TRACH LIFE THANKSGIVING UPDATE

Vivs has been well for over 10 weeks (a new record!) and that allowed us to travel to Stockton for all 6 weekends of hunting season, so Seth could hunt with my dad. Each week, when Vivs saw me start packing her medical equipment, she would start throwing things in her little backpack and shout"I'M READY!". Once she gets there...she immediately wants to see what new "things" Grandma found for her at the thrift store...maybe a new shirt, a book, toy, or even a SCOOTER! She bosses Grandma Viv around with a sense of urgency and excitement all weekend: "Grandma, LOOK!", "Grandma, play with me", "Grandma, take your clothes off" (when she wanted Grandma to get in the bathtub with her!)...then takes about 2 days to stop calling ME "Grandma". She'll say to me "GRANDMA!...wait, you're not Grandma". She loves the swing papa built her, the sand box and putting Grandma to sleep in her big soft guest bed after she administers the many medicines through the many different syringes that we keep in her crash cart that she loves to play with. Grandma Viv is never inconvenienced by her and includes her in everything she's doing. It's a wonder to watch. She doesn't have a selfish bone in her body. Seth and I were able to have some great date nights as I'm more comfortable leaving Vivs for longer periods of time when it's both of my parents together.

It took 6 weeks after Vivs last Aug. 1 surgery: part 2, to debulk upper airway tumors, before returning to "normal". It didn't help that she became sick 2x during recovery. The first time landed us in the hospital for 3 days, but the next time 2 weeks later, I refused to go to ER again and we gave her liquid steroids that we had for emergency use from our trip to MO. 3 days of steroids cleared her right up and kept us out of ER, and now we've been approved to have liquid steroids on hand to use "sparingly" in the future. Since the last hospital visit, we've added a 2x/day pulmicort treatment to reduce swelling, but not sure if that's why such a long wellness streak or if it's a waste of more of our time?...always hard to tell, so we keep doing it because we don't want to change anything when all is well! After her first year trached and doing NOTHING in fear of illness and her 2nd year trached spent going to every class I could find because I was going crazy, I've decided to simplify this year and only do Music Together class because it addresses so many areas, physical and emotional. I am focusing on enjoying more relaxed and unstructured play time and taking a break from always trying to "teach" her something through my previous schedule of daily lessons/therapy and just let things happen naturally. I had such a hard time doing this before because I was always trying to get her caught up on something I felt she might be behind in. I know better than most that simple play is the most valuable things that a kids can learn from, but that teacher part of me rises up all too often, so I try to spend a little time really teaching her something, then a little time just playing. I taught her how to draw music notes and now she's drawing them EVERYWHERE!

Since the last surgery, Vivs is better about BLOWING...something that most kids can do easily at a young age. We have worked a lot on it with VIvs for the last 2 years since it's so hard to get a good amount of air up through and out her mouth. She can blow bubbles through a straw now, but still working on producing bubbles through a bubble wand. Her speaking might be slightly stronger and less choppy and breathy as well, due the more open upper airway. I think it's also helped her to start "smelling" a bit? Many trached people say that they can't smell, unless they block their trach and sniff REALLY HARD (which Vivs can't do yet). We've tested Vivs to see what she can smell by putting strong odors under her nose, but we've never seen a reaction. The other day, after I cooked something fragrant...I heard her say "Oh, I smell something...I smell food.", then again a few days later when we walked into a restaurant.

Six weeks after that last Aug 1 surgery (Sept 15), she had a lung bronchoscopy to get the first look at what's going on BELOW her trach. It was the best hospital experience YET! She was easily sedated and put under (rare for her), it ONLY took an hour to kick her aggression, and WE WERE HOME BY LUNCH...ON THE SAME DAY...AND NOT ADMITTED FOR ONCE! We insisted on a HUGE steroid dose to keep her airway from swelling (something we always do with her now since we know that whole tumor chain swells, even when a small part is cut into). Because steroids can make one VERY HUNGRY....she ate 3 normal meals in a row before bed time that night!

This procedure was a team effort, with the ENT there just in case her airway collapsed AGAIN, pulmonologist doing scope to see severity of tracheomylasia and GI Dr. taking sample and placing esophagus probe in to monitor ph levels over next 24 hours. FINDINGS: More tracheomylasia (weak, floppy trachea) just past end of trach (which explains why we hit resistance when needing to catheter suction deeper), then more under left bronchi that is narrowed. They found a plug...a huge amount of secretions that they suctioned just passed the bronchus...probably always some there as she's always trying to get them up her narrow airway. The secretion culture results show no sign of pseudomonas (infection she's had a few times in the past), so we DON'T HAVE TO DO SEVERAL MONTHS OF INHALED ANTIOBIOTICS 2x DAY LIKE LAST YEAR! DO YOU KNOW WHAT THIS MEANS? It means 1 hour less of treatments that I have to work into our day and MORE PLAY TIME! I am elated...as last year was very taxing with this added treatment that we did EVERYDAY August-March. The GI results showed only slightly elevated levels at night when she was lying down, so we are finally clear to only give reflux meds as needed. This doesn't sound like a bid deal, but Vivs was putting up a huge fight about it 2x day and it was really wearing on me, so it's just one more stress I can strike! We talked about doing a future sleep study to see if she would benefit from sleeping with a cpap machine, but I'm putting that off as long as possible because I don't see a huge need for it and think she will vigorously fight it. If she WOULD wear it (on top of everything else she has to wear), it might help her open that narrowed bronchi better in order to clear secretions, especially when sick...but for now, it's an idea we'll keep in our back pocket. The last sleep study with her was one of the most miserable nights of my life, and I have A LOT TO COMPARE THAT TO, so I don't wish to relive that unless absolutely necessary.

Because of the airway collapsing found just under the end of her trach, a longer custom trach was ordered and we put that in 2 weeks ago. The hope is that this might help her to clear secretions better by stinting that area open, especially when she's lying down or sick. HOWEVER, after 5 days of difficulty, we had felt like she had enough "adjustment period" and we pulled it out and replaced her old size. For some reason, it agitated and stimulated her airway more, which produces even MORE secretions, especially when lying down. It caused her airway to be more turbulent and never clear. Her oxygen lowered and heart rate increased and she labored more to breath. She "rattled" all night. She went from needing a handful of suctions at night to needing 2-4 dozen as she couldn't seem to clear her airway. We rarely have to catheter suction during the day anymore, but that changed w/ this new longer trach. Seth and I even had to go back to splitting some nights as she needed so much care. It's taken her a week to get back to her "normal" and I don't think we'll try that again until she's older. We felt horrible for doing this to her when she was doing just fine and thought this would surely break her longest wellness streak, but she's held her own! It took a week for her oxygen and heart rate levels to return to normal.

