Ella's Pages

I’m very happy to say that things have returned to ‘normal’ now in that Ella’s seizures are once again under control. Yeah! From our meeting with Dr. Duffy yesterday, it sounds like if all goes as planned without uncontrollable flare-ups and provided that Ella has a normal left brain hemisphere, surgery will be scheduled for when she is about a year old.

From what we are learning about brain plasticity (i.e., the ability to compensate), this gives us renewed hope. Ella has now returned to the smiley, alert baby she was before. She is absolutely precious when she lights up in a smile. She is struggling to hold up her heavy head and becoming more and more responsive to our voices, lights and some objects, like her musical teddy bear mobile hung over her bed.

Today we had our first meeting with Dr. Duffy of the Epilepsy department. He is going to be our primary contact from now on for Ella’s care. All contact with Dr. Duffy is extremely positive. He is of that rare breed of doctors that takes the time to explain things, treats you with great respect and gives you a genuine feeling of caring, and being extremely competent. The message was very clear. The hemispherectomy is inevitable. With her condition there really aren’t any other choices. This is both frightening and encouraging. The prognosis for kids following the operation is extremely optimistic. However it is a risky, delicate operation. The good part is that it feels like there is a plan now. Also according to Dr. Duffy, the chances of her ability to lead a ‘normal’ life after the operation are pretty good. Best case scenario is that the operation will be carried out at a planned date with adequate time for preparation and contemplation. Worst case scenario the operation will be carried out in emergency mode if Ella starts having intractable seizures.

We arrived home yesterday afternoon. What a relief! Ella is doing well although two worrisome effects of the last bout of seizures are these twitches and jerks that she has from time to time. Dr. Duffy said these are seizures but they would be impossible to control. I’m hoping they will dissappear over time as she gets used to the higher dose of pheno.

The other issue is the weakness in the left side of her body. When sleeping and laying down on something flat, she always twists to one side. This is apparently a result of the weakness. Hopefully, this too will go away in time. Other than that it is great to have her back with us…she’s cooing and asserting her personality at every opportunity as before.

We are going home today! Ella hasn’t had any seizures since the night before last and we find ourselves breathing again. (It’s Strange how standards change) We will have to be on the alert from now. Every fever, infection, fungus can lead to a new series of seizures. We have a follow-up appointment with Dr. Duffy of the Epilepsy Department.
I guess from now on that will be our primary contact for Ella’s care. The focus will probably be keeping her seizure free until the suitable time for surgery. That is a very frightening prospect. For now we are just happy she is home and back to her self. She is looking around, making little noises. The adventure continues.

Finally an improvement. Starting last night the seizures are gone (touch wood). The news was that the lab results showed Ella had both a urinary tract infection and an ear infection. The antibiotic probably started working and Ella stopped seizing. This was a huge relief. It was good to discover that there was a reason for the seizures. The IV turmoil is continuing. Last night Ella lost her IV and they were unable to find a suitable place to insert a new one. Her hands and legs look like a drug addict’s. I gave her the Phenobarbitol orally but there was no solution for the antibiotics. This morning they are trying to find a way to administer the same antibiotics in a different way. Maybe an injection to the muscle. Last night and this morning were a breakthrough in that I managed to get a few smiles from Ella and she is much more alert and into things, looking about optimistically and generally in a good mood. An IV will have to be put in though. (And I cringe at the thought of them attempting that).
It is necessary for the MRI that she is scheduled to have. It looks like our main contact will be Dr. Duffy from Epilepsy. It also seems like there is starting to be a long term plan. Based on her condition, the prognosis is for a constant battle with ever increasing seizures. (There are exceptions to that but they are rare, and till now we have not had too much going for us in the luck department). Things are pointing more and more towards a Hemispherectomy. An operation that removes half the brain, the abnormal half. The EEG results showed that most all the seizure activity is coming from the right side of the brain, making Ella a good candidate for a successful procedure.
The operation sounds terrifying; however the indications are that it actually improves Ella’s chances of developing ‘normally’. In any case the ideal age for that is between one and three. The immediate challenge is to control the seizures.

