Ella's Pages

Ella’s been having a pretty good time at school apparently and eveything is working out with Belle babysiting her in the afternoons. Ella comes home pretty exhausted and goes to sleep soon after. Often Belle has had to wake her up from her nap so I guess that is a good sign that she is tired from an active morning. Developmental changes/gains have been that she has pretty much transitioned to a juice box. We are now using the Rubbermaid refillable boxes which are great because she gets the benefit of a sucking the straw (the speech therapist from the school told us this is worlds better therapeutically then the sippy cup) yet it doesn’t move around and she should be able to hold the plastic box pretty well. SHOULD I write because she is on this kind of strike — even though she probably realizes that she can hold the thing herself she doesn’t want to which makes me think that she is having dependency issues especially since starting school. A regression since she started school has been the potty training. She doesn’t want to cooperate with me and has urinated very few times in the potty (with me) lately. She has been going with Belle so I guess she remembers what to do. We started doing the massage on her cheek. Dr. Bauer has recommended 3 times a day for 10 minutes. I get up early so I can stretch her and massage before she leaves for school at 7:45. The problem is that it is very uncomfortable for her and she cries throughout the whole 10 minutes. It is hard to tell if it is really painful or just bothersome. In any case, the crying makes it difficult to do. One very positive development related to the surgery has been less drooling. This is absolutely wonderful. Both Etan and I are afraid to jinx the effect by talking about it but compared to before the surgery she hardly drools at all. We can actually consider using the same shirt she wears for the following day!

Ella has been doing pretty well for just coming up to 2 weeks post-surgery. Plus, today was her first day of pre-school. I felt very accomplished today, as if we were sending her off to college. And the house was very quiet. It has been the first time that Ella has been in such a structured environment. Etan followed her transport and stayed with her approximately half an hour at the school. A number of kids were there for the first time so it was crowded. He happily reported that the program looks great and that Ella was very happy there. I was a bit worried that she would be shy or afraid to be surrounded by complete strangers but I guess she was happy to get so much attention and to be able to play interesting games. When Ella arrived home from school she was so exhausted. Belle (her new caregiver for the summer) told me that she took her to the bathroom, she peed right away and that when Belle picked her up Ella tried to fall asleep on her shoulder. I’m going tomorrow for a bit to see what they do there and how she does. We had a nice time in Maine and only once did I think that Ella was in some discomfort from her incisions. I gave her a codeine suppository and it seemed to end with that. Good. This surgery was so much easier than the last. Ella is really doing fine.

Leaving the hospital went very quickly and uneventfully. We signed the papers and left. Ella was in a good mood and we started her newfound freedom with a bath as she was smelly and crusty. Since she seemed to be up to it, we put her in the stroller and went out for a walk. Ella enjoyed the outside and especially places with many people or music. We ended up in the wonderful Chicago zoo, but only stayed for a short visit, Ella was getting tired. After spending this time with us at her side always (throughout the hospital stay) it is now difficult for Ella to part with us and going to sleep is a bit traumatic. Hopefully this will go away soon. She is still very swollen and this will probably stay with her for the coming month. At least that is how it was after the previous surgery.

The pain seems to be under control and for now the main challenges are getting her to drink and eat and also getting down the antibiotics that is mixed in with some juice. A few times today she reached out to some food, a cracker, or bread and started bringing it to her mouth. Then, before it could reach her mouth she dropped it, as if afraid of what will happen if she chews it. I wonder what her mouth feels like. Very strange probably. The configuration is all wrong. It is numb in parts and there is a section missing… Tomorrow we fly home.

I am apprehensive of the flight and hope it won’t be too difficult for her (and us). She is planned to start school in a week.

I arrived yesterday and was very relieved to see that Ella is in pretty good shape. I can’t see much aesthetic improvement because by the time I saw Ella yesterday afternoon, her cheek was big again due to the swelling. That’s to be expected. What surprised me is how ‘normal’ Ella is acting. Full of energy and happy, as usual. I took her on a trip around the hospital in the stroller this morning and she loved it. She was excited as soon as we got down to the lobby with arms flailing and rocking, kicking her legs — the usual Ella excited mode. Now the problem is keeping her entertained. Also, whenever I leave the room for a second she starts to whine about being left alone. Right now she’s asleep so I went down the hall to the family center to use the internet. Yesterday evening, Dr. Bauer did come by even though we had word from his clinic secretary that he wouldn’t be able to. He explained to me some of the next steps and the down side to this surgery is that they didn’t get to do as much as we wanted and thought they would. (We are still not exactly sure why). But the upside of that is that it is less traumatic for Ella. They only downsized her ear lobe and there is still a patch of fatty overgrowth on the side of the face before the ear. She started drinking a little bit last night and now is pretty keen on sucking juice from the syringe. Personally, I think we could leave soon – tomorrow morning at the latest. The only reason they’ve decided to have us stay is to allow her to get enough fluids and to finish intravenously the course of antibiotics she’s on.

Now that she is drinking (and had wet diapers and a poop) there is no reason that we shouldn’t be discharged.

