"Child Be Still..."

Life has finally slowed down just a bit. My head, my worries, my fears, my stress has not slowed down at all. Yesterday was our first day home without doctors or hospitals, but it was crazy. We had a scaled down birthday party for Samantha who will be six on Tuesday. Our friends David, Arwen, and Phoebe came. They were fresh air after a stagnant month. They brought love, a reminder of what's important, advice and hope for the future, and real care. Good friends are a gift and we are lucky that they are in our life. I was so tired, I'm not even sure what all we talked about but their presence was a balm on what has been a painful, isolated life lately.

So Lila has been back and forth and up and down. She came home on Wednesday, but was not doing very well. There was much consultation between us and the Denver doctors and our doctor. The Denver docs suggested several things since she was getting worse again. Thursday morning we spent the morning at our doctor who confirmed she was getting worse again. She sent us to the hospital for a sinus CT and chest xray. On the way home from that, Lila passed out. So back to the ER. While we were there, they were able to get the results of her earlier tests. She definitely had bad sinuses which were another explanation, another piece of the puzzle for why she is struggling to breathe. We got to go home but spent most of Friday at the doctor being evaluated to make sure we could stay home. I feel like she is a little better yesterday and today. Hopefully the trend continues.

It's so rough on us all. It's been a month yesterday since Lila got the flu and everything just crashed. Should it be this hard? Are we doing this wrong or poorly? I don't know.

This visit, Lila really struggled. She was yelling at doctors and nurses and resisting her breathing treatments. I felt pressure to keep her calm, but I certainly didn't blame her. How does a three year old process this all? Samantha has been so on edge since we've been home. Crying and emotional over everything. I can't really blame her. How does a six year old process all of this? And I am so tired. More tired than I feel like I should be. We're home and I've had three nights of mostly decent sleep. I've had good meals. So why am I still exhausted? Why does my stomach still feel like it's in knots?

I am so ready for routine and so scared to hope for it. How does one live life with these unknowns? I can't settle into routine until we recover and until I start to believe that this time is over.

I'm spinning. I'm listening for that still, small voice to come to me saying, "child, be still." If I could settle long enough, maybe I would hear it.

Wordless

"I Need Peace of Mind.."

"I need peace of mind and a hopeful heart

to lose this rage and move out of the dark

I ain't looking for rainbows or shooting stars

Just some peace of mind and a hopeful heart..."

That's a song by Mindy Smith that I've been listening to through this long night. Yesterday was the day that Lila went back in. And she went back in with a bang. She was maybe in worse shape than I've ever seen her. They did two hour long breathing treatments and then put her on a continuous breathing treatment for five hours after that. She got oxygen. She was on a magnesium drip through her IV. She was pretty bad. It was scary and overwhelming.

I'm reading those words and they somehow don't do the experience justice, but I have no others.

The good news is that with all of those heavy duty things they were throwing at her lungs, she seemed to improve very quickly. Now the question is how long to keep her in the hospital. I hate it here. I want to feel grateful that I have this great place to bring my child for help, but I'm just so tired of it.

We have now been living in hospital, sick child world for three weeks today. We have had some days out of the hospital but they've been full of oxygen monitoring, breathing treatments, peak flows, and doctor appointments. I feel like normal life has once again been tsunami-ed away by lung problems. I've had to quit my job and my life feels like it's a mess again. And I can't fix it when Lila's health has to be the focus.

I sound whiny even to myself. We have been given so much. We have had a reprieve from all this. We have been given better tools to help Lila. There is so much to be grateful for and I know it and I almost always feel it.

But...sometimes I am unspeakably lonely. Walking this journey is a solitary thing. Sitting here all night watching her breathe, watching the monitors. Trying to work with the doctors, keeping Lila calm and getting her to cooperate.

I am sad and tired. I seem to always be when we are here. I will wait for another day. Wait for Lila to get better. Wait to feel not so alone. Wait to feel gratitude wash over me like rain, cleaning away all the fear, anger, frustration, grief, and loneliness. It will. I'll just wait for it.

"I need peace of mind..."

The Waiting Is the Hardest Part...

Hospital at Home

I'm puzzled. For two days, Lila has slowly been getting worse. Her numbers are slowly going down. I could probably take her to the hospital now. She doesn't really need it yet but having seen this show before, I would put money down that we will go back in the next day or two.

What I don't understand is why this makes me so crazy. I feel like all I am doing is sitting around waiting for Lila to get sick enough to go in. Oh, I'm still doing dishes and playing with Sam and taking care of odds and ends but there's this cloud over me. It's like I can't start anything; I feel unfocused. And the most confusing thing is I am almost...eager to go. Like if we have to do it, let's just get it done and over instead of this interminable waiting. What I want is her to be healthy but if she's not going to be then let's get it done.

I have a farm to run and a 6th birthday party to plan and a house to get in order and a job to look for - and it feels like I can't really sink my teeth into any of that while I am waiting and checking and watching.

It sounds whiny and pessimistic, doesn't it? Maybe things will turn around and we will avoid the dreaded hospital. And we aren't there now, so why not embrace being at home even if it might end soon? I just feel in between, neither fully here nor there.

But. We will continue to muddle through and do the best we can. We continue to covet and be grateful for all your prayers.

I Love National Jewish Hospital

We've been home from the hospital for about a week. During that time, Lila was getting better and better until Tuesday. On Tuesday she started trending downhill with her peak flow numbers, her energy level, and her oxygen levels. I think that she has gotten another virus on top of flu recovery. Right now we are having hospital at home. Minimal activity, every three hour treatments round the clock, and every two hour or so oxygen monitoring. She also had a chest xray yesterday and daily doctor visits.

One of the most challenging things from the beginning with Lila and still now is that there is such a lack of consistency with doctors and their opinions. We have our wonderful and trusted primary care doctor but she is only in the office three days a week and Lila needs to be seen more than that sometimes (like right now!). The other doctors in the office are not as familiar with her situation. I've been told by a doctor there that he "didn't believe in peak flow meters." Another doctor there claimed right up front to feel out of his league with Lila and all her issues. (Which I totally understand!!) Another doctor in the practice claimed to think that Lila just needs to be on oral steroids all the time. All these opinions are confusing and sometimes conflicting.

At the hospital we always have different doctors. Different takes, different thoughts.

So this week I have talked to the nurses and doctors at National Jewish Hospital in Denver three times. I talked to them twice while Lila was in the hospital as well. I can't tell you how helpful it is to hear opinions from people whom I trust, who have helped Lila so much already. They cut through all the different opinions and help me know what I need to advocate for. "No, Lila does not need to be on oral steroids again yet." "Yes, peak flows are really helpful for us in knowing how she's doing." "Yes, we can try hospital at home for a day or two to see if she bounces back." It's just a great resource with tremendous expertise and they know her and they know us. One more reason that I am glad that we went. It has made dealing with her conditions so much better.

I told a friend the other day that I have such sadness that so much has been taken away from us with Lila's sicknesses, but I feel like we have been given so much too because of it. "Which is it?" I asked this good and wise friend. She said, "well, it's both of course." And she said that and it hit me like I couldn't believe I hadn't thought of that. They are both true and so sometimes I grieve for what we have lost and are losing and sometimes I am full of gratitude for what we have received. They are both authentic and valid places to be. That's a nice thing to realize.