After three nights and four days in the hospital I’m pretty zonked but the upshot is that Ella seems to be feeling better. She is still having some seizures but they are less frequent and more subtle. In addition, after four days of not a single smile or interaction she is slowly returning to her self. She looks at us again, has smiled twice today (!) and she is always turned towards her big cheek side — not a desirable phenomena but at least her old self. She has been getting antibiotics for her ear infection that also treat her arm infection which resulted from the IV gone bad. The last few days have been a slew of doctors, nurses and medical equipment, blinking lights and ringing bells.

I’ve resigned myself to spending alot of time here at Children’s. I’ve found the library where I get some studying in and also the Family Center with computers, internet access and magazines. Life in the hospital is not all bad and I’d much rather have her under observation during seizures than at home. Hospital food could be better but they have pretty good chicken fajitas on the menu. Ella had an ultrasound today. Etan took her to radiology for that. It took about 3 hours. I took her down this morning for the MRI (second time). They wanted to sedate her and as they were getting her ready, after taking off all her sensors and monitor conections, they looked into her mouth and ruled the test out without full anesthesia because of the irregular shape of her mouth and the danger of an obstruction if there are any breathing problems while she is sedated. By the time they decided this Ella was very hungry because I couldn’t nurse her for four hours leading us to this and because they had handled, poked and prodded her. She had a seizure just then. But she has had a much better day than yesterday and that is encouraging. She is nursing strongly and sleeping quietly from time to time.

Ella’s seizures continue. They have become a bit more subtle and seem to affect mostly her left side. But they aren’t going away. She was seen today by Dr. Volpe as well as by Dr. Duffy of the epilepsy department. They ordered an EEG and an MRI to be done. The EEG was done easily enough and she slept and woke up exactly when she needed to (and had a seizure right afterwards) The MRI was a different story. The IV in her arm was in bad shape, there was an infection around it and it was leaking, so they removed it. The MRI people then tried with no success to insert a new IV. For two hours they pierced her in four places and didn’t locate a vain. I finally told them to stop and took her back to the department. Watching them try and try again was particularly painful. The IV unit was called in and they inserted a new IV. This is essential since Ella is receiving her medication and fluids through it. She is scheduled for an MRI tomorrow. There is no talk of going home at this point. The seizures are still occurring. We miss Ella in her normal, un-sedated, smiley form.

Ella is spending another night in the hospital. Michelle is with her. Her seizures have not gone away despite the increase in medication (today it was increased again). The suspicion is that she has some sort of ear or urinary tract infection and that is known to lower an infants threshold for seizures. She was seen by several doctors, neurologists and several from the Epilepsy department. Tomorrow her case is going to be reviewed by Dr. Volpe, the head of the neurology department. If the antibiotics she is given does not help eliminate the seizures I expect a new medication will be tried. We are just hoping for something to make those horrible seizures go away already.

I am just back from the hospital. Michelle and Ella are sleeping there tonight. Ella was admitted earlier today. Ella’s seizures grew closer together even though the Phenobarbitol dosage was increased. She had 5 seizures yesterday and 6 today. Calling in during the fourth, the neurologist said we should bring her in. In the emergency room she had another two the last one lasting around four and a half minutes. They leave her exhausted and, with this recent series, a new phenomenon is added. Right after the seizure, her left side acts as if it is numb. Only slowly does normal movement return to the left side. They loaded her with additional Phenobarbitol since it seems like the previous increase didn’t have much effect. She is staying in the hospital so they can observe if there are no more seizures and if there are, figure out what medication she should be switched to.

The encouraging noises they were making claimed that most people with seizures end up with a solution, a medication that virtually removes them from their lives. We have not yet (it turns out) found that medication for Ella. They warn you that during seizures there is a danger of the child turning blue for lack of air if his breathing is not regular. They don’t tell you that during her seizures you run that same risk yourself.

To our horror, last night Ella started having seizures again. It could be that the eye phenomenon was a precursor to the seizures or just very mild ones. Since she has been growing a lot lately, it could be that her medication dosage is simply not adequate any more (I hope it is a simple explanation like that). We called the hospital and they recommended we raise the medication level.

This morning she had two more seizures. They leave her exhausted and us desperate. After the seizure her left side behaves as if it is half paralyzed, this goes away after a while. We are going to the hospital, Ella will have her blood test to see what the level of medication is and later we are meeting with the plastic surgeon.

Shana Tova.