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.

Bad news but who cares?

Okay maybe I care a little but just a little. Many of you know that Lila's primary insurance through the wonder of our unethical, incompetent health care system does not pay for any of her lung or breathing issues. She is covered by SSI disability which gives her KY medicaid. We were hopeful, after speaking with our case manager, indeed we were banking on medicaid paying between 15% - 30% of the costs of this trip. We found out today that the claim was denied. We can appeal and we will. And I think we have a pretty good chance. The doctor who looked at it said that he felt much of what they did could have been done here. Perhaps that's true. But it wasn't. We've struggled with this for nearly two years and no doctor was able to help the way they did. Ben and I said the same to each other that our only negative feeling amidst all the positive of this experience was that it seemed like some doctor here should have been able to do some of what they did. And in the end medicaid is going to save on hospital bills from this program. But that's logic and logic doesn't always seem to enter into the decisions of government agencies.

But I feel okay. We'll appeal. And really it doesn't change how I feel. I said it in the last post - I would have done anything to get her to where she is right now. Whether we get the help we were hoping for from medicaid makes no difference in my joy at how well she is doing.

All right. So back to some other things that we learned in Denver. We learned that her reflux is a very big problem in her asthma. She was on medicine for her reflux when they did the test to see how her reflux was and it was still really bad. Reflux makes asthma worse in two ways. One way is that as the reflux comes up, it irritates the nerves in the esophagus and the nerves in the lungs and trachea become irritated as well in a sympathetic response. The other way is that when reflux is bad enough which hers is, it can come up far enough to be aspirated into the lungs which also causes trouble. So they doubled her reflux medicine and surgery might be necessary in the future.

Also, a bigger deal to me, is that they figured out why she was passing out. It was connected to the reflux making her breathing bad. Evidently when your reflux is as bad as Lila's is, it can come up and actually make your trachea spasm, cutting off your air supply and making you pass out. I won't bore you with all the ways the symptoms match and how they figured it out exactly, but it fits precisely what was happening with Lila. It is so good to know and understand why that part of it was happening.

We have some tools besides the medicine for helping with her reflux. We will also be followed by a GI doctor who will help us keep it under control.

That's more of what we took away. I'll finish the wrap up in a day or two. I wish that I could find a way to post Lila's happiness at being able to enjoy being outside on the internet so you all could share in it and feel good about it. I hope that you will a little bit anyway. May peace be with you all.

Keeping Up

We got home Sunday night which was wonderful. We are exhausted and worn out and exhilerated and blessed. Lila is doing terrificly well. She is running around and breathing well. She got a cold and we managed it. I am not exaggerating when I say that this trip changed her life. When we left she could not run around without huffing and puffing and stopping. She is running and playing and her lungs are not slowing her down a bit. We got home and Samantha said, "Let's go pick tomatoes and let's run!" Lila said, "Wait! I can't run...oh, I forgot, yes I can!!!" And they took off. We've been watching her closely but she is doing so so well.

I am probably too tired to write down all of the things we took away from the hospital but I am going to start at least.

The biggest thing was a new medicine. This is a combination inhaled steroid and long acting bronchodialator. They don't usually give this to kids younger than five, but the concerns over that were far fewer than the concerns of her constantly being on oral steroids. This medicine is working wonders. The inhaled steroid is better tailored to her type of asthma and she is getting stronger everyday.

We learned another important thing about how we give her her medicine. It's logical but no doctor ever talked to us about it and we just never thought of it. When she is sick and her airways are inflamed is when she needs the inhaled steroids the most to calm the inflammation and make her able to breathe again. It is also, however, when she is least able to get the medicine where it needs to go. Her lungs and airways are already tight so she can't get as much in, so the inflammation gets worse, which means she gets even less in and on and on til she can't breathe. They have taught us to take her peak flow (to see how her breathing is) and if it's low, she gets a breathing treatment to open her up so that the medicine can get in and do it's job. It's simple but makes a great deal of sense. When she was at her most sick and needing the medicine the most, she was getting almost none. This really helped with this last cold she had that she fought off - the first one in 18 months that didn't send her to the hospital. Amazing.

That's maybe a third of the main things we took away. I'll write more tomorrow or the next day. We are so grateful to be home and so grateful for all the prayers that carried us to Denver and back. Words can't express. I have a feeling in me, too deep for mere gratitude, for all of you who made it possible for us to go, who prayed, who called, who wrote. We don't yet know the final bill and if we will have enough to pay it, but it was worth it. Watching my little girl run around, seeing her joy in being outside, her wonder at being able to do it, I would pay anything, do anything. Thank you all so incredibly much. God has touched our lives through all of you.

I will share more soon. Blessings and peace to you all.

Sorry it's been so long since my last update. I've been having technology issues. We did get to leave Denver Saturday morning after going to the hospital for a last check. We have been so fortunate and blessed. I will write when we get home tomorrow.

Homestretch

Yesterday was more recovering. We got some results back. The cell balance between eosinophils and nutraphils (yeah, look how smart we are now) in her lungs which control different types of asthma, looked good. The docs say that's the new medicine she's on and that that's what they hoped to find. The other important test about whether there are lipid laden macrophages (see? we're learning big words) will be a couple of days. That will tell us to what extent she has been aspirating food and stomach contents. Also we are waiting to see if anything grows in the cultures from the tissues they took.

Yesterday she did some more breathing tests and a bit of running around. She really is doing remarkably better. She is starting to get a little cold and the doctors say that will be the test. She hasn't had a cold in 18 months that hasn't sent her to the hospital. But she is SO much better. And we have so much better tools to tell when she is beginning to go down hill. This has been life changing for us.

Today we do a swallow study. We know severe reflux is perhaps the biggest puzzle piece to her asthma but there is concern that she is aspirating from the top end too and that her swallow coordination is poor. This will tell us that and if that is the case there are things we can do.

And.....the docs say tomorrow can be Lila's last day!!!!! That means, if all goes well, we will be home SUNDAY!!! We are so ready. This has blessed us in so many ways but we all want home. I told Lila and Samantha today that we would be home Sunday and what the first things they would do would be. Here are there answers in the order they were received. Lila: "I'm going to get out of the car and run all around like crazy because I can now!" Samantha: "I am going to run around and hug our chickens and let our dogs be crazy with me." Lila: "I'm going to go in and kiss all my toys!" We are all ready.

Speaking of toys...yesterday a woman who we didn't know somehow tracked us down through the newspaper article that Lila was in and brought two bags full of toys for the girls. The kindness of stangers amazes me. And speaking of strangers, we miss our friends. I talked to several of our friends in the last few days, and got a wonderful email from another friend and I miss them. I am feeling really fortunate right now. Our life is going to be changed and our friends have stuck with us on this whole horrible journey. Thank you. And thank you to those who have never met us but who are sending prayers our way.

I will post what we find out today and then soon a whole kind of wrap up of all that we have found out. Thanks all.