Dramatic changes. Ella’s bandages were removed by Dr. Patel this morning exposing the new Ella face. As we noticed during the night, the swelling has started, right on schedule, so it will take a while till we really see the difference. What is visible is that her lower jaw fits the upper much better, she now has a slight under-bite. It seams like her mouth will be closer to horizontal too. There is a new scar along the jaw bone, up to the ear. The ear lobe has been separated and reduced somewhat. Ella now has much less nevus, the dark abnormal skin, we’ll see how much later. Ella was in a good mood and played, watched videos and didn’t seem to suffer from the pain. Unfortunately, we know the worst pain comes later when the nerves get a chance to think it over. Since she started looking a bit bored, we disconnected her from the tubes, put her in a stroller and we walked around the hospital for an hour. The one thing that isn’t happening is any eating or drinking. She rejects it quite assertively, pushing it aside with her left hand. Strange phenomena is that usually we have to coax any verbalization from her with lots of repetition and when she says it, it is partial and half-hearted. Now when I ask her ‘more food or all done?’ I instantly get a perfectly formed ‘all done!’. Apparently she can do much better when she needs to. Once she can eat we will be discharged. Probably tomorrow.

The staff here all comment about her sweet disposition.

Yes. It’s their job to say that. But it’s true you know.

This morning I returned from my conference in Canada and I’m exhausted. I am happy I was able to attend but of course it was hard to be so far knowing that Ella was undergoing this surgery. Today has been a day of preparing for the trip to Chicago. I’m leaving tomorrow morning ….I’m looking forward to reuniting with the “new” Ella. We certainly miss Ella’s happy disposition around here although I have a suspicion that Netta is happily basking in the extra attention that she is getting from Gaul, me and anyone else who takes care of her. Can’t wait to get going.

Ella’s day went well today. The first half of the day went by dozing and waking alternatively, her pain under control with Morphine. Later on, Ella sat up, watched videos, played a bit, (she can’t really move with the all she is connected to) and responded to singing. She even smiled a bit, though it is tough to identify under the swelling. I was surprised by rapid the change. She still will not accept anything to eat or drink. She also had a surprise visit from her grandparents Shelly and Marion. In the afternoon she was only on Tylenol so hopefully her pain is not too bad. The plan for tomorrow is to remove the bandages and drain, maybe we will be able to walk around a bit if we manage to disconnect from all the tubing. Michelle talked to Ella by phone and that produced the first laugh from Ella. Michelle will be here tomorrow. Ella will be delighted. The nurse’s care as last time is amazing, friendly, efficient and attentive. Ella checks to see that I am still here, by her bed. Then she allows herself to doze off.

Ella’s first night after surgery went well. She slept most of it with brief periods of waking up and crying. Sometimes I can calm her down by talking to her, touching her forehead or playing her music. The Morphine also helps and she is on a constant low dose. They wanted to switch her to an oral painkiller but I told them there is no way we will be able to get it down. Even at normal times it is impossible to get Ella to swallow medicine. I was thinking how lucky Ella has the disposition she has. If it were Netta in her place, merely not having any pain would not justify absence of crying. Other reasons would be found. Why is the kid in the next bed getting more morphine? Why am I here? And why the hell should I not cry? Among others. The challenge today is for Ella to start feeling better, to start drinking some juice and maybe soft foods like yogurt and spending time awake, not in too much pain. Judging from last time, the most pain arrives a few days after surgery. I guess that the nerves are too shocked from the ordeal to generate any serious pain, but once they rest up a bit they can take their responsibilities in a professional way.

Adam and Val who were so nice to me and brought dinner last night said Ella looked much more symmetrical. Dr. Patel said it would be a big functional improvement since her jaws are closer to meeting now.

For me it is hard to judge Ella’s symmetry, she always looks alright to me.

Took longer than I thought, but it is over.

Five hours after leaving her, Dr. Patel came out to report. It went well he said. No nerves were cut (my big concern). The lower jaw was shortened and brought in line with the upper jaw (two teeth were lost in the process), bulk was removed from the soft tissue and some of her nevus removed. Ella was taken to post surgery room not intensive care unit and she looks much better than after the previous operation. She was awake and looking at me, but now is asleep after getting painkillers.

It’s awful seeing her in pain, not getting what is going on. I can already see a difference in the way her jaws meet. The rest is under bandages. Poor sweet Ella.

Ella woke up in a great mood this morning. She thinks this ‘vacation with dad’ is cool. Even though we woke up at five thirty and she was not allowed to eat anything before surgery she was fine. At the pre op she was measure, weighed, prodded and questioned. It is amazing that after three surgeries, dozens of doctor visits, multiple hospitalizations and medical records the size of a Boeing 737 repair manual, they still ask if Ella was born after a full term pregnancy and whether she has allergies to medication. My theory is that medical records are write only and that it might actually be illegal to read them or at least forbidden by the union. We went over the list I had prepared of what they were going to in surgery. Dr. Bauer said he would not reduce the size of Ella’s ear this time since it would be risky with the reduction of bulk around the ear. This wasn’t consistent with what we understood or what Dr. Bauer had said after the previous surgery, (in fact during the first surgery) . But.. He is doing the surgery. You cannot argue with ‘risky’ but I wish they would give us a consistent plan so our expectations aren’t changed from time to time. I am in the surgical waiting room now waiting for Ella to come out. A familiar, hated situation.