Ella's Pages

Surgery is over. Dr. Bauer and Dr. Patel came over and reported on how it went. They were very proud of what they achieved in the operation. What was done was to adjust the upper jaw to symmetry and remove a large amount of fatty tissue on the right cheek. What was not done was the rotation of the lower jaw. They felt that adding another incision would inhibit the ability of the skin to get blood supply so they decided to put that off for now and do that next time together with the ear reduction. We had to wait about an hour before seeing her. Ella was moved to the intensive care unit where we saw her. Of course the first encounter right after surgery is scary. Swollen on one side with blood and bandages she looks Ella with a bit of Uday Hussein after being captured (if you’ve seen those photos). Ella is still sedated and seems relaxed. I am glad she gets to spend the first night after surgery asleep, hopefully avoiding most of the pain. The care she is getting here is superb, with constant monitoring and tending to her. It is hard to see much of her face as there is a big bandage on the right side and what is exposed is very swollen, but her nose and mouth seem more centered in her face. I’m worried about how she will fare through the next few days.

I am sure there will be pain, how could there not? Her facial bones were cut in 5 places and the right side of her face opened and exposed with parts removed. Hopefully she will get enough sedation to make it bearable. I also don’t know how she will manage the basic functions of eating and drinking with this new facial configuration. We will probably need to go back to spoon feeding for a while. I don’t know what she will make of all of this. One moment she is listening to music with a nice doctor checking her over, the next she wakes up with different feeling mouth, lots of pain and bandages all over. I hope it won’t turn her off music (or nice doctors). It’s a relief to have this major part of her reconstructive surgery over.

Dr. Bauer came out with an update some 2 hours into the operation. He said that they had decided to go with incisions along the nose and smile crease rather than from the top of the head (they had discussed these two options during our meeting on Sunday). That approach gave them very good visibility onto the areas they are working on. The first finding was that there was a really substantial fat padding that was extremely well defined and was removed easily. Dr. Bauer claimed that this in itself would help visually to promote symmetry.

The next steps are more involved as they include changes to the bone structures in three dimensions, rotating both the upper and lower jaws after making two cuts in different places. I can’t help but sit here and imagine it, even though I am trying to distract myself with every trick I know. Ella is doing fine, he assured me and all is going according to plan. I hope she is having nice dreams with lots of music.

Just as we were trying to distract Ella from the fact that she had not eaten since last night, the phone rang. Dr. Patel, where are you? Surgery was set for 1:30 so we were thinking there is plenty of time(at 10:30). Turns out they changed the schedule without telling us… We jumped into the car and raced to the hospital . Not the way we had planned. Ella was in a great mood. Ignorance is bliss. Preparations were done quickly and she was taken in. We are waiting. It’s been two hours.

Our first meeting with the doctors in Chicago was a bit overwhelming. We met Dr. Bauer and Patel early Sunday morning and went over the surgery plan. It wasn’t that we weren’t impressed with them, we were. They were very professional, personable and answered all our questions. The troubling part was talking about Ella like she was a carpentry project. The discussion was around what to cut? where to move what? And what will get hurt. It was very disturbing to see the model of Ella’s skull. The degree of asymmetry is really striking. Ella was sitting right there, making the situation more surreal. It was evident they had given the problem a lot of though. The model had various marking for alternative approaches and several templates were cut out of film to measure things on it. It seems the procedure will be more dramatic than we expected. Surgery will take some 5 hours and then Ella will need to remain in the intensive care unit for two days, sedated and breathing through a tube. The reason is a precaution because swelling may occur blocking Ella’s ability to breath. After two days she will be moved to a normal ward and should be released after a couple of days. We are both very apprehensive about the whole business.

What is pushing us forward is the thought that it will make things better for her down the road. Ella was very sweet today and behaved wonderfully at the restaurant when we went out with our relatives. I am worrying about the difficult time she will have after surgery and the setbacks to her development.

