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| Helping mom make cookies |
After 10 months of being able to stay out of ER/ICU for illnesses, and Vivs normal 4-6 weeks of wellness, she predictably became sick after an eventful weekend of socializing and attending Sunday School for the 1st time (where I've never seen so many kids with runny noses and coughs!). It's a good reminder to us that anything viral, even allergies that cause lots of secretions, can turn into a pneumonia because of Vivs poor ability to manage and clear secretions. It's a battle I fight each day as I wonder if I should stay home, keeping her from anything that's going around, or go out and live normally, exposing her to who knows what? I usually choose the latter, as we didn't go
ANYWHERE the first year she was trached and she STILL got sick every month! This last time was different, as it started with lots of coughing and fever, but she never had colored secretions, which is when we take a sample into the lab. After 3 days of this, we took her to ER after her fever reached 104. After an xray showing pneumonia, the 1st dose of IV antibiotics and some Motrin to reduce fever, Vivs perked up and started acting like herself. We decided to take her home (as much as we like to go se all of our friends upstairs!), because we would all get more rest and Vivs has always shown improvement after the 1st few doses of antibiotics. After what it seemed to be an improvement over the next few days, she started coughing uncontrollably and unproductively for the next two days. Although her oxygen was good, we were afraid she would tucker out from 6 days of increased coughing, so took her to ER again, where the pneumonia showed worse. Antibiotics were changed and steroids, Benadryl and Tylenol given, which gave her a little reprieve. It was concerning to us that she was improving slower than the many times before on antibiotics, so we stayed 2 days just to make sure. Thank God for our night nurse, who came the evening we got home from the hospital as we were all exhausted. I don't think I've slept so hard in months. We know have a standing order of antibiotics that we can get if we feel that she's starting to get seriously sick.
In the hospital, I was happy to be next door to friends we met there 2 years ago! We were laughing about someone who told me that it was good that we could finally get some rest with the nurses taking care of my child. We are both moms of children with respiratory issues, so were talking about all of the breathing treatments required every hour or so. Those, combined with the many other reasons people need to come in, cause a steady stream of necessary interruptions that I will one day write a song about (after I write a song about all of the ways that one can die, as I keep adding to each morning after I watch the news!) If you haven't stayed in the hospital recently, here's JUST A FEW examples of what goes on...to give you a better idea of a typical day for us: patient care coordinator, vitals, someone just saying hi, dr. bringing all residents in to see NF spots or a trach change, albuterol//hypertonic treatment every 2-4 hours, pulmozyme treatment, vest treatment every 2 hours, IV meds, IV machine beeping that it's done with meds, IV machine beeping that it's running out of fluids, IV machine beeping that there's a blockage, IV goes bad, nurses trying to save IV, getting new IV, cafeteria lady taking meal order for next day, questions from doctors/nurses/R.T.s, xray, blood draw, dr rounds to discuss plans, engineer to fix tv or something else broken in the room...shall I go on?...there are so many more!
There's not much rest in the hospital (probably as it should be), but I do enjoy a few things about being in there. I enjoy that Vivs goes RIGHT to sleep because she's sick and I get to hold her and lie next to her which is not practical at home with all of her hook ups and need to be in the crib to get oxygen and cool mist. I also love visiting with all of our doctor, nurse and R.T. friends that we have made over the lsat 3 years. They all work very hard to take care of us and many others. This last time, I considered myself very lucky to get to be neighbors and visit with the Hall family, who have a lot more to deal with than we could ever imagine with Vivs and continue their medical journey with perseverance. There's nothing like talking to someone else who fully understands what "round the clock treatments" and "frequent suctioning" truly mean, simply because they live it day in and day out. I almost didn't want to go home when we were discharged because they are going to be there at least another month and I wanted to stay, to at least offer my friendship and conversation each day, for sanity purposes.
