Friday, March 27, 2009
I am not sure how I feel about the yesterday's bronch. We got some information I was not ready for, and all of my preconceived notions were thrown out the window.
I will start at the beginning, for the 80% of the non-medical people who read this (the other 20% just skip to the next paragraph.) Yesterday, Faith had a rigid bronchoscopy. In layman's terms, this meant they took her to the operating room, knocked her out with anaesthesia, and metal tube with a camera down her airway to check things out. Faith routinely receives flexible bronchs in the doctor's office, where they insert a soft, flexible camera down her airway. As you can infer, the rigid bronch offers a much more complex look at her airway. She has not had one of these for over a year.
We have not had much information on Faith's airway other than the comforting words, "it's complicated." Yesterday we learned that there is permanent damage caused by her many months spent intubated. It is still very swollen and yes, "complicated." In the past we were told that time and growth would reverse this. Faith's ENT noted how incredibly small her airway is (they could barely fit a size 3 ET tube down) and there is no way a child her size could breathe through it.
Yesterday, we were told that time is no longer significant, and the only way to fix her airway is by way of reconstructive surgery. We knew this was coming and is par for the course in the trach world. What we weren't prepared for was what came next. Faith would receive reconstructive surgery to repair her damaged airway, and they would take the trach out at the same time.
Ok, before you all freak out on me, need I remind you our child is still on a ventilator during sleeping hours (and when she is sick) so of course this would have have to come after she is stable off the vent.
It was shocking not only to hear that there is a possibility of the trach coming out, but the way it would be done. Everything I know went out the window. I know quite a few kiddos with trachs and the typical process for getting a trach out goes like this; child exhibits airway is stable by making noise and is usually giving a speaking valve which restricts some airflow through trach, having a leak (meaning air can pass through mouth/nose), moving down a trach size, and "capping," meaning a cap is placed over the trach so the child can practice breathing through their nose/mouth. Faith meets none of the above criteria. And she never will. Her airway is far to damaged to ever be able to breathe without reconstructive surgery. This means there will be no "practice" round. Decannulation is extremely scary, I cannot imagine doing it like this.
No need to get wrapped in it right now, because Faith is still ventilator dependent (for the most part). We've been talking about vent weaning for some time, and being ventless may help her sleep better.
After Faith is weaned she will need her tonsils and adenoids out, which once again is a given (the more space back there the better) so we have some hoops to jump through before any of the above is an option.
Thankfully, life with Faith has been status quo for some time. We've settled into this "special life" and however stressful it might be, have become quite comfortable in the world of raising a medically fragile child. Progress is good. Progress is the goal. But it also brings a flood- no, a blizzard of emotions. Like the wet and heavy spring snow that began to accumulate outside, I felt suffocated by this flurry of new information.
As Faith came out of recovery, we received word that highways were being shut down and schools were closing. In my five years of teaching I can count on one hand the number of times schools have been closed due to snow (with fingers to spare, it's been 3). And our district is on spring break. Go figure. Nevertheless, we made it home in one piece, and spent the rest of the day recovering from the emotional week in our cozy home.
Today the storm has passed. The sun is peeking through the clouds and has begun to melt away the placid drifts of snow. And somewhere beneath it all, the vegetation that has been dormant for some time, is ready to spring.
Tuesday, March 24, 2009
Pardon the terrible quality of these pics, I took them with my cellphone. Doesn't it look like she's about to jump out of an airplane? In this bottom picture, what does she have to keep her comfort? None other than her good ol' med. syringe.
I have coined a new phrase, PTSSD: Post-Traumatic-Sleep-Study-Disorder. Symptoms include blurred vision, lethargy, bags around the eyes, and that 5am migraine I am all too familiar with. Children who undergo PTSSD experience sticky heads, ripped out chunks of hair, and scratches all over their bodies where they fervently grabbed at the various leads throughout the night.
Drama aside, it all could have been a lot worse. It was a typical night for Faith, which these days means a plethora of things.
The sleep study was further complicated by an EEG to rule out the possibility of seizures (one of the many theories of why Faith is waking up so frequently). This meant even more leads covering her cranium. It took three adults to hold her down while the technician went about the monotonous task of placing electrodes on the screaming, kicking, toddler. While we were holding her down we noticed something remarkable; She wasn't turning blue! As little as a few months ago, if she were to get upset, her bronchial tubes would "shut down" and she would become cyanotic. The fact that she was having a fit and retaining her color was very encouraging!
Back to the sleep study....tired from the fight, Faith did actually "sleep" for the first few hours. Our definition of sleep is pretty skewed, for Faith never really falls into a deep sleep. She constantly twitches and breathes very shallow, frequently alarming the ventilator.
Right on time she awoke for her middle of the night rendezvous, to which the nurse came in and asked, "is she like this every night?"
To which I replied, "Y'up."
Her response, "Then when do YOU get your sleep?"
