Two Things That Hurt My Heart

It isn't really like me to post two posts in a row that can't seem to find the positive. But that's where I am right now.

Samantha is the first thing. In the midst of the hospital and caring for Lila and being home and sick, she lost a tooth. It was her fifth. And you know what? We did nothing with it. We have a special tooth fairy pillow. We didn't find it, we didn't put it in there, and the tooth fairy did not come. She hasn't mentioned it, but I think it likely that she has not forgotten. I feel like I am not being the mom I want to be to Samantha when Lila is sick like this.

And Lila. She said this morning, "when I'm in the hospital I feel like I can never laugh again." I'm sure she does. Her nightmares have gotten far worse, scary bad in the last 10 days or so. They're talking about calling in a psych consult to help her deal with her trauma over being in the hospital.

I so want a simple, playful, happy childhood for my girls. A childhood that feels secure and carefree and I feel like I am failing. After Denver, I was starting to get there after the last two years, but now? I don't know. I am so discouraged. I keep talking the talk to myself - this isn't the start of being in the hospital all the time - it isn't. But it feels like it. Maybe I shouldn't write and post when I feel like this but in so many ways, I'm not sure what else to do.

So thanks for reading. And thanks for praying until I can find my sense of gratitude and thanksgiving again.

Fighting Despair

We went home from the hospital Friday. It's Sunday night and I am sitting back in the ER. Lila is being admitted again. I had a fever all day yesterday and I feel exhausted. My muscles are shaky, my stomach is churning, and I want to bury my head in the sand and let someone else take care of life for a while.

But. I'm the mom. So I'm talking to doctors, nurses, RT's, patient care coordinators and trying to speak clearly and concisely and with respect for their knowledge. I am talking to my chaplain colleagues and supervisors and explaining what is happening and stately quite calmly that yes I am struggling. I am reassuring Lila when she is scared about breathing and being in the hospital. I am talking to Samantha who is feeling so insecure as this world that had gotten steady again is now fragmented. I am trying to work out logistics with Ben about who goes where when. I am trying to stay healthy. I am holding Lila and being strong as they talk about IV's and I see the fear in her eyes. I am polite to the woman from housekeeping who just came in to clean the room, thanking her for her work. I am doing all this and no one sees, no can tell that right now, alone, tears are running down my face and I feel like have no one to lean on. No one who can help with all of this. I am lonely in my struggles. I am fearful and grieving.

Because it is so hard to have a child who is so often sick. A child who needs this type of care. Denver helped tremendously, amazingly. For one thing, we have better tools to diagnose her with and they help the docs here care for her. But what if life is always going to be a struggle to manage Lila's health needs and family life? How do people do this? Really.

I try really hard to see the positive but right now I just can't. I am weary. God, I am weary. I am afraid right now that I won't ever get my energy or my motivation or my life back to where it was a week ago. I feel shattered and hopeless and like I am slowly being drawn back into a small space where the choices are few, the air is stale, and the fear is saturating.

Lila is a trooper. So is Samantha. Their mommy is trying to be.

Back In

Lila was admitted to the hospital again Tuesday morning. This is Thursday and we haven't seen the doctors yet today and so there is a chance we might go home today. Tomorrow is more likely. The doctors think that Lila has H1N1, although at this point they seem to think knowing that for sure is not that important. Whatever she has, it has really triggered her asthma. And it happened fast. Monday night she went to bed after a fairly normal day, Monday night she spiked a temp and started a nasty, deep cough. When she got up Tuesday morning her peak flow numbers were at 30% of her normal lung capacity. So, pediatrician, Denver doc consultation, ER, admit. And here we are.

I was really afraid that I was going to be dismissed because of how unusual it is for a 3 year old to use a peak flow meter. But none of the doctors did. They were all terrific and we got all my favorites (well, except for the med school intern in the ER but he's young and was just disbelieving, not rude).

They have her on breathing treatments every three hours around the clock. Her numbers are slowly coming up. Last night they were good enough for discharge. This morning they are not. So I don't know what they'll do.

In one way this is really horrible. I haven't slept for three nights. I had forgotten how hard it is to sit here and watch Lila struggle. I had forgotten how sore my body gets from sitting in weird positions and tensing my muscles all the time. I had forgotten how awful it feels to just check out of my life without warning for days at a time. No work, no plans with friends, everything upside down, almost no time with Samantha and the guilt of that, missing Ben, not cooking, not cleaning. It is so hard. It is so terribly exhausting.

