reflections

Today is my 37th birthday. I spent the day running errands alone with time to reflect on the past year. I was overjoyed all day to receive birthday wishes on social media.I went into work to buy stuff for my birthday dinner. Everyone greeted me with even more birthday wishes. This morning I brought my older dog to the vet to treat an ear infection. An uneventful day is always a bonus. I am never quite "at ease" but as an introvert I always feel clearer minded after some solitude.

When I got home I got on Facebook and found a link to a very thought-provoking podcast about "PTSD in mothers(and fathers)of children who have a serious or life-threatening illness." It got me thinking about how I have felt off and on since Cady was born.

I can feel fine and then suddenly hear a noise or something that triggers a panic attack. I wake up from nightmares about both kids that set me off. I won't get into those now. I always wanted to be a horror fantasy writer, but I never imagined that this would be stranger than fiction.

In one of Cady's drug-induced moments in the hospital, I had placed her rigid body on the toilet. She kept leaning over and trying to swipe the blue-and-white tiles like it was part of a game on my phone. Later, I was taking a shower at the hospital and had a moment where I started to wobble and I felt like I was in a big, numb, white bubble. I looked at the tiles and they started to shift. I had to close my eyes to steady myself. Those tiles have always remind me of hospitals.

Everyone is going through something right now that you know nothing about.

"Life would be funny if it weren't so tragic."--Stephen Hawking

I am surrounded by some of the strongest people I have ever known. I know that no matter how messed up life gets that all anyone can do is keep going. Sometimes it's the biggest challenge life has to offer.

confusion

The last several days have felt surreal. The kids are energetic and positive. Cady's back to school and doing well. I honestly don't know how to feel. Along with friends and family and the whole community pooling together and rooting for us.  We've got several local groups hosting benefits. People have gone above and beyond with their donations on the gofundme page. I am in awe of the love and support that has come our way in the past few weeks. It's overwhelming, really. Thank you to everyone for listening and making us feel so loved. It means the world to us.

I suppose I should be happy that things are going so well. The truth is; I'm afraid. It never leaves my mind how dire the situation is. I have nightmares about it. I have panic attacks. Now we have all these other things to deal with through the school like 504 plans and IEP's. We had her evaluated earlier in the year so see if she qualified to receive physical or occupational therapy. She didn't qualify then, but she's being reevaluated now. 

If we're denied again, we will obviously seek those services outside of the school system. I need to prepare some kind of document for the school in the event of an emergency so they have her information on hand. We've discussed PTO training so I can be of some help in the classroom. I don't know what I can help with, but I'm more than happy to.

The school has been so helpful and understanding. All the staff is just wonderful. They have taken her into their hearts along with the rest of the family. From her first grade teacher, to the school nurse, to the bus driver. Everyone.

My husband's work and my own have been incredibly understanding as well. He went back to work yesterday, but I took this week off to monitor Cady and be here if anything should occur at school. We live minutes away so I can be there quickly. She has a checkup on Thursday and I need the pediatrician to fax some stuff to the school. 

That's all I have for today. 

From Patrick

So, I've finally had a chance to settle down and reflect on the past two weeks and here's what I've come to realize...

(1) I have restored faith in humanity. The outpouring of support from friends, family and complete and utter strangers has been very overwhelming. I can't even begin to express the gratitude we feel. To those that have brought us food or supplied gift cards to nearby restaurants and coffee houses, we thank you from the bottom of our hearts. There are too many to list, but know that we know who you are and our hearts are yours.

(2) A village is needed to raise a child. To our community of Lisbon and all the wonderful people that have reached out to offer a hand, thank you. We are truly at a loss for words. The benefits and banquets in the works by multiple establishments is beyond belief. I keep slapping myself wondering if this is all a dream. Nope. These are real, compassionate people that care for the wellbeing of a child in their town. Wow.

(3) Family > everything. This goes out to my older brother Paul Kelleherfor his daily talks on the phone, to my brother in law Dan Bowie and Heather Hesseltine Gamage for being there every step of the way, to my brother in law Jay Bowie for caring for our dogs and always showing up when we need him the most, to my father and mother in law Paul and Linda Bowie for taking care of Addy without question or hesitation, to my father and Debra McKeen Kelleher for always bringing a smile to our daughters faces, to Julia Durgee and Dan Carmody for being a great escape when I was down and out, to Diane Dennison for being the best extension of my childhood I could ever ask for, to Justine Fucci and Frank Fucci and Amy E Biggs for their compassion and daily support, and to Ed Blackman for being an amazing neighbor and life long friend. My eyes are wide open.

(4) Good is alive and well in this world. I hesitated to launch a gofundme page. I did. It tore me to think I needed to ask for help. I've always been the one to reach out -- supported myself and lent a hand when needed. Worked since I was 15 to support not just me but my single mother. Need to pay your car payment? Sure, just pay me back when you can. Short on cash to buy your family food this week? Just take $100 and I don't want it back. But I had to throw aside my pride and do what I could to help my child. I am absolutely floored with the generosity of family, friends, co-workers and strangers who believe in this little girl. I can't begin to explain what you have enabled us to do for Cady with your giving. In the days ahead, I will detail our steps that will hopefully lead to progress towards better treatment of her disorder. Know this...whatever we do with your money, know it will be met with the utmost respect for where it came from.

(5) I've been changed for ever. Have you ever come to a point in your life when certain events are either so traumatic or euphoric that they forever change your soul? The way you carry yourself. What you deem important. What you motivate yourself by every morning. Your outlook on life. I'm sure you have. Well, I'm 100% positive that has happened to me. I feel more human than ever. Mortal. Part of something greater than myself. To find a sliver lining in something so devastating is a challenge, but over the past few days since we've been home I've allowed those feelings to emerge and I'm better for it. 

Thank you for listening.

Daddy's accounts of our recent hospital stay...

March 9th, 2018:

Quick update on cady as i know a lot of folks are asking, which means a ton to us. 

Unfortunately, after three days she is worse than when she came in. She is on her 11th different drug to help her relieve pain and release her very extreme and constant muscle spasm, myokomia and ataxia. She is responsive but her pulse remains tachecardic due to the spasms. Her bladder is spasming which is causing some concern with her CK levels over 4000 -- normal is 500. Runners can spike with the flu at 200,000 so it really is about age and conditioning. We continue to take urine samples to ensure no kidney damage. Her white cells are elevated meaning likelihood that an undetected virus is the trigger, but no treatment for that except fluids and rest. Her ankles are turned in, legs stiff as a board, hands are locked up with her right hand clinched over her thumb and her left bent fully downward perpendicular to her wrist. Try doing that yourself as hard as you can and hold for 5 minutes. Now imagine that for 72 hours. Poor thing.

We continue to wait and be hopeful. I think breaking the virus will cure a lot and get her home, but shows the potential dangers of getting strep throat (which her sister is recovering from), or the flu or chicken pox or lyme disease.

We have a call out to Edward Cooper at Baylor, the foremost researcher of KCNQ2 and expect a direct call in the coming days. We hope.

March 10th, 2018:

She is finally getting past her acute episodes with much needed release of her myokomia and rigidity. Her muscles are like jelly and will need many days or weeks of rehabilitation to get back to normal, if she can get back to normal. Her hands and feet are swollen from the extreme physical impacts of her prolonged 72 hour spasms. She cant walk nor use her hands but i suspect that will change in the days ahead.

We continue to treat her with valium for pain and rigidity and are working with some field experts to balance her meds. She needs to eat, but having a hard time doing so. Since september, she has lost 20 percent of her body weight and now at 7, weighs what she did when she was 4. We undoubtably are concerned about this and are working through options to reverse this trend, but the reality remains that her spasms likely exert so much energy that she couldn't possibly eat enough to counter the calorie loss.

We dont know when we will go home. Addy is noticeably shaken and misses her family, cady most of all. And we miss her terribly. I cant wait for us to be together again -- laughing, playing and just being us.

We know there will be a next time. Our hearts ache knowing this. Cadys pain, addys pain, our pain, our extended family's pain. We will not cease in scraping the ends of this earth to find answers and better treatments. No child should ever be put through what cady just went through.

Good night all. My lack of sleep is catching of to me.

March 12th, 2018:

Today was a good day. Cady woke up feeling rather spry and in good spirits. She still wasn't that hungry but I convinced her to eat some fruit loops with milk. The cocktail of medicines have done a number on her taste buds making most foods pretty tasteless and unappetizing -- but she did what anyone 6 year old should do and listened to her father.

Most impressive was the progression throughout the day of not being able to stand to walking without assistance about 20 feet. Gingerly moving along with wobbly knees, but the leaps she is making encourages both Erin and I that we will be home soon.

We did have a concerning night prior due to her low blood pressure -- dystolic (what comes out of your heart and to your body) was around 42. This hypotension can be rather dangerous for the heart so the doctors were monitoring closely. Thankfully, through improvements in stamina and appetite, she is back to normal. One more night of steady pressure and we've checked another concern off the list.

Cady has been in and out of rather distressing emotional displays, but we try to support her by saying those are real feelings and she has every right to express them. To us, to visitors and to doctors. She broke down earlier for about 30 minutes just repeating "I just want to go home" in a sobbing voice. I think that's justified. We do too.

On a more upbeat note, I found the chance to run home and see the dogs, see Addy at school, talk with school staff and have a quick beer with some friends before trekking back to the hospital. Addy was noticeably sad, but she is such a trooper that understands deeply the severity of Cady's condition and the need for her parents to be at the hospital to support her. We try to ensure that Addy knows this isn't by choice and we want nothing more than to bring our family back together.

I picked up some very thoughtful and rather cute / witty cards that Cady's classmates made. When I brought them back to the room, she read each one with a smile and handed them to Erin who hung them on the wall. Such a sweet group of kids who really care for one another. To boot, both the school nurse (Kym) and Cady's teacher (Beth) came to the hospital this afternoon to see Cady, toting a build-a-bear (named Cassie) that they made minutes before at the mall. A wonderful gesture for sure. I cannot speak more highly of those two. They give me hope for the future of education in Lisbon. I think we are starting to change our tune about wanting to move.

So here we sit, another night in the hospital, waiting for further improvement. The Nor'easter could stymie our chances of going home tomorrow, but if I have my way, we'll make the journey. The road is long with this one, many decisions to make, along with the certainty that Cady will we back. The lingering uncertainty is just how bad it will be the next time? This one was bad, real bad. She's lucky to be recovering.

Thank you to all our friends, family, colleagues, and even distant connections that have reached out to show their support for Cady in a variety of ways. You never really get a sense of the network you carry until you go through something that requires you to lean on it. We appreciate all you have done from the bottom of our hearts.

Good night.

March 13th, 2018:

After a good day yesterday, we are not having a good day today. Cady woke up in high spirits, but she has since relapsed into a full on acute episode of rigidity and dystonia. She is in massive pain and hard to watch. 

Here we go again.

home is good

We got home on Wednesday afternoon. We are all in shock at the severity of the latest episode. It shook us to the core. There was one day when everything seemed hunky-dunky and we thought we were on our way home. She had eaten and even walked that day. The next morning she woke up and was in pain and locked up again. 

She's come out of it, and we are home and all together. We hadn't seen Addy in a whole week and being apart hurt us all. 

The rigidity has taken it's toll on her body. Most noticeably, her hands aren't as nimble as they usually are. She had a very immature grasp for a few days, and still can't feel the tips of her pointer fingers at all. We aren't sure if this is just temporary or if she has experienced some muscle death in that area. While still in the hospital, she had some smooth muscle issues. Her bladder seemed to be affected as she felt the urge to urinate at an alarming frequency. This scared  us, because it could have been affecting her diaphragm. They monitored her heart rate for two days due to tachycardia. Scary stuff. 

Since we have been home, there has been an outpouring of support from friends and family. Patrick started a gofundme page and immediately people started offering their donations. My brothers have paid to fill our oil tank even though we told them not to, but since when do they listen?

My faith in humanity has been restored. It feels very odd to both of us, who don't often reach out for help. It is alarming and heart-warming to know that so many people are thinking of our family. Thank you all so much for everything.

still waiting...

We spoke with the docs. She is being taken off the Acetazolemide and they are instead pursuing the Trihexyphenidyl. Her limbs have released and her levels are closer to baseline than they have been since Wednesday night. We think she has been on 12 different meds over the past few days. We have been concerned with the elevated levels affecting her muscles and organs. She is doing well, but we're definitely not out of the woods yet. 

Her sister is feeling much better. She is no longer contagious and her fever has gone. We have arranged for her to visit later this afternoon. They might both feel a little better after seeing each other for a bit. The best medicine might be some sister time. 

My niece and my brother's girlfriend are cleaning our house from top to bottom while we are away.  I am always amazed at how compassionate people can be and it boosts my faith in humanity. Those who are truly there for you in your time of need are so important.  

Do us a small favor. Mean every word you say, or don't say it. Do what you say you will do. Do not perpetuate false hopes. If you have no intention of helping, do not offer your assistance. If you want to know, ask. I am an open book right now.

I open my mouth and positivity comes out, but inside my head I am every emotion in existence. I am triggered by every beeping monitor, down to the blue-and-white tiles in this stupid room. My child is lying here in need and all I can do is sit here and listen to the sound of my heart breaking for all eternity.

I can't wait until this fucking nightmare is over and we can all go home. 
(Written on 3-10-2018)

It took me until now to decide whether or not to post the section above. I figure, what the hell, it's raw emotion and if it's too much for someone out there to read then maybe they shouldn't read it. The weekend was a time for resting and visits from a few friends and family. She is doing a lot better now, she is moving and her sense of humor is back. She hasn't eaten much over the past week so she is sore and tired. 

I am writing this while we are waiting for rounds. She is incredibly unsteady and at this time is unable to walk without assistance. She wants to walk to the toy room, and I keep telling her she needs to eat before she goes anywhere. So she ate a bowl of Fruit Loops with milk. The most shes eaten since Wednesday is a couple of lousy fruit cups and about eight pickles.  Progress is slow, but it's still a baby step forward. The hospital has Ipads, so she is playing something silly while she gets movement back into her hands. She couldn't make a fist or complete a motor dexterity test as recently as yesterday (ie. touch thumb to each finger).  Little victories.

Addy is at school today. I can't imagine how she is feeling. During her visits this weekend, she seemed energetic and cheerful. In contrast with Cady's aloof, borderline hostile mood, it was a welcome distraction. Cady misses her sister, but doesn't want to show her how frightened she is. 

We are all terrified. This could potentially become fatal one of these days. Sure, we'll make it out of this one, but what about the next one? Or the one after that? The thing that I wish people would understand is the simple truth that she could DIE. There is no way of knowing when, or even how, but it could very well happen. Let that sink in. Adjust your fucking priorities and let that sizzle in your brain box for a minute. Then we'll talk.

interesting

Cady released a bit early this morning, but has since regressed to a dystonic state. She is alert and aware. While she is in pain, she is able to communicate very clearly.

Twenty minutes ago she was given the Phosphenytoin and Diazepam in the hopes that it will release her muscles again and stay that way. In the event that it does not, they would like to try Trihexyphenidyl (Artane). It is an antispasmodic used to treat stiffness, tremors, and spasms. It is used to treat Parkinson's disease.

I don't know if any of these pharmaceuticals are helping. I hope that they can find the right combination soon so we can all just fucking go home. She is asleep now,though.

Addy is doing a little better, so that's some good news.  She's been taking her Amoxcillin and Tylenol like a champ so she can get better faster. It's also helpful to have friends and family to help us with things like letting our dogs out, shoveling, etc. If any of you helpers are out there reading this: thank you from the bottom of our hearts. It means more than you will ever know.

