Back in the Hospital

It's 2:15am and we are at the hospital. After sleeping most of this afternoon, Lila woke up really struggling. We did the whole protocol - breathing treatments, call the pediatrician, come to the ER, see doctors and nurses and respiratory therapists, get admitted and transported up to the good old 5th floor (our second home), talk to the nurse, talk to two doctors up here until finally in the wee hours, I can maybe get some rest. So I'm going to try to until they come back in for vital signs and breathing treatments.

My head hurts. My stomach really hurts. But Lila's finally asleep. Her oxygen is at 96, which I will take. But I am so tired right now that it's hard to imagine that I will ever feel well rested again. Samantha cried tonight when I told her I was taking Lila in. Poor Ben has a lot to manage tomorrow.

Right now I want all my family to be safe and healthy and I want to sleep for a few days. This was supposed to be our first night at Chautauqua had we gone. Tomorrow morning, there in the outdoor amphitheater, voices will be raised, accompanied by a giant organ, to, "Holy, Holy, Holy." I will miss it. Instead I am sharing a hospital bed with my daughter trying to hold on to hope, find the positive, and not cry too much about all the things it feels like I am losing in the midst of this time.

...and we go back down...

Lila is sleeping right now. She fell asleep at about 4:00PM after a tough day for her. We were outside a lot today and it was very hot. She didn't do too much active but just breathing in that heat is work for her. Her breathing is labored like I haven't seen in a couple of weeks. I hope we aren't going into a downturn. I really don't want to go to the hospital. That's always there in the back of my mind when she gets this way. I am so tired of the constant watching, fear, and worry but in some ways I have forgotten how to live any other way. I hope constantly it seems, that Denver will give us answers and our family can relearn what normalcy looks like.

Testing, testing

I sent this from my phone to see if I could send in quick updates while we are in Denver. It worked! I will be able to keep everyone better informed!

Preparations

Lila is still on the up side of things, although I think she is getting slightly worse again. She is still waking up most every night saying she can't breathe, which is so hard on us both. She still rests frequently. She is beginning to have some trouble outside again. Still, I am grateful that she is where she is and not worse.

It is hard, though, when we are at this stage, knowing that she always gets bad again. It's hard to keep from feeling like we are living under a cloud and never knowing when a really wicked storm is going to come down around us. I'm trying to focus on the positive, but it's difficult when the worry is always present.

We are preparing for Denver. We are not going to New York like we had planned. Since the church has agreed to let Ben be gone with us the whole three weeks (two plus weeks of treatment and several days of travel time), we all decided that having him gone for the week before was too much. He needs to be here serving the church before this long time away. Chautauqua in New York is my favorite place in the world and a time of rejuvenation that we look forward to every year, and this year, was a way to make some money for Lila teaching classes. Despite all of those things, I am feeling a little relieved. It seemed like too much to be gone there and then come home and leave again.

So I am preparing. We leave two weeks from tomorrow. The girls are preparing too in their own way. We have been trying to make sure that Lila knows that they will be trying to help her there, but that it will be tough on her. She says that she can manage getting IV's, blood draws, and pinches (her word for shots) but that she can't be brave about it. I think she doesn't like the word "brave" because we mostly use it when something is going to hurt her. She is brave. She just doesn't like the word so we don't use it and we tell her that it's okay not to be brave. Samantha is realizing that this is going to be a strange trip but is thinking of things we can do to make it easier on Lila. She really is a compassionate, amazing kid. And I am trying to think of all the logistics that need to be dealt with here and taken care of so that we can function for three weeks 1150 miles away from home. And trying not to worry about money. So strange to make plans for a trip when the money still isn't there. We have received around $500 since my last update. We continue to be grateful, humbled, and just a little scared. Two weeks and we still don't have enough to go. Talk about faith. Or stupidity. Sometimes I'm not sure which.

No, I know it's faith. I know that it is faith that is getting us through, faith that is keeping us going, faith that led us to this place where my daughter has the best chance of healing, and I see God's hands in the hands that are lifting us up in prayer and helping us make our way. So we will try to keep the faith and we hope that you will too.