In the last 6 months, Vivs has become fully conversational, but do you think I could get a video of it for my future trach-u-mentary? NO!...because whenever I start it, she says "I want to look" and starts walking toward me...so I've given up. She's still very unclear at times because of her tongue tumor. I've requested another speech re-evaluation this week as I want to start articulation therapy as soon as she qualifies. She's gotten into a trend of breaking one word into many signs...like porcupine. She'll say and sign "that's pork..that's u, that's pine"...even though it has only one sign...or "Noel", she'll try to sign "No", then "Well", even though I've told her it's the same sign as Christmas. I hear her do this a lot when she's alone and it's pretty funny. She'll somehow make one word signs into two or three, giving each syllable a sign. The other day, she told me that she was teaching ME sign language. Although I was pursuing more private tutoring, I decided to go the cheaper, more convenient route and purchase a highly recommended 20 DVD series titled Mastering ASL that will help me to continue our progress together over this next year. After she didn't talk and only used sign for 3 weeks after her last surgery, I was so grateful for it and only more determined to continue our fluency. When I speak to her now, I sign W/O speaking a lot to keep her challenged. She'll listen to my spoken words then quietly whisper to herself the words I only sign. I have a long way to go, myself, as I want to be more fluent and conversational, but that would only increase if I had deaf friends to hang out with a lot. I know there are meet ups we could join, but that's not as easy as it sounds, so for now, my goal is to keep adding to HER vocabulary as I learn more in order to keep her somewhat fluent to communicate at least with me, in case of another long period of not being able to speak. She's still constantly asks me how to sigs words that she doesn't know. Often if I don't know it and can't look it up, we just make something up according to our knowledge of other signs and educated guesses, which I think is why she's so good at making her OWN SIGNS UP! I'm also trying to get her to understand that many words have the same sign, a very abstract idea for her age. Because it's so ingrained in her from an early age to speak and sign together, she'll often have to STOP walking and let go of whatever she's pushing or pulling on a walk around the block, just to say and sign something if she's really excited about it...so it can take an hour or more to walk a short distance! We were so excited to recently receive the NEW SIGNING TIME CHRISTMAS DVD's in the mail, which teach A LOT of signs...highly recommended for adults too. It actually teaches the TRUE STORY of Christmas and is very touching! As soon as she saw the DVD's on the table, she said "I have idea. Let's have family movie night!"

Vivs seems to have the start of kyphosis which is the curving of the upper back due to how she has to position her head because she can't just look down easily because of the trach between her chin and neck, so needs to bend over more. This will be something we will have to keep an eye on. We only go to Physical Therapy now every once in a while to check in and address any of my concerns. The last visit was about how she needs more tip toe time to develop muscles to lift off of the ground for jumping/running, always needing more unassisted stair practice to build core and continued concern about her lack of stamina to play due to her working harder and faster to breath to get oxygen. I have noticed slow progress in all of these areas since the last visit 4 months ago.

At a recent farmers market, we met a man with a trach. Vivs just stood there and stared at him for a long time. It dawned on me that she's not used to seeing OTHERS with a trach, but just HERSELF. The other day, while watching Care Bears during a treatment, she said "Grumpy doesn't have a trach". The other day, while in the waiting area for the Dr, I heard a suction pump across the way. I stood up faster than lightning strikes to see where it was coming from. THAT SOUND IS MY LIFE! WHO ELSE IS DOING THIS AND HOW FAST CAN WE GET TO KNOW THEM AND BE BEST FRIENDS? We walked over to see who it was, and introduced ourselves. The pump wasn't for a trach, but for mouth suction for a little girl w/o any muscle tone. They seemed a little pre-occupied and not too interested in us, so we just left it at that. I have a lot of these experiences, trying to reach out to others w/ similar situations (as I rarely find them), but most don't seem to interested in connecting. She's been on a few of her first "Daddy Date Nights" where she loves to go to the pet store and toy store, then out to eat! The other week night after Seth got home from work and we both just flopped on the couch exhausted and started talking about our days, she says "I have idea. Let's go on date night!" She's also started something that we always do to her. In the morning or evening, she'll ask US "How your day?" or "Tell bout your night"...then she'll ACTUALLY sit and listen! She can almost put her HME (protector and secretion holder she wears on her trach) on herself and also hook herself up to the pulse ox when she gets into her crib. I think she's getting quite used to the regular deliver and management of medical equipment. The other day, after I opened a few boxes, but then went outside for a minute. She had dumped both boxes out on the floor and started taking everything out and organizing it, just like I do and sometimes let her do with me. I often wish I had a separate medical supply closet or even ROOM for this purpose! We thought she had gotten over the stress and emotion of hearing the piercing and shrieking cry of another baby or toddler crying, as she used to immediately clench up, hold on tightly to whatever she was holding and start crying herself. We assume it was because she can never cry this loudly (a nice perk of trach life!), but the other day, when a good neighbor friend was over and she started a long wail because her mom walked out, Vivs stared at her with concerned wide eyes, started slowly crushing the piece of cheese stick that was in her hand, and then began crying (well, hissing, really) dramatically. I've always wanted to catch one of these episodes on video to show her later in life, but have yet to be successful.

Lately I've realized that Seth doesn't even hear the suction pump anymore! It's become such a normal background noise. During a ride home from Stockton where Seth mentioned that I haven't had to suction her much, I replied "Oh, really? You haven't heard her coughing and the pump going on about every 8 minutes for the last hour?" He honestly didn't, which made me really mad (I like to be a matyr and have my hard work constantly recongized!), but he insisted that we were suctioning her less "overall", so the next day, I started tallying suctions again to prove to him that wasn't the case...we are simply more USED to it. My tallies were still between 75-100x/day. I know it's nothing to get angry about, but I think it's because I want him to realize that we are still doing an EXTREME amount of suctioning...probably the same feeling when I hear him say "Vivs is doing great" when someone asks about her...where I would probably NOT say that...but as always, he's much more positive and I'm much more negative. I also just LIKE to complain a lot, where I don't think I've EVER heard him complain about ANYTHING! Some people's personalities seem so much more "naturally" holy and more Godly!....while OTHERS OF US...ok, maybe just ME, constantly battle our inner nastiness!

One thing I HAVE adjusted to more is the wind turbine that our house is at night when all machines are in use. We can't even sleep w/o them now! I recently found seth napping in her room with all machines on! HILARIOUS! But I am still keenly aware of how often she needs suctioning...perhaps because I'm still always looking for patterns. I reach my tolerance level of coughs and suctioning often, especially during late afternoon or evening. I suction during everything I do. I often struggle with doing it with a servants heart. Often it really frustrates me that we can't leave her alone in time out or crying in bed, because crying causes her airway to tighten and then she's coughing her brains out and if we left her alone, she'd either drown herself as her HME fills up or secretions would get everywhere if her HME is off! I still get upset and sometimes will say "STOP COUGHING" or "Why are you coughing so much?", although I know it's something she can't control. It's just one of those things I can't keep in at times, especially if I have to take her somewhere. I still have total awareness and anxiety when she coughs in a new public place, because unless I can explain quickly to everyone (like I do before group classes and such), it makes people very uncomfortable because she sounds very sick. As much as I do it robotically, sometimes caught in a suction "time warp", I am still always baffled by the amount, where it's all coming from and why...what's environmental vs. tumor related? If she goes more than 20 or 30 minutes w/o needing it, I'm racking my brain trying to figure out cause and effect! She needs it most often when transitioning from vertical to horizontal, like first lying down to go to sleep. At night when she's falling asleep, she'll say "I need suctioning", but during the day if we say "Vivs, go suction, please", she'll respond "I can wait" and we have to really get on her to do it herself, so we still do most of it. I feel so sorry for her sometimes, always coughing during everything she's doing and has to stop so much to suction...what will her life be like if it doesn't decrease? However, from the sound of it, you'd think she never gets a break, but she'll have several times during the day where I haven't had to suction for almost a full hour or more, but then she's right back to needing it every few minutes....so random.

