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 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.
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.
