Care Pages Part 1

I think of Fiona's time at Childdrens Hospital in Washington D.C. everyday.  When she makes a strange movement I stand frozen just staring at her making sure she's not having a seizure.  When the kids eat I'm all over them about chewing & sitting properly.  Mostly I think about how good life is having my children safe and sound.  Everyday worries are put in perspective as I remind myself, as long as our family is all together I need nothing more.

February is a month I find these thoughts surface  with more intensity than usual.  It was three February's ago that I wrote updates in the Care Pages. I think since writing them I've probably re-read them only a few times. They don't do justice to that time in our lives.  Nonetheless I've decided to re-post those notes in this space over the next couple of weeks. 

I write in this blog for a million reasons, the greatest of these is for Reed & Fiona.  I want them to have a recorded history about themselves, to understand what our family is built on.  Our time at Childrens is a big part of our lives and has changed us, the kids should know about this. So,For the sake of consolidation and an explanation as to why Mom & Dad will go grey early in life... Here's the first update from when Fiona was just 23 months old in February of 2009. 

I was tempted to edit but to be honest the chaotic nature of them serves this time well.  Okay to be super honest, I'm much too lazy  busy as well.

The full Fiona story- It's a long one

I apologize for the lack of updates. Trust in the fact that we know the misery tied to not knowing, and appreciate your love. We look forward to responding to each of you individually. Today we finally have internet access, so you can expect updates more frequently.

I am going to recap the story as best I can to fill you all in. I have not slept much for a week and a half, time is different here and this roller coaster has left me disorientated. I know I will leave out many components of this disaster, especially the doctors saying this or that. Perhaps this is more a therapeutic update for me than a Fiona update, we shall see. So here it goes.

Two Sunday's ago the kids and I were pretending we were @ the movies (Reed and I had gone on a movie date the Sat.before) Fiona started to choke and I ran with her in my arms up the seemingly never ending road screaming for help! Long story short, she stopped breathing and mid route to Calvert hospital and was flown to Children's Hospital in DC. Ry and I found this out once we arrived @ Calvert ER. Ryan drove the entire way not knowing if his baby girl was alive or not. My close friend Meg drove me and had a cell so I could call the hospital and speak with a social worker who kept me updated. Mostly with news that Fiona was stable,no,unstable. We frantically arrived, then they operated to retrieve a small popcorn kernel from her trachea. Once again we were left wondering, is her brain function going to be the same. Fiona quickly recovered to her sweet self and won over the hearts of everyone she came in contact with, "thank you nurse, "purple Popsicle please." They ate her up. She didn't want to leave because we allowed her to have as many pops as she desired and to eat with her hands, plus she got a huge balloon. After exchanging emails with favorite nurses we were sent home on Tue. told that she would be lethargic, after all she did go through a major trauma.

This is the day after she came home the first time. Only to be flown back to childrens later this night. She couldn't walk and was extremely fussy.  Good thing she has the best dad ever.

Wednesday she still could not walk but tried to and as the day went on she got increasingly weaker. We did call our primary care Dr. who instructed us to give her some Gatorade. I returned home shortly before 7 and my mother's intuition told me to go to the ER and have them tell me I'm a crazy worried mom. How I wish this were the case. 5 minutes from the hospital she started to fuss, I reached my hand to her and she started to squeeze it, but it was much too rhythmic and I knew she was having a seizure. I blew through 2 red lights. (after a quick pause at each) In the ER we discovered her entire right body was seizing and after much medication she was taken in for a CT scan while we waited for her second helicopter ride in 4 days.

This is where the story begins to blur together. I refer to it as the dark days. I would go from being numb to non-stop crying. She continued to have seizures every few minutes for the next few days and oddly some of the best doctors in the world could not(and still can not) figure out what is going on. So, they started to go down the list from very common to extremely obscure diagnoses. Yes, we are living in an episode of House, and I wonder where House is now? I give so much credit to the teams of doctors who are working on Fiona. They have been extremely open to questions and honest. For many friends and family members a way of gaining control has been to research and we were grateful for this as were the doc's but most of the time the tests were already being ran. Mind you, during the first 4 days of our second trip to the hospital our Fiona was weak like a new born, yet had the voice of a 2 year old begging "Mama, Mama".  She could not open her eyes and constantly fussed. As her mom it is my job to kiss it and make it better, and all I could do was weep, no , I howled because I felt her agony and then some.

She had an MRI done Thursday which revealed there is an "inflammation"(they think) in her brain, which controls muscles. Still what is it's cause? No one knows, we are working with world renown neurologist here and they are openly stumped. Then the dark times turned bleak on Saturday at 4am when Fiona's right lung collapsed. She was using everything she had in her to breathe while still yelling for me. The decision to put her on a ventilator was necessary. My world fell apart and all I could think was my baby is going to break my heart on Valentines day and leave this world. Of course positive thoughts were encouraged by family & friends, but no one had gone through what we had gone through and they were not loosing their baby. I hated myself for the images and thoughts I had because I knew I was supposed to stay optimistic. I hated the world for spinning while mine and Ryan's stopped. Even more I hated that it was a long weekend and we were left with a skeleton staff for 3 days and many tests would not even be looked at until Tuesday.  My baby had not opened her eyes in days, would I ever see those blue eyes alert again?

Our nurse, whom we love so very much pulled me up and explained I had lost perspective and need to get out of the hospital, out of this room and sleep, maybe shower.  Ryan requested my two favorite girl friends from home Brenda and Tatjana take me out. This is what I needed. I went to their hotel and got a shower and food and then they brought me shopping. I did gain perspective and my mother's instinct kicked in again and I know I am taking my lil' monkey home.