I feel like sometime in the last 6 months, I've fully embraced my stay at home role...AFTER 3 YEARS! I've cycled through a range of emotions and adjustments in that time. At first, my thoughts were "I can do so much more, I can affect so many more people, I can teach 700 kids and produce over 10 musical shows a year!"...but somewhere along the way, the RELIEF that I don't HAVE TO DO THAT finally set in and a gratefulness that I can be fully available to entertain and teach just ONE student. Along with that came the joy of embracing a more simple and less schedule life, then trying to let God work in me as I try to slow myself down and decompress from 35 years of a school calendar (since I was in Kindergarten!). In some ways, Vivs medical issues has made me feel like something big was happening to me, it was something that made our life unique...I think that's why I accepted and embraced it, knowing that it would be the thing that would start to change me...slow me down, save me from the rat race of work and mundane life. People always tell me that I will teach again some day...but now my reply is "I HOPE NOT!"

Something out of character happened to me 3 months ago, after it took Vivs several rough weeks to recover from the last surgery. Like a train coming to a slow but steady stop as it loses steam on the tracks, I suddenly had no energy left to care for myself and Vivs at the same time. After the last 2 1/2 years of the roller coaster we've been on and having to jump back into the groove of staying on top of everything after each episode w/ Vivs time and time again, I suddenly stopped caring about everything and started only doing the daily basics needed for survival. I suddenly had no more energy and diligence that was constantly required of me to keep up, which I was doing successfully before. In some ways, it felt like after giving and giving, the life was just sucked out of me...my energy, my drive, my ability to multitask was gone. There are so many benchmarks I want to reach by the time I'm 40 (THIS SUMMER!), but when I start to tackle them, it's clear that my focus always has to go back to Vivs, like the other night when I started my very 1st day of attempting to read the whole bible in a year....2 pages in, Vivs throws up in bed while Seth is on duty and he yells for help...we'll, there goes that most holy attempt! I want to learn to cook more healthy, exercise more, read more, keep my journaling up, start putting all of my videos over the last 3 years into a trach-u-mentary, and many other piddly things, but it's repeatedly made clear to me that I need to put Vivs medical care #1, her play/therapy #2 and then my domestic duties #3, and there's not room for much else. So all of a sudden, it was CLEAR to me that I needed to stop TRYING to attain these things, or maybe I just grew SICK of having to try over and over again unsuccessfully and it was just easier to give up for awhile! Maybe I was also jealous of friends who don't feel the need to be so "productive" and seem to enjoy life more than I do because they simply don't DO as much and I wanted to know what that felt like. I feel like my desire to do things and the ability to make goals has left me....the other day, Seth rattled off all sorts of things he'd like to do and learn and get better at....I couldn't respond with ANY...probably because my life is so day to day now. I used to have a mile long list of goals, but I kept feeling guilty and frustrated for not being able to reach them, so just gave up...a very freeing feeling, actually! I'm sure this is how a lot of parents feel, even w/o medical stresses. It's why you see moms that have totally let them selves go...they always look like they've just rolled out of bed...you know what I'm taking about! I've heard people say that they think it's sad...but I think it's sort of beautiful in a way...giving up everything about yourself and just letting it all go. If I have to have another shallow conversation about wearing the latest jeans or the endless plight to lose those extra pounds with someone, I just might throw up. The other day, having some time to myself, I tried to go shopping for some new shoes (an attempt to at least TRY to stay only 5 years behind in fashion!)...walked into a large shoe store where the music was so loud I couldn't even concentrate and I actually FELT my stress level go up. After trying on several pair, not feeling it and not wanting to spend that much on myself and feeling like I would just rather be doing something better w/ my time...I walked out. On the way home, I reflected on how my mom would NEVER buy ANYTHING for herself when I was a kid, but only for me. It wasn't until after I finished college and she retired that she would sometimes go shopping for herself!

When I reflected back on the last 3 years of medical craziness with Vivs, I realized that I've only had short recovery periods here and there and the frustration I was feeling was because I felt like I never have a long enough recovery period! In many ways, I feel like I can never recover...I can never get ENOUGH sleep, ENOUGH peace and quiet, ENOUGH of a "no sick" period. Because of these strange feeling I hadn't had before, I decided to try out a new life and give myself some grace and recovery time after Vivs finally recovered from her last illness and let myself do whatever the heck I wanted...eat whatever I wanted and as much as I wanted whenever I wanted, watch as much TV as I wanted for as long as I wanted, I totally stopped any healthy habits and exercise all together, let the paperwork and project pile up...and just did the necessary and the basic and let it be ENOUGH! I know this is how many people live, but for me it's extreme as I'm usually very regimented and disciplined, almost like an insane, mentally ill person, constantly scratching down my ideas, things to do, people to contact, things to try, things I want to add to my journal entries so I don't forget...pretty neurotic, I know! BUT THAT'S HOW THINGS GET DONE PEOPLE! You know the saying "If you want something down, ask a busy person!"

I suppose this is how depression begins with people...just giving up and letting all go to pot because one is "taking a break" from life or because one "deserves" it...but I'm not depressed, although the autumn darkness and cold surely plays mean tricks on my brain and motivation for sure which seems to often temporarily paralyze me and it surely does feel like depression but always seems to disappear after a little sleep, some vitamin D and the hope of a new day. I think I'm just trying to become that more slow, lazy person that I always marveled at and never understood in my past more "productive" life and swore I'd never become! HA! I always sort of hoped that having a child would do this to me as that sort of high energy lifestyle as well as my demanding career was wearing me out! Seth always tells me my life theme song should me that old Alabama tune "I'm in a hurry to get things done, Oh I rush and rush until life's no fun, All I really gotta do is live and die, But I'm in a hurry and don't know why". He's totally right. As much as I've really slowed down, I'm still pretty manic, one day feeling on top of things, the next so behind, one hour feeling great, the next, totally defeated, but this is the rawness of life letting the tide come and go and come again. Probably like most stay at home moms (I HOPE!), I'm a totally different person at morning that I am in the evening, as the demands of the day wear me down.

My 80 year old neighbor who visits me every week and often keeps me from going crazy with her pioneer woman stories...says all is forgiven and I have permission to do nothing with any alone time I get for the rest of my life after what we've been through, but I know better...it leads to bad habits, laziness and slothfulness and things just don't get done....so, as I've grown tired of pigging out, being SO LAZY and have experienced a bit more motivation lately, I'm trying to pick myself up and get going again, but just a little a time. I surely don't want to go back to who I was fully! That was too stressful! But it's who I am naturally, at my core, so I'm always going to have to fight to slow down and enjoy life more than others, I believe.

