Ella's Pages

Ella had a much better week, this past one. She was happy most of the time and she cooperated well during her therapies. I think she is finally getting over the trauma of the operation. Unfortunately though, today she woke up with a slight fever and she’s been very touchy and cranky all morning. Netta’s been on edge too starting yesterday evening when she was very cranky and whiny. We got a call last week from Dr. Patel who tentatively set Ella’s next surgery for June 8th. That is a good time for us. I wasn’t too pleased that he mentioned for the first time that we should come to Chicago for a “check-up” in April or May. I’d rather not have to make another trip even though we could do it in a day or just one overnight. Mostly I’m not thrilled about the expense and I wonder whether it is absolutely necessary, especially since Dr. Bauer didn’t mention a check-up visit when he followed Ella in the hospital. So whether we will go before June is still questionable.

Ella’s sutures seem to be healing well although the cheek is still very hard and we can’t do enough massage on them. Ella doesn’t like the massage at all and fights it unless she has a video on to distract her. Even then, when massaging the incision on the side of her head near her eye she twists and turns away, so it’s hard. Now Ella has new braces. She has AFO’s with hinges and she has a wrist brace to wear during the night. It is very restrictive but apparently is designed to pull her thumb out and keep her fingers straight. Hopefully, Ella’s good nature is coming back, with a mild setback now (due to illness). We miss her pre-operation personality!

The challenges and frustrations continue with Ella. Although she seems to be over most of the physical impact of the operation, her personality has changed so much since we got back. She is cranky, fussy, will-full, uncooperative. It might be the terrible twos. It might be discomfort. It might be her way of recovering from trauma. We just don’t know. All last week she was completely uncooperative with Colleen, her physical therapist.

Often she has cooperated with Beth who has resorted to giving her “time-outs” and silent treatments. The other thing is that she only napped one day during this past week. The problem with that is that she needs the sleep. by six in the evening she’s exhausted and can barely eat her food. Last night, she was falling asleep at dinner so we put her to bed at 7. She fell right asleep then she woke up crying at 4 am. We whisked her away so she wouldn’t wake Netta up as well and brought her into bed with us. She cried off and on for about 45 minutes, then fell asleep. I think she wanted us to play with her or to watch a video or something. When she doesn’t get it, she cries. Now, we’ve decided there’s only so much catering we can do for her during the day — She can’t watch videos all day and she too cranky to do exercises so we have left her by herself with toys — “alone time”. We’ll see what happens but so far she doesn’t seem to get the hint. I always wondering what a parent does with a child that’s very developmentally delayed. I mean, what does the child do all day if they don’t get the concept of imaginative play and they aren’t able to get around on their own? Ella can get around using the gait trainer but she would very quickly get stuck on something and probably just start crying. So, unfortunately, I have arrived at the point when that question is relevant to us.

What does a parent do other than sit the kid in front of the boob tube?

Well, we seem to be over the worst. At least for now. Ella (we think) is no longer suffering from pain and she is returning to her usual activities. She is totally back to feeding herself though the new configuration of her jaws and teeth makes it hard for her to attack certain foods. It is sad to see her go for a cracker biting full down on it only to leave absolutely no impression on it.

Her upper and lower jaws have so few points of contact, it is a wonder she manages to chew anything at all. Operation #2 should help with that, however with the improvement will come the cycle of hospitalization, pain, bewilderment… I don’t want to think about it now. But I want to get it over with. Surprisingly, through all of this, Ella has managed to move forward with her communications skills. For one she is back to vocalizing. A lot. She goes through lengthy and detailed descriptions of events and the theories she has. Unfortunately they are all encoded in her proprietary dadada nanana system, so we can only imagine the extent of her descriptive abilities. Secondly she has added another sign to her sign language repertoire. This is ‘my turn’ and is used whenever she and Netta are playing and she wants the toy.

