So, since last I wrote there have been some new "developments". Here's an attempted informative update:
We ended up giving Lucas 4 doses over 2 days of a drug called Klonopin for his last round of sz (seizure) and adjusted his daily medication, Tegretol, by increasing one of his three daily doses. Everything was fine and fabulous. He had one last sz lasting about 1 minute early Friday morning, but was great all through the weekend. Then, Monday morning, around 1am, he had another sz. It was about 4-5 minutes and was much more subtle than the last sz, but a sz it was. He was fine all day Monday, but then Tuesday, he had another sz, again around 1am and again subtle. (I'm talking I had to look really hard to be sure that he was actually having these sz.) After that sz Tuesday morning, I gave a Klonopin tablet. (It dissolves in his mouth.) It was technically about 24 hours and we were instructed to give it only if the sz lasted longer than 5 minutes or if there was more than one within 24 hours, but I thought, being right on the border of a day, I'd go ahead with it. This means that I must then follow through with three other doses spaced every 12 hours. We also increased a second of his three daily doses of the Tegretol.
-Are you all able to follow me when I write about this stuff? I hope so. I always make Marc read what I write to get a layman's perspective. Irregardless... (yes, I know that is not a real word.)
Today, I got a call from the same day Sx (surgery) nurse to get some brief physical info about Lucas for his upcoming Sx. This information includes what medications he is currently taking and therefore an explanation of the recent sz and medication adjustments. He is also taking an antibiotic to rid him of a stuffy nose he's had for about 2 weeks. (Interestingly, the pediatrician and the Neuro nurse both said that this could be a sinus infection and the source of the recent sz activity.) The nurse called me back to clarify his sz status a few minutes later and to get the name and number of his neurologist. She then called back again to tell me that his Sx has been canceled due to the anesthesiologist's discomfort with sedating him without his sz status being under control even though his neurologist gave the all clear.
There are no dates available for rescheduling the Sx that would allow enough recovery time for his eyes before Lucas' hypospadias follow-up Sx to determine if he needs a second eye Sx which would be performed while he is in for the hypospadias Sx. So, now we are planning to have his eye Sx at the same time as the hypospadias follow-up Sx and if he needs any additional eye Sx, it will have to be after that.
I have to admit that I was quite thrown and a bit upset when I received this information. We wanted to go for an earlier Sx for the statistical increase in function and recovery. I had it in my mind that this was going to happen, had processed all rational and irrational fears and hesitations and was settled. Then the dust was kicked in my face because of some person who won't even talk to me or Lucas' neurologist.
After talking to Marc and to God for a while, I am much more calm now. We have been praying for months about this Sx and whether or not we should do it and if it should be done at this time. We have been praying that if we are not to put Lucas on the operating table this Friday that we would be clearly shown that so that we can cancel. Apparently, we are not supposed to follow through and instead of struggling to know if we are hearing God clearly, God shut the door for us so we don't have an opportunity to hear or act wrong. For this, we are eternally thankful. God only knows why this is not the time, but we trust His decisions. Perhaps something would go wrong or perhaps Lucas will only need one operation on his eyes and he has been saved from having to go through the whole Sx thing more than necessary. Perhaps, God will heal him completely on His own, without the help of surgeons.
Whatever the "perhaps", the Sx is off. We will continue patching his right eye for an hour daily to strengthen the brain's response to the left eye's input. We still have to get Lucas' blood drawn for his Tegretol level so that the neurologist will know how, more exactly, to adjust his daily medication.
That's the latest. Thanks for tolerating my garble. I assure you it's a lot more difficult to decipher the way I say/write it in my head. Anything you don't understand, you can ask, or in this day and age, Google. :) Thanks, more than anything, for your prayers. God is good and faithful and watching out for us, for you too. :)
Blessings and love and squeals of joy (that's from Lucas),
Esther and Marc
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