I am still overwhelmed with my desire to have another child, which seems to be increasing. There are so many reasons for this that are layered and complex. I've never just wanted to have one child, but more, so that there's more of a chance that one of them will take care of us when we're old! I don't want Vivs to be all alone in the world when we are gone. What if she's a trached spinster who never marries and has no children? Having another child would increase the chances of grandchildren. I grew up playing with all of my cousins, but if she has no siblings, there will be no cousins! Then there's the fear that something very serious will happen to her because of her issues and then we are left, all alone and too old to have any more children. Yet how can I reconcile having more children when I know...I KNOW that it will be much more difficult to care for Vivs and I will no longer be fully available to her. I told myself she would be my only one after walking past numerous ICU rooms where parents had to leave their older child to care for their younger one, often a whole day or even night...it broke my heart. I always pray that this 3rd year of trach life would be more stable, so that I would feel a little more comfortable with the idea of another child. If it's a desire of my heart, do I simply trust God and go for it, or be more practical about it, knowing that I can't be spread that thin? It wouldn't just be adding more chaos to my life, but Seth's and my mom's as well. Then I had another fear the other day...what if I don't just have another child...what if I have a BOY!?...and by a "BOY", I mean the typical rough and tumble boy who pushes all limits! Having an energetic boy after a docile girl can be quite traumatic! Just this thought puts me over the edge! I know...I'm REALLY OVERTHINKING ALL OF THIS, RIGHT? Well, the intensity deepens EVEN MORE when I remember that I am infertile and have to pay thousands to just try to have another child, then be able to get to many appointments for just one round of IVF. Before this, I would need to have another ultrasound to check for any endometrioma cysts, as I had to have one removed before our last IVF. I TOLD YOU it was layered and complex!

This Thanksgiving, I am grateful for a God who is always faithful to me even when I am not faithful to Him, a husband who has constant grace with my shortcomings and the rich friendships God has blessed me with...friendships that have gotten me through these last few challenging years, friendships that only come from years of investment and that will last a lifetime. HAPPY THANKSGIVING! (Don't worry, I didn't spend my whole Thanksgiving Day typing this out...it's something I work for weeks ...an hour here and there during night duty!)

SEPT 2014 TRACH LIFE W/ SUPER VIVS UPDATE:

Our E.N.T. just published Vivs case in the American Journal of Otolaryngology. We have a more extensive version of the article, but you can see part of it here: http://www.amjoto.com/article/S0196-0709(14)00103-3/abstract

This last month has been the roughest in awhile as Vivs hasn't been the same since surgery part 2 to debulk tumors in her upper airway. We went ahead with this 2nd part, basing it on the success of the 1st part, done in March, which Vivs recovered quickly from and seemed to have a little more speaking pressure and volume after. We also wanted to see if it would help her tolerate wearing her speaking cap, which makes her voice stronger and smoother. We are starting to regret doing part 2. She's had increased coughing, especially at night. However, her coughs are now more unproductive, taking several tries to clear, and then sometimes, suddenly, out of nowhere, w/o any warning, a huge cough that fills her whole HME so full that she yanks it off because she can't breathe.

Her energy is lower, laboring to breath and seems to work up a sweat easier now, from just moving around a bit. Her breathing is also very turbulent and forced on exhalation at times and even what sounds like "snoring" from her trach, but that would not be a good sign as our ENT thinks it could be turbulence from her narrowed bronchus. If I had any doubt before that she wasn't the same, it was confirmed this week at our Little Gym class, after taking a summer break, where she could barely do anything w/o tuckering out and laboring. It seemed like she'd lost all interest in anything active and that it was even making her mad and discouraged. It actually really scared me. Little Gym is an inner struggle for me because I get to see a good friend who takes her daughter as well, but if weeks like these continue, I'm going to have to give it up. It's not worth it if it's exposing her to germs that could make her sick and cripple her airway. Maybe I'm just pressing her too hard physically when I just need to realize it's amazing that she's even alive...who cares if she STILL can't run or jump yet.

 

So, with all of the weird things that we are noticing about her, we are "THINKING" (we are wrong lots of times!) that before surgery, she had more upper airway room than we thought and now there's none from swelling, so all air is forced through trach, where as before, some made it up through her nose and mouth, relieving a little pressure. We are hoping that this is just a much slower recovery from surgery, but we also fear a bigger problem below the trach, with the tumors in her lung area. For the 1st time ever, she's telling and signing to us that her chest hurts, pointing to where her lungs are, also hitting her head in frustration at night when she can't seem to cough it up. Seth and I have almost daily conversations about Vivs "airway" in our attempt to make sense of what's going on. It's often the first thing we talk about when we get up or he gets home as we report to each other how the night or day has been with her. I am often so caught up with our daily life of managing her secretions, suctioning, treatment schedule...that I feel like I stop seeing the forest for the trees...forgetting about the seriousness of her situation and how complex it is. Even though we are used to this type of life and responsibility, it continues to be a huge strain in our marriage and we (ok, mainly I!) still struggle with my attitude. Seth is always more gracious than I deserve.

 

A week after surgery, she seemed to get sick, although her oxygen and heart rate were normal. We weren't sure if she was still swollen from surgery and slowly pooping out from laboring or getting her #20th illness since trached. We knew it wasn't an infection because there were no colored secretions or high fever, but she was starting to retract and pull in her chest area, having faster, shallow breaths. We waited to see what would happen over the next few days as we increased treatments and then took her to her post op where we were prepared to be admitted. The scope of her upper airway showed a lot of swelling. She was having the hardest time breathing yet, so we went to ER to have an xray, blood work and culture done, then spent 2 days in the hospital, but nothing significant came out of any tests. She didn't seem to respond to the 1st does of steroids and spent the whole 1st night retracting heavily, almost needing to be put on the vent. I could even feel the vibration of the bed when her chest popped. With frequent albuterol treatments and more sleep, she slowly improved after the 2nd steroid dose. Steroids always make her hungry and irritable...a humorous combination of traits at times!

 

Even though, I thought we might be admitted, it was the first time EVER that I didn't pack ANYTHING. I guess it's taken me 2 dozen trips over the years to finally relax and not worry if I have this or that. I've finally grown tired of packing up the entire house for a possible long stay, then it taking a week to get it all put away when we get back. The only thing I grabbed on the way out the door this time was some underwear and several of her "sleeved suction catheters" that we can't get in the hospital and make suctioning so much easier for me, since I do most of it there. I am so thankful to God for a family type atmosphere on the peds floor at Kaiser, where we know so many of the Drs., R.T.'s and nurses well and feel so taken care of.

Even though it's tough if Vivs is very sick and needs lots of attention, I always look forward to seeing everyone and visiting with them! I also love that I can snuggle on the bed with Vivs because all of the "hook-ups" are on the wall, right behind us...a luxury we don't have at home. Grandma Viv is invaluable during these times, as Seth goes to work if things aren't too serious and she is able to do all of the things that I can't do if I'm in the bed with her, like keeping the room tidy, refilling things, cleaning this or that, getting food...). Grandma never seems bored, but keeps herself busy visiting or doing this, that or the other. It's also nice to have the company and she's great at entertaining Vivs when I'm exhausted. She still loves to come for a few days every week or two and never tires of playing made up games like "Guess the Animal" in the car and sings old song to Vivs like "Ceci, old playmate", "If the Lord Makes You a Plumber", or "He's Still Workin' on Me". Anyone remember any of those?