Up until this last illness in the hospital, I was starting to think that Vivs was stabalizing and we would be ok to travel more and maybe even be able to see how having more fertility treatments might fit into our lives, but this makes me question everything all over again! Currently, Vivs is sick AGAIN, only 1 week after finishing antibiotics from last weeks pneumonia. Her heartrate and oxygen haven't returned to normal baseline yet (usually takes 1-2 weeks after each illness), so maybe something is still going on. We'll have to see what this develops into and hopefully, we can stay out of ER/ICU.
The next surgery to remove the left side of the tumor under her vocal chords is scheduled for late June, or earlier if something opens up. We're not sure how much improvement we see from the March surgery that removed some of the right side. She seems to have made good progression in her speech since then, sounding a bit louder and clearer, but still doesn't tolerate wearing her speaking cap much more. This might also be due to the amount of secretions she has, which makes suctioning harder while wearing the cap vs. wearing her H.M.E., which we can simply sunction inside of. If removing some of the other side allows her even a small percentage of improvement, it's worth it to us, as these are critical speech development years for her. We are not going to worry about her left bronchus until an xray shows that it's collapsing. We are sure it must be a factor in keeping her from clearing secretions, but all MRI's and XRAY's don't show any worsening yet. Tumored areas are not usually stinted, so if that area does collapse, it could mean a possible lung transplant.
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| Vivs Getting "The Vest" Treatment |
Vivs speech is progressing well as she's attempting 3-4 syllable words and longer sentences. I insisted on a speech re-eval (6 months after graduating from speech therapy) to make sure that we are on target. My worry is that she will never develop proper speech due to her enlarged and non symetrical tongue and resistance to wearing her speaking cap, which would give her more pressure to properly form and say sounds. Many letters are difficult for her to say and we aren't sure if it's due to an issue or just simply 3 year old babble. During the evaluation, she tested at a 6 year old level in receptive language (ability to point to something or do something after being told or asked in various ways), but will have to do the expressive language test next time, as we ran out of time. I will be surprised if she even passes, but we'll have to wait and see. This has always been my concern...that she's incredibly intelligent, but can't express it with language. We also have an allergy test coming up. We have heard of some trached children being on a daily antihistimine, which can decrease secretions. THIS WOULD BE OUR DREAM, as we still suction almost just as much as the day we came home from the hospital! This one factor is what causes me to wonder what "school" and other future events will look like for her and us.
As her fine motor skills improve, Vivs has started playing with the sleeved catheters that we suction inside of her trach with. I've had to label one "FOR VIVS PLAY" to keep her from playing with the one that we use and replace each day, in order to keep things as clean as possible. I have to admit, even though a lot of time and energy is spent trying to keep equipment clean and sanitized, I'm always in fear of making her sick by something we are doing, I can't help but think (every time I clean something) "Does this even matter?". I often ask doctors, nurses and respiratory therapists what they think are the best suctioning techniques, but they are all over the map and as much suctioning as we do, it's impossible for us to use new equipment each time or rinse with new water each time. Dealing with medical equipment can put me over the edge, whether it's having to trouble shoot problems or the constant misplacing of something that 3 of us use and put back in different locations! Whenever I can't get her pulse ox to read correctly, I almost have a meltdown. That's when Seth comes in handy as he's a great trouble shooter and understands "systems" of how things work...to bad he hasn't figured ME out yet!
I'm not sure if any of you experience this, but recently, I've been feeling extremely frustrated with the dependency on technology that seems to be increasing in our lives. As it's "suppose" to make things easier and faster, it seems that everything we have to do is on a screen...bills, any type of research or communication, our calendar, keeping up with family/friends...and with my need to be on kp.org more than I'd like to share, my attempt to keep up with Vivs annual digital yearbook each week, 1-3 hours of educational tv watching during treatments, and having to keep a close eye on Vivs digital monitor at all times when we aren't in her room...I'm convinced all of this "screen" time is going to cause my brain to explode, maybe implode...who knows? I don't believe that God made us to stare at screens, but at sunsets...at things in nature, at people. I don't know how gamers or those who are addicted to technology don't go blind. I ACTUALLY feel like my eyes are growing weaker!
