Now that I have had time to sit back and reflect on the week, I guess I should say that it wasn't a completely horrible day (the day surgery was scheduled)...just difficult.
It was just one of those days. Where nothing seems to go right.
Elsa was up in the middle of the night.
Brandon left early that morning to go out of town for work.
I was scrambling around trying to find time to call early in the morning to get Sophie's surgery scheduled. They have a surgical conference every Monday so I wanted to be the first one to get a hold of Ruth (Dr. Chugani's nurse who schedules the surgery and has an immense amount of knowledge regarding surgery).
I had Sophie to get ready for school and Elsa to get ready for music class.
I got a hold of Ruth before we left but the earliest date she could give us was July 7th (3 days after my due date) so she said she would call the neurosurgeon to try to get something earlier. She would try to call me back before the end of the day.
I was late dropping Sophie off which means instead of having the teachers come get her out of the car, I had to park and walk in with both Sophie and Elsa.
Elsa and I went to music class...a nice break from reality. We then ran a few errands and picked Sophie back up from school.
Sophie was crabby the minute I buckled her into her carseat. Lately, it seems that school has been completely exhausting to her. Her energy level isn't where it use to be.
Back at home, I tried to get Sophie to take a nap since she was having complete meltdowns but Elsa wasn't making it very easy for me. Then Dr. Chugani called in the midst of all of this to go over the list of questions I e-mailed him the night before. Luckily, I was able to get a hold of Brandon on 3-way so he could listen since both girls were screaming, crying and pulling on me in every direction. Dr. Chugani asked if I could hear him because he said he couldn't hear himself talk. So I put the phone on mute. But it was so hard to concentrate. At least he had the list of questions so I didn't have to chime in too often.
As soon as I got of the phone with him, I cuddled in bed with both girls and they fell asleep. As I snuck out of the room, the phone rang. This time it was the neurosurgeon's office. They had an earlier date for surgery!!! May 28th!!! Wonderful news. But wait...May 28th was the grid surgery date and June 4th was the epileptic surgery date. That meant a full 7 days of having the grids on. I was under the impression that it would only be 3 full days. Those additional 4 days would be very difficult. Grid surgery is an invasive procedure. In those 4 additional days, Sophie would be completely awake with grids attached directly to her brain. After a 24 hour video EEG, she is ready to pull the wires off and the wrap off of her head. So now I was very confused. Did she really need them on that long or was it a scheduling conflict? I know she was not the typical surgical case so maybe that is what Dr. Chugani wanted. I was freaking out while I was waiting to hear from Ruth on what really needed to be done. But I tentatively took the date just in case.
I then had to leave with Sophie to take her to her first private speech therapy class. My mom came over to watch Elsa (Thank you Mom). While Sophie was in therapy, Ruth called. She said that 7 days was not necessary but that it was the only time the neurosurgeon had available. So we discussed dates again and we scheduled the 2 part surgery for July 14th and 17th. I was second guessing myself but I just couldn't imagine putting Sophie through anymore than I had to. On the other hand, she could quite possibly be seizure free that many weeks earlier. Ugh!!! Then Ruth called back. She just found out that the neurosurgeon is on vacation the first part of July so the earliest date now is July 21st and 24th.
I called Brandon and he thought that maybe we shouldn't wait. I was so torn. Everyone I talked to said that the time between the 2 surgeries is the most difficult time.
Once we got home from therapy, my mother-in-law and Haley pulled up behind us. I figured I would just let things go for now and think about it later.
Later came too soon. After I dropped Haley off at dance class, I couldn't stop thinking about it. Obsessing about it. Brandon was out of town. Though my mother-in-law was here. She came over everyday after work and stayed the night (THANK YOU so much Debbie...I couldn't have gotten through the week without you!!!).
So the next day, I e-mailed Dr. Chugani. He said...I think it's Ok to wait the 2 months. Ruth will let you know if there is a cancellation, HC.
So now we wait. Planning on July 21st but hoping that if it is not up to God for Sophie to miraculously become seizure free in the meantime that it will be some other child scheduled to have surgery. Ruth asked and we agreed that we would be available at a days notice to head on up to Detroit if there is a cancellation.
It was just one of those days. Where nothing seems to go right.
Elsa was up in the middle of the night.
Brandon left early that morning to go out of town for work.
I was scrambling around trying to find time to call early in the morning to get Sophie's surgery scheduled. They have a surgical conference every Monday so I wanted to be the first one to get a hold of Ruth (Dr. Chugani's nurse who schedules the surgery and has an immense amount of knowledge regarding surgery).
I had Sophie to get ready for school and Elsa to get ready for music class.
