What a long strange trip it has been

We arrived back from England and Advance on Thursday – exhausted. Our trip had two key purposes. 1 – Go to Advance for more therapy for Ellie. 2- Attend Dave’s mother’s wedding in Dublin where I was also the photographer. (Obviously his mom and step dad are a bit nuts but the pics actually turned out well). Ellie, is normally a great traveler. On this trip she was her usual self - happy and excited to get Mama and Dada in close proximity for hours at a time. She is even able to catch some z’s on planes and in her stroller which reclines back. This is definitely something she inherited from her father. But for the first time, we flew to Ireland via Heathrow to save money and use up the last of my road warrior air miles on American Airlines. Usually we fly straight to Dublin. This leg to Heathrow made our trip 6 hours longer than it normally is and the high winds caused even more delays. By the time we were on the flight from England to Dublin we were all exhausted – especially Ellie. We arrived at Dave’s mom’s house, gave Ellie a meal and then Ellie and Dave lay down for a nap. I joined them about 30 minutes into it after a bit of organizing. As I lay down beside Ellie, she turned to me and tried to sit up. She was pale gray and her right arm was pumping, hand fisted and hitting her head. She was trying to get to me. She was having the worst seizure she has had since her time in the NICU.

After a couple of minutes of this, I got the emergency seizure kit (Diastat) and gave it to her. The kit says you are supposed to wait for 5 minutes but this was a big seizure for Ellie so I did not wait. For another 7 minutes she was seizing. Dave’s mom called the ambulance. Ellie finally stopped seizing after a total of 10 minutes. I had her on her side as the folks on the emergency medical line instructed. I was talking to her and crying at the same time. She was reaching out and grabbing my hand. And gently reaching for her Nanny’s necklace. It was as if to reassure us that she was going to be ok. The ambulance arrived very quickly and they gave her oxygen and rushed her and us to the hospital. While the ER team was a little disorganized and had trouble getting an IV in, once we were on the floor in the ward the doctor there was excellent. She got all the right tests ordered when the ER folks said they could not be done on New Years eve. Ellie’s aunt later told us that she heard that same doctor telling off the technicians to kick them into high gear to get things done.

Ellie and I spent New Year’s Eve in the hospital. Ellie was monitored and slept on and off. Dave’s brother and sister-in-law insisted on staying the night in the room with us. They had us in a closed off room with two beds and a cot. It was different and nice to have help when Ellie is in the hospital. We haven’t had that since we moved to the East coast. Usually we are there by ourselves the entire time and taking shifts to manage work.

The Irish doctors conferred with our Boston neuro team and they both agreed. The scans came out fine.

Seizures are scary things. When Ellie was first diagnosed with them in May her neurologist stressed to us the importance of putting her on medication for them. In May her seizures were way less severe and we were concerned that the meds would keep her in a zombie like state. We were under the impression that the brain was only effected adversely from a seizure if there was a lack of oxygen. Our neurologist disabused us of this notion stating that in a developing child short term memory is erased randomly during a seizure. So seizures effect and delay the child’s development. I had noticed that Ellie would “forget” some things I thought she knew at this time and I think that was from the seizures.

The reason the doctors surmised that Ellie had this seizure was that her med dose had just been lowered by our Boston doctors (because Ellie had been symptom free since May). We wanted her on the lowest dose possible because she is only 4 and her liver is being asked to process a lot of meds already due to her reflux. We tried a drop of her seizure med, Depakote, and the stuff burns the tongue. I worry what it does to her insides. This lower dose combined with the stress of being tired may have just been too much for her.

Also, for the record, all the decisions we make for Ellie are never black and white. Someone recently said to me that “clearly you have a lot of guilt” over choices we have had to make for Ellie. This is not quite right. We are always choosing between two evils and hoping we picked the lesser one. There are always shades of gray especially when dealing with the brain. So it’s not guilt, but the difficulty of having to live in the gray area and always hoping you did the right thing, which does not always bear out right away but over time. Don’t get me wrong, I know we have done very well by Ellie and worked very hard and used all of our god given gifts and energy to do so. For me, I can’t really go to the place where I might feel proud or comfortable with all of this because I worry that I will become less vigilant. Maybe that’s posttraumatic stress talking. But I do not want to ever relax my vigilance over my daughter and her needs. I will probably never think, ok I have done enough. No, that is not in the cards for me this lifetime. I will be working to help Ellie until I die and that is that and that is ok. It’s a good problem to have because I have become a better person in doing so.

The scariest thing during the seizure was wondering when it would stop and thinking Ellie might die. And then when it did stop wondering if it took some of Ellie with it. We would not know this for a couple of days because she had to readjust to her new med dose and rest. Now that we are back she has remembered all the games we played before the trip and her language has come on even more. She is starting to make word approximations and this is very exciting stuff.

Just the same, seizures suck. I felt really bad for Ellie and what it must have been like for her which I can’t even imagine never having had a seizure. And I did feel guilt about dragging her tiny self across the Atlantic. Though she has done this twice a year for 2 years and never had an issue I still feel bad that she had a hard time of it. We are moving forward on a more formalized schedule of testing her Depakote levels. The entire trip after that we let her rest a lot. Usually I wake her up in the morning each day a little earlier to help her adjust to the time change. I didn’t do that this time so we spent the entire trip being up with her from about midnight to 4am. Ellie had multiple naps during the day though we did not.

We made the decision to continue on to England for the therapy and Ellie was fine for the rest of the trip.

The therapy session at Advance went very well. The picture you see is Ellie in the Hyperbaric Oxygen chamber with Dave. The Hyperbaric O2 Therapy is used to give her diaphragm a work out to adjust to the new therapy regimen. We were given double the amount of exercises we had before which is going to require twice the commitment we had. We are on for it. It’s encouraging to look at Ellie’s recent photos from this session and see all the progress she has made. Her head control is so much better. She is more solid in general and can sit up straighter and is so much stronger. Her coloring too has noticeably improved where she used to be so pale. Her reflux has also improved greatly which is a wonderful thing.

Regarding nutrition. The turkey I mentioned trying was only making Ellie more acidic and reflux more as well. Linda has discovered whey protein that is not sweetened. We took some home with us and it’s excellent so far. I am trying it out myself as well. It is mixed with water and is very mild. You can find it at myprotein.co.uk. We are starting slowly and so far so good. Ellie usually shows adverse effects to foods either right away or over a few days so I will keep you posted. We are also going to add some live enzymes to her diet by juicing vegetables and grapes. Grapes are also very good for increasing motility. We tried Ellie on both before but she was too sick to handle them a year ago. So I am hoping she will be able to tolerate them now.

We are back and moving on from the trip and the Ashley mailstorm. To borrow a phrase from Jacqui and apply it to trying to discuss the whole thing somewhat rationally – you are damned if you do and damned if you don’t. I am tired too. Uncle!