 

We came home with an added treatment of pulmicort 2x/day (an inhaled steroid). As much as we question the value of the many treatments we do every day, we feel that we have to continue them to mobilize her secretions in fear of her narrowed bronchus making it more difficult to clear secretions and develop pneumonias. I always wonder if we are just wasting valuable play time, since it's very difficult to see a clear improvement after them, but I'm so regimented and scheduled about things that I do, only missing one scheduled treatment in months. Part of my strict regimen is my "follow the rules" nature, but another part is fear of something even worse happening to Vivs if I don't do them., like the one time I stopped giving the vest treatment for a day because I became fed up with our lack of play time and didn't feel like it was helping...she got sick the VERY NEXT DAY...perhaps not because of my decision, but I can never prove it! Sometimes, I feel like all the treatments are what drives me crazy. I'm shaking from holding her while she shakes, while also holding the nebulizer, then I'm sometimes suctioning every few minutes. Then the TV is blaring so she can hear it over the 3 machines that are going and if she's sick and fussy or really uncomfortable, I have to keep coaxing her to stay there. Sometimes I even leave the pump on accidentally, out of brain-dead-ness and then I think "Why is it so loud? Oh, I left the pump on!"...or better yet, go to suction her, but don't even turn the pump on because it already sounds like it's on! Then I think "Why isn't the suction working? Oh, it's not even on!"...or this morning, when I realized I'd been running the nebulizer for 20 minutes before putting anything in it! So most of the time I just want peace and quiet the rest of the day. I thought I had the answer to all of this when I let her do some treatments by herself for awhile, which she sometimes does successfully, sometimes not...then I'm freed up to clean the kitchen or whatever else needs to be done...but a lot of times, she ends up needing so much suctioning, that I'm running back and forth...so I mostly prefer to just sit and hold her. I'm hoping this changes as she grows! She's almost too big for me to hold her on my lap anymore. Sometimes, she'll say and sign "all by myself today" and I'll let her do it, in hopes of building future autonomy!

 

We were starting to fear permanent vocal damage as she had no voice for 3 weeks after surgery and had to almost fully depend on her sign language. I have never been so proud of her and all of her hard work! She tries very hard to learn as much as she can, always copying any new signs I do. She's just getting her voice back and now frequently says "Mama, how to sign ___?" and fills in the blank with any new words that she doesn't know in sign yet. I hope to continue more tutoring sessions this fall to continue our fluency. Her E.N.T. agrees that we probably shouldn't do anymore of these type of surgeries, as her response is so unpredictable and they don't seem to help. She still hates wearing her speaking cap and it doesn't seem like it's going be her "thing" and I've almost given up trying it anymore. Sadly, I think she was better off before these 2 surgeries and we should just leave the tumors alone, but I fear we've messed it all up and have to adjust to this new normal. I never thought her secretions could get any harder to manage, but I was wrong!

 

During this last hospital visit, our beloved E.N.T. told us that she was leaving Kaiser. My eyes were welling up with tears and I'm pretty sure Seth's were too. She's known Vivs for 3 years, since her very first surgery at 7 months old. Although we have other doctors, she's been the one that we feel has really taken a lead in Vivs care, spending a lot of time with us and talking us through decisions and options and sharing any new research with us. She had a very serious talk with us about Vivs future care due to her rare medical issues and location of her tumors. If anything needs to be done to decrease tumors below VIvs trach, Kaiser will not be able to help us and we will need to go to Stanford or UCSF. She mentioned that, at first, rare cases get a lot of attention because everyone seems to want to learn about them and see if they can help (like the calls we received from all over the nation after our ENT sent Vivs 1st MRI scans around to NF and tumor specialists)...but after awhile, you get LESS attention, because no one really knows what to do with you! I'm sure it's very difficult for her too, as she won't be allowed to view any of her "cases" after she leaves and we won't see her again unless we need to go to Lucille Packard. We will have to explore the options of an HMO or PPO. We also heard that if we can get her diagnosis fully covered by C.C.S. (CA Children's Services), that we could take her anywhere for care. We pray the tumors around her lungs never cause more serious problems (we aren't convinced that they aren't right now), but we know that everything about Vivs is unpredictable so we have to ready for anything.

 

Because we fear problems in Vivs lungs and have never seen what it looks like, (besides MRI images), we did press our pulmonologist to schedule a lung bronchoscopy in a few weeks, Sept 15. It is a visual exam of airways of the lungs. She will take pictures and a tissue and secretion sample to see any infection causes. This will hopefully tell us if we need to do the extra hour a day seasonal inhaled antibiotic TOBI treatments from October-March, like we did last year. If no pseudomonas is found, then to my understanding we don't have to do it. That would give us much more play time! We hope this will be an out-patient procedure, going home after Vivs wakes up from sedation, but because of Vivs tracheomalyasia (floppy trachea), everything collapses when messed with, attacked or inflamed, especially when lying down. 

The airway is suppose to be rigid and hold up under pressure or stress, but hers does not, so even a small procedure could be a big deal. Her G.I. Dr. will also take samples to test stomach acid PH to tell us if we need to continue acid reflux meds, something she was diagnosed with before she was trached. However, I'm sick of giving the meds and wonder if she even needs them, but I've been in fear of weaning, since many trached people are on reflux meds simply to protect their more sensitive airway and her GI dr. always says that Vivs airway is special because of the extensive work done on it and wants to do all we can to minimize any acid injury to her throat. I weaned it once last year on my own, and sure enough, the next time we looked down her airway, we saw a lot of acid coming up and irritating her airway. I felt horrible.

 

Nights continue to be our biggest challenge, even more since surgery. Every night is different. Some nights, she coughs the whole 1st half, then settles, other nights it's the opposite. Some nights, the coughing is irregular, other nights it's regular intervals apart...and once in a while, a night with only a few coughs here and there. It's crazy. It's not unusual for her to cough every few minutes, all night long, w/ only a few minutes of reprieve here and there. Before surgery, this was something she did ONLY when she was sick. The poor girl is exhausted by nap time and goes to sleep rather quickly (a blessing for me as I am too). She now de-sats more frequently (low oxygen alarm goes off), sometimes taking an hour of unproductive coughing for her to finally cough up a huge blob for her oxygen to return to normal, only for it all to happen again and again. She's always had a harder time managing secretions when lying down (diaper changes always require 1-3 suctions), but after this last surgery, it seems that even suctioning doesn't seem to help. Before, we were able to easily suction anything that she might cough up into her trach, but now it seems more difficult to get, so we've started night treatments, which is also something that she only needed when sick before. She's also needed more saline in her trach at night, because her secretions are so thick and mucousy that it hardens in the trach, and if given a chance to dry, narrows her airway and causes even more straining. Thankfully, our night nurse had an extra nebulizer machine that we can keep in her room instead of dragging it back and forth. We are grateful to have had the SAME night nurse for almost a year! She comes about half of the week.