The swelling in her face is very slowly going down and the sutures are also making themselves slightly less prominent. We will need to start massaging the right side of her face in order to stimulate the development of blood vessels that have been severed in surgery, as well as reduce the swelling of the muscles, helping to get back to movement on that side. I definitely miss Ella’s smile, with her right side paralyzed, you only get a hint of it.

After consulting with our wonderful Dr. Marcus (Ella’s pediatrician) and getting her on a high dose of appropriate pain medication things have come back under control, amazingly. We hady two-three days when we thought (or I thought) we’d go bezerk, now it seems back to “business-as-usual” almost. Today (Saturday) Ella slept for the first time during the day. She had her usual two and a half hour nap and didn’t even cry when I put her down (although she did when I took her out of bed). Finally, Wednesday, she slept the whole night but not before we tried Dr. Spock’s method that originally worked on Netta. We put her down in bed once she was unbearably tired, whining and crying and just let her cry. We closed the door and I timed her screaming. She kept up for 50 minutes! We could barely stand it, but we knew that she had to go to sleep. At this point she had already been on codeine/tylenol supositories that we got custom made for her) for 24 hours. I felt there was nothing more we could do and was just hoping that she would eventually doze off. It worked! She did fall fast asleep and slept the whole night. Sleep is so important for her recovery. Since then, she’s just getting a little better every day.

Now we’ve halved the codeine/tylenol and she seems to be doing well. The swelling is slowly (very slowly) going down and Ella is returning to her old self. She even fed herself tonight with the usual fare: cheeze and pears. She still is a bit on the cranky side but we can do some things with her which makes a big difference. When she was really in pain all she wanted to do was watch video after video. This afternoon we did some walking to music.

Ella gets tired quickly but she’s good for a few cross-livingroom strolls. Well we sure have learned alot about this process and will be much more prepared for the ordeal of part B of her surgery coming up.

Well… Just as we were thinking Ella is on her way to recovery, along came last night. Ella seemed to be troubled by something, and we couldn’t figure out what it was. She would cry hysterically and not calm down regardless of what position we put her in, held her or lay her down. The only thing that had a calming effect was if we put on a video for her. Suddenly all is fine. She was getting her normal pain killer (Tylenol) and we weren’t sure whether this was pain, discomfort or some anxiety. This lasted the whole night. Ella was up throughout, refusing to lay down (as if the pain intensified) and not giving in to sleep. It is particularly troubling to have Ella cry like this because it is so different from her usual calm self (besides, they way she looks now combined with the crying would bring a rock to tears). It is totally heart wrenching. We tried the more powerful pain medication with no results. Her all out crying sometimes sounds like a general wail for all the misfortune that has targeted her. Maybe I’m injecting that meaning. To add to the celebration, this new medication comes in the form of syrup not a suppository that we have to conceal in juice and then plead with Ella to drink (which she only sometimes agrees to). Later on today I am taking her to her pediatrician to see if there is anything else that could be going on, an ear infection, constipation, who knows. Of course we are worried this could have to do with the shunt (that would be incredibly bad timing) but we don’t think that is the case. She is alert, and has an appetite, not too typical for hydrocephalus. Dr. Bauer, in a phone conversation said this might be the nerves coming to their senses (so to speak) after being knocked out during surgery.

Typically right after surgery, patients don’t feel too much pain. You would want the nerve revival to coincide with the healing. But I guess it doesn’t always work that way… In any case, I am amazed that Ella is functioning at all. At this point she hasn’t slept in more than 24 hours. Not a wink. (We are close to that too).

We made it home yesterday afternoon and the flight wasn’t half as bad as I thought it would be. Ella was really fine, not tired at all. The plane was empty enough for me to sit in the back with her in an empty row. I laid her down completely and tried to get her to sleep. She didn’t. At this point we are syringe feeding her and that is what I did most of the time on the plane. She was hungry enough and we had Gerber’s and apple juice from the hospital. Ella looks like she’s been a very bad accident and I think we got alot of sympathy while travellng. It is hard to know how much of the puffiness in her face is from the area they didn’t debulk (and plan to at the next surgery) and how much is from the this surgery. Around her right eye she is clearly swollen but otherwise it is hard to tell. It will take a long time until we will be able to see the positive effects of her “new” look. Dr. Bauer said the swelling can take months to subside.