But here's the blessing in it. I had a chance to forget. We knew that we weren't coming home from Denver with a healed girl. We were coming home with a better plan to take care of our girl with chronic lung problems. It has still taken an immense amount of management. But it has been four months since her last admission to this hospital. Enough time for me to forget some of it. That's a blessing.

The doctors here say that she is bouncing back much faster than previous times because her lung problems are under so much better control. They say if she does indeed have H1N1 with her lung problems that's a pretty good reason to be admitted - not a failing in our care of her. These are good news. And although I would not like it, I can handle an admission once every four months if that's what we have to do. It is so much better than the once every 4-6 weeks. Again - thank you, Denver, thank you, those who prayed and gave money.

Lila has been such a trooper. These four months have made a difference in her maturity and she is explaining to the doctors what they need to do to take care of her. "I do not need an IV but you need to give me breathing treatments even at night. Wake up to do that, ok? Also I only like my blood pressure taken on this arm. Also my temperature goes in my armpit, not my bottom. Also when that machine dings it means my breathing is bad and you need to put the thing in my nose to help me breathe better. Did you got that?" She is a character.

Samantha has been bothered by all this. I think she thought we were done with it. She is such an orderly, scheduled girl that my heart aches that we are just gone...again and once more her life is irregular. It makes her feel insecure about everything, I think. On the other hand, she seems to be enjoying some one on one time with Ben. She was getting so much of that before when Lila was in the hospital and lately hasn't been. It's made us aware that we need to give that some attention when life is normal again.

And this time I have faith that it will be normal again. Sure there is fear that this is the beginning, that it's starting all over. But really I think this is just a dip that we were told would come. And we just have to ride through it. I'll have to take care of my family, allow enough time for us all to recover when we do get home, and thank the Lord that Lila will get better and that this has become the exception to our life rather than the norm.

If anyone out there is still reading, I'm grateful for your interest and care. Let me know you're reading if you can, it would help. Thanks all for all you've done.

Painting a New World

The girls and I have a set time every Tuesday and Thursday afternoon to do something creative together. It's been good for all of us, especially with me starting to work. Last week we did body painting. It was so fun and if I could I would put all the pictures up because they are really, really cute. But I am probably the only person who wants to look at 70 some pictures of my girls.

There is a sense in me that we have been trying to re-form our life lately, paint what it will be from this point forward. Lila is still doing well. She has had a dip, where she isn't breathing as well. She has been more tired, and has been getting breathing treatments 2 or 3 times a day. But that is nothing compared to what it used to be. And I can't emphasize this enough, this is the beauty of what we got in Denver. She is not healed; her lungs are still weak, but we are managing her care. She is having a bad lung time and is still, with lots of rest, going to preschool with Samantha, taking swimming lessons, playing outside, and not in the hospital.

I have been a strange mix of sad and so happy lately. I think I thought, "oh, Lila is doing better. The last year and a half are over and we can just move on." But the reality is more like, "Lila is better. I don't have to fear for her every second and so now I am free to feel that sadness and fear more fully." So I've been emotional. It doesn't help (or maybe it does) that I am on call often at the hospital that Lila was treated. I spent time with a doctor in the PICU who was working so competently and gently with a family, and couldn't help but remember when she held my hand and looked into my eyes and promised that she wasn't going to let Lila die. Another of my colleagues was working with a family and the transport guy was with them helping. As he told this story, I got emotional because I remember all the times the transporter would appear with his red transport wagon to get Lila for an xray or CT scan and say, "Lilac! Come ride in my cadillac!" and she would always laugh.

I was on a call Sunday and a nurse grabbed me to ask about Lila and said he would always remember this story about her. Lila is terrified of IV's. She had one and it was time for it to come out and she was terrified of that too. In a 3 year old world, if it was bad to get it, it must be hard to get out. We reassured her, but she could not be comforted. Finally this nurse, Kevin, just took her arm and did it. It was over quickly and we told her it was done, the IV was gone. She stopped crying. She looked up at him, her whole face lighting up, leaned toward him, put both her hands on him and said, "I think I love you." It was a sweet moment. These memories keep flooding me now that I can cry over what she has had to go through. But at the same time I am constantly full of gratitude that we are past that. I love watching her run and laugh and have fewer and fewer nightmares about hospitals and needles.

