Ella's Pages

It looks like we are nearing being released from Childeren’s hospital and being moved to a rehabilitation hospital. This is good news. Ella is considered in ‘stable’ condition and the primary focus now shifts to her rehabilitation. She has been spending many more hours awake lately, her concentration and focus improving. Yesterday she made (mind you, this could be my wishful thinking) the first vocal response to my playing around. Before the operation, she used to burst out laughing whenever we made the sound of a sneeze. Well, I tried that yesterday, and though she didn’t burst out laughing, she definitly made a sound in response. She is also showing much more interest in the pacifier, which before surgery was an integral part of her being. The feeding test they are going to be running today will show whether food she swallows actually goes down to the right place.

This has been an exciting evening and night for me and Ella. She was awake and alert a lot of the time and seemed comfortable except when she needed to be changed. The room is pleasant and comfortable and the nurses are extremely pleasant and considerate.( this compared to the abrupt and noisy treatment we experienced recently in Jerusalem’s Sharey Zedek hosptial). Ella nearly gave me a heart attack when involuntarily she started pulling the tube out of her nose. Luckily, I caught her hand and not too much damage was done. Her concentration seems very good and her range of vision very promising. She is a little darling and I have high hopes for her.

We had a rare break over the past day, thanks to Tzavta (Grandma) Lilly who stayed overnight in the hospital. Gaul, Etan and I slept at home. That makes it hard to report on Ella’s current progress. However, from yesterday afternoon and Lilly’s morning report, she is staying alert more time and the swelling is going down slowly. I held her for the second time yesterday. I think she is okay once she’s in my arms but getting her there looks painful for her. Everytime her head is moved in the slightest, she grimaces in pain. Her temperature is going up and down but it is not getting up so high. The only thing she is getting for that and for pain is tylenol. Strong antibiotics are improving the “light” pneumonia she has. They discovered yesterday afternoon that she has some kind of bacteria in her stool. So now the nurses are handling her with mask and gloves and Ella can’t leave the room. I don’t get it exactly because they have also told us that it is not contagious unless you are on anti-biotics…???? Time is what she needs now.

So… Today ended much better than it began. Ella had the feeding tube inserted in her nose and down to her stomach. She is tolerating it much better than I feared. It doesn’t seem to bother her at all. She has been given breast milk through it. The new IV was done without the need for sedation. It goes in her left arm, it too was much less traumatic than anticipated. Ella made a lot of progress throughout the day, the swelling is noticeably lessened on the right side of her face, she is much more alert and looking about. Also, she is finally showing interest in her pacifier. She now keeps it in her mouth for long periods of time, not sucking it yet, but, playing around with it in her mouth. A good sign. On the way down for an x-ray to determine if the new IV is in the right spot, Ella really enjoyed the ride. We took her in her bed through the corridors and elevators, she was totally into the sights. I got my first smile from her on the way. I am wearing it since.

Complications. Just as we were thinking Ella is on her way to getting better. Through a bacteria culture taken from her saliva they think she has a slight case of Pneumonia. This isn’t good. It was also known that there was a risk of getting pneumonia as a result of being on the respirator for such a long time, It could also be a result of her trying to swallow milk and it going down to her lungs. Now the plan is to replace the IV in her leg because it is in risk of contamination and insert a different one, and also insert a feeding tube to her stomach through the nose (NJ Tube). For this she needs to be taken to the anesthesiologists, sedated and intubated. Poor little Ella. Again being poked and pierced and sedated and prodded. It makes me cringe. It just isn’t fair. I hope this will be a short detour and then back to the road to recovery.

I arrived only mid-afternoon to see Ella — Etan slept in the hospital last night and then Lilly stayed with Ella for a few hours. I became concerned when I tried to move Ella even a little bit. She makes a really sour face and starts to cry. Later, Dr. Black came in for a few minutes to check on her. I told him about Ella moving less today than she was yesterday and the day before. I didn’t see her put her hand in her mouth at all today– not even an attempt. Dr. Black said we should watch and if the lack of movement is a clear trend, she should have another CT scan to make sure that her ventricles are not expanding (that would mean hydrocephalus is developing). I was not too happy to hear that but on the other hand, I’d rather they catch any serious side effects as soon as possible. The fevers have continued. Tomorrow they want to change her IV from a femur line to an arm one. The chance of getting an infection in the femur line which is right under her diaper is too great. Also, they are going to put in a nasal feeding tube tomorrow so that she can get some food in her tummy. Again, we’re not thrilled about that but maybe she’ll feel better to have something in there. I wish Ella was more responsive. Patience I guess is the key.

