God is Good All the Time.

Well, the surgery was 'textbook'. Evelyn did well throughout, and is now back in her room in the PICU resting; and she will be resting through Monday afternoon. The surgeon confirmed that her upper airway is very floppy, which is what was causing the obstructed breathing pattern. That is yet another reassurance that this was the right thing to do for Evelyn, and the right timing as well.

I am so thankful that the surgery went well, and though there are tough days ahead we are feeling blessed and relieved right now. Knowing so many people are praying for our family has given us so much strength we otherwise wouldn't have - so thank you.

I will be with Evelyn tonight at the hospital, and Daniel has headed to his parent's house to be with them and Owen. We are all going to focus on rest this weekend - as the real work begins Monday evening following the first trach change. At that point they will stop the sedation and we will all start really working on recovery and training.

If you want to make a quick visit this weekend we are open to that, but want to keep the room relatively quiet for Evs. I think Monday and Tuesday will likely be really busy days, but will keep updating daily. Evelyn looks good, and her breathing is very peaceful, which we haven't seen in a while. Once she's awake and properly fancy again I'll post pictures - though she does have a pretty flashy pink ponytail holder in right now. :)

Love to you all,
Kim

Quick Update

Well, after a quiet night, Evelyn has continued to rest all day - aided somewhat by a very mild sedative she was given during her PICC line placement this morning. A PICC line is, essentially, a more secure, longer lasting IV. Evelyn's little veins like to hide, and IVs like to fail rather quickly, and since policy is to maintain IV access throughout a hospital stay it makes sense to have a PICC line. Otherwise she would probably be getting poked every two or three days to replace her IVs.

For those of you who haven't seen through facebook, her surgery is firmly set for 3:30pm, which means she will leave the hospital room for the OR around 3pm. We can go back most of the way with her, and we expect she will probably be asleep through the whole process.

We feel good about our decision for her, and I feel so much more at peace now that we are in the hospital and heading toward the surgery.

Please continue to pray that God's will be done today for Evelyn and for us; our hope is that she has a successful operation with no complications. I will post again if the time of surgery changes; otherwise I will post after she returns from surgery - we will probably get to see her sometime between 6 and 7pm; though the surgery only takes about an hour, there is prep, recovery, moving back to her room in the PICU, getting settled there, and THEN they let us see her again.

:)
Kim

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.