Ella's Pages

Dear Ms. Page,

I agree with you that maybe if I’m nervous I should talk to someone. My sister, Ella is almost 11 months old. She has (had) a condition called Hemimegilinsefuly (I don’t know how to spell it) which is a condition that your brain growing cells that are somehow altered and the cells on one side of the brain grow faster than the other. This causes her to have a very high risk of having seizures. Some people think that her cheek and ear are larger than the left side because she had a larger brain on the right side. Well they thought wrong. The reason why her cheek and ear are larger on one side than the other is a totally different problem. I don’t know what it’s called because I just learned that something like 4 days ago.
So far I feel fine with Ella having this condition because I don’t really know well about normal babies because I’ve never had any other siblings. She also likes me, I don’t know why but usually when I talk she laughs. Our dog also likes to sniff her. It’s sort of funny because our dog is huge and she is small. When my step dad, Etan plays her music on the flute she likes it, but when I play on the piano she gets tired. Also when I tell her stories of how I beat a game on the computer, she loves it. I think she is a sweet child with a happy attitude. I think that because she laughs a lot and from about 1 to 6 months she almost didn’t cry at all. And then after that she knew what she wanted and cried, but not as much as a normal child.
On the day of the surgery I got up at 5 in the morning because Ella had to be in the hospital at 7. Then I ate breakfast and got ready to go to my uncle’s house. When I got there I just waited for my uncle to take me school. After school my grandparents took me to the hospital and left. I was in the waiting room with my parents. To keep myself busy I did homework and read. Each hour a nurse came to update us on what’s going on. I wasn’t as nervous as I thought I would be. While we waited we had my great aunt with us and we took a small tour around the hospital. When we got back, the main surgeon, Doctor Black came to tell us what happened. Well, he told us that she lost a lot of blood but they gave her many units of blood. Although we had bad news then good news came and they were almost done. He said that they stopped the bleeding already and are now closing her skin. It turned out that the surgery was fine. Just now when they wake her she will be in pain.

Your student,
Gaul

The CAT scan results and blood chemistry were good enough for the ICU doctors to try and remove Ella’s tube and see how she is breathing on her own. The first trial didn’t go as well as they expected and they put the tube back after about 30 minutes.

The reason is probably the sedation and the massive swelling. I guess the next time they try this will be tomorrow. Ella is in stable condition and ‘looking good’ according to all doctors.

I wonder if they can do anything about our breathing.

The anesthesiology rounds at the intensive care unit were just done. They concluded: – Ella is doing well, in stable condition. – A CAT scan will be done later today, this is standard procedure after surgery. and will let the neurosergeons see what’s going on and what the state of bleeding is. – If. (big if) all is alright and, the CAT scan is done early enough in the day, they will think of removing the tube today and letting Ella wake up. – More likely though, this will only happen tomorrow, to be on the safe side.

Ella keeps moving about from time to time. Good signs. At one point she opened her eyes for a second.

Ella had a stable night. It is a bit frightening to look at her because she looks like a wiring accident, connected to every possible machine and tube. Her blood chemistry is surprisingly stable considering the amount of blood and assorted liquids she received during surgery and after. Dr. Black came by late last night (what a day for him, how does he do it?). He had some very encouraging things to say: – Ella is exactly where he wants her to be right now. He sees no cause for thinking anything is wrong. – He removed only (ha, ONLY!) the right hemisphere, and managed to leave ALL the base structures intact. That is good news, and will effect Ella’s recuperation. – The excessive bleeding during surgery came from the Dura, not from the brain itself. The Dura is the (as far as I understand it) tissue between the brain and the bone. Ella had an unexpectedly elaborate vein network there. – The brain tissue removed was definitly very very abnormal. He cannot see that it contributed a single thing to her functioning.

Ella is kept sedated and will probably be left that way for today and maybe tomorrow. The swelling can introduce various problems and they want to be ready in case those arrive. We are told that the worst is yet to come as far as her post operative condition. Ella is expected to swell even more till about 48 hours after surgery. Then an improvement is expected. When the sedation goes down a bit (every few hours) Ella moves around a bit. She is moving both sides!! Dr. Black also noted that with enthousiasm. Whenever I talk to her through her sedation, the blood pressure monitor responds. This could be my imagination. It could be doing that when I am not around too. But I don’t think so… I want to see her eyes again and hear her try and take part in the conversation. It will probably be a while.