 

It's not only the lack of sleep that we fight, but the physical strain of getting up and down dozens of times a night, bending far over the crib to suction (harder for Seth as he's taller). We just recently turned her crib into a toddler bed, hoping it would ease the strain a bit. We always lie down after each suction because we don't know when it will be her last for awhile and we can get a few minutes sleep. This used to drive me insane, almost making me to scream, but some time recently, after over two years of this exciting night life, I just stopped caring. I can tell my body is adjusting to it all because it's been awhile since I've had a breakdown. The most recent one came a few weeks ago, after our 2nd hospital visit in 2 weeks and me going on 5 nights of little sleep. It happened when one of our Drs. came in to check on us and I was in the middle of answering one of her questions (which wasn't sad at all!), but the lack of sleep just hit me like a ton of bricks. She was gracious and spent a few minutes just chatting with me...but I'm sure that went into my "social notes"! I guess that's how long it took me to accept it. Seth says at this point in my life (well, since I had a baby, really), I REALLY should consider taking up two things that I've never drank: caffeine and liquor...caffeine to pep me up and liquor to relax me! But I don't like either one, and I've never wanted to depend on a substance for a feeling. Maybe I'll regret this one day...who knows? I have found an unexpected ironic benefit to our active night life. On a recent girls night out, where I didn't get home until 2am, I didn't even feel phased (far from my pre-baby life, where I rarely stayed up past 9:30!). If I'm on night duty, I might haven't even gotten to sleep yet from all of the suctioning by 2am! Let's just say that the term "pulling an all-nighter" was something that I would never have been physically able to do in college and couldn't even understand how people did it. Now I do it at least 2 nights a week.

 

For the last year, I've let myself get extremely frustrated with not being able to stay in a wellness groove and have a consistent exercise routine, due to our situation and everything having to stop when Vivs is sick. But recently, I guess I finally accepted it and now just try to jump back in to the swing of things when she's well or try my best to take advantage of the time when Seth or my mom are here. My back, neck and shoulders are in horrible shape and regular exercise is the only thing that helps so if I can wake up early enough and VIvs isn't up yet, I try to do 30-60 minutes of yoga (w/ my favorite 2 PBS shows!) in the morning, and a fast walk/run in the evening when Seth gets home. If I have any other "me-time", I try to hack away at one of my many projects. Honestly, it drives me insane to only have a few minutes here and there to tackle them, but it's the only way I can get something done over time. One of them I'm trying to finish by November (3 year anniversary of her 1st surgery) is compiling all of my FB posts and many of the "comments" that have helped me feel less alone over the last 3 years, into one book...not a published book, but just a book for us. So many of you have taken this journey with us and mostly because of social media called FB. You have taken the time to check in and then to type things that still resonate in my heart that always make me feel less alone in the world and that I like to re-read from time to time. While cutting and pasting comments from 2 years ago, I came across a very short, but meaningful one from a college friend..."God is there with you...and that changes everything"...always a good reminder for us all that God will never leave us or forsake us!

 

Now, more than ever before, I have to be very careful about what I let through my eyes into my soul...like watching the news. At night when thoughts have more time to roll around in my head, a lot of fear can grow out of thinking about things that could happen. I think of Seth dying and leaving us alone or a natural disaster that separates us while he's at work, or something happening to me or my health that would hinder my care of Vivs. Without watching the news, I have plenty of things that bring fear. But if I let myself watch it, even a little bit, I grow terrified of living in and raising a child in the current conditions. So I rarely watch it anymore. The other day, when listening to a friend talk about going through all of his Grandma's material belongings after her death...the question came up "It's not going to be like that with our generation. Who's going to go through all of our DIGITAL stuff to find treasures like old letters and pictures after we die?" For some reason, this made me incredibly sad and I still can't stop thinking about it. One morning, I felt God gently reminding me that "His Eye is on the Sparrow, and I know He Watches Me", when I heard the song on the car radio (which I NEVER even listen to anymore) and then again that morning in church. I needed that right at that moment as my night fears were escalating.

 

Even though I do my fair share (and more) of complaining, I am trying to be consistently thankful to God for my health so that I can take care of Vivs. OK...maybe the gratefulness is just a selfish attempt at illness & disease prevention! I have a wonderful husband who does more than his share. I hardly ever have to buy Vivs clothes or shoes, because Grandma finds everything at the thrift store. I am also specifically grateful for 2 neighbors, that have become precious friends, who KEEP (even though I say I'm ok now!) bringing food almost every week. One will always share her own meals with us which are healthy and delicious and the other loves to buy me a bunch of stuff during her Costco trips! It's irrelevant that it takes us over a year to finish that 200 pack of corn dogs...I won't complain because it means less work on my part! They also come and visit often in the late afternoons, which any mom knows can sometimes seem endless. We are truly blessed by so many other wonderful and caring neighbors that we get to visit with often.

 In June & July, Vivs had her longest wellness streak EVER (2 months) and we tried to enjoy every minute! During this time, we braved a trip to Missouri to visit family and farm. My parents and I drove back most summers of my life and I try to go back at least every 2 years. I would rather go there than any beach, resort or cruise and want Vivs to know her family & have all of the same experiences I did. Yes, I regretted it after the minute we purchases plane tickets, thinking "VIVS IS NOT THE TYPE OF GIRL THAT YOU TRAVEL WITH! SHE HAS 6 MACHINES AND ENDS UP IN THE HOSPITAL ALL OF THE TIME! WHAT ARE WE THINKING?", considering the 2 months before this trip, she couldn't stay well for more than 10 days. I guess I was most afraid of being somewhere ELSE and her getting sick. Our life is so inconvenient when she's sick and I didn't want our family to see that side of our lives, where Vivs coughs all day and night and we do treatments all day and night. I spent almost a full month organizing, researching, calling airlines, getting dr notes and any meds we might need, and prepping how to get some of her equipment delivered, some sent with my parents (who drove) and making sure we kept everything we needed with us in case she got sick and we were separated from the stuff being delivered and with my parents. I kept Vivs sequestered for weeks before our trip. I was so nervous about going through security and spent way to much time prepping when it ended up being no problem at all. 

 

Because I'm still so absorbed in what everyone else around is thinking when she coughs and we suction and I know what I would be thinking if I didn't know what I was hearing, I had plans to stand up and tell everyone on the plane "FOR THE NEXT 4 HOURS, YOU WILL HEAR MY DAUGHTER COUGHING HER BRAINS OUT AND THEN WHAT SOUNDS LIKE A GENERATOR AS WE SUCTION, BUT SHE IS NOOOOOT SICK, SHE JUST HAS TUMORS IN HER AIRWAY, SO REST ASSURED!", but after we got settled in our seats and we heard the lady behind us start a jag of loud, hacking smokers cough (isn't that ironic!) I thought "Who cares? I'll never see these people again" and never carried out my well practiced announcement. Even though I was able to relax and have a great time with family, I studied and watched Vivs carefully, night and day, knowing that at any second, she could start coughing and not stop for a week. If I noticed any changes in Vivs, I would start trying to gear myself up for what our plan of attack would be. There were two times, both in the evening, when I just KNEW that it was coming. I could see it in her eyes. She would not be interested in a meal (very rare!), start coughing more and become very low-energy and clingy to me. We immediately gave extra treatments and prayed all through the night and both times, she would wake up just fine! WHEW! I was most afraid of her getting sick just before we had to fly home...then we would have to stay (for who knows how long) until she got better and I would keep thinking to myself "Why didn't I just make the reservations for ONE DAY EARLIER?" Of course, our family probably wouldn't have minded this a bit, but I just didn't' want them to see this side our life.