To this I could only say, "good question."
All in all it could have been a lot worse. It was what it was. Fortunately we are on spring break and I got to crawl into my bed and hibernate for a few hours this morning. When I emerged from my den, Papa Bear was bearing treats that could rouse the sleepiest of mammals; Lamar's donuts. Somewhere out there there has to be proven research that the only way to recover from one's PTSSD is by digesting lard-fried, chocolate covered dough, topped off with a fresh cup of coffee. Mmm'mmm good.
On an ending note I want to add how impressed I am with THE SLEEP TEAM (yes, I must now refer to them in all caps) at Children's (and no sarcasm here, I mean that wholeheartedly). This morning I got a call from the nurse practitioner who saw us on Friday. Like a carrot dangling in front of a rabbit's hole, our little white miracle pill was snatched away. As it turns out, the pill they prescribed is not well suited for children with breathing problems (they told us this on Friday and said wait to fill it, and thankfully we did). She said she saw the sleep study and wants us to see one of the sleep docs whose expertise is with pulmonary kiddos with sleeping probs. She didn't go into any specifics regarding the study (it takes a few days for the team to review it) but the fact that after glancing at it she wants us to meet with another specialist means that the objective of the sleep study was met.
I have to say that ever since our squeaky wheels started getting greased, the team at Children's has been extremely prompt and accommodating, and for that we are forever grateful.
I promise there are days ahead where every post I write is not going to be about sleep. Since it's pretty much ruling our lives right now so that's all I have to write about.
Thanks for all of the warm, fuzzy sleepy thoughts! We are encouraged and remain positive that happier, healthier days AND nights of sleep are on the horizon!
Jen & Brian
Monday, March 23, 2009
Every third week in March the teacher talk in our school building includes plans of trips to Baja and books lists to resume. When asked what the Remings would be doing this spring break, too tired to go into details, my reply was, "nothing." This is usually followed up by our colleagues' commenting on how nice it will be for us to rest and relax.
We can only dream.
First of all, our daughter has now turned into an official pill. They don't call it the terrible two's for nothing, but when your sensory system is out of whack, you can't communicate, and your body is constantly fighting infection (not mention sleep deprivation) the word terrible hardly defines it.
Faith's latest stint is pulling out her trach. *sigh* This no longer terrifies me as the thought of it once did, but I do get nervous thinking about it happening when we are not around. (Remind me to tell you a story of this happening about a month ago- we did have a scary event where the little trust I had in other people taking care of our daughter is now next to none.)
Nevertheless, we are getting help. As I wrote last week, we had a sleep study on the calendar which would result in an appointment with a much anticipated "sleep specialist."
After one too many TERRIBLE nights, we came to the conclusion that this insane situation we find ourselves in night after night cannot continue. We cannot keep having doctors telling us to "create sleep logs" or "to re-examine our sleep hygiene" (and no, that is not a made up word, and yes, I have had a doctor tell me those exact words).
So once again my dogmatic husband put his foot down, called Faith's doctor and two days later I was standing in a room face to face with someone from "The Sleep Team."
Yes, you heard that right my friends; THE. SLEEP. TEAM.
I am not even going to go into why this mysterious "Sleep Team" was not consulted MONTHS ago or why it took us being abrasive and pushy in order to get an appointment, because at at the end of the day we were there, and that's the closest we've ever gotten to alleviating this problem.
I won't bore you with the details of the appointment but when suggestions such as "maybe she needs white noise in the background" (to which my mom, who came along, replied, "yeah but don't you think the ventilator is loud enough?") or perhaps our nightly rituals are not conducive to Faith's healthy, yes here is that word again, "sleep hygiene," I was sure that all hope was lost and we reached yet another dead end.
And then something happened. Whether is be the desperate look in my eyes, and exhausting tone in my voice when I replied "so now what?" or the fact that while we are having this conversation keeping my child intact was like wrestling an alligator, the woman clad in white
realized that this is bigger then "sleep hygiene" or weighted blankets, that we needed help and yes, that help was the form of a little white pill.
OK, I know that this miracle pill might not be "The Answer" but it is an answer, and it's all we have right now.
So tonight is the sleep study. Thursday is the bronch.
And somewhere in between we hope is lots and lots of sleep!!!
Tuesday, March 10, 2009
What's the latest toy craze in our house? Baby dolls, puzzles? Nope.
Med. syringes. Well, at least she knows how to stick it out through a tough economy!
I wrote a part of this last Tuesday, but forgot to finish and publish it, so pardon the potpourri-ness (I just love making up words) of this post.
Since I know you are all anxiously awaiting to hear the outcome of last weekend (and no, I’m not being egocentric…just sarcastic.....OK maybe a little of both) I am pleased to report that we came out unscathed. Only one dog was in a “no-lick-collar" by the end of the weekend, so we are calling it a victory! Of course the shortest weekend of the year was also our least dramatic weekend we’ve had in months. Go figure.
