Ella's Pages

We are feeling Ella is making a lot of progress in this past week. She has started eating solid food (if you can call mushy banana solid). Her head control seems to be improving. And today she managed to lift her head while on her stomach in a posture that looked a bit like getting ready for crawling. Besides, there is a tooth coming out on the bottom of her mouth and two on top. I am very fearful of counting her blessings, statistically that is exactly when we get beaten down with a bout of seizures. Lets hope they will let it go this time. Ella now has a new nanny, Yvette. They seem to be getting along well together. It is surprising Ella can be doing so well on such incredible amounts of medication. We are hoping that sometime soon we will be able to phase out at least one of the medications she is taking.

I imagine her sense of reality is something very blurry as a result of all these drugs.

Ella has been very sweet since we got back from the hospital. I’m relieved that she doesn’t have those twitches in her leg that she had before she was hospitalized. Although Dr. Duffy assured us they weren’t dangerous, I suffered seeing them. Meanwhile Ella is growing by leaps and bounds. She has tooth coming in on the bottom and two in front on the top as well. She’s even graduated to the next size of diapers. Also, we’ve started feeding her smashed bannas and apple puree. At first she kind of winces and then actually eats the stuff by sucking it accross her tongue. Ella has been cooing alot and sometimes I find her concentrating on her right hand. She’ll focus on it while moving her fingers around. That is a welcome sign even though she hasn’t really started holding anything yet. I see a big difference between her right and left sides. She doesn’t have the dexterity in her left hand and arm that I see in her right. But she does use both hands and arms to bat stuff around. She’s growing up. It is nice to enjoy these things and get a little respite from concentrating on health problems.

Ella had a seizure on Sunday afternoon. We were just getting ready to go to Yael’s house for a Hanukah party. I was dressing her on the changing table. It was very subtle and only lasted about a minute but the scary thing was that she apparently had difficulty with oxygen because I saw her turning blue around the mouth. She became very still (not stiff), her eyes rolled up, she had that far off gaze plus and was pale. I wasn’t sure about her being blue at first, so I held her up to the light near the window. By the time I could discern what was going on, the seizure passed. I wasn’t sure what we should do if anything and what to do about Hanukah plans. I called the Epilepsy doc on call and luckily got Dr. Duffy. He immediately advised me of a plan after asking some questions. He thought it might be an isolated occurrence related to her getting her immunizations last Friday. We went back to a regime of Tylenol every 4 hours. She has been okay since then with no more seizures. Yeah! Even though we are so disappointed with Children’s Hospital I’m beginning to feel the advantages of being near experts like Dr. Duffy. He has so much experience and a calming, caring manner.

Good news. (It’s about time…) The EEG results were very encouraging. Gone was the spiky continuous activity from the right hemisphere. Dr. Duffy was very pleased. We were ecstatic. We were instantly sent home, and this time it really happened instantly. The thing I don’t like is the massive amount of medication going into her. That can’t be doing good things. It does stop the seizures though.
Ella seems to be very pleased to be home. Making lots of noises and smiling a lot. So that’s the end of this round. We are hoping for a rest, a couple of months would be nice. We are meeting with Dr. Black the neurosurgeon from Children’s Hospital on Monday. Deep down we have the feeling that we are destined to have him involved in Ella’s care sooner rather than later.

Finally some sign of relief. Yesterday the seizures started diminishing, being there only a part of the time. Towards the evening I did not see any at all. This morning there have been no seizures that I could detect. But I am not allowing myself to become optimistic yet. We’ve been down that path. Ella was in amazingly good spirits yesterday and great fun to be with. It was a bit surreal and uncomfortable, because our neighbor in the hospital room is a Pakistani girl maybe 12 years old, she had had some sort of brain surgery, her recovery isn’t going smoothly. She is in excruciating pain (in her head) and they don’t know what to do about it. So at the same time we are cooing and playing with Ducky, she is screaming in pain, she can’t take it anymore. In some cases Ella responded to that with a big smile. I told her to cut it out. Today we are scheduled to have an EEG done and see if the external change we are seeing with the seizures is reflected in the electrical activity in the brain.
If all looks good. We might be going home today. It might sound weird but in some ways I like being in the hospital with Ella. For one, my priorities are set. I have one goal when I am there. Take care of her. Besides I get to spend some condensed time with her. Something I usually don’t get. And then there is the cafeteria food…
The Neurosurgeon Dr. Black dropped by last night. We have an appointment with him on Monday. He said any time we can buy by controlling the seizures and pushing surgery away a bit is a benefit.