More later.

back again

We are back at Barbara Bush again. She has been presenting signs of rigidity all this week. We had been giving her Diazepam. She'd  come out of it, but the next day, we'd be right back where we started. Unfortunately,  last night , it got worse. Of course, sure enough,  I get another call saying Cady's hands are acting up again. She almost made it a whole day this time. Our youngest, Addy, came home from school with Strep throat so i picked  her up. 

I drove home from work afraid, angry, and sobbing my heart out. I could feel way deep down that something terrible would happen.  We sat around the ER waiting for a room upstairs for 4 hours (not like the previous 12 hours from two weeks ago). She has tested negative for Strep throat and the flu. While this is great news, it doesn't  point us to a glaringly obvious diagnosis.

She is heavily medicated and miserable. The ususal cocktail isn't working, which is incredibly  frustrating. The docs are trying Phosphenytoin to see if that works. If it does, it is similar to Trileptal, and she needs to be put back on that. Maybe it was working after all. My suspicions about the Acetozolemide still stand. She hasn't been herself lately and that may be the culprit. Or one of many. 

Her sister is with my parents right now. She is very sick with a very high fever, but she's on Amoxcillin and sleeping it off. We miss her terribly, Cady most of all. They hate to be apart. Addy hates to see Cady go through this painful stuff all the time. I love them both so much it kills me.

The Phosphenytoin has her sleeping now.

I have no idea what is going to happen. Every time it does, I imagine the worst possible outcome.  She had a chest x-ray, urinalysis, bloodwork for CPK levels. Everything.  There is no sign of a bacterial infection. It could be an undetected virus. I don't know, and I'm getting damn tired of it.

Every time we wind up in the hospital, I wonder if this is the "BIG ONE". I wondered if these events are just leading to a much larger problem. I wonder if every time she says "I love you" it might be the last time. Keep your loved ones close and be thankful that you have what you have. 

Yet again we are in the middle of a snowstorm. I hope my bad feeling is just a feeling and not reality. Thanks very much for all the love and support.  As always, we'll keep you posted. 

Yay, anxiety!

An appointment with our neurologist here in Maine has resulted in a conversation about weaning her off the Trileptal over a six week period. We are all for taking the risk that she may react in a negative manner if that happens. This sucks for many reasons, but could reveal something incredibly important. Our concern lies in both directions.

I was hoping I would come home waxing poetic about hope and the power of positive thinking, but I sat here staring at a blank screen. I am frightened. I want something to happen, but I lie awake every night wondering if I will wake up and have her be gone from us. We don't know if this is progressive. We don't know whether or not we'll wake and have her be unresponsive. Something has to change, but I worry that it won't be for the better. There is so little known that it is impossible to prepare yourself for the next step.

The weaning has started today. Tensions are high.  I am having a harder time writing about it than I thought.  Between the last paragraph and this one there has been two days. I had to work today,  but Patrick stayed home with them and said they were well-behaved.  Cady has more energy than last week. Perhaps the combination of the two meds was making her irritable and overtired. Her helpful, silly nature has returned and I hope it stays. We have all had some seriously emotional conversations about how we all need to work hard to communicate over the next several weeks. She is a very self-aware child and we encourage her to advocate for herself. We ask that if she feels strange or has pain, she speaks up and isn't afraid to admit she needs help. She told me that she can sometimes feel an episode coming on and other times it just hits her out of nowhere. 

The neurologist has asked us to keep a sort of journal "on the last 6 months and what they have been like in terms of frequency and severity. This is how we will figure out if there is a difference being on or off the Trileptal." I didn't mention the blog, but I will someday soon. 

Its hard to document something that is so close to my heart. I want it to be articulate and poignant, but I have honestly had some serious mental blocks just to cope with this.  We need warmer weather and most of all to be outdoors. Not only does it boost our moods, but there is something about bare feet in the grass and sun in your face that just makes everything seem better.

I need to go to bed, so unfortunately I must cut this entry short for today. Thanks for tuning in!