 

It ended up being the miracle trip, all I had prayed for, for weeks. I don't even think I've prayed harder for Vivs to be healed, even during the times before she was trached, dying in front of our eyes. In those two weeks, Vivs received about 6 months of physical and social therapy with all of the cousin play and things to do, stairs to climb, and autonomy like she's never experienced before as we allowed her to gallivant anywhere she wanted. She had her 1st marshmallow pepsi at the creamy, learned how to carry the kitties w/o strangling them and caught fireflies. Hearing my aunt Violet's infectious giggle when she watched Vivs eat, play or sign made it all worth it! It was a huge deal in our little world. Never mind that it took me over a month to get all of the medical equipment that I packed PUT AWAY!

JUNE 2014 Super-Vivs Trach Life Update

It's been an exhausting 2 months of record illness frequency where Vivs was sick 4 times in 8 weeks, with no more than a week and a half of wellness between for recovery...her last illness being #18 since trached almost 2 years ago. After only 5 days of wellness after recovering from one of the recent illnesses, she started coughing constantly AGAIN!. We thought "There's no way she's sick again THIS SOON!" and thought it must be in response to a fall where she hit her trach area pretty hard, which can irritate the airway, and has caused a few hours of coughing in the past. However, after several hours, we knew it was something more. We had just returned from Grandma house, where I had accidentally left a very expensive med that isn't easy to refill quickly, so she had to bring it.

I knew this would happen one day. I've tried so hard to check and double check my medical packing lists consistently over the last 2 years so this wouldn't happen, but lately, I've let my vigilance slide as I sometimes just rely on my brain and not my lists to make sure we have everything.

As soon as she hits what we call the "point of no return" where she can't STOP coughing and we have to suction constantly, and we know w/o a doubt that something is wrong, I'm ALWAYS able to look back over the last few days and realize there has been a steady increase in her secretions, but because her normal baseline is 75-100 suctions a day, it's difficult to tell an increase unless I tally every day, which I used to do the 1st year, but now only do once in a while to check my estimations.

I normally wouldn't be too inconvenienced by her illnesses and how our entire world stops when she's sick to do round the clock treatments, but we have a big event coming up and I've never been so nervous about her wellness. She has to stay well for longer than she has in a long time, in order to pull this off successfully! With each cough, I think "OH NO! Is this the beginning of something?"...or if her oxygen is just a few points lower or her heart rate a few points higher than normal one night, I'm in fear of something beginning. I've never prayed so hard for her to be well!

I am probably to blame for most of Vivs illnesses these last 9 months, as they were mostly a few days after our Little Gym class (or after the only 3 times we took her to Sunday School). Because I felt so strongly that she needed this Little Gym class to improve her physical strength, I had to carefully weigh the risks. I was able to visit more regularly with a close friend who also took her daughter, so maybe my intentions were purely selfish. Quality time with good friends is like gold to me at this stage of my life and sometimes, simply for that reason, I let my guard down. I think back to the 1st year Vivs was trached, when we did practically NOTHING and went almost NOWHERE in order to protect her, and she STILL got sick every 3-5 weeks. After a year of that, I had to start living more "normal" as I was going crazy.

We do know that the last surgery in March to remove some of the tumor below her vocal chords DID open up her airway more. This was proven by her runny nose during her last illness. Vivs has NEVER had a runny nose in almost two years trached, because hardly anything can get up that high due to her closed upper airway. Her 1st runny nose should have made me very happy, right? WRONG! I was SO ANNOYED by it! This is ONE OF THE HIDDEN BENEFITS of having a closed upper airway...that you DON'T GET RUNNY NOSES! I've gotten used to this little perk over the last few years and have to admit, I've even felt sorry for some kids I see that have that constant runny nose, thinking "Oh, I'm so sorry you don't have a trach!" I seem to have no problem suctioning 150x/day, but ask me to keep wiping a runny nose and I can barely take it! I think I'm going to have to get used it, though, as we are scheduling another surgery to work on the tumor on the other side of her airway in August.

Before these last two months of frequent illness, I was beginning to notice Vivs amount of secretions increasing...not the frequency of needing suctioning, but the amount in each cough. I used to be able to wait a few coughs, maybe 4 or 5 before the HME filled up and needed suctioning, but now most of the time, just ONE cough fills it up and if I don't suction EVERY time, her HME needs replacing 1/2 way through the day...a new frustration for me. Because we only receive 30/month, I've had to spend a fair amount of time on the phone (my favorite thing to do!) getting approved for double. She is getting bigger, which means that the amount of her secretions is getting bigger too?...and maybe the slightly more open airway from the last surgery allows her to get it up more? Who knows!

In a desperate attempt for wellness, I've started experimenting with essential oils. There are a handful of oils that many swear by to kill bacteria and sustain wellness. However, there's little solid research about using them with trachs and doctors can only say "I can't advise if it's harmful or not". Because Vivs doesn't breathe through her mouth and nose, but directly through her trachea into her lungs, I am more apt to think it's not as useful for her as it would be for you and I...perhaps even having a dangerous element to it (there is a reason why these oils come in GLASS bottles!)...and because it's hard for me to spend the time required to fully research, learn and experiment adequately, it's probably not something I'm going to fully get into. Anyone out there have any thoughts or advice on this?

A recent allergy test came back negative. I guess I was happy?...but it would have been nice to have something to blame all of her secretions on as we are still trying to figure it out if it's not simply due to her tumors. The allergy dr. couldn't believe I suctioned 100-200x/day. He couldn't imagine doing ANYTHING 100-200x day and tried to relate by remembering back to how many diapers he had to change for his newborn, but at the most, he said that would have been once an hour so 24x a day! I thought that was a good analogy! We will due another allergy test in two years.

I asked to have Vivs speech re-evaluated, as it's been about 9 months w/o formal speech therapy and I wanted to make sure she's on track. Since I'm her speech therapist now, I need to know more specifically what we need to spend time on. I knew she wouldn't quality for services this soon, as she's made huge progress this last year. I was more concerned about how her tongue tumor is affecting some of her articulation development. Her expressive and receptive scores are both 112, a high average, around 3 years 10 months (79 percentile). This is absolutely amazing to me, considering she's lost about 6 months of her life either in a hospital or at home drug weaning and recovering. She also didn't speak at all for 3 months after she was trached. She is developing all early sounds well (p,m,w,a,n,h), except for "F", which there's no reason why she shouldn't be able to do, but she just can't seem to get. HOWEVER, she is neutralizing all sounds that require any tongue strength/manipulation (c,d,g,h,j,k,l,s,w,x,ng,t) due to the tumor on the right side of her tongue. She can't even MOVE her tongue to the right when she sticks it out of her mouth. Vivs will most likely be a candidate for articulation therapy in the future when she's older and can understand more about how to actually make a sound, when it's wrong, how to correct it, and have more awareness of tongue placement and air flow. Our current goals is for her to be intelligible and continue copying our corrections. A huge challenge is still getting her to keep her Passey Muir Speaking Valve on, but our ENT isn't too worried about this, as Vivs has somehow learned to get the pressure she needs to speak...but I'm still concerned that it's what could really help her more.

