumed the rest of his head and face. Last night he was in great pain almost seemed tormented by the itching of his skin and lips. It was around midnight when we got him to rest with the help of some additional pain medication. This morning, however, we awoke to a slightly smaller version of the swelling and to our pleasure, he was again able to open his eyes. As the day has gone on, the swelling has slowly began to look a little better and this afternoon we can see the swelling starting to dissipate from the top down just as it came.
Our doctor believes the jerks and twitches are myoclonic seizures that are probably focalized on the "good" side of the brain. However, the nurses tell us that sometimes they see kids do this and then as the brain adjusts to the effects of the surgery these events seem to go away. We "loaded" Andrew with A LOT of valium yesterday to give his brain a chance to rest and today he has had a continued dosage. This will continue through at least tomorrow morning. He has been taken off of the high doses of decadron. We will increase his regular seizure meds. He is sleeping a lot at times and his blood pressure is jumping up and down depending on how much valium and pain medication he is taking. Today it fell quite low, but then later it came back up. The child life group hosted a "Carnival" in the lower lobby of the hospital today. We took Andrew down in a wagon, but he was really too tired to enjoy it.
Now for the PRAISE! Andrew walked with the help of the OT/PT to the nurses desk today. He is following most commands and when he is awake seems to be like Andrew!!! So far I am not able to see the disconnection syndrome that we were warned about. As the swelling has decreased, we can see his eyes again. He has smiled more today. He has been more able to "snuggle" today and he doesn't seem to be in as much pain. Additionally, he played with some toys this afternoon.
We got to see Alex today, thanks to Inkie and Carrie! It did our hearts well to get to see his little face.
Thank you again to all of you who have been keeping check on us and praying for us! If you have called and we have missed you, we're very sorry. Sometimes we just haven't been where we could get to the calls for taking care of Andrew or talking with nurses or the doctor.
Please continue to pray for Andrew. God's hand has been so evident in this endeavor. Please know that your kind words and prayers have not only given us strength but at times have been a portion of our sustaining strength. We love you all and look forward to getting back home soon!
Last night, Andrew's swelling seemed to reach a plato of some sorts. He began with swelling just at the incision site and in the areas around the top of the head where the tools were used to hold his head in place for the surgery. The RN in the ICU explained that this "tool" was kind of like a "vise" and that the pins in it had created the painful holes in the side of his head and swelling surrounding them.
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| The oozing on the side of the head is from the "vise." |
On day one, his eyes began to swell and looked red with a blueish tint. This swelling gradually increased and consumed the rest of his head and face. Last night he was in great pain almost seemed tormented by the itching of his skin and lips. It was around midnight when we got him to rest with the help of some additional pain medication. This morning, however, we awoke to a slightly smaller version of the swelling and to our pleasure, he was again able to open his eyes. As the day has gone on, the swelling has slowly began to look a little better and this afternoon we can see the swelling starting to dissipate from the top down just as it came.
Our doctor believes the jerks and twitches are myoclonic seizures that are probably focalized on the "good" side of the brain. However, the nurses tell us that sometimes they see kids do this and then as the brain adjusts to the effects of the surgery these events seem to go away. We "loaded" Andrew with A LOT of valium yesterday to give his brain a chance to rest and today he has had a continued dosage. This will continue through at least tomorrow morning. He has been taken off of the high doses of decadron. We will increase his regular seizure meds. He is sleeping a lot at times and his blood pressure is jumping up and down depending on how much valium and pain medication he is taking. Today it fell quite low, but then later it came back up. The child life group hosted a "Carnival" in the lower lobby of the hospital today. We took Andrew down in a wagon, but he was really too tired to enjoy it.
Now for the PRAISE! Andrew walked with the help of the OT/PT to the nurses desk today. He is following most commands and when he is awake seems to be like Andrew!!! So far I am not able to see the disconnection syndrome that we were warned about. As the swelling has decreased, we can see his eyes again. He has smiled more today. He has been more able to "snuggle" today and he doesn't seem to be in as much pain. Additionally, he played with some toys this afternoon.
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| These are the moments that break our hearts yet give us strength. It was so hard to watch him fighting just to stand. |
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| Getting up off of that bed was NOT easy! |
We got to see Alex today, thanks to Inkie and Carrie! It did our hearts well to get to see his little face.
Thank you again to all of you who have been keeping check on us and praying for us! If you have called and we have missed you, we're very sorry. Sometimes we just haven't been where we could get to the calls for taking care of Andrew or talking with nurses or the doctor.
Please continue to pray for Andrew. God's hand has been so evident in this endeavor. Please know that your kind words and prayers have not only given us strength but at times have been a portion of our sustaining strength. We love you all and look forward to getting back home soon!
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| Victoria--Wonderful, wonderful! |
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