Links

I've been thinking about links lately as the journey to Denver becomes a reality. It has gone from seeming like a total impossibility, to an unlikelihood that we have to try for, to a "could this really maybe happen?", to a I can't believe this is happening, to an "okay, we're going - it's obvious this is going to work." And it has gone from the first to the last because the links we have formed and our families have formed. From people who graduated with my parents, the church that Ben grew up in, the middle school that Ben's mom teaches at, Ben's first church where the girls were both born, my sister's husband's mother's medical practice (did you follow that?), the woman who helped me with the girls' births, seminary classmates, friends from high school church camp, church members from our current church, honorary and actual cousins not heard from otherwise in years, an amazing dear, courageous, and generous grandfather that I have not seen for a long time, women that I met online, farm friends from our last home, and that's not even mentioning friends and family that we see all the time and talk to often. I can see the links that are holding us up and keeping us from falling. We are literally floating to Denver on a sea of love and care that I would have never believed existed. I am cynical about human nature.

We are not where we need to be financially to get there yet, but I believe that we will be and so I have started preparing. I need to figure out a way to take those links with us. Ben and I will be alone in Denver for the most part going through tough stuff. We found out that Ben will be staying the whole time (thank you, church) because what Lila is going through will be hard. I hope that I can remember to feel lifted up even in the midst of the difficulty of the search for answers to Lila's lungs.

Speaking of links, how wonderful is that picture? The link between Samantha and Lila is so beautiful and strong. They really are terrific sisters at this age. They play and watch out for each other. It's so hard on Samantha when Lila isn't doing well. She has been relieved the last week or so to watch her improve. And she is improved. She has plateaued at this spot of better, but still not well. She tires easily, but can be outside. She is sleeping better, but still not all night. She complains that her chest and throat hurt, but she needs fewer breathing treatments. She hasn't lost any more hair, but her bones still hurt. I am taking what we can get.

And one more link...some of you have asked and wondered about this program where we are sending her. Check out this: Pediatric Pulmonary Diagnostic Center and this: Pediatric Intensive Day Program. These are the programs she will be participating in. There may be more overnight stays with sleep studies and a possible surgical biopsy, but mostly we will be at the hospital from 7:30am until 5pm every day seeing doctors and doing testing.

Links are helpful and informative, and right now the human variety are keeping me going and keeping me strong. Thanks all.

Chugging Along

We have had a relatively uneventful few days. I can feel things slowly trying to get back to normal. More focus on work, church, housework, the farm, and less on breathing. Lila is doing much better. She is still up at night some, and although she's been able to play outside, she still can't really run. We don't know if that is because of her breathing or joint problems from the steroids. She still complains that her throat and upper chest hurt often.

I am so glad that we have come out of this bad, weeks long episode. I was starting to be afraid that she just wasn't going to get better. It is a concern of the doctors that it lasted so long - her overall trend has definitely been worsening. For now, she is doing better. Tired, but much improved. Which, I guess, describes how I feel too.

We are making plans to leave next week for NY to teach our classes (Ben teaching juggling, and me teaching two, maybe three, sections of a cheesemaking class) and when we return we will only have four days until we leave for Denver. We will be gone four and a half out of the next six weeks. It feels so huge.

As far as Denver, it is looking more like Ben might be staying with us the whole time. We received word that they might do surgery while we are there to see better how her lungs are doing. We both want him there for that, and we won't know when that will happen until we get there. Over $10,000 has generously and amazingly been donated. We will not be certain of the final cost until we get there; they still say at least $20,000 - if we are a little short, they will let us make payments. We have also received money for the trip which has been very wonderful as we weren't sure how we would afford it. And some kind, thoughtful anonymous person sent us gift certificates to be used for the girls for some little treats. Our church has been very supportive of the time that Ben will have to be away with all of this. We have truly felt blessed and lifted up by love.

For now, we will try and be organized and energized and prepare as best we can for this next time of being gone. While I can not overstate my gratitude, and I hope so much for answers that will end this all for Lila, I am dreading this trip. It will be difficult for Lila, and that is always tough to see, even when we know it is to help. I will keep updating frequently. Thanks for checking in and checking on us.

Blueberries

Lila and I both seem to be feeling better today. A wonderful friend and neighbor and all around terrific woman came yesterday and kidnapped my laundry pile and Samantha. I was too tired and too humbled and too grateful to protest. As soon as she left, Lila and I got into bed and took a two and a half hour nap. It helped us both.