Ella is very cranky today (Monday) — so different than her usual easy going temperment. She’s exhibiting separation anxiety for the first time too. She cries the minute I walk away from her and Beth is no consolation. (Yiks!). I doubt she is in real pain b/c the crying is so connected to me. Well, it’s definetly been a tough week for all of us (except for Gal, who had a great time at his Dad’s!). Ella has been through so much physically and I’m about ready to go nuts. I’m tired, I have a bad cold and I wish I could say Ella looks great. Apparently, this is one of those long term treatments — just like everything else with Ella.

Ella is slowly returning to herself. Though clearly weak and very passive, today she started interacting with her surroundings. We found a stash of toys the department had and Ella started playing them in her focused unrelenting way. She watched several videos and even sat in a stroller as we walked around the hospital. Her swelling is slowly going down, though still very prominent and the incision scars are looking better. The general plan is for her to be released from the hospital tomorrow and for us to fly home the day after. It is a bit scary as we are not sure how we will handle her on the way. There isn’t much that is being done medically but she seems so fragile. I hope tomorrow she will seem stronger. We have made progress on the feeding front. Today Ella ate apple sauce, yogurt and pureed pears. She objects initially and then is more accepting. Never willing though. We understand we will be feeding her this way for a few weeks. We are using a syringe and feeding her through a tube into her mouth. Hopefully she will be able to handle a bottle in a bit.

Big changes this morning. Ella is awake and more and more alert. We have been sitting her up in bed and she is watching videos and reacting to things around her. She even started making her sounds, semi-talking noises. We started feeding her some applesauce through a syringe and she objects and eats it. It is difficult to tell if she isn’t interested or if it is just Ella isms. She never likes to be fed she wants to manage it on her own. It looks like the pain isn’t too bad at this stage, She is only getting Tylenol and not complaining too much except when moved. I’m glad. The swelling is still massive on her right side with her barely able to open the right eye. But it is definitely Ella under all that. The plan at the moment is to move her to a regular ward this afternoon. At that point they will disconnect her from all the cables except one IV line. Hopefully we will be able to hold her and maybe even start walking a bit tomorrow. It is amazing some parents skip this part of parenting altogether. For us it is just part of being Ella’s parents. Netta was in to visit Ella throughout, she looks at her, not totally getting what is going on. I wonder what she makes of this.

Here I’m sitting in the ICU. Ella’s asleep and from all perspectives things are going well. From time to time she starts moving around which I don’t like because she whimpers as if in pain and at this point, because they’ve ex-tubated her and she is breathing on her own, they don’t give her anything but one rectal Tylenol every 4 hours. As the hours pass by she seems better and better, less swollen and more recognizable as Ella but without her extreme asymmetry. It’s quite unbelievable that this can be done. However, at the same time, I feel like this is a real “luxury” surgery. Especially when there are children around that can’t breath or have just gone through an 18 hour liver transplant. The care is excellent here. Each child is in a semi-private room with at least one completely dedicated nurse. It is uncomfortable being in the ICU though. Parents can’t sleep in here at the child’s side but rather have to grab one of a limited number of cots and then sleep in the waiting room. At Boston Children’s Hosp it is more comfortable in that respect because there was a separate sleeping room for parents that was available at all times.

Ella had a good, uneventful night in the intensive care unit. She is kept sedated and intubated (she breathes through a tube with a ventilator assisting). The plan this morning is to remove the tube and probably move to a regular ward. Dr. Bauer was here and claimed she is doing great, though for me doing great is when she is dancing to music. During the past two weeks or so Ella has been saying the word ‘tom’ a lot and we could not figure out what she was talking about. Just ‘tom’ in a dreamy voice. Well… her nurse last night was… you guessed it Tom. Coincidence ? I don’t think so…