Yesterday (Friday) about mid-day we finally got a call from Chicago saying that they had what they wanted from Tufts and are ready to go ahead with the surgery on Tuesday. Talk about last minute — in a few minutes we’ll be getting in taxi to go to the airport! This was an exasperating week. At the end of each day Tufts had told us that everything was in the process of being worked out and they would pay 100% for everything no problem, don’t worry etc., etc. and then the following morning we’d get a call from Chicago saying they were cancelling the surgery. That’s what happened on Thursday. I was in the middle of class and got a call from Daisy, the insurance coordinator for Dr. Bauer’s office. She told me to forget it because Tufts just wasn’t coming through (more or less). Then I called Kim, the woman dealing with our case at Tufts, told her what they told me and she said “Who said that? That’s not at all the case”, blah, blah, blah. Then I realized that the absurdity of it is that Chicago wants their “guarentee” of payment through a specific contract and they want it signed. That’s understandable. Then Tufts probably wanted something vague like: the word “COVERED” stamped on their letterhead. So Chicago says to the patient “forget it” expecting the patient to go nuts at the last minute and put pressure on the insurance company to give them exactly what they want. The problem here is that the patient is in the middle with little recourse, not knowing what the hell to do and what’s true, right and just hype on the part of either side (insurance co. or doctors/hospital). Dr. Bauer did send me a note kind of apologizing for the uncomfortable situation which was considerate of him. In any case we are on to Chicago for Ella’s plastic surgery. Hopefully the results will be worth all the trouble and not too painful or difficult for Ella.

Well, guess what? Trouble with the insurance company again. I got an e-mail from Dr. Patel regarding where to meet with him on Sunday morning. Wow, he’s so dedicated. He proposed we meet with him at 8 am when all the offices will be closed and we’ll talk about the model. Does he sleep? But then, I also had an e-mail from the insurance coordinator of his office right after that. Now Tufts Health Plan refuses to agree to a “case rate” for the surgery with Children’s Memorial Hospital. I’m not sure what this means but it’s not good. Apparently, it means that despite the “approval” from all the medical reviewers some Tuft’s bureaucrat won’t agree to what the hospital is asking for so we’re almost back to square one!!!! Tomorrow going to be another day of calling around and trying to get this solved and we are supposed to be leaving on Saturday. This is so annoying. The insurance companies are hazardous to your health just by the amount of stress they cause. This whole thing should have been solved months ago and we thought it was.

In the meantime Ella has a full blown cold which she probably got from Netta who has been coughing for about a week already (I think she got that at day care). Also, from about noon on Sunday Ella was very, very irritable and crying and didn’t want to drink or eat anything. Etan and I were so worried because it is so unlike her. She didn’t have a fever although she seemed to be in pain somehow. We almost called neurosurgery at Children’s because we thought it might be a shunt problem. She went to sleep about about 5:30 pm. We still don’t know what it was (maybe the start of the cold) but in anycase she woke up feeling much better in the morning. She wasn’t herself yet but she did eat and drink. Since then she’s returned to herself bit by bit.

Things have straightened out with the insurance company but not without me making about 3 hours worth of calls to various involved parties. As it turns out, the medical reviewer who denied the surgery when Children’s Memorial called didn’t have all the PAPERWORK! The problem is that there are too many people involved due to our lovely, efficient health care system! I didn’t know what paperwork had been sent b/c Dr. Marcus’ office takes care of all that and when Dr. Patel called me from Chicago he made it seem like a lost cause with “Who should I send the skull model to? Do you want it?”. That was an alarming question just a few days before the surgery! So we are gearing up for our trip and thinking about how the surgery will affect Ella.

Also, we’re wondering how hard it is going to be trying to manage with Netta while Ella’s recoverying. Ella is doing very well now. Making progress walking and much of her vocalizing has returned. She so easy going and so happy. It’s hard to think of her being in pain. Hopefully, any pain, difficulty and setback will be worth it in the long run. I really hope the surgery makes a difference for her. I guess I’ve resigned myself to the fact that she will never look completely normal. The most we can hope for is less assymetry and no regrowth. I think those are tall orders with her condition.

