Feeling Crabby?

Evelyn continued to do lots of sleeping today, but in the afternoon and early evening she actually woke up! In the picture here, she had *just* kind of a little bit opened her eyes and begun to consider what being really awake might feel like... so as a result she looks a bit, well, crabby. :)

Later in the evening, however, she was wide awake and answering questions and chose a movie to watch, enjoyed a good bath, and chose braids as her hairstyle (at her nurse's urging). When given some choices, Evelyn did not feel 'good' or 'bad', but she did feel 'funny' and 'weird'. She also said that her neck does not 'hurt'. So that's good. She has been awake probably five or six times since mid afternoon, usually for about twenty minutes at a time. She did manage to stay awake for about half of The Princess and the Frog, but she really likes Princess Tiana, so... :)

Evelyn is really a trooper - even though it obviously isn't fun to have surgery, be in the hospital, be all doped up for days, learn how to breathe through a new little hole in your neck, etc - she wasn't fussy when she woke up, she didn't seem scared, she just seemed a little grumpy. I personally would probably be a LOT more than grumpy. I continue to be so thankful that she is able to communicate; seeing her understand as much as she's able to the reasoning behind this surgery and hospital stay, and being able to exert small bits of control like choosing a movie - I know that those things make this experience much more bearable for her. There was a time when Daniel and I felt very skeptical about Evelyn's level of 'cognition' - a long time actually. I know that some reading this haven't really experienced Evelyn's talking firsthand, or have seen her on a bad day, or a sleepy day, and may doubt her ability. Well, all I can tell you is that there is no skepticism in our heads or hearts anymore. In large part, that is because we've seen her respond too well too many times to doubt her. The other factor is that far too many independent professionals have worked with her and seen the same things.

Now, don't get me wrong - I'm not saying Evelyn is a rocket scientist, and I don't have unrealistic or even specific long-term goals for her intellectually - I just know that right now, she is a very typical almost-five-year-old in her mind and in her heart. She knows her shapes, colors, letters and other preschool stuff; she knows how she's feeling and what she wants, she knows who all the people in her life are and how she feels about them, and she understands why she's in the hospital and what she needs to work on to go home.

I'm not sure why this post went in this direction, but I suspect it is because it is hard for people to believe without seeing. It seems easy for many to have faith in God, or in themselves - so why is it sometimes hard to have faith in a child? When someone we love seems not to 'get' Evelyn it hurts; and often it is just a matter of time and circumstance. Evelyn isn't 'in action' all day long every day - she's too medically complicated for that - but she's in there.

The idea of a lack of faith is applicable in so many situations where special needs are concerned. There is a big difference between being in denial and being realistically hopeful - and I believe that the moment I say something is impossible, it becomes unattainable for my child. I was talking to our nurse tonight, because she was asking about Evelyn - and I said that though I would be extremely (and pleasantly) surprised to see Evelyn walk someday, that I would absolutely not say that she never will. It would be a surprising accomplishment for her, given the many physical issues she faces - but if I believe that it will NEVER happen then it won't. We don't live our lives daydreaming about miracles, or imagining Evelyn to be someone she's not - we live very much in reality - watching her have seizures, struggle to breathe, spend way too much time in the hospital. We face the reality of a shortened lifespan, of continued trials and problems, both medical and otherwise, and we face the reality of looks, comments and a gross lack of understanding from the general public. The reality is that Evelyn is super-complicated, and that includes her brain, which is all mixed up structurally, but works just fine for thinking, thankyouverymuch.

I love you guys, and I know that parts of this post seem a little, well, crabby. This blog is intended to keep people informed about how Evelyn is doing day to day - when things are busy and when they're not - but it is also therapeutic for me, and a way to 'say to the world' what I wish Evelyn could say for herself. So, that being said, please don't take the crabbiness personally, because it probably isn't directed at you. :)

the waiting is the hardest part

We are SO ready to see Evelyn awake, and short of a few brief blinking episodes, it hasn't happened yet. This is okay, medically, but a little frustrating for all of us since we haven't seen her awake and really happy for at least a week, if not two or three.

Today was busy for Daniel and I, and quiet for Evelyn. Daniel zipped from the hospital to work, and at work from meeting to meeting, then back to the hospital. I woke up with Owen and helped him start his day, spent an hour in rain-delay traffic, gave Evelyn a sponge bath, had a nice visit with a friend, did some trach training (today was cpr with a trach!) had lunch with another friend who works at the hospital, then finally got some Evelyn cuddling in, in between feeding her and learning how the ventilator works and practicing some suctioning. After that I headed home to Pop and CCs house, where my absolutely wonderful mother-in-law fed Owen and me dinner. Then Owen and I took a walk, skyped Daniel and Evs, and he's just gone to bed. Tomorrow I will take Owen to school, then head to the hospital to stay for the day and night.