Lila slept better last night too - only waking once for a breathing treatment. And today we went blueberry picking at a farm about two miles from our house. Lila was outside for several hours. She struggled a bit with wanting to run around and not being able to, but she was fairly active and her breathing stayed all right. I think we are really on the upswing of this longest and worst flare up. I could use a few weeks of normal before the big trip.

Lila (or maybe I should write Lilac since she abruptly announced tonight that she wants to be called that name always instead) fell asleep early. She was worn out, I'm sure, from being outside and still doing the work of recovering. But these are small steps in the right direction and they feel good.

It is hard to be on a roller coaster ride of better and worse and better and worse, but for the time being, I'm glad to be on the better side of things. I hope she keeps taking these small steps everyday until she feels normal again.

Synonyms for...

My thesaurus says that the word "tired" has many synonyms - exhausted, worn out, weary, fatigued, drained, sleepy, dog-tired, shattered...I think that today I feel them all.

If you are checking to see how Lila is then I'll put that first and then go into how I am so you can stop reading after the Lila update if you want. Lila is still a mystery. She has been outside a little more today and tolerating it pretty well. This morning she had a pretty bad asthma attack but her emergency meds seem to have gotten it under control and kept it there. I am glad because I really didn't want to go back to the hospital. She was discharged a week ago today and this is our longest stretch out in a month. She is still tired. She is still not sleeping. Last night she was up from 12:00am til 3am and then up at 5:30am. She starts coughing and then wheezing and can't rest. We see our doctor again tomorrow - I don't think there is anything she can add. At this point, everyone agrees that her breathing is not under control, we just don't know why or what to do about it. We are all, doctors included, just trying to keep her stable until we get to Denver.

Back to me. I try so hard to be positive but I am exhausted, worn out, weary, fatigued, drained, sleepy, dog-tired, and shattered. I started thinking about it more after a mother on a message board for special needs kiddos that I frequent posted this, "I'm tired of this ever changing journey and only wish for some consistency. I don't even have the energy to say any more than that." It made me feel so much better to know that I am not the only one who feels this way.

I am not sleeping at night. Even when Lila can rest, I don't rest very well. After all, I might miss deteriorating breathing and she might get into real trouble. Not sleeping at night takes its toll and it really, really is.

Managing Lila's care feels so huge. I am trying to juggle it all, but the balls circle round and round in my head, more and more being added until I am dizzy and dropping them all over the place. Meds three times a day, more if her breathing is bad. Listening to her breathing all the time. Remembering doctors appointment. Keeping her from running around too much. Trying to remember to have interaction with her that doesn't begin with, "Lila come let me listen to your breathing!"

Getting ready for Denver. I need to visit five different doctors offices and two hospitals in the next week to request medical records to take with us to Denver. I need to make a budget and start figuring out how to pay for the actual trip part of the trip. I need to think about food, plane tickets for Ben who will drive out and back with us but not spend the whole time there, someone to preach while we are gone...on and on.

We have been overwhelmed with care and giving from others these last two weeks. I have friends and family I need to call and thank. Really I need to write notes. My heart is full of love and gratefulness; it's energy that I lack. It needs to be done. They have given so hugely to us, they need to know what it means.

We have been planning a vacation - really a continuing education conference - for later this month. We had thought to cancel but Ben and I are both teaching classes and will make more than we will spend. And we need every penny right now for Lila. So I have to prepare for a class in the next couple of weeks.

And there is life - laundry, cooking, cleaning (ha!), trying to sort out a workable work schedule, spend time with Samantha, be a friend somehow to these wonderful people who are supporting us...

I want to lay my head down and close my eyes. I can't imagine it getting better at this moment. I know often I can but right now, I am reaching for the positive and all I can find is this tired blur. The worry is exhausting. The management is exhausting. The exhaustion is exhausting.

Every time I talk to my friends lately I just want to cry but I don't have the energy. It's easier to just say, "I'm okay." She has never been this bad for this long - it's scary and wearing. It seems that she might be improving and I am ready. Something has to give because my level of functioning is rapidly dropping.

Ok. One last reach for hope...Lila is outside right now on the playground - mostly sitting, playing hospital with Samantha. I've gone out four times as I've typed this and she is breathing all right. A week ago she couldn't have done even this. Maybe we are on the way out of this flare up. If we are I will be glad, and try not to waste too much energy waiting for, worrying about the arrival of the next one.