An uneventful day for Ella. Typically for her situation (we are told) she is having fever spikes, a few hours with fever, then it goes back down. She cycles through awake and sleep periods, sometimes more aware than others. When she is very awake she is able to open her right eye a bit, otherwise it remains closed. She tracks and she is interested in what is happening (to an extent). We were feeding her breast milk using a syringe because she does not seem to be able to suck yet. The feeding specialists came in today and said we had better stop that, Ella might be taking some of it to her lungs. They said that after such an operation it usually takes some time for kids to go back to sucking and swallowing.

They want to run a test on Monday that will show where the liquids are going when she seems to swallow them. They have an imaging device that can show it. What I don’t like is that till then she won’t be getting any food food. She is getting calories and nutrition into her vein, but it’s been over a week already since she ate anything. The doctors are also starting to talk about discharging her next week. I think it is a bit premature for that, right now it isn’t even possible to pick her up. She is in pain when you lift her head or turn her over and cries out. It seems like we’ve been there forever, but really it has been only a week. The place is so enveloping and the experience so overwhelming that it makes it seem like there is nothing else. Is there?

Small steps. Very small. Ella is in the neurology ward. The tremors seem to have subsided somewhat, they aren’t gone but they are less pronounced. She goes through a twenty minute cycle. Awake 20 minutes, asleep twenty minutes. When she is awake she looks around, doesn’t move, but seems to track us and other things around. The greatest reaction we got from installing the mobile she has over her bed at home on the hospital bed (thanks Vered and Lee for that mobile). She gave us the most alert look yet. She is only mildly interested in food and we manage to give her just a bit with a syringe. Hopefully that will change soon, otherwise they will be looking at alternative ways of feeding her… It is going to be a long process… Of course we were hoping that the minute she opens her eyes she will be back to old Ella and perhaps will even pick up a foreign language on the way. Maybe that wasn’t realistic, and we have to face the realities of coming out of such an (as my mother described it) impossible operation.

As I was writing this a mother we have been in touch with, whose son went through this same operation (done by the same doctor) about six months ago walked in with her son and a huge balloon to see how Ella is doing. Ella woke up and was her most alert yet. Will’s mom said Ella looks fantastic and the fact she is tracking and looking so alert is amazing. Will took much longer she said. She waited six weeks to get a smile out of him. (her hardest six weeks she said). Will was here, looking great. Walking around and talking (he is two) and interested in Ella’s toys. It was a very, very encouraging moment. Thank you Laura! Maybe it won’t be such a long process after all. It’s really up to Ella. We’ll just be here, if she needs anything.

The plan to insert a feeding tube down Ella’s nose was scrapped. Not because they didn’t want it but because they failed three times to insert it. For now I am happy about that. I didn’t like them trying but glad Ella doesn’t have another tube inserted. Hopefully she will be able to eat a bit tomorrow. Today she was moved from the intensive care unit to the normal ward. The level of care changed accordingly. The care in the ICU was amazing. In the ward, less so. Not such a great day for Ella (or us). The tremors in the right side of her body, mostly the right arm and hand persist. She seems uncomfortable and also had a fever now and again. We are told these are normal stages of recovery. But it is difficult seeing her this way. I hope tomorrow she starts feeling a bit better.

The night went by quietly. Ella cycles through brief awake, aware times and sleep. When she is awake she looks around and can progressively open her right eye as well. There isn’t too much reaction to what is going on around her, but it looks like she is tracking and is interested. She has a tremor that shakes the right side of her body whenever she is awake. I hope it has nothing to do with pain, but no one can say for sure. The Neurosurgeon said this type of tremor often appears after massive brain surgery and should fade away soon. Since she isn’t yet showing the ability to eat from a bottle, the plan for today is to insert a tube through her nose down to her stomach and feed her that way. It is important to get some substantial nutrition to her and help her overcome her weakness. She hasn’t eaten since Tuesday (one week ago) or gone to the bathroom (metaphorically speaking). With every awakening, more of Ella is emerging.

This is going to take time, but we are impatient. She will probably be moved out of the intensive care unit to the neurology ward.