On the same day this week, we got the final bill from the hospital. The final bill was $22,051 and worth every penny. We have raised a little over $14,000. No. We have been given and blessed through the amazing generosity of others with $14,000. With the blessing of the givers we spent about $3000 on the trip and another $2000 on the floor - tearing up the carpet the doctor said was so important for Lila's lungs. We did the work ourselves. The rest went to the hospital. We still owe $13,000. There is one other place through our denomination that might be able to help us and we will somehow manage what is left. The stress of how we will do that is small compared with the miracle I feel like we have received. My baby is better. I can do anything. Thank you all for that gift.

One more thing is on my mind. Health care reform has been much in the news. I am not (here at least!) going to wade into the politics of that. But it's hard for me to listen to the arguing and fighting about it when our family has been so damaged by the system. Because Lila got caught in a no-man's-land of pre-existing conditions and serious illness, we owe tens of thousands of dollars not even counting our trip to Denver. It is scary and overwhelming and we did everything right as far as health care. And! The treatment that finally helped her, that has kept her out of the hospital for the longest stretch in nearly two years is covered by no one. We are the lucky ones. We have support and have been given the gift of being able to get our daughter treated and we will make it through the rest somehow. And at this point, I don't care how it happens or what the plan is, but no parent should have to fear for the life of her child and wonder how she will pay for care, or choose between medicine to keep their child out of the hospital and food, or fight with insurance agents over and over when you are so exhausted from hospital stays and fear you can't function. I have been in all those places and I am one of the fortunate ones. I just want to yell out into the midst of this debate, "I DON'T CARE WHAT YOU DO!!! PEOPLE ARE SUFFERING. FIX IT!" I hope, whatever your politics, whatever plan you support, your voice will be added to the demand that something be done.

I continue to feel grateful for every single day. Thank you all for your prayers and love. Peace be yours.

Undented Joy

Now has been even longer since I last wrote. I am going to try to write every two weeks or so for the next six months so that all the wonderful folks who have prayed and given us help can see the after time.

Lila is still doing very well. Her treatment is working. She is still running. She is still more tired than most kids her age. But they said up to six months for her to really recover. The head media guy at National Jewish Hospital in Denver sent this picture to me yesterday. They have a few pictures and they talked with us for a while because they want to use Lila's story as part of a promotional thing. We are only too happy to let them do that. This place changed our lives and took care of our baby. I would give them almost anything they wanted.

I have started my chaplain residency and the last two weeks have been very busy and intense. It has been a transition for us all to have me working so much. They will be better after this week, but orientation is a lot of stuff. I was thinking of writing because two days ago, I came out of the YMCA, where I go at 5:45am, and had a flat tire. It was not a great morning for it because I was leading devotions for the chaplains at the hospital. Luckily my sister was there and took me to work. Yesterday was a not great day either. Ben called me at work first to tell me that Lila had gotten into the medicine and taken a bunch and he was calling poison control (she's fine) and then called me to tell me Samantha was throwing up. To top it off, I had a confrontation with a grieving person at the hospital which ended in her assaulting me. Not good times. But you know what? Someone said to me, "doesn't it feel good to have normal stuff going wrong for a change?" And it does. Something has shifted in me. I don't know if it will stay or not, but all these things seem pretty minor. I have this joy in me that cannot be dimmed or dented by the things I used to get so worked up about.

My daughter is well. She is playing and jumping and laughing. I've not heard her cough in a month. I have not been a patient with her in 6 weeks or heard her cry while going through tough procedures. I have not felt helpless. I have not cuddled her while she worked to breathe wondering if she was going to die. ER, Pediatric ICU, 5th floor, are slowly becoming places I work, not places that I feared my child's life, not places where I sat disconnected, lonely, miserable. How can anything dent my joy? I still feel like singing and shouting. My vision has sharpened to see what's really important. Now I know. Blessings to you all.

Normal Life

It's been a while since I have updated. Some of that has been because we are really busy - Ben has been doing a lot at church; Ben and Michael, my brother-in-law, replaced our last two rooms that were carpeted with laminate flooring which was one of the things the doctors felt was really important; I've been getting ready to start working as a chaplain resident next week. Some of it has been because I don't know what to say.

