Ella's Pages

As Ella slowly woke up a while ago, she started crying. We were very glad to hear that sound for a change. We then realized she had sprouted a tooth. Her first! During her operation and intubation. I think we stumbled on a hitherto unknown secret recipe for avoiding teething problems. Hemispherectomy! (It might not be right for everyone) Anyway. She is doing better and even managed to opent the other (swollen) eye. The next step is to get her to eat something. Maybe later tonight.

After the CAT scan, Ella was taken off the respirator and the breathing tube removed! She instantly transfered from sedative induced sleep to natural sleep. She is doing that still. Everything else is stable and we are very pleased for that calm transition. We are told it is normal for her to be totally out of it for a while. Half of her brain was removed, what do you expect? She is looking much better too, the swelling is down and now the tubes are gone from her mouth and nose. We are getting there.

Here is the plan for today. This morning Ella will be taken to have another CAT scan (lucky we insisted on this). Doing it this way will not require her to be sedated again just for the CAT scan. The purpose of this is to see if there is any internal bleeding and whether hydrocephalus (pressure of the fluid in the brain) is developing. When she is back her sedative will be stopped and she will be allowed to wake up. Her breathing tube removed. If all goes well and she breaths on her own and feeds on her own, the rest of the tubes will be disconnected! We are very excited.

We are dying to meet the new Ella. Wondering what she will think of us.

Despite the fine progress Ella is making in reducing the swelling, it has been decided to remove the breathing tube and wake her up only tomorrow (Monday). The rational is that since the first time they removed the tube was not successful, they want to be sure that the next time she can breath freely. Also… Why rush it. And another also, today is the weekend with reduced staff. It is preferable to have a full staff in situations that can bring about complications. She is much improved as far as the swelling goes, we can actually recognize her facial features, it looks like she might be able to open her eyes at this point (with some effort though). The top of her head is still very swollen making it look like she has an elongated head somewhat like those seen in ancient Egyptian paintings. The plan therefore is to switch her sedation to a different faster reacting one at midnight tonight. That way tomorrow when she seems ready, they can stop that sedation, she will start waking up quickly and they will remove the tube. The tricky part is to coordinate the two. As they explained it isn’t desirable to have her wake up and still have the tube in because it is very uncomfortable, on the other side you don’t want to remove the tube before we are sure she can breath. It is very strange being with her for such a long time without being able to interact with her (though we do manage to raise her blood pressure and respiration rate when we talk to her).

Not much change. Ella is still heavily sedated and puffy. I miss her already!! I guess the upside of that is looking forward to being reunited. I think she looks much better today. Her swelling has gone down a bit. Also, when I went to see her this morning she didn’t have her big bandage on. They are going to leave that off. I answered a call at around 8 am in the mother’s dorm room. Dr. Sakko (assistant neurosurgeon) wanted to speak with me. I was relieved that it wasn’t anything negative — just an update. He told me that she would probably be in the ICU for a few more days. Too bad but there’s no rush. I’m just thrilled that she hasn’t had any bad side effects from the surgery. The nurse ordered special nourishment formula that they give her through the central IV (in the groin area). Poor thing, she hasn’t had anything in the way of food since Tuesday! We took her music player piece (the base of her mobil) in to hang on her bed. The nurse suggested that might help her. She can hear some background noise I guess. I hope she’ll hear us and the music and remember to get well soon.

Ella lost a bit of her swelling during the night and she continues to shed some of the liquids her body is retaining, though, not enough for them to attempt to remove the breathing tube yet. Maybe tomorrow. Today she is starting to receive some nutrition through the main line they put in yesterday. She is in stable condition and all indications are good. All we have to do is wait. All she has to do is a whole lot.

The new IV line is working and being used for delivering Ella’s medication and maybe later some nurishment. The medication to accelerate fluid loss has kicked in and it is starting to show some effect. Ella is peeing non-stop. This is very good news, we will start seeing the effects of that on her body soon. All the rest is stable and we are hoping that tomorrow another attempt will be made of removing the tube and allowing her to breath on her own.

Despite several attempts they couldn’t manage to insert a new IV in Ella’s extremeties. They are just too swollen. This isn’t a good thing because there are many medications that she needs to be getting but only one IV that remains functional. The decision was to insert one into a vein in her groin area (I forget the name of that vein, but it has one I assure you). The process went smoothly and she now has a more robust line in. An x-ray was done to confirm that it is in place. We are hoping that the swelling will start coming down. For one, we are approaching the magic 48 hour marker from surgery. Also Ella is now getting a medication intended at encouraging her to loose fluids. Throughout this Ella has been kept asleep, moving only once in a while when the medication runs thin.

I find myself frequently going back to Ella’s pictures from before surgery to assure myself that she has the potential of looking completely different than she looks today.

Dr. Duffy’s report was very optimistic. He said the operation went as well as it possibly could, and that the swelling is an expected phenomena. It was going to get worse before it got better. He remarked very enthusiastically that the movement she is showing on her left side is wonderful because it indicates that it was already controlled from the left hemisphere. Ella is receiving the blood transfusion now and later an agent that will start her on a process of shedding some of the accumulated liquids. On the negative side, two of the IV lines into her legs needed to be taken out because they were leaking and no longer useful. They are finding it very difficult to insert new ones because she is so incredibly swollen. Her breathing rate seems to increase when I talk to her. I wonder if that is really true. Mine will if she talks to me.

Ella’s blood count has dropped and she is going to be getting a transfusion in a few minutes. The reason this is happening, they think, is because of the continued swelling. A sort of dilution of the blood is occurring and that can impair her ability to absorb oxygen. Ella has gotten even more bloated. Her right eye cannot even be opened by the nurse to look at the pupil. This was expected. But they are not going to let her loose liquids on her own, but are going to induce it once she receives the blood transfusion.

Another issue is starting to be her nutrition. She hasn’t eaten since Wednesday at 5:00AM. If the breathing tube won’t be out soon they will have to feed her by inserting another tube to her stomach. The experience of reinserting the breathing tube yesterday has left the team wary of trying again too soon. They will probably not attempt it again till tomorrow morning, and only if there is significant reduction in swelling.

On the one hand I am glad that Ella is sleeping through all of this, her wound’s are healing and she isn’t feeling the pain of the multiple hookups, tubes and swelling. On the other hand I miss her already and want her back.