Sara Update 49

April 3, 2010

Human Yo-yo
Ok, where do I start…We were to train a new nurse last Sunday night. So after a full 8 hour morning shift with a very goopy Sara from 7:00 am to 3:00 pm, then teaching voice lessons from 3:00 to 9:00 pm, and cooking dinner, I went to bed at 11:00 to sleep until 3:00 am when I planned to relieve Hugh. He stayed up to break in the new recruit. Our regular nurse took some new employment to make-up for all the time Sara’s been in the hospital lately. They call her (Sara) a frequent flyer these days. She’s been in at least 12 times since Thanksgiving. She’s been having a major seizure at least once a week, an ambulance ride almost as often, and a hospital visit every other week. Add to that the new voice studio I’ve begun in New York and you can imagine why I feel like a human yo-yo.

What’s going on you say? How about epilepsy with surprise seizures and lungs that need to be breathing deeper so they are not so sensitive to respiratory colds and illnesses. I’m praying we get the Quadriciser…the exercise will strengthen her and get her breathing much deeper. She’s so large now…..44 inches tall and almost 50 pounds. The nurses just aren’t able to do as much with her as they used to. Hugh and I are working every moment we can find and playing catch up and switching off for all these hospital stays…it’s just plain nuts…so she isn’t getting as much exercise from us either. But I have diverged…

A bad night
So I got up at 3am and Hugh was upset and the new nurse was whacking away at Sara’s back (giving her chest percussion for breaking up mucous). She’d been up till 2am and he’d had a heck of a time keeping her oxygen saturations up where they were supposed to be. She still must have a pulse oximeter attached to her big toe at all times which alerts us with beeps as to how much oxygen is in her blood. At 4:00 am the beeper was going off constantly. I didn’t like it. Neither one of us liked it…he’d already packed us for the hospital trip…just in case. I was wearing my PJ’s also… just in case I would end up in an ambulance with no chance to change. I’d gone once in my night gown and I said, “never again”. I called the Pulmonary Fellow “on call” at the hospital. We agreed that we should come in and get her checked out in the morning. She’d needed O2 for 3 nights running and had already had another dose of prednisolone. I was advised to give her more of the steroid which I did and then sent my husband off to bed.

The nurse and I gave her PT for the next 3 hours almost without stopping. We were determined that she not get into any trouble. However, suddenly at 7 am her heart rate dropped; first to 70 then to 60 then to 49, and it was staying down and low….back and forth between 60 and 70. It wasn’t coming up and we whacked her to try to get her to breath and get that ticker tick-tocking. I was scared…this was a new something I’d never seen her do before and I couldn’t imagine why it was happening. I called the doctor again and she said get her to the ER now. We woke up Hugh. I called the ambulance. They came in less than 5 minutes. Good thing I didn’t have a night gown on. Good thing I always keep my suitcase packed too.

Back at the hospitals
Dr. S, the ER attending who knows us at the local hospital now recognized us as we came in. He put in the I.V. himself and got her cultures. She woke up and the heart rate stabilized. We were still stuck with the why of it. Was it her meds, was it her last molar coming in, or was it interaction of old and new meds? I racked my brains…what was left of them as I was pretty tired by now.

We were in the ER from 7:00 am to 4:00 pm. Once we got her stabilized around 10 am, I sent Hugh home to get some real sleep. He had a concert to play that night. …After a 2nd ambulance ride, which they call an inter-hospital transfer, they moved her straight to the Pulmonology floor… 5 South….77th admission…nothing we are proud of, believe me. One of the techies said to us, “Hey you guys back again? You’re building that new complex next door, right?” Well let’s see. We’re shelling out $3400 a month for the darn health insurance and Blue Cross must be shelling out several hundred thousand a year…so yah, I mean … “Right.”

The social worker
The last time we were in the hospital, 2 weeks ago, the social worker came by. She just wanted to talk…wanted me to talk. She listened for about an hour while I explained our very precarious position. She kept shaking her head and exclaiming. The problem is the whole thing is so huge and difficult and painful that it’s too big to burden my friends with and professionals just throw their hands up in the air because they don’t know where to begin. So I’ve stopped talking about it or writing about it and I try to go around like nothing is happening, like I’m living in everybody else’s world, when really my reality is more like living on another planet.

She continued to shake her head as I continued to expound without trying to sound like I was complaining. I mean truly what right have I got to complain? I’m not in a monsoon in a tent in Haiti. I have a roof over my head and at least for two more months we have insurance….it’s the future we are so worried about…like how to find insurance for the three of us that we can afford…like how to sell our house in this market, how to find the time to prepare the house, how to get a loan to buy a flat rancher that is handicap accessible, how to pay for the move or the down payment? But the real question as Hugh pointed out last night is: how do we continue forward at all? How do we make a sustainable living when Sara Ann still requires so much time from us? How do we continue her desperately needed therapies? How do we fund them and how can we continue to find enough of our time for her. Not to mention where do we carve out enough time to make a living? And as far as our own career hopes? I was blue about it all last year…now Hugh is really feeling it. When you’ve put over half your life into developing expert skills and then are not able to use them, I mean I’ve just never believed that real talent should go wasted but…well let’s just don’t even go there. At the end of my diatribe, I said, “I’m sorry to go on like this. You must hear stories like this all the time.” “No,” she said, “I’ve never heard anything like this before in all the years I’ve worked here. You really are in an unusually tough position. I don’t know how to help you but I always have an ear to give.”

This week past
So back to this visit, this 77th visit….well Sara Ann has a nasty head cold and it’s possible that her seizure meds were reacting to the steroids. The pulmonologists have seen slowing heart rates in 50% of the kids with respiratory issues like Sara’s before. They say it’s ok, just to ignore it. But I’m sorry, I can’t ignore a rate that drops to 49 and goes on for half an hour! We will get to the bottom of this. A repeat of this situation is the last thing we want.

She’s been getting the miraculous IPV all week which keeps her lungs clear. We’ve tried to get one of these wonderful machines for home use…since that is the single primary treatment that’s different when she comes to the hospital. But our heath insurance company has turned it down flat. They’d rather pay $10,000 a week every other week for her stays at the hospital than shell out 15,000 bucks once for the machine…go figure that!!!!

The days here are endless at the hospital. Usually Hugh spells me a bit while I go teach. But this week is Holy Week and he’s had all these extra services to play so here I am on day 6…me, the blithering idiot!! Sara gets so bored with me she stops trying to talk to me. And I eat…I can’t help myself…yah, I know I shouldn’t but could you resist an ice cream cone if you lived here 24/7?

Visit Number 2
The social service worker was back on Thursday to pay a visit. “How are you all doing?” She queried. “Better, I guess,” I said. “Trying to avoid the temptations of the cafeteria.” I’d been really seriously trying to give up sugar once and for all. She knew my whole story…what was I supposed to say? “How’s Sara?” she continued. I looked down at Sara Ann as I stood next to her with suction catheter in hand. Her mouth suddenly started a hard rhythmical twitch. “Well right now I think she’s starting a seizure.” “Your child is so unusual” she added. “Yah,” I thought as I grabbed the Diastat out of the diaper bag. “Can you find me one of the docs?” And she did. An hour later, Sara was in her drug induced sleep and I walked downstairs to relieve my tension headache. I was caught again by the social service worker with my double scoop ice cream cone in hand. She laughed, “She seizes. I eat.” I said matter-of-factly, like it was 1 plus 1 equals 2. “At least it’s not a cigarette,” she shot back on her way outside.

I returned to the room to learn from our nursing agency that the new nurse decided that the job was too much for her. I guess she must have shared her story with the other two nurses scheduled to come in and train, because they also suddenly backed out of the case. They all said they prefer kids with trachs…sorry ladies, but that really isn’t your decision to make is it? I’m sure we can find someone else who can appreciate what we are doing. It will be nice to get the seizures stabilized and the teething over with so we can get back to swallowing training!

New exciting finds!!
As usual I did a lot of research on Sara’s room computer while at the hospital. Now you get to hear some hopeful stuff…yeah!!! First of all, there are DOGS out there…I mean special needs companion dogs that will tell you when a seizure is coming. They also pick up dropped things like pencils and return them, open doors, and can even take off a child’s sweater!!! Wow! They also give lots of love and loads of licks and it’s actually recommended that they sleep in bed with the child and get this…for a kid like Sara you can find one for FREE!!! OMG I nearly fell off my desk chair at 3 am when I read this. If you know someone in need of a companion dog, here is the link:___________

Next big plus I found…there is a special diet called the ketogenic diet that seizure prone kids do really well on. I found a bunch of info on it at the John Hopkins site yesterday and they say that 90% of their kids improve by 50 to 100 %. That’s huge…so, so huge. That’s something I can do as a mother, and yeah, I’m all for that. Some kids can even come off of their seizure meds. Oh, if we could get these seizures in control it would totally change our lives. We could get off the hospital merry go round. Spoke to the neurologist about it yesterday and she’s all for it….just gotta get Dad on board. He’s concerned because, yes, the diet can be dangerous. You have to watch everything really closely but the gains are tremendous and they say that the kids on liquid diets do even better! YO…let’s go!

Cutie Pie
Ok, so now here’s the cute adorable Sara stuff you’ve been waiting to hear….she now just goes wild over sudsy bubbles in the tub. Her nurse calls them “magic bubbles”…you can hear her squealing about them around 8 every night. If I have a soprano warming up downstairs at the same time, she will also chime in with some high pitched singing of her own. She has been much more verbal lately, I’m happy to say. She likes to frequently interject “yah” only at appropriate places of conversation. Occasionally we hear other words, like “I want” various colors or numbers, and now she’s working on “Eh oo” for “thank you”.

Here’s another cute little ditty. One morning last week her teacher while teaching a lesson on teeth brushing said. “Sara, what color is your tooth brush”. I piped up from the kitchen…”I think it’s white.” (We’ve only used it maybe twice, as it over stimulates her gums. We clean her teeth with chlorhexidine and a little sponge on a stick usually.) The teacher held up two colors. “Is it red or green?”, she taped the sound of her voice into Sara’s big push buttons so Sara could make the choice with her fist. Sara didn’t push anything. But she said softly “blue.” The teacher changed the colors. “Hmmm, is it yellow or orange?” No movement again on the part of Sara Ann but she did say a little louder again, “Blue”. Still her teacher didn’t realize she was talking to her. But her nurse caught it.” I think she’s saying blue,” chimed in her nurse. I ran upstairs…sure enough her toothbrush was white with lots of blue trim! This kid knew what she was talking about.

We just completed Sara Ann’s IEP meeting with the school system about our goals for her the next year. They are so impressed with her improved communicating that they are buying her a laptop of her own and they are going to train the teachers in the alternative communication methods. Right now they are working with her on “Stop” and “Go” and having those commands turn her music boom box on or off. This is opening up a whole new world to her, allowing her to control elements of her own environment and give her a little independence. Eventually, we’d like to have some switches near her bed that will allow her to turn her lights and music on and off.

In her school work, Sara recognizes and is delighted by words that rhyme now and she is also really enjoying counting and pattern recognition. A teacher from the Commission for the Blind has observed her recently and is going to be working with her teachers on ways to enhance her ability to focus by using a light board or putting her school work on a large black cloth to make the contrast stronger so she can see it. We’d like to get her back to Connecticut to have her eyes assessed by her eye specialist again but we have to raise the funds.

The Coming of Pascha…Easter

Today is Holy Saturday. I called the church office to check on the time for the liturgy. There was such great expectation in the sound of the priest’s voice as he announced the service times on the message machine. I felt a sense of excitement course through me as I imagined the lighting of the great Paschal fire. Pascha…there is nothing else like an Orthodox Easter. I am not so prepared this year as I’d like to be. Church is almost foreign. I could not even attend at Christmas. However, this Easter Hugh will play the organ Sunday morning at his church and our service is at midnight. So, Hugh is going to practice early today so I can go. He has no idea how thankful I am. My austere frequent stays in the hospital will have to be all I can offer for Lent this year. I utterly failed with giving up chocolate and sugar. Sara was up till 2 am or later every night this week, teething with her last big six year old molar. No on will be happier than me to see them done with. The only good thing about it was yesterday morning, while she slept in, it allowed me to read the Good Friday scriptures.

It’s interesting how when you know a story so well you still see something new in it each year. This year I was aware of Jesus’s amazing humility amidst his complete humiliation. I guess I felt like I could relate. When you are in a situation like we are, it is certainly very humbling. You are just there and people have all kinds of judgments about your circumstances. But there you are in the middle of it and it’s not going away and you just have to get through it however you can. When you are looking at mountains and you know you have to cross them, all you can do is keep putting one foot in front of the other and keep looking up.

I’ve also been reading this amazing interview of a Genesis scholar, Alice C. Linsley. She says everything you could ever want to know is right there in Genesis. To quote from the article “Stepping into the Stream” from the periodical The Road to Emmaus:

Alice: “God says ‘to the woman…your offspring shall crush the head of the serpent’.”

The Road to Emmaus: “Christ is already there.”

Alice : “Yes, He’s already there and this is the promise that is going to be fulfilled through the Theotokos ( Mother of God in Greek)….So, the first promise of salvation is also in the same place where the first sin against the order of creation takes place. The whole rest of the book of Genesis is just working it out.”

Isn’t it comforting to know that even in our original sin we have never been fully abandoned by God? There really is a plan of salvation…right form the very beginning…I’m just amazed by this. I know that Hugh would say the Jews have known this all along.

If you are equally intrigued by this thinker her blog is htto://

We wish you all a belated Blessed Passover, a Happy Easter and a Glorious Pascha.

Melissa, Hugh and Sara Ann

P.S. Oh, I almost forgot…. Thank you for the big turnout for our last fundraiser at the Westmont Family Restaurant in February. We are having another fun fundraiser at The Pop Shop, a favorite 50’s milkshake and burger hangout in Collingswood, on Tuesday, April 13th. A poster is attached. We hope you will join us and bring your friends! See you soon!!

Addendum: In the evening, after finishing this update, Sara Ann and I played little Rabbit Fu Fu. We made a bunny and 5 little mice out of play doh. I had her roll out every single one of them and then flatten the ears of all the mice, which she got a kick out of. Only when I had Rabbit Fu Fu start squashing the mice she was upset. She really has such a tender little heart. She didn’t want him to hurt the mice. So we put a band aide on the one that got it the worst. Maybe she is going to grow up to be a nurse.

She fell asleep and woke up with her lip all scrunched up on one side. She couldn’t move it and she started to laugh and then she was in a seizure…again…this is so hard. I called for a doctor. We are supposed to give her the diastat within five minutes but their usual protocol is the opposite, to wait 5 minutes and then give it. We’ve discovered that with Sara Ann she has a much better chance of coming out of the seizure if we give it right away, otherwise she may be in it for an hour. We were, waiting, waiting for the nurse to get the med. Who knows why it took so long…it was at least 4 minutes maybe 5. I just said, “I have it in my bag, I’m getting it out, and I’m giving it.” The young resident stood there dumbfounded and said, “But, you’re not a doctor. You’re not supposed to do that.” I answered while grabbing the tube out of the pack, “I’m her mother and that’s good enough. She needs it, this is part of her protocol and I’m giving it.” I figured I would deal with the fallout later. She did come out of it within 15 minutes. Good going Mom if I do say so myself.

A half hour later Hugh arrived and I was on my way to church. Maria, our choir mistress had called earlier to make sure I knew when the service was. “I’m invited to sing for the King”. I thought to myself. “It is such an honor.” I haven’t always felt like this. I used to sometimes think church singing was a real chore. Something in me has changed and I am glad of it. I guess I’m grateful, truly grateful to get a chance to sing at all and that it’s for the King is the best of all. I stopped off at the house to change into a dress and pick up Sara Ann’s Easter dress and her basket. I still don’t know if we are going home tomorrow or not…she’s not quite at baseline yet, so I guess we’ll have the bunny fun at the hospital.

The service was everything I wanted it to be, just lovely. You could feel the anticipation in the heavily crowded room. The priest held the huge lit candle high and sang out loud, leading the ancient “Christos Anesti” chant. The flame was passed to each of our candles and we all sang the chant together.

Someone close to us said to me the other day, “We will lift you up in prayer.” I could feel it. I was being lifted up. We are all being lifted up. It’s so glorious. Christos Anesti!! Christ is risen!!

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