I got a hold of Ruth before we left but the earliest date she could give us was July 7th (3 days after my due date) so she said she would call the neurosurgeon to try to get something earlier. She would try to call me back before the end of the day.
I was late dropping Sophie off which means instead of having the teachers come get her out of the car, I had to park and walk in with both Sophie and Elsa.
Elsa and I went to music class...a nice break from reality. We then ran a few errands and picked Sophie back up from school.
Sophie was crabby the minute I buckled her into her carseat. Lately, it seems that school has been completely exhausting to her. Her energy level isn't where it use to be.
Back at home, I tried to get Sophie to take a nap since she was having complete meltdowns but Elsa wasn't making it very easy for me. Then Dr. Chugani called in the midst of all of this to go over the list of questions I e-mailed him the night before. Luckily, I was able to get a hold of Brandon on 3-way so he could listen since both girls were screaming, crying and pulling on me in every direction. Dr. Chugani asked if I could hear him because he said he couldn't hear himself talk. So I put the phone on mute. But it was so hard to concentrate. At least he had the list of questions so I didn't have to chime in too often.
As soon as I got of the phone with him, I cuddled in bed with both girls and they fell asleep. As I snuck out of the room, the phone rang. This time it was the neurosurgeon's office. They had an earlier date for surgery!!! May 28th!!! Wonderful news. But wait...May 28th was the grid surgery date and June 4th was the epileptic surgery date. That meant a full 7 days of having the grids on. I was under the impression that it would only be 3 full days. Those additional 4 days would be very difficult. Grid surgery is an invasive procedure. In those 4 additional days, Sophie would be completely awake with grids attached directly to her brain. After a 24 hour video EEG, she is ready to pull the wires off and the wrap off of her head. So now I was very confused. Did she really need them on that long or was it a scheduling conflict? I know she was not the typical surgical case so maybe that is what Dr. Chugani wanted. I was freaking out while I was waiting to hear from Ruth on what really needed to be done. But I tentatively took the date just in case.
I then had to leave with Sophie to take her to her first private speech therapy class. My mom came over to watch Elsa (Thank you Mom). While Sophie was in therapy, Ruth called. She said that 7 days was not necessary but that it was the only time the neurosurgeon had available. So we discussed dates again and we scheduled the 2 part surgery for July 14th and 17th. I was second guessing myself but I just couldn't imagine putting Sophie through anymore than I had to. On the other hand, she could quite possibly be seizure free that many weeks earlier. Ugh!!! Then Ruth called back. She just found out that the neurosurgeon is on vacation the first part of July so the earliest date now is July 21st and 24th.
I called Brandon and he thought that maybe we shouldn't wait. I was so torn. Everyone I talked to said that the time between the 2 surgeries is the most difficult time.
Once we got home from therapy, my mother-in-law and Haley pulled up behind us. I figured I would just let things go for now and think about it later.
Later came too soon. After I dropped Haley off at dance class, I couldn't stop thinking about it. Obsessing about it. Brandon was out of town. Though my mother-in-law was here. She came over everyday after work and stayed the night (THANK YOU so much Debbie...I couldn't have gotten through the week without you!!!).
So the next day, I e-mailed Dr. Chugani. He said...I think it's Ok to wait the 2 months. Ruth will let you know if there is a cancellation, HC.
So now we wait. Planning on July 21st but hoping that if it is not up to God for Sophie to miraculously become seizure free in the meantime that it will be some other child scheduled to have surgery. Ruth asked and we agreed that we would be available at a days notice to head on up to Detroit if there is a cancellation.
3 comments:
Elaine- Sounds like it was a hectic day! We experienced the same exact scenarios and questioned our decisions. We second guessed the timing and scheduling of surgery too, even when they wanted to move us up because of a cancellation. However, It all came together and it will for you too.
The good thing is the date is down now, and Sophie is the only one on the cancellation list. Just pray on it and everything will work out the way it should. I personally think it would have been a long time to keep the grids in for 7 days. It is the hardest and most tiring part of the process.
I pray that everything goes smoothly and that Sophie's surgery will soon be behind her with seizure free days ahead. I also pray that this all works out perfectly with your pregnancy. Relax and take some time for yourself! I know it's so hard. It sounds like you have a great support system around. I wish I could do more!
You all are in our thoughts! Please call/email if you need anything at all!
I, personally, think that you made the right decision...I wouldn't leave Katie with "the grid" for any longer than necessary either.
You must be so excited and scared for that day. Sophie will have lots of prayers when the time comes! :)
Wow. That's a lot.
How you keep it all together is stunning.
I'd have made the same decision as well though.
Are you having the surgery in Detroit?
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