Back in the hospital: I had a restful night at home relatively speaking. I got up at 5:45 a.m. to survey the status of recycling compliance in our neighborhood for a study assignment. I’m trying to keep up with my school work. It is quite a juggling act. The survey of the neighbor’s trash seemed to go quicker than two weeks ago when I did it — or maybe it seems much easier to stand out in the cold, pre-dawn dark, looking at people’s garbage and filling out survey forms, than enduring a restless night in the hospital while watching your little daughter suffer seizures….That is tonight’s assignment. It has been hard, but I feel that Ella is in the good hands of Dr. Duffy. One of the families in our support group that I went to last night, has been through the same thing. Their daughter spent the first 5 months of her life in hospital going through the seizure med routine.

Dr. Volpe kept saying the right combination and amount of meds would work. They did. I’m optimistic about them gaining control within the next few days. I came away from our meeting at Johns Hopkins with mixed feelings – both hopeful and pessimistic. I’m worried about what the whole unnamed syndrome (hemi-hypertrophy, HME and the nevi syndromes together) mean for the long term.

Just trying to live each day at a time and put anxiety aside. At this point there doesn’t seem to be any advantage to planning to do the surgery there. We have a meeting with Dr. Black, the senior neurosurgeon here on Monday.

And the seizures continue. The dose has been raised again today to no avail. Dr. Duffy was just here and the plan is to take another blood sample for levels tomorrow morning and then probably raise the dose again. Sounds familiar. If it doesn’t work, it will then be a different medication.
Dr. Duffy assured me that the seizures in themselves are not harmful (yet), and that there is still quite a margin in dosage to work with. They prefer to up it slowly rather than to knock her out with the maximum dose. This way they can be more accurate with the quantity that is actually needed. I am not using this technique. I am using my full dose of will power to stop the damn seizures and let her be in peace. My results are just like Dilantin. Very disappointing. It’s amazing that this little tiny baby who is now almost entirely composed of drugs (three anti seizure medications concurrently) twitching in her whole left side continuously can still make me laugh. Now that’s a sense of humor. I took Ella down to the cafeteria this evening in her stroller to get myself some dinner. Ella looked around very interested and amused.
I was so proud of her, I puffed up my right cheek to show everyone we were together.

No luck with the Dilantin (yet). After receiving two IV doses of the stuff, Ella’s seizures did not go away, or subside. Blood was sent to the lab to check levels and came back low. Another IV dose was given. Still no effect. We are going to wait till tomorrow morning to see if there is any change and then probably another blood sample will be sent to the lab (unless it starts working). The dosage might be adjusted, or the medication swapped out for a different one altogether. Dr. Duffy stresses that it is important to keep the seizures under control.
‘Brains are neural networks that learn, they can learn bad things too. They can learn to seize’ The fear is that Ella’s left hemisphere will learn the seizing trick from the right one. Michelle is staying with Ella tonight. I hope the baby neighbor will be quiet tonight so she will be able to sleep a bit. Ella was very sweet today, mostly alert and interested. Several times during the day, I wrapped her up in a blanket and walked around the ward with her, showing her interesting pictures of distorted faces on the walls.
No sign yet of when we can take her home.

Not good news. The EEG showed that Ella’s right hemisphere is seizing constantly. Dr. Duffy said this is the ‘next level’ towards uncontrollable seizures, that it is necessary to stop these as soon as possible and hopefully we can buy another month or two of quiet. Surgery is what is waiting down the line, but we want to let her grow a bit and reduce the risks involved. She was started on Dilantin last night with the hopes of it quickly controlling the seizures. It didn’t.

The doctors are due soon and I hope they will come up with something that will. Throughout all of this Ella is in good spirits. She is smiling a lot and doesn’t seem to mind the twitching in her left side. I don’t know how this doesn’t bother her. It looks like it should.
It sure bothers me.

Poor Michelle.

This wasn’t much of a fortieth birthday (4 of Nov.) present. She got to spend the night in the hospital with Ella, sharing the room with a screaming baby, whose mother is in some kind of shelter, and so, cannot be with the baby. Not much sleep was happening in that room. She rushed to her studies this morning (Michelle, not Ella) to give a presentation; if she manages to stay awake… Ella is very relaxed, in relatively good spirits. The mini-seizures are continuing, but she doesn’t seem to be aware of them.

We are waiting for the EEG and for the decision about her medication, which will follow.