A question answering tutorial

I think that I am in need of a tutorial on how to answer questions. We got to go to church today which was nice, and too infrequent with Lila's flare-ups. Many people asked how I was, and how Lila was. These are good people. People who care, people who genuinely want to know, for the most part. And I am at a total loss for how to answer.

"We're doing okay." That's not really true. I am very tired. Lila is very tired. She was up almost all night, literally, the last two nights. She just can't sleep when she can't breathe. I am exhausted and frustrated and emotional. Maybe "okay" is the right answer - we are not in the hospital right now and have not set foot in the hospital for almost...5 days!!! (That might be a record for this month.) Maybe we are okay.

"Things are really hard." Well, they are. But we are also feeling lucky - blessed and grateful. And it's hard to tell someone how hard things are with my bright-eyed, happy Lila right there and looking good.

I could tell people how she is still having good days and bad days but still nothing approaching normal. She ran around outside for five minutes tonight. She was wheezing and coughing and out of breath when she came in, but she had those five minutes and that was nice. Even hopeful.

I could tell people that it feels like there is a shadow over us a lot of the time. Waiting and wondering if she is getting scary bad, respiratory distress bad. That I think Samantha has forgotten what normal is. That I am tired all the time. That both girls are having behavior issues from all the upheaval. That I imagine finding scary things wrong with Lila. That I worry about missing the first signs of serious trouble. That I long for routine and days without doctor visits.

I don't know how to answer. Do people want just the facts about Lila's health? Do they want to know about my worries for both girls? Do they want to know how complicated-ly emotional I am feeling? Do they want to know the way that it hardly feels like I have a life anymore because of how much management Lila's health problems take? I really don't know. So I guess until I get a better suggestion, I'll just say, "we're doing okay."

Lila and Samantha are in the bath tub right now with the shower on and princesses galore to play with surrounded by bubbles. I keep hearing them laugh and giggle. Ben and I were talking earlier that this last month we haven't heard that sound as much. I don't think Lila ever laughs in the hospital. That sound is music to my ears and a balm to my tired spirit. I wish I could publish those sounds online. They give me hope and remind me why we are walking this road, why we are working so hard to manage her breathing and get answers, and why, at least sometimes, it isn't too far from the truth to say "we're doing okay." Little girl giggles. For this moment, all is well in our house.

So if you were to ask me right now, "how are you all doing?" I would say, "Lila is still struggling with her breathing and not sleeping at night. I am very tired and scared and overwhelmed. But I am listening to laughter, and right now, feel like there will be an end to this." Here's hoping.

Nitty gritty update

We are feeling blessed. So far $7980 has been donated to help Lila get to Denver. We have already sent $6000 of that to National Jewish Hospital and so now we have dates. Assuming we can raise the money, she will be going July 14-27.

We are floored by the giving that we have seen, and we have been sustained by the outpouring of love, concern, and support. We know that getting Lila to Denver is what we need to do for her health, but sometimes we struggle with the emotional part of it all. We feel adrift and are anchored by words and prayers coming our way.

How much more we need to raise is uncertain. We found out that we are not eligible for financial aid from the hospital since our primary insurance doesn't cover Lila's asthma and lung trouble. There is a possibility of making payments on some of the amount but we don't know yet. We likely will need another $7000-$13000 for the hospital as well money for the trip. We have faith that it is going to work out. How can we not with the support we have received? Thank you all for your care and love for us and especially for Lila - you can't know how much your comments, cards, phone calls, and prayers all mean.

Bravery

I am not nearly as brave as my daughter. As either one of them actually, but right now I am talking about Lila. I took this picture minutes after the nurse took out one of her two IV's and tried to draw blood from her arm, failed, and then drew blood from three separate fingers.

Adults know that these things hurt and are uncomfortable, but that they are temporary, and they are done to help us in some way. Lila knows none of that. She knows that it hurts, that's she's scared, that no one is helping her. But she trusts me to hold her and we get through it.

After it's over she flashes a beautiful smile. All is forgiven, although sometimes she isn't very friendly to the nurse who comes in next. I don't blame her.