To be completely honest, this is already getting old, so I have great sympathy for those who've done marathon hospital stays routinely, or even semi-frequently. It is no fun. It is also interesting how much our mood depends upon the moods of our children. For better or worse when they're happy so are we, and when they're not - we're not either.

Today Evelyn was completely weaned off of the sedatives, but given she'd been on them for a few days, and given she's needed a little extra help due to seizure activity, she was still asleep all day today. On the upside, she is beginning to wean off of the ventilator, and the respiratory therapist described her progress as 'excellent' and 'beautiful'. As of 5pm when I left the hospital, the vent was giving her 10 breaths per minute and she was taking an additional 10 on her own. Since the ventilator measures such things, we also know that the breaths she is taking on her own are good strong ones, so that is great news.

I REALLY hope she is awake some tomorrow. Even if she's really grouchy, even if she keeps us hopping all day and night - I'm ready to interact with my daughter, and I'm sure she's ready to move beyond the twilight stage.

A healthy dose of perspective is always readily available at the hospital, and though I've resisted it today (being generally grouchy and self/evelyn-pitying) the truth is that you just can't walk through the hallways without feeling grateful. Grateful for your child's life, grateful for food to eat and a home, grateful for loving and supportive family and friends. Our daughter is surrounded by homemade blankets and special stuffed animals, wears fancy hospital gowns and bows in her hair, and I provide homemade organic food for her - even though she can't taste it - because I feel like its best for her and we can do that. When she needs or wants something, we do it; particularly if it is important for her development. There are families in the hospital who have to share one child's meal tray because there is no money for food. Children who treasure a donated blanket as if it is the most special thing they've ever been given - because it is. Children who are in the hospital because someone in their life, who should have been taking good care of them, hurt them instead. There are parents told every day that their child is going to heaven instead of coming home with them.

In light of these realities, I've typed myself into a much better mood - I'll take another sleepy day, because its another day with Evelyn, and its a step toward a better life for her.

As always, thanks for reading the lengthy ramblings, and for your continued prayers. Also, if you ever have extra money you don't have a place for (wouldn't that be nice! :) ) consider donating to Children's Healthcare of Atlanta at Scottish Rite http://www.choa.org/Support-Childrens/Give-to-Childrens . It is a very special place, doing amazing things for our daughter and so many others.

Love,
Kim

Yet another quiet day - for the most part.

Today was probably Evelyn's most restful day thus far. She didn't have many seizures, and just generally rested really peacefully. The only break from that quiet was the 'first trach change' - which went very well. The surgeon felt that the surgical site (aka stoma, aka hole in Evelyn's windpipe) looked just as it should, and the whole process of changing trachs took less than one minute total. After the trach change was over, Evelyn settled right down and went back to sleep. At that point we were officially able to start weaning the sedation, and we were put on the transfer list to move to the TICU. (a cozier section of the hospital)

Honestly, the more I learn the more similarities I see between a trach and a g-tube (feeding tube). Neither device is terribly complicated, and while both provide very valuable and in fact life saving services to my daughter - I think I could probably teach a second grader to properly care for both. Not that I would do that - but suffice it to say that we feel optimistic that we will pass our training.

I think because the trach is revealing itself to be such a simple device, it makes me a little sad that I viewed (and people with them) with such trepidation. It was never a hard decision to do for Evelyn what she needed; including getting a trach - but it was hard to imagine her having one, and the stares and lack of understanding that that would add on top of her wheelchair, feeding tube and obvious physical limitations.

I'm so glad that we've been blogging through all of this, because I don't want anyone that is a part of our life to feel like they're 'in the dark' about who Evelyn really is. I also don't want anyone to feel like they can't talk to us about this stuff, or that they can't ask questions. I thought trachs were scary, because I didn't understand how they worked or how to manage/care for them. They aren't scary to me anymore - though I respect the fact that your airway is a pretty critical area, and plan to ask as many questions and be as hands on as possible in the hospital so that I feel comfortable once we go home - I don't feel intimidated by trachs anymore. I hope that this blog will help eliminate some of the intimidation that some people feel when facing children or adults like Evelyn.

Tomorrow we will probably see a slightly dopey, slightly grumpy, slightly sleepy Evelyn. If she's occasionally also sneezy, bashful and happy then we will have covered most of the seven dwarves... :)

Another Quiet Day

Well, today was another quiet day for Evelyn, and for us. Daniel spent last night at the hospital, and I stayed at Pop and CC's house (Jerry and Claudia). After a really good night's sleep, Owen and I spent the morning and early afternoon playing, reading books, and wandering around outside. I think he was still worn out from his hike up Stone Mountain yesterday with Daniel - but we did lots of 'mommy-Owen' stuff, which was nice.