I am glad you can only have one hemispherectomy. None of us could survive another.

Just around 7 pm they finished the surgery. Dr. Black came out to give us a briefing and found Etan, Gal and Carl — (Aunt) Karen and I had just left for a walk. Apparently, the surgery went well however there was massive bleeding that took a long time to get under control. Ella was just being cleaned up and prepared for the Intensive Care Unit. We all went to dinner in the hospital cafeteria and then went up to the see Ella in the ICU. The anesthesiologist met us there — Dr. Myers. She reported that they gave Ella a record number of 10 units of blood. That amounted to completly replenishing her total blood supply about 4 times. She also got record numbers of other fluids: anti-coagulants, plasma, platelets, etc. etc. Pretty scary. Also, they were just working on getting her blood pressure stable and we could go in and see her once she became stable. Etan and I waited another hour (Carl, Karen and Gal went home), and then asked to be taken in. Ella looked a sight. Quite shocking in my opinion even though this is to be expected. Not so much by the number of tubes and equipment but because of the swelling. She’s really swollen like a ballon from head to foot. It hurts just to look at her. The swelling will get worse but we have been told it looks much worse then it really is. I’m relieved that Ella is stable. She was described as a “real trooper” by the staff.

The 6 o’clock report was about more progress and closing up the dura (membrane covering the brain) and then the skull bone. I’m very tired from all this ordeal and hoping to see Ella very soon. I’m worried about the last stages and post-op. So many things can go wrong. I just think we have to have faith and keep opitimistic. They will give us another report at 7 pm.

Also, they have called off the dermabrasion procedure. The nurse said they decided in the OR that Ella “has been through enough today”.

5:00. It is still going on. The last report just came in. Ella lost an enourmous amount of blood. The right hemisphere has been removed. Their task now is to stop the bleeding so they can start closing up. The last report said that ‘the end is in sight’. Much better than the previous one ‘still a lot of work to be done’.

They are saying throughout that Ellas vital signs are stable, her blood pressure good and she is holding out fine. Enough already.

I miss her smile.

It’s 3:00pm. They’ve been at it for 5 hours. The reports are that all is going as planned, although she has already received 4 units of blood. That worries me. I hope it means nothing. The operation will probably go on till around 6:00. We will get another update in a hour.

Letting Ella be taken by the anesthesiologists was the hardest part today. It is now 11:30am. We’ve been at the hospital since 7:00. Ella was in a terrific mood. Everything amused her. She was checked over by the admitting nurse and then by the anesthesiologists. They all thought she was in excellent shape. Next we were taken to the holding room where we met all the doctors and told again what the procedure will be. There was some concern that there will be problems with the intubation, as a result of Ella’s asymmetry. We asked for a special update about that. Then she was dressed in a pajama and taken to be prepared. We were wondering when we will see her smiling again the way she was smiling all morning. Will she be the same Ella we know? We have the illusion of control (and even that is very slight). Yet seeing her being carried off illustrated the total lack of control we have in this specific situation.
We are in the family waiting room. We received two updates till now. One at around 10:30 letting us know that there were no problems with the intubation. She was doing just fine. The other at 11:20 telling us they are ready to start the actual surgery. I cringe at the thought of them cutting open her head. I can’t seem to get that picture out of my mind.
So we sit here, completely helpless, hoping they are doing the best possible thing for our little girl.

We met this morning with Dr. Rokov the neurosurgery-team anesthesiologist. He was very informative, patient and just a nice guy. He examined Ella by listening carefully to her lungs and breathing. He explained the risks and the reasons for hesitation in this case but after conferring with Dr. Black and another anesthesiologist, he gave the go ahead with the caveat that if during the first hour of sedation and intubation, she doesn’t respond well, they will have to postpone the operation. Over the weekend Ella consistently improved from being somewhat congested Saturday morning to being pretty much her old self yesterday. She slept about the same and ate well too; she was very interactive and smiley. I realized last night that I had thought she had a fever during the week when actually she didn’t. The reason: confusiong regarding fahrenheit body temperatures. All along I thought over 96 degrees to be a fever. Then I read Dr. Spock’s book of baby-child care and discovered that even 99 degrees is okay. Well, I felt pretty silly but also very, very relieved. I feel now that there is no time for anxiety. The operation is just around the corner. It is scary but we hope it will make all the difference for Ella’s quality of life in the long-term. We are lucky to have this hope available to us (plus good friends and family for support).