I am proud of her though. Proud of her for still being sunshiney, sweet, and brave so much of the time. I am learning a lot from her.

Princesses and books and mad

These are the ways that Lila has spent her day. Since I updated everyone on me, I thought I'd update on Lila.

She has mostly been playing with her princesses and reading her books. She so badly wants to go outside and run and play and walk through the hay field. I tried to let her go out for a few minutes earlier but she started huffing and puffing so quickly. We ended up coming right in. She is such an active and outside kind of girl that it is so hard for her to be restricted.

She gets so mad at us that we won't let her do what she wants. I so wish we could.

We have no results still from her CT scan. We know she is having trouble breathing, we just don't know how exactly. That is what we hope to find out in Denver. The doctors have ruled out any cardiac involvement which is a relief, although I was certain months ago that this is all about lungs.

For today, Lila is a little subdued, a lot frustrated, and really wanting to be able to do the things she loves. Its difficult to watch. Keep praying for her as she struggles. We are so grateful for all the comments and support.

"How do people do this?"

That is the question that I've been asking everyone that I have talked to lately. The staff NICU chaplain whom I've worked with and cried with at breakfast Monday morning, the social worker who came to visit, the friendly nurse, the attending doctor who worked so hard to figure out what was going on, my good friend and neighbor, my therapist - I keep asking and asking, thinking that someone has to know. Other parents have very sick children. How do they make it work?

How do you handle the fear of watching your child not breathe well? How do you handle telling your child that she can't go outside and play like other kids because she's too sick? How do you tell your not sick child that you are leaving again and will miss (again) something important to her? How do you deal with the exhaustion of being in the hospital? How do you answer your child when she asks why you are letting people hurt her with needles when she just doesn't understand that it's to help her? How do you answer the question "how is your child doing" when you have no idea what people really want to know? How do you manage to have any normal when you are watching like a hawk for the first symptom that might mean trouble? These questions and so many more are what I want to know when I ask, "How do people do this?"

I got answers from all those people I asked. Some of them weren't answers I liked. "A lot of families end up having a parent that stays home with their sick child." Yeah, I don't like that - I am planning to start a chaplaincy residency this fall.

"You do a lot of crying." I think I have that covered.

"You know that it's okay to feel mad and sad and scared and lonely." That was good to hear. We do feel those ways sometimes and then we feel ungrateful.

"Give yourself space to feel exhausted." We're learning to do this. Learning to take recovery days after the hospital. It feels indulgent, but we are finding it necessary.

"You lean on your friends." We have learned this. It is uncomfortable but we are so lucky to have the people we do. We get phone calls. We get visits. I walked in yesterday from the hospital to find two of my friends cleaning my house so I didn't have to face a mess when I got home. We are learning, humbly, to let ourselves be cared for. We'd rather be on the giving side, but we are learning to accept it.

These answers help but I don't know that they really get what I'm asking. Maybe I'm asking, "how do people get through this without falling apart?" Because sometimes I feel like I am. I am reaching and stretching to find the solid ground right now. I'll keep looking and I'll probably keep asking the question and I'll give thanks for the solid places in my life - friends, farm, marriage, God - and take the shaky parts as they come. And if anyone has an answer, believe me, I'd be glad to hear it.

Exhaustion

I am typing this through a haze that makes everything feel very distant. I'll just post a basic update and will try for more coherency tomorrow.

We went to the ER right after church Sunday morning after Lila passed out again. They admitted her and we are just getting home now, Tuesday evening.

We have no new information - although we had a wonderful doctor who is trying so hard to puzzle it out. Lila was a trooper - in a 24 hour period she had two different IV's and six "blood draws" (as she calls them). She is terrified and traumatized by those things as well as by EKG and Holter Monitor stickers that go on her chest which she had several times. There were lots of tears but she was so brave.

She also had a chest CT scan which required her to be sedated. I did NOT do well with that. I couldn't be in there - it was too much for me. Thank God (in all kinds of ways) for Ben who was solid and comforting for her, and for me.

Her breathing when she is active is worsening. The doctors continue to wonder if there is STILL something in the house bothering her mostly because she was better at night in the hospital. There is so much speculation and no answers. We continue to hear positive responses about going to Denver and the help it might give us. I really, really hope so.

I will update with more news tomorrow. Thanks for all the prayers and thoughts.