Evelyn is still very sedated, and as a result, very sedate. :) (that's geek humor.) She has been resting well all day, with the exception of a few breakthrough seizures here and there. Her heart rate and temperature have both fluctuated throughout the day - but remained within the normal range - so no one but Daniel and I have really even noticed. I think she's going to be ready to be awake soon and is planning some payback.

The plan for now is that the surgeon will come tomorrow (Monday) afternoon and do Evelyn's first Trach change. A trach, given that it goes into your airway, needs to stay nice and clean, so they are replaced about once a week. The little hole into the airway will actually heal such that it is a sealed 'tunnel' into the airway, and every week (at home) we will take her old trach out and put a new one in. After the surgeon does this first trach change tomorrow, it will be 'official' that the site has healed enough for Evelyn to move around and start really using her trach. So, tomorrow night/Tuesday morning they will start weaning the sedatives.... So, tomorrow night/Tuesday morning we will have a very ticked off little princess. :)

Don't worry, they will continue with pain medication, and we have all manner of fluffy pink and purple fun stuff to help her weather the storm - but it is tough waking up and having a sore neck and being in the hospital, and I expect the next few days to be the toughest. Of course, we are on hospital time, so the surgeon might show up as planned tomorrow afternoon, or he might stroll in at 5am tomorrow. You never know. :)

I will have another update tomorrow - and am planning new Evelyn pics once she's awake.

By the way - if anyone has any questions please feel free to ask - nothing is off limits, as long as it's tasteful. :)

Quiet day

Daniel here, taking over the blog for the day for Kim (who's now at my folks' house, hopefully catching-up on some sleep).

Today was a quiet day, as-anticipated.  I spent the night at my parents house, to spend some time with Owen, and Kim stayed at the hospital with Evs.  The night for Kim was not a great one, as there was a lot of "in-and-out" of the nurses overnight.  They described Evs aptly, I think, as "stable, but not quite balanced" - primarily, this is just due to trying to balance her blood-pressure and seizures.  Which one wouldn't THINK are directly interrelated, but here's how.  ;-)

In short, her blood-pressure has been a little low since surgery.  Perhaps not unremarkable for most, between coming out of surgery, as well as being on anesthetics/sedatives.  Most new trach patients are on paralytics - e.g. medically paralyzed - in addition to being sedated, for the first few days following surgery, just to help assure to keep them still for the site to heal.  For a number of factors, all of which I am not 100% certain - I believe relating to the fact that Evs is not the most mobile patient in the world anyway, and that perhaps adding the paralytics can increase low blood-pressure or muscle-tone issues, etc - the docs decided to forgo the paralytic.

However, Evelyn of course does have 1 movement down pat:  Her seizures.  So as the sedation was reduced slightly to try & help keep her blood-pressure from being so low - along with saline & dopamine, which were added to help up her blood-pressure, but also keep things "flushing out" (e.g. sedatives and her regular seizure meds) - she started having more seizures.  You know your seizures are pernicious if they persist through all manner of sedatives - it might make a good future anecdote when we get an suspicious eye-brow raise when we tell some new medical staff "her seizures are not controlled" - "No, really - she can be sedated by IV and have Versed drips, and still have seizures."

Anyway, they are largely milder than usual in intensity, and ordinarily ones that would be of no concern; however, the word of the day for today & the next two is "still".  So, they've been adding in Versed and Ativan PRN for seizures (but of course, too much Versed will lower your blood pressure...).  Up/down/back/forth - just a lot of little "toggling" of the various medicine "switches".  None of which, again, is terribly serious - just "balancing things", to use the example of our nurse.  On the positive side, they noted that Evs has been breating around/above the vent some, which is a good sign - e.g. while she's still getting lots of support from the vent right now, she is taking breaths over & above what the vent is supplying, which is "good".

So, that's the long of it.  A lot of sitting, some reading, a few good visits, but all-in-all, a quiet (though not necessarily restful) day.  Evelyn is "doing fine", all-considered.

Meanwhile, "back in the world", I took Owen for a hike up Stone Mountain, to try & enjoy the beautiful day some.  Not his first time there, but it was his first time up the rock, and I am very proud to say that he hiked it up AND down on his own two legs.  It did take a little prodding near the top, but he was a very big boy.  I think he also may have inadvertently shamed a few huffing-and-puffing ladies ("Well if that two-year-old can make it..."), but they still said he has beautiful eyes.  ;-)

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