the Princess of the PICU

Well, we're here and settled in. Evelyn has watched a Tinkerbell movie and is just starting Beauty and the Beast, she's had quite a few visitors (doctors, nurses and the like) and is looking cozy in her fancy hospital gown and blankets. We still don't have a time for the surgery tomorrow, but we should know sometime this afternoon - and I will put up a post immediately after she goes back for the operation.

One of our medical visitors today was Lauren, a Child Life Specialist here at CHOA. She came by to talk with Evelyn about the surgery tomorrow; explaining each step of the process (from Evelyn's perspective) and showing her pictures of where she will go and what will happen. Then, it was time for Minnie Mouse to get a Trach. The surgery was successful, I'm pleased to say, and Minnie is breathing SO much better! :) She already has a g-tube and a pulse-oximeter, so this will just complete things. It was actually nice to see/touch/examine a trach in advance. I've known children and adults who have them, but have never touched one before. It is made of a soft but sturdy plastic, and there are fleece-like 'ties' that fasten around the neck to keep it securely in place. There is also an internal 'cuff' that keeps it from wiggling or falling out, but the ties are an extra security. We fully intend to have ties that coordinate with Evelyn's outfits. :)

Daniel and I will both be here until early evening and then I'll head to CC and Pop's house to spend some time with Owen. Tomorrow Daniel and I will both be here all day for the surgery and post-op, etc. Daniel will probably sleep at his parents house with Owen tomorrow night, so we can each sleep in a real bed occasionally. Evelyn looks a little rough with the bi-pap mask on, but she really is doing very well, and enjoyed the visit from Child Life. She is old enough now to really understand that this surgery will help her, and while she may not have a full understanding of everything recovery will entail, she knows that we always tell her what is coming next, and trusts us to take care of things.

Please continue to pray for Evelyn and our family (I know you will!) as well as the doctors, and especially the surgeon and anesthetist. Everything is in God's hands - and for that reason we can rest easy.

Good day!

Today was a good day. Evelyn woke up smiling, and though her fatigue and overall situation haven't changed, when she's happy its pretty much impossible to not feel more optimistic. We went down to Scottish Rite late this afternoon to see the ENT (kind of like a pre-op, though technically just an office visit). As it happens, there is an opening this Friday - so Evs will be admitted to the hospital tomorrow, likely early afternoon, for surgery Friday. Our surgeon did seem a little more optimistic about the length of the hospital stay, so we're hoping we really can keep it under 14 days.

This even earlier surgery resolves two things:

1. We've been nervous about Evelyn continuing to fatigue, and how her breathing might be affected if she needs her seizure rescue meds. Not so worried knowing we'll be in the hospital in less than 24 hours.

2. Get it over with already! Knowing that Evelyn needs a trach, and feeling good about that decision, we are collectively ready to move through the waiting, surgery and early recovery, and get on with Evs feeling better and us feeling comfortable with her new accessory. :)

All of this is a big deal, even for we seasoned parents of a medically fragile child, but life really is good. There is a plan in place, the timing feels right (and safe) to us, and we can easily tell both of our children that they will, throughout these next few weeks, ALWAYS be with people who love them very much and whom they know very well. That requires a huge thank-you in advance to our extended family and close friends here in town - you guys are awesome. I am also, believe it or not, so very grateful that this is not our first hospital stay. We know so many little things that will make this easier for Evelyn and for us; from the library to the Child Life resources to the fact that the only drinkable coffee is at the coffee shop. :) With a longer stay lined up, just knowing how it all works will make things so very much easier.

With respect to visitors, I think mid-week next week will be a good starting point for visitors. Evelyn will be sedated for 3-4 days post surgery so that the site can heal without interference (from wiggly little girls, etc) so she won't know you came by until she is more awake, probably around Tuesday-ish. I will keep writing a daily update, and on Friday I will post when she goes back for surgery, and as soon as we know she's finished and doing well.

I am hoping to find someone to spend a good chunk of time with Evelyn one day next week, and one day the week after so that while Daniel is at work I can spend some time with Owen during the day. If you know Evelyn well (used to talking with her and reading books, movies and such) and are free during a weekday from roughly 8-12 or 1-5ish please let me know. 'CC' (Daniel's mom) and Owen have a wonderful repor, so he is really going to enjoy being with her, but I know that he senses that things are different, so Daniel and I want to be sure to give him some quality time (in addition to dinner/bedtime - one of us will be with him for that every night).