Of course we are still dealing with the never ending sleeping issues (Faith's latest trend is being wide awake from 12-5am...last night this included a decannulation. Oh joy) we finally seem to be getting somewhere with Faith’s medical team.
For the past several months we’ve gotten the run-around on the sleep issue. Faith’s pediatrician from the special care clinic at Children’s wants pulmonary to handle it, but at pulmonary appointments they pawn it off on the special care clinic…you catch my drift.
Enter my husband (who hails from New York, meaning being pushy and direct is in his blood) and we finally have a sleep study on the calendar. Yes, the sleep study will be inconclusive and meaningless (our child doesn't sleep and that's without a bazillion electrodes on her head) But that’s not the point. We cannot see a sleep specialist (translation: get DRUGS!!!) until we’ve gone through the rigmarole of the sleep study. So…long story short we are starting (very slowly) to get somewhere.
As Brian gave me the report from the appointment he enthusiastically said, “Do you even know what 8 hours of sleep would do for our lives? I can’t even imagine the possibilities!” Nor can I, but we can only hope!!!
On another note……I had a least a half a dozen people come to me this week, commenting on how Faith looks so great “standing” in the recent picture I posted. Yes, Faith looks GREAT but the picture is a little deceiving. Faith is by no means standing independently. While she can stand and “walk” (aka cruise) while holding onto a stable surface, she has a lot of balance and coordination issues to do be able to do it on her own. NOT like it really matters. In fact, it doesn’t bother us at all, and I do feel a little silly for even bringing it up, but I guess I just wanted to make a point that pictures can give false impressions.
With that being said, Faith is making a lot of progress in other areas and amazes us everyday with her determination and perseverance!
Today my mom reminded me it was Friday the 13th, by saying, "good thing we are not superstitious.." to this my throat replied with another, "gulp."
It wasn't so much that it was the 13th....but once again it reminded me that another weekend has approached. Already we've had a lot of drama today (with our arch nemesis, the insurance company) but that's the kind of stuff that we deal with on a daily basis, so we are setting out for another victorious weekend. We even have plans to leave the house WITH Faith (GASP, CHOKE, COUGH).
I know, I know, we are living on the edge. Every time we do take Faith out (which is pretty much next to never) we are reminded of why we don't take her out. Weekend or not, I think we'll take our chances.
Hope you all have a fabulous out-and-about weekend yourselves!
PS: And no, today CANNOT be a bad day because another precious miracle came into the world 2 years ago today.... Happy Birthday Rissa-Roo!
Friday, March 6, 2009
I am posting on a Friday. I rarely post on Fridays. I am doing so because I am making a last ditch attempt to end a terrible streak of bad luck Fridays.
Last Summer, Faith's physical therapist jokingly chided that she cautiously stays away from our house on Fridays. Perplexed, I inquired why and she said because, "The Reming's have bad luck on Fridays.."
This week as the weekend approached so did the knot in my stomach. There is something about the weekends that just scare the bejesus out of us. Maybe it's because lately our weekends have been nothing short of disastrous. Be it Murphy's law, or a collision of cosmic events that are too common to be coincidental, everything seems to fall apart on the weekends.
So yesterday morning when I awoke to pink eye (yes, pink eye, I didn't think anyone over the age of 10 got pink eye, but maybe because I make a living by hanging out with people under 10, that rule doesn't apply)I knew it was time to go on the offensive.
I am declaring a weekend free of infirmity, break-down, and any other pandemonium that threatens to take us down.
As I write this I am feeling very William Wallace-esque (aka Braveheart) as I so un-solemnly (yes, I think I just made that word up) declare....
Sunday, March 1, 2009
As feared, the evil stomach bug came for the Reming clan. It took me out Friday night, and hit Brian while he was in the emergency room with Faith on Saturday. Faith has been slow to recover from her bout with what had to be none other than the stomach flu (trust us, we just experienced it, it's no doubt the flu). She is dehydrated (yes, even with a steady stream of Pedialyte), and extremely irritable and restless. Faith was "boarderline" on being admitted, but Brian had no choice but to bring her home, he was in no shape to take care of her at the hospital, nor was I.
Unfortunately, it looks like Faith's issues are beginning to become respiratory related. Work of breathing, yellow secretions and the usual winter fare...which can only mean some tough days ahead.
The really really crappy part of this situation was having to take care of Faith while being sick ourselves. When you are sick you just want to crawl up into a bawl and recover, but when you have a medically fragile child that requires skilled care, that responsibility falls on you.
Alright...well here's hoping the rest of March is more kinder, and gentler than this past Winter has been...we're due for a lamb!
Jen & CO.
PS: A HUGE thankful to all who helped us while we were incapacitated....my Uncle Paul who brought us ginger ale, etc....my brother Josh who escorted Brian and Faith to the ER Saturday night, and my mom who selflessly entered our viral-infected home and came to our aid.