Big insurance company problems today. I can’t believe it. We just got back from a long weekend vacation and there was a message from Chicago Children’s Hospital, Dr. Patel’s insurance coordinator. She reported that Tufts has now denied our request to have Ella’s surgery done “out-of-network” in Chicago. We understood, and so did Ella’s pediatrician who prepared all the paperwork, that everything was approved 3 months ago. Now they’ve reneged. I don’t get it. Tufts already put out about $2500 to have the skull model made. I immediately called Dr. Marcus. She’s at home but her office manager who knows about all of this says she’ll try to do something. We’ve already bought our plane tickets and made all these arrangements. I just don’t get it!!!!! So more work to do on this and in the meantime a lot of stress. Last Friday, Ella had an appt. with Dr. Duffy, Ella’s neurologist (epileptologist). On the down side, I was alarmed to hear from him that Ella showed some spikes in her brain waves during the sleep phase of her beam test. He said that these are worrisome but later he reassured me by saying that some people have this kind of spike without ever having a seizure. But to quote him, “We should keep an eye on this”, I guess meaning that she could end up having clinical seizures from this. Despite that report, he was very impressed with all of Ella’s skills. He looked at her hands and arms and felt that there was little atrophy. He was very pleased that we are restricting her right hand to get her to work on her left. He also reassured us right away when we said we were worried that she had lost some speech skills.

Apparently, my suspicions were right that when there is a lot of progress in one area, others may regress. Ella has made so much progress in gross motor skills lately that Dr. Duffy thought it natural that she would regress in speech. Anyhow, in short, we left with some worries but also reassured and feeling good about our work with Ella. Also, and not to be overlooked, is Beth’s great work with Ella. So many exercises and time spent on walking, sitting, crawling, rolling, eating etc., etc., is due to Beth’s diligence. We are lucky to have her.

As if in answer to Etan’s last entry, Ella has made tons of progress in the last week. She is really walking now. I mean I only support her arms. I can’t believe how fast she’s made this progress. One can see the difference by the day. Also, despite her seeming to have regressed in speech and vocalization, I think that cognitively she has made progress too. She is much more attentive. For example, when having a story read to her. She gets it right away, or at least appears to understand something about the story. Barbara, her vision therapist was also pleasantly surprised today when Ella was able to put small balls on a track toy that she was never quite able to do before. She’s more energetic and every day, Beth tells me that she uses the toilet. I never seem to hit the right time for a poop but when we put her on the potty in the morning she at least pees.

Ella has been going to playgroup by herself. A minivan comes and picks her up. Etan and I joke. We ask her when she gets back, “So, how was college?”. Usually she tries to answer us. A high pitched sing-song comes out. I’m feeling more optimistic about her development than I have in months.

I worry about Ella. A lot. Though she is making progress in her ability to stand and walk with assistance, there are some areas where I see very little progress and in others, regression. Her speech has deteriorated recently. About a year ago she started making consonant sounds and soon after formed the beginnings of some words ‘Buh’ for bottle etc. Those are virtually gone now. I have not heard a consonant out of her for quite a while. It is baffling. On the one hand it seems like her understanding is enhanced. She picks up on what we are saying and responds. On the other hand, her expressive ability has diminished significantly. Another area of regression is her playing ability. It seems to me to have deteriorated and to have turned less purposeful, less controlled and intentional. Most of her playing is a repetitive sorting of items, examining them in a fidgeting kind of way. It is painful for me to see.

Having Netta around accentuates Ella’s problems. Netta is like quicksilver. She picks things up in a second; nothing gets by without her examination or response. Once a lesson is learned it stays learned. With Ella it is never a linear progression.

Things get learned, they get unlearned. Progress gets made, then unmade. Why?