Lila is still doing well. It's going to take time for all of us to recover - Lila especially. She still rests more frequently than I think a 3 year old should, but the docs say that's normal. And she really is doing so much better. So much. She can still run around. She and I have been fighting with a cold for the last week, but she's really holding her own. It gives me such joy and that joy has not dimmed one bit, in fact the opposite, as we are home longer, I am feeling more and more joy. I am still watching Lila closely, I still get up sometimes at night and watch her breathe, the hospital where she stayed and where I will be working some has some bad memories that come back, but really, we are doing so well. Lila has even grown almost two inches in the last month now that she has been off of oral steroids for her longest stretch in almost two years.

When I say that I don't know what to say, it's because I have such gratitude in me toward everyone who is reading this. I don't know how to express that. I keep trying and will keep trying. We continue to receive money from churches in Ohio mostly, where Ben is from, who have heard about us and are supporting us. Every other day it seems, money goes into Lila's account at the bank - from $2 to $1000 and we are grateful for all of it. I hope that if you are reading this and you are the pastor of a church, or a member of a church that has sent money or prayers that you will hear this loud and clear and tell your churches - Thank you. You have made a huge difference in our lives and the life of a very sick little girl. Without your prayers and your support we literally could not have gotten through this. Now that we are on the other side, I can see that so clearly. There are not words enough to tell you how grateful we are.

Looking back, I really cannot see how we made it. Everything was so weighed down by fear and the constant worry of Lila's illness. We were walking through a haze and I only know that because it is starting to lift. There are so many things and discussions and plans that were put off because of all the uncertainty and now normalcy is taking some getting used to. I literally feel lighter. How do I thank a hundred people and several dozen churches for that? How do I thank the doctors and nurses and therapists that finally put the puzzle of Lila's lungs together so we could treat it? I am overflowing with thankfulness and feel like I know what grace is now, more than ever, and I don't know what to do with it. I don't know how many times I can write this before those of you reading say, "Oh there goes Kristin again going on and on about how thankful she is. We get it already!" But I think I want to keep saying it for a while yet.

There is a story about Lila's last day at the hospital in Denver that I haven't shared yet and my dad, who was with us, thinks I should. And since I always listen to my dad...Lila was getting one last check over the Saturday that we were hoping to leave. As the doctor finished listening to her and going over her last breathing test results with me, she suddenly threw herself into his arms - this dignified, though still friendly doctor - and said, "Thank you for making my asthma all better!" (In her little voice it was so cute.) So this terrific doctor hugged her back tight and said, "Oh, Lila, what are we going to do without you here?" And she pulled away, looked him in the eyes, and said to him very solemnly, "You're going to make other kids better just like you did me." That was it - we all got teary - me, doctor, nurse. Lila is grateful too.

The Last Piece of the Puzzle

We got a call on Friday night from one of the doctors in Denver. We weren't here and she left us a message asking us to call her back about some lab work that had just come back from Lila's lung biopsy. I was concerned, figuring the doctor would not be calling us if everything was great. I managed to get ahold of one of the doctors yesterday.

Lila has a colonization of a bacteria called mycoplasma in her lungs. That's the bacteria that causes walking pneumonia. She probably doesn't have that illness at this time (although we think Samantha does!) but has those bacteria living in her lungs. It likely becomes active whenever she gets sick which is part of why she has such a hard time. Also just having it in there makes her asthma medicine less effective and her lungs more "twitchy" as the docs in Denver like to say. Usually the treatment is 3-6 months on an antibiotic that she is allergic to. So they are consulting with the pulmonologist and will let us know tomorrow how they are wanting to proceed. Meanwhile, Lila's not supposed to be around people. I guess this is a contagious bacteria.

So this seems to be the missing piece of the puzzle. We knew she had severe asthma, irritated airways from the mold, moderate allergies, horrid reflux - but it still didn't seem quite enough to have her be as sick as she was. The docs said that maybe it was - but here is what we were missing. Every time her lungs would get inflamed this bacteria would jump right in and make it worse.

We have learned so much. There is still a ways to go in healing. We are all recovering - it's been a tough year and a half. We have work to do on the house to get it to where the doctors want it for Lila. We have to fight with Medicaid. I start working in two weeks. There are many house organizing and cleaning projects that just got put on hold. But I see the end. I believe it exists and it's there and we will reach it. Lila is still doing so well. I feel like I've been given a miracle.