So this is how I made it through the weekend. I felt a strength I never thought I had. I put on my war paint and went into battle. I took notes along with the doctors, I consoled and fed new scared parents, and much to my delight most have gone home now as we still wait . I am so happy for them but so jealous that they have the comfort of bringing their child home as I pack my kitchen sink for the long haul here at the hospital. I leave big tips, smile at everyone, hoping this energy I release into the universe will somehow come back only to save my baby girl. I realize if you ever need to suck up to anyone it's the doctors who are trying to save your child,(I also put teachers and fire fighters/EMT's on this list) I chose feeding or at least offering to feed them because they will go a day with out the comforts of food or using a bathroom so that they can help children. These doctors and nurses are incredible and I wish it was under different circumstances we could have met.

I wonder if the pictures of Fiona are disturbing? Surely 2 weeks ago they would have been to me. In that short amount of time our baseline for normal has changed. It's like this, "oh your baby had a seizure? Mine too" as if we are talking about an Elmo stuffed animal. Or I call Ryan to ask how Fiona is doing and he responds, "Great, they just increased her dose of morphine, she's still on her anti-seizure med and had just a minor seizure" all this as he looks over his daughters bedside with her arms tied down and a machine breathing for her. Normal and good are not what they used to be. So, I apologize if the pictures are in any way disturbing, but this is now our new normal, our new good.

I digress, Sunday was once again a day of waiting, It was looking better, Fiona had cracked her eyes open for a few seconds and squeezed a hand now and again. By this time she had 2 EEG's revealing she was having seizures but not all of the jerks on her right side are seizures. Now they are much less frequent. There was debate if we should take out her breathing tube, but it was decided on Tuesday she would get another MRI to see if the brain is getting worse or better.

 Sunday night Fiona suddenly decided she was going to hit the road and blow this joint and tried to jump out of bed and fight the nurses with all her might. Everyone was on her side when she tried to put the doctor in a full nelson, and I am confident that she would have if she was not tied down. It was fabulous, my baby was on the mend. As one old neurologist put it, "We will continue to look stupid as Fiona heals herself"

Yesterday was a fight to keep Fiona sedated. This is of course good news, but entirely frustrating. She is so scared and annoyed by being intubated. As the day rolled on I became anxious for the next step which (in my opinion) is only hindered by this tube down her trachea. She opens her eyes for longer moments now and thrashes around, I can see how scared she is and found comfort in telling her tomorrow this tube is coming out. Oh and she has phenomena by this point.

We were scheduled for an MRI at 8pm last night. Which means almost another full day of fighting Fiona to stay sedated, absolutely contradictory to what I truly want. My sisters stay by her side with their war paint on too and try to calm her. Time ticks on.

 One of our new "PICU" friends have a son ,13, and was told yesterday morning he will not make it through the day. It's tomorrow now and he is still here, yet I am broken hearted for their fear because if he does make it he may be brain dead. There is death,fear and sick children all around us. I hate this hospital, I hate that I have been here so long that my wrist band is wearing away and that I know where the good showers are and run into soo many people that I know just walking through the halls of this huge hospital. I especially hate that we have at least another 3 weeks here. I am so sad that Reed is not with us and when he does see me he tells me to "Go, go help Fiona" and he does not say this for her sake he is unhappy with me. After all he's only 3 and seeking control too. How are we going to raise 2 kids living a couple hrs apart and work?

 So as I am thinking about all this the head doctor of the PICU approaches me to tell me the pump on Fiona's medication failed and distributed too much to her too quickly. Fortunately she is fighting so hard it didn't keep her down long. But my sense of security and control once again was clamped off when I ask him what I can to to make sure this doesn't happen again and his response is to "trust us". This is very very very very rare like, it's hasn't happened in a decade, but it happened to us?? COME ON!! Then he's back to tell me her MRI and MRS are canceled for tonight and may possibly be re-scheduled for tomorrow at 12. Irritated isn't the word. I am about to kick some butt and let my disgust be known. For what it's worth I did freak out and the entire Intensive care Unit is still in an uproar and we have been given the direct line to the head guy Dr. Peter Holbrook to plead a case for other children and parents who daily find themselves in this situation. The squeaky wheel does get the grease, even if it's not for you.

A code blue was called last night in my friends son's room as I was typing this update and I feared they lost him. I want to fall down and cry my heart out for them. I feel guilty because I know that family would give anything to have what I have right now. I need to go hug them and be with them.

I am getting ready for bed, a nice comfy chair next to Fiona's bed. I miss snuggling up to Ryan.

Fiona is now back from her MRI and it has been revealed to us that the illumination in her brain is the same. This leaves us with mixed feelings. I truly believed it would no longer be there. The good news is it is not worse. One of the best Neurologist in the world has taken on our case, because he is totally perplexed and wants to figure it out. I truly hope he does.

What next? We are in hopes Fiona's respiratory system will be able to handle breathing on it's own. Tomorrow we are trying to set her up for a successful extubation. After that, taking our little druggie off her morphine and other drugs and see what we see. She appears strong as she continues to pull above sedation. I am scared she won't be the same little girl or her lungs won't be able to work on their own. Yet, I am confident that she is ready to rock and roll. We Know this is not a sprint, but a marathon. Once again We thank you all for cheering us on at the start of this race, we ask you to continue to root us on so that we can celebrate with a huge party when we reach the finish line.

I know this is the longest note ever- but this is the longest week & a half of our lives. I know my thoughts are all over the place, but I don't think I will ever be able to sort the events of the past week or so out properly. Thanks for listening to our story.
All our love- Trudy, Ryan, Reed and our sweet little Fiona. xxoo