I just finished a 7 week sign class with a deaf tutor. It was my goal to learn at least another 300-500 signs as I had hit a rut and needed some motivation to continue my fluency in order to continue Vivs fluency. I was nervous about having a deaf teacher as I wasn't allowed to voice or mouth ANYTHING, but once we got a grooove going, I learned a lot. I'm probably a frustrating student as I can fingerspell fairly fast, but because I rarely have a chance to watch and read someone else's sign and fingerspelling, I'm super slow at processing what I see! I think I learn more from someone who speaks WHILE they sign (as my previous teacher did), so after a summer break, I might pursue a speaking tutor...we'll see. Of course, I could learn a ton more from online, but I don't want to spend anymore time on the stupid computer than I have to.

    

Vivs was recently chosen for the featured story for "Silicon Valley Gives" day for the JW House, where we were invited to Café Stritch for their evening of fundraising.  She enjoyed the jazz band, mac and cheese, played the piano for everyone and went around visiting each table, saying and signing "Thank you". We were also asked to be part of a video to seek a $10,000 donation from the Intero Foundation. The last once a month event at the JW House for families with medically fragile children was a bbq, sing-a-long and movie on the lawn. This was one of the few things we've done as a family in awhile (as we seem to always be tag teaming Vivs) and I deeply enjoy talking with the other 3-4 families that have started coming. Amazingly, these fun events were during "healthy" times! As often as she's sick, we get to do some very cool things when she's well and I am grateful! We've gotten to travel to Grandma's a few times to use the swing and sand box Papa Vern has built, had a block sale/block party, went to Gizditch Ranch to pick berries and have had lots of play dates.

Even though some days (especially when she's sick) feel overwhelming, heavy and serious, there are some very funny things about our life. Because Vivs is so literal in her signs, she will often sign something that she THINKS we said. Like the other day when I mentioned our "guest bed" to Seth...after Vivs heard it, she kept signing "guess" & "bed" to us like she was telling us something great, but we just couldn't figure it out and kept putting her off as we were trying to talk to each other. Finally, we realized that she was signing what she thought she heard us say.

A few weeks ago, Seth and I were taking about giving her more "C.P.T." (chest percussion treatment), but she heard "Sleepy Tea" and then kept signing that she wanted "SLEEPY TEA" before bed. It took us awhile to figure out what the heck she wanted after finally realizing she was once again signing exactly what she heard. Every night since then, Seth has made her "SLEEPY TEA" before bed with warm water, honey and lemon! A hilarious new tradition in our house! It's also pretty funny when she's getting ready for bed or waking up and she still has her pulse ox taped to her toe and she's dragging it around behind her. Several times, I've accidentally stepped on it and tripped her! SORRY VIVS! They just keep coming...like when I painted her toes for the first time after she saw that I painted mine. That night, after much trouble shooting and frustration, Seth finally realized that the pulse ox won't read through a painted toenail! It blocks the light emitting diodes and collecting sensors which measure the amount of red and infra-red light emerging from the tissue. (I'm not this smart, it's pasted from google!) So now, we just paint the four little toes on each foot! Will this mean discounted pedicures in her future? How about one more? If Vivs feels like her HME is full, she will pull it off (much to our disliking!) and try to empty it with a flick, but she always just throws it (we do this on walks sometimes if we don't have the pump...kind of like someone would spit, but we try to do it discretely, in a bush). I do remember one time, months ago, in the front of our neighbors house when I looked at her and realized she didn't have her HME...she didn't know where it was, so I went to get a new one when I couldn't find it. Well, it was recently found...in our neighbors lavender bush when they were removing them for new landscaping! Because we know them well, they knew what it was. When she told me she found it, I thought "THAT'S WHERE SHE FLICKED IT!" and told her the story.

  

We are so thankful for our night nurse, who has been with us for 10 months! She takes excellent care of Vivs. Although I will never sleep w/o the monitor so I can hear all coughs and suctions, I am feeling myself relax more during nights that she's here, Vivs is well and doesn't cough as frequently, needing less suctioning and therefore providing longer "quiet" times where I can fall into a deep sleep. I still get jealous of Seth, as he can fall asleep in seconds (SERIOUSLY! THIS IS SO CRAZY TO ME!) and isn't kept awake easily by some of Vivs more quiet nighttime trach sounds, like her loud "rattle" even if there's a small amount of secretion in her airway. I am lucky to get at least a few minutes of shut eye during her nap most days, if I am diligent about lying back down quickly after each suction. I sometimes have to suction 5-10x during the first 30-60 minutes of her nap time. After one of those times, she'll stop coughing for maybe 20-30 minutes and it gives me time to fall asleep, as that takes a long time for me and even if I can just get 10-15 minutes, it re-energizes me for the rest of the day. I never know when her last cough is for awhile, so I have to discipline myself to just keep lying down and trying to fall asleep! Often it never happens if her coughs are perfectly spaced apart, and I give up, get up and try to get something done.

When Vivs is well, we are enjoying just having the 4 treatments/day as it allows us more outside playtime or time to actually go somewhere. Vivs loves to take long walks, wagon or bike rides, read books in the hammock, play in her playhouse, water the plants, pick tomatoes, work on her preschool books, do art or stickers and play games. She's pretty conservative physically, so rarely gets hurt. She hasn't started running or jumping yet, but she can climb onto the counter with a stool, which means that her core is getting stronger, FINALLY! I really enjoy the more relaxed days with minimum treatments and more free time. However, some days or even weeks seem entirely medical...having to be on the phone for hours dealing with medical mix ups and incompetence, restocking and organizing the 7 boxes of medical equipment that was just delivered, calling to get the incorrect equipment corrected, a call from Medi-Cal or C.C.S. or Kaiser needing this or that info, nurse visit for trach change, nurse visit for night nursing recertification, realizing the suction pump is not holding charge while I'm grocery shopping with Vivs and rushing out to make it to the car charger, then home to order a new one asap, scheduling appts/therapies/assessments…oh wait, canceling and/or changing those because Vivs is sick, going to an appt, coming back from an appt, servicing the pump, and washing & prepping medical equipment. WHEW! By the time Seth gets home and asks how my day was, I don't even know where to start!

I don't think I've had a break down in awhile...maybe it's because I've been reading kidnapping survivor stories. Suctioning 200x/day and never getting more than a few hours sleep at a time just can't compete with being chained up, raped and beaten for 10 years. I also recently met a single mom, who has a lot more to deal with than I do with her medically fragile child AND HAS TO WORK! If I get a little cranky, I try to remember that I really do have a great situation with the help I get from Seth and my mom and so many wonderful neighbors, a wonderful church and friends and family in our support system. 

Seth and I are going longer periods w/o arguing, something that's usually my fault due to my controlling, judgmental and over-reactive nature...but most of our battles would be easily solved by something we like to call "Life-Recorder", which might just be possible one day with all of the advancements in technology! It would record EVERYTHING we say to each other and would immediately bring up any conversation that would settle our communication mix-up! I'm sure you would also agree that this would solve most problems in marriages today...or maybe make things WORSE! All of the medical stuff adds so much more to argue about! The other day, we tried to do something "normal"...just sit and watch a movie together after we put Vivs down. Who were we trying to fool? She required so much suctioning over the next 2 hours (not always the case) that we had to pause the movie about 15x! At one point, Seth asks "Who's that person?"..."That's the main character!", I reply...then we both agreed that it's not even worth trying anymore and laughed at our desperate attempt.