I start an advanced sign language class next week. Although I continue to learn more everyday and teach Vivs all that I know, which she picks up quickly and uses often, we have hit a plateau. Even though I could learn a lot more online, I can't stand being on the computer and looking at screens ONE MINUTE MORE, unless I have to, so I was grateful to find this class and register just in time! It's my goal for Vivs and I to become as fluent as we can in case of future tumor issues that might inhibit speech. I also want to give her a skill that she could possibly use in her future. After this class, I may have to join a meet up group of some sort to continue our fluency.
A mom we met 2 1/2 years ago at the JW House, has recently started a support group for families with medically fragile children called F.A.N.S. (family activities that nurture and support) with money from a grant that she wrote. We have been attending once a month and enjoy the different themes each time. They have food, crafts, music, dancing, lawn movies and many other activities to enjoy. If any of you know of someone that might want to attend, the info is on jwhouse.org, under news and events. We are trying to get the word out, as we are one of the few families that go! There is a huge need for this type of group, but reaching the appropriate families is a challenge.
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| Watching movies on the lawn ad the JW House |
After two months of juicing, I've finally succumbed to just BUYING juice! I gave it a good go and will do it again, but it's difficult and overwhelming for me to keep it up regularly. It takes a lot of money, prep and clean up...all while suctioning frequently! So, I moved to doing it every other week, but now, after tasting how yummy and seeing how cheap some of the store ones are, I'm giving up my fight. I was trying to avoid the preservatives in store juices, but I guess I've lowered my standard after looking at the financial difference as well as "time spent" factor!
We have been able to enjoy a little more play time as we are down to basic treatments, unless she's sick. We have been taking advantage of this time, going for longs bike rides, walks, and going to see friends. I told myself that I would attempt pottie training and even possibly the move to a no nap day after we finished the intense 7 month cycle of more treatments a few months ago, the end of March. I was going to give myself a few weeks to enjoy our new schedule of increased freedom before starting those two life changes, but then Vivs became sick again and, it all came to a crashing halt. She's ready for pottie training, but I am not. She's ready for no nap, but I am NOT. A little nap is the only thing that gets me through the latter part of the day, especially after nights w/o our night nurse. What's the oldest age that it's not WEIRD to see a kid in diapers? Wait...don't even tell me...it will only discourage me!
I have to make sure I'm always on guard around Vivs, as I can sometimes forget that she has a trach. The other day, on a walk, a dog that she was petting growled and snapped at her after she coughed, which probably sounded like a growl to the dog and naturally, reacted. This really scared me, as it was something I had never thought about before. It's also been awhile since another child reached for her H.M.E. (protector she wears over her trach), so I find myself forgetting about that too...until last week at music class, another child quickly reached over and grabbed onto it. It didn't scare me, like it did the 1st few times a long time ago, because I know that we tie her tie tight enough so that it won't pull her trach out with it, but it scared Vivs this time and for the rest of the class, she would hold her hand over her H.M.E. when that little boy came too close. This is good progress, as it shows that she knows how to protect it herself. Once in awhile, I'm also reminded that Vivs isn't able to cry loudly or cry for help if she's in trouble. This is another one of my fears for her future! The other day, a chair fell on top of her in another room when I was in the bathroom. Because the air conditioner and some other ambient noises were going, I didn't hear her quiet, hissy cry and weak voice repeating "mama help". It wasn't until a few minutes later when I found her. It wasn't a serious physical threat, but because she's weaker than most, she doesn't have the skills to get herself out of these types of situations yet. These incidents scare me to death, as I take it to the most extreme level in my mind, think of the worst case scenarios, and have to stop myself from thinking about it. We have to watch her very closely in her crib, as she's gotten her ankle stuck in the slats and wasn't making a huge deal about it, but unless we are practically staring at the screen every few seconds, we won't notice those small changes and cries for help, especially if her machines are on and we have other noