Ella's Pages

In general it feels like Ella is moving forward, no leaps and bounds but a steady movement forward. The most rewarding thing is that in the past few days Ella has regained her joy of life that was almost her trademark before surgery. She again seems to enjoy and be amused by her surroundings. This is great and makes being with her so much fun. Ella’s dexterity is improving consistently. She is becoming more accurate in getting things in her mouth, grabbing for toys, and following with her gaze. She is using her left hand a bit, though much less than the right.

The next test awaiting her are: next week an EEG test. This is intended to verify that there is no seizure activity going on in her brain. If (and we won’t settle for any other option) that is the case. A plan will be made to reduce the remaining medication dose slowly to nothing. The following test is a CAT scan to see what the status is with brain fluid pressure in her brain. Our hope is that there will be no problem and no threat of hydrocephalus. The further we get from surgery without that pressure developing the better her chances of escaping that completely.

Today Ella had her feeding test. She passed it with flying colors! The test was intended to verify that Ella is able to feed normally through her mouth without getting food into her lungs. Ella actually reached that conclusion a week ago and pulled out the feeding tube that was placed in her nose. But today that assessment was official. (not that we ever doubted Ella’s own objectivity). The test consisted of the feeding experts feeding Ella various types of food (that was all colored with Barium) and watching on an X-ray screen to see where it went. Ella ate anything they put in her general direction. Liquids, mushi stuff, you name it. When she started eyeing the x-ray solvents, they asked us to leave. So we are officially off the tubes and eating like a horse.

Slowly now, but at a steady pace, Ella is making progress. She seems to be in some pain when we move her around though, which is a little disconcerting. She even cries when being changed. She used to love that. Yesterday I thought maybe her irritability could be a sign of hydrocephalus, but then she seemed to improve some throughout the day. We are seeing more little happy grins and responses to stimuli. At times, she’s very focused on her toys, us or her favorite movies: Baby Einstein, Baby Mozart and Baby Shakespeare.

She is starting to hold her head up well by herself when propped in a sitting position. She doesn’t quite move her head around freely from side to side which makes me think that part of her problem might be a stiff neck or lack of muscle tone on one side.

This week she’ll get back on track with more intensive physical therapy. We are so happy that physiologically she has come through the surgery (so far) so well!!! Our guests left yesterday (and much help). We’ll miss you Grandma Lilly and Grandpa Dani!

After spending about 3 annoying hours in the Emergency room, the ER doctor that saw Ella contacted Dr. Sacco at Children’s and got the okay to let us try without the N-J tube. that gives us the go ahead to go back to bottles and even nursing! I felt a full breast so I thought I’d try nursing her. She took the breast immediately and sucked her heart out on one side after the other. It’s totally amazing but by the time I took her off the breast she had this very comfortable and satisfied look on her face. Then, I tried a fake sneeze and she broke into the biggest smile I’ve seen yet (since surgery, that is)! I was so impressed….. So, Ella is really getting back to her old self, vices and all. And, just as I thought nursing was over, I guess we’ve started up again. She is making strides each day — looking more awake and alert with more squirming and kicking. She had a bath this morning and seemed more comfortable than she has ever been in the water. She still cries when moved from position to position but she seemed to really love the sensation of the bath water all around.

Acting out all our hidden desires. Ella last night, in an unsupervised nanosecond, pulled out her feeding tube. We spent three hours in the emergency room, at the end of which they decided that maybe the tube wasn’t necessary after all. We should try feeding her orally and see how that goes. The result is this: The tube is out! Ella is sucking like a vacuum cleaner! This makes a huge difference and enhances the feeling we have a little girl rather than an appliance. She seems very happy too. We will still go to the swallow study test next Wednesday to make sure she is sending all the fluids to the right place. I am pretty sure she is.

The Eagle Has Landed! Ella is back home!

All the doctors came by to see her before leaving, they were all very impressed with the progress she has made. It is quite amazing! We were very impressed with the treatment and care she (and we) received at Children’s hospital, truly remarkable! We don’t want to jinx this or to tempt the evil eye so read the following in reverse: wonderfully! doing is Ella. (stop reversing now). It is wonderful to see her making such progress. The neurologist Dr. Duffy said that it is surprising how quickly she is moving both hands and feet, specifically her left side. He attributes that to the fact that the right side of her brain wasn’t ever contributing much to her functioning. She is enjoying being home more and more, she is very alert and interested. Her reunion with the teddy bear mobile was especially moving (yes I know that is what mobiles do). She clearly remembered it and was fascinated with it. Can’t wait to see what she will be doing tomorrow.

Ella made a lot of progress today. Besides the gradually better control over her fingers, toys and anything else that goes in her mouth, Today she made huge strides in sucking her pacifier. Up till now she only showed mild interest in it and dropped it after a few seconds without attempting to suck on it. Today she went back to her pre-surgery interest in the pacifier and sucked on it vigorously. She even fell asleep with it in her mouth tonight. This is good news and has bearing on her ability to feed from a bottle.

Tomorrow we are finally going home.

That will be a welcome change. I can’t wait to get rid of the feeding tube already, but I guess it is a small inconvenience (if it only lasts two weeks) after all she has been through… She also seems a bit more cheerful, not her old self, yet not as grumpy as she has been these past few days. She can concentrate on something and it keeps her interested and focused (and not cranky) for that whole time. I am curious to see her reaction to being back home, and to her bed, which she has always had a special connection to. The rounding neurologist today decided that the dose of her phenobarbitol (anti seizure medication) needs to be increased. This has me totally baffled. The intention is to decrease the dose to nothing not increase it and not try to maintain a certain level. The logic of this is even stranger if you consider this is done three weeks after surgery. Tomorrow I will try to talk to Dr. Duffy, Ella’s neurologist and see what this is all about.

OK. Here is the plan. On Monday we are going home! Yesterday we had a meeting with all people involved here with Ella’s care. They all felt that Ella is doing fine. The one issue that was the most discussed (out of proportion in my eyes) was the fact that Ella should not yet attempt to eat liquids out of a bottle because they feel she is not ready and can aspirate (breath the liquids). As a result we are going to go home with Ella still feeding with a feeding tube down her nose (NJ tube or ‘Zonda’). There is a pump that feeds a continuous flow of food to provide the calories and fluids she needs. In two weeks we will come back to the hospital for another swallowing test to see if we can allow Ella to drink from a bottle and get rid of the stupid tube. Ella is making a lot of progress, here is her current status: The sutures in her head are healing nicely, they won’t, in my opinion, leave a scar. Her hair is growing in. She is almost at Marine length now. The swelling has gone down from everywhere except the right and back sides of her skull. In those areas there is a noticeable pocket of liquid between the skull and the scalp. A bit strange. She is still a bit uncomfortable when moved. It isn’t clear what causes that, pain, muscle soreness or just the desire to remain stationary (I have a form of that). Ella is connected to the feeding tube and has an IV line in her left arm for the antibiotics. This will be taken out on Saturday when the antibiotics are stopped. No other connections exist. She isn’t connected to any monitors or beeping devices. Ella moves quite a bit, mostly with her right side. The left arm and leg are showing some signs of life (mostly the leg). It will probably be quite a while until she actually moves them. Her level of alertness, in my opinion, exceeds her alertness before surgery. She can be awake for hours (4-5) active, alert and interested, without a rest. She focuses more than before. She will look at something directly and keep doing it as long as it interests her, for long periods. Before surgery, her gaze was more darting around . Her attention span grows daily. She will play with a toy much longer than before, trying, for example, to put it in her mouth.

She is NOT happy. Yet (I hope). Most things are done with a somber face. This is very different from the happy, smiley Ella before surgery. Interested but not amused. We are doing more things with her now. Putting her in a stroller and walking around the hospital, taking her out of bed and holding her. She watches her videos very intently (Baby Einstein etc.). All in all, very optimistic. I am still amazed anyone can actually wake up after an operation such as she went through (half her brain was removed!). She is more or less back to her pre-surgery baseline. We are hoping for big strides in development once we get home. I told her to rest up.

There is lots of work ahead.

I think we are going to skip the rehabilitation hospital and take Ella home, when she is discharged from Children’s hospital. After a tour I did yesterday at Franciscan Children’s hospital, which is a rehabilitation-focused hospital, I thought that perhaps it isn’t such a great fit for Ella (or us). Ella doesn’t have any medical issues that need care in a rehab hospital, and we feel we can tend to Ella’s needs better at home. The hospital will provide physical therapy for about an hour or hour and a half a day. There is nothing else for Ella there for the rest of the day. Today Ella is making a lot of use of her right hand, grabbing things and putting her fingers in her mouth. Surprisingly, she is also showing some (minor) movements of her left hand, hopefully that will increase. The feeding test yesterday (they followed food down with live x-ray) showed that Ella is swallowing correctly and so we started feeding her solid foods. For now it is applesauce and cereal. The tube feeding continues for now, until she is able to eat enough. The neurosurgeon said her CAT scan showed an enlarged ventricle. This is not good news and could indicate an onset of hydrocephalus. He said it is early to jump to conclusions. After surgery with the new space made available things move around. Another CAT scan will be done in about four weeks. We will probably be going home with Ella in a day or two (barring any other complications). I think being home will be good for Ella, She loves her bed and loves music we play her there. It’s about time.

Ella had her swallow test yesterday. The speech pathologists placed her in a Tumble Form chair — just like the one she has at home. Then they X-rayed her while she swallowed various foods with barium. They started with formula and then tried thicker types of food ending with some type of nectar. They also tried different size nipples on the bottles and spoon feed her as well. I think they were being a little over-cautious because as far as I could see she was sucking everything down in the right way which surprised me because I thought she’d all but forgotten the sucking reflex. She took right to the bottle though. But they determined that she might aspirate on thin liquids and suggested that we give her only stage II foods right now (baby food/baby cereal, etc.). I’m happy we can give her something but it is unclear to me, if she’s sucking the bottle so well, how we will know when the coast is clear for giving her everything that she had before the operation and taking out the NJ tube. I was pleased to see her gulp down the banana mush just like her old self. I saw alot of improvement yesterday. She still grimaces in pain whenever she’s moved and her head is still a sagging swollen sac on one side but she was very alert, especially when Daddy came around at the end of the day. We still don’t know exactly when the discharge will be.

We’ve decided not to go to the rehab hospital.