Love,
Kim

Surgery is Scheduled

Today has been a pretty up and down - for us and for Evelyn. She woke up this morning with a big smile and looking better than I've seen her in a few days. She wanted to get in her wheelchair, roll around the house and read some stories. So she did. :) After about twenty minutes, the telltale yucky breathing pattern returned, and though she hung in there for a while, ultimately it was time for the next breathing treatment. Following her treatment she chose to go back on her bi-pap, which is a pretty clear indicator of how tired she is. She was largely on the bi-pap for the rest of the day. She continues to be tired but stable, and of course, very adorable.

I think I was on the phone literally all day long, and have yet to finish all the phone calls I need to make, but it was all productive. Most importantly was the discussion with Evelyn's pulmonologist, who was in full agreement with my assessment and feeling of urgency regarding the need for a trach placement ASAP. He spoke with the ENT (who will actually do the surgery) and they both feel that other than a bronchoscopy (sp) during the surgery they will not do any of the typical preliminary tests done prior to getting a trach. This is simply because Evelyn's issues are 'classic' and it really is a no-brainer that this is the right decision.

Our surgery is scheduled for Tuesday, March 13th and 12:30pm EST at Children's Healthcare of Atlanta at Scottish Rite. Evelyn will be admitted to the PICU on Monday, March 12th and will return to PICU post-surgery. After a few days she will move to the TICU which is a good bit cozier, but has the same level of care as the other ICUs. At a minimum, we can expect a two week stay, primarily due to training and equipment adjustments. They think 4 weeks would be a maximum length of stay, so I'm estimating 3 weeks and hoping we go home in just under 2.

Tomorrow (Wednesday) we have an appointment with the ENT to do all the pre-surgery stuff and give him an opportunity to really observe/examine Evelyn while she's not anesthetized. To be honest, I think there is a decent chance that after seeing her tomorrow he's going to want her admitted right away. While she is stable, she doesn't look great to me, and I'm not opposed to going in tomorrow (though I really hope if we're admitted early, the surgery will be done this week ).

It has been over two years since Evelyn has had a major health change, a lengthy hospital stay, or has been this 'sick'. It has also all happened really quickly, over the last three weeks. For these reasons, it has definitely been a stressful time for us - but we're doing well, and we continue to appreciate everything we have to be thankful for. Including all of you.

We've been inundated with offers of prayers, kind words, meals, etc - and thank you! I am just not going to be able to respond to everyone individually right now, but please know that we appreciate your support, especially your prayers. We know that even in the midst of all of this, we are so lucky - we have love, family, faith, a secure home, and so much support. If you want to visit, or need to connect with us in person please call or send me a text message. I will try to respond to emails, but some are going to get lost in the shuffle.

Thanks again!

PS: Owen is in his crib (should've been asleep 30 mins ago) clapping. Earlier today he announced he was going to tickle Pooh - and he proceeded to tickle his stuffed animal relentlessly. such a mess. :)

and a little about our family

So, many of you are not that familiar with Daniel and I personally, or we've only met recently. I just wanted to say, first and foremost, thank you for loving our family (or our daughter in particular) enough to even read all these ramblings. There is strength in numbers, and your thoughts, prayers and interest are so helpful to us and to Evelyn.

Also, we love our kids. Evelyn and Owen are so important to Daniel and I, and though Evelyn's life looks very different than Owen's, we treasure them both equally. We will always make decisions for Evelyn (particularly medical ones) with the question of 'quality of life' just as high as 'fixing a problem' or 'treating a symptom'. Evelyn has a great spirit, and a true intelligence, and we feel it is important to honor her as a person when we make difficult decisions for her.

Also, we are an open book. We are SO not perfect. We try hard, but sometimes we don't - there are definitely dust bunnies in the corners of my house, and always at least one load of laundry that needs folding. But we, as a family, love each other very much - and we care about and respect each of you enough to want you to ASK any question you might have, without fear of saying the wrong thing or stumbling over a delicate topic. The world of special needs is foreign to some people - it was to us before Evelyn was born - but we really believe that if you have an interest in our family or our daughter, we want to help you feel comfortable around her and us. So please, ask away, come visit, etc - and if something about Evelyn's situation is hard for you, we understand that too.

Also, that's enough blogging for one night. :) If you made through all this, there must not be much on tv tonight. :)

Weary but Working

So that's Rocky, our old, indulgent pound puppy. He's got a little bit of doggy dementia, and his joints are getting creaky, so I guess he's earned a little chair-sitting.

That's how Evelyn and I are feeling today. Tired. Evelyn uses a bi-pap machine at night (google it if needed) to give her nice deep breaths and a restful sleep. Well, she was so lethargic today that we and her pulmonologist felt it'd be best to keep her on it for the majority of the day. So we did. And she appreciated that; though her numbers (meaning oxygen saturation and heart rate) have been consistently good, she just looks worn out. She looks like she's working harder to breathe when she's not on her bi-pap, and I just don't have a great feeling about her sustaining this level of lethargy for much longer. So, first thing this morning I called pulmonology and the ENT to push for an earlier follow up and to get the ball rolling with the trach discussion. Pulmo was very helpful, but unfortunately nothing much happened all afternoon. As I realized we weren't getting the much desired call to schedule an ENT appointment (and they're the ones that lead the way where trachs are concerned) I called them, again, and left a message, again. No response. So, as soon as we got past business hours, I decided to be sneaky and call the on-call pulmonologist to get advice on what more, if anything, we could do for Evelyn. My hope was that whoever was on call would be nice and I'd get the whole story out, and get some action on our behalf.

Well, the doc was awesome. Confirmed that I'm not overreacting with regard to my concern for Evelyn's current health - basically she doesn't have much reserve left, so we DO need to act fast. He said he'd talk with our pulmo first thing in the morning - but 30 minutes later he called back and had already spoken with him. SO, our pulmo will be speaking personally to our ENT (who to this point probably doesn't have a clue about everything that's happening) in the morning, and we will likely have a direct admit to the hospital to place a trach. I expect we'll go in to the hospital this week, possibly as early as tomorrow.

Don't get me wrong, I'm not excited about this. The surgery is, well, surgery, and the recovery stay is a minimum of a week. It is going to be tough - Owen will be with his CC (grandma) who he adores, Daniel will be working days and at the hospital most nights, and I'll split between the hospital with Evs during the day and Owen at night. I'm glad things like this don't happen too often, because it isn't fun. The truth is though, that I'd go through it all twice, and Evelyn would too, if it meant she'd get some relief and energy. And she will, as long as things go smoothly.

I've been a little disappointed these last few days by the lack of perspective or compassion shown by a few people we know, but that's inevitable. We feel so much love, and know so many prayers are being said; and that makes all the difference. It can be lonely and isolating in the hospital, where time stops - yet the world keeps moving - but I am so thankful for all of you - even when it's just a 'like' on facebook - because it means Evelyn was thought of, once again, with love - often by someone she's never met. Some people criticize the digital age because they fear it limits face-to-face contact, and I don't disagree. But when face-to-face isn't practical, or even feasible, it gives us another community of people to walk through life with. Thanks for walking with us.

Ten Thousand Reasons

I would consider today to be our first 'observation day' with respect to Evelyn's breathing issues - in preparation for our follow up with pulmonology in a couple weeks. The last couple Sundays we've been in church have been particularly rough for Evelyn - or maybe just more obvious for Daniel and I, sitting with her in the relative quiet of church, noticing how much she's struggling. While we could see that today her breathing was less noisy, we could also see that it was just as labored as it was a week ago.

It just isn't easy to watch your child struggle, in big ways or small ones, and so I find myself slipping in and out of good and bad moods. For that reason, the sermon today and some of the music was particularly poignant. I don't generally write or talk a ton about my faith or the bible, I guess it just isn't my nature to be overly vocal about it, but I feel like there are so many parallels that they bear mentioning. So often we feel imprisoned - by our desires, by our work, by the demands others make of us - or in Evelyn's case, I imagine she feels somewhat imprisoned by her body and its limitations. We've been studying Philippians and though Paul is literally IN prison, he says that he is free. The interesting point today was that though he wasn't free FROM his jail, he was free FOR others.

If there is one thing Evelyn has shown me over the last (nearly) five years, it is grace. Though she may be weighed down and even imprisoned by her many limitations, she is free for grace - and has been a path to grace for so many. There was a hymn sung today that discusses the 'Ten Thousand Reasons' (and more) that we have to praise the Lord. Well, as we were watching Evelyn closely, and the realization that her breathing really hasn't improved was sinking in, hearing those words was so meaningful. Every single day, no matter what comes, we have countless reasons to be thankful, grateful and joyous.

That doesn't mean we handle all this craziness perfectly; it just means that sometimes the right words (or sermon) come at the right time. We all face struggles in our lives. I can honestly say that there is no one I know who hasn't faced or is facing challenges in their lives. Because a lot of our challenges center around Aicardi Syndrome they may look different than the struggles you face - but we all have a choice about how to handle them. We can become worn down and embittered by the 'cruel hand life has dealt' or we can look for the ten thousand reasons we have to be grateful. Sometimes we have to make that choice over and over again, moment by moment - but it is definitely a choice worth making.

Hello again!

Well, it has been nearly two years since our last blog post, but for many reasons it seems high-time to begin posting again on a regular basis.

For starters, Evelyn's little brother Owen is now 2 1/2, and very good at it. :) Evelyn will be FIVE in a couple months - which is just crazy - and Daniel and I will be another year older soon as well. In most respects, Evelyn has had a great couple of years. She has been in school, wowing her teachers and therapists with her knowledge (and fashion sense!) and continues to be the such a sweet, happy little girl. Since the winter of 2010 we've managed to avoid any hospital-worthy respiratory issues, though her seizures have caused some trouble from time to time.

Which brings us to now, March 2012. Over the last few months we've noticed on occasion that Evelyn will slip into a very labored breathing pattern - lots of noisy snorting, chest heaving, etc. She then resolves the issue on her own and carries on with her day. Typically these episodes don't impact her oxygen saturation, but since they don't look or sound like much fun, we've been watchful of them. About three weeks ago Evelyn got a cold. It was just your average, run of the mill cold, and overall she handled herself well (no scary moments with oxygen dropping, no fevers, etc) but the cold just wouldn't go away. We started her on an antibiotic just in case, and as we were finishing it we came to realize that though the cold symptoms were gone, she was really struggling with her breathing. Anytime she got 'up' to do anything more than lounge and watch movies she would slip into the obstructive breathing pattern - and wasn't able to really recover from it without a breathing treatment or time on the bi-pap.

Well, that's no good. So, we took some video and went to see her pulmonologist. Though I had a litany of potential causes to discuss, as expected it comes down to muscle tone. Evelyn's muscle tone is very low (weak) in general, and that affects the muscles in her mouth, throat and airway as well. This means that the breathing difficulty is occuring because her tongue is ever so slightly slipping back and blocking her airway. Because of her weakness she has trouble pulling her tongue back 'up', which leads to saliva pooling in her mouth. When she finally recovers from the obstruction she then has to deal with swallowing an overload of saliva. Basically this issue is only resolved by placing a trach. We thought in general that Evs might need one someday, but now it seems fairly clear that that day will be sooner than later.

We will have a follow up appointment in two weeks to discuss how she's doing and what the plan will be going forward. We need to spend the next two weeks evaluating her breathing - how frequently is she obstructing? for how long? does it affect her o2 or heart rate? how is it resolved - position change, self correct, etc? The answers to these questions will give us a good idea of when the surgery will need to occur. My expectation is that it will be needed in the next couple of months, as I'm just not seeing her improve after this illness the way I'd expect.

In general we are so thankful that a trach is an option for Evelyn, and we're glad we've caught these issues before they became worse. Of course surgery is scary, and we worry for Evelyn - both for her health and that she will feel 'okay' about going through all of this. We want her to have a happy life, and to be as healthy as she can be. It does make us sad, because the need for a trach is yet another reminder of how medically fragile Evelyn is, and of how fleeting life is for us all. Having a trach is highly likely to greatly improve her quality of life, and will likely extend her life significantly as well - so that's why we feel its the right choice.

We hope the few people that still read this - or that start reading it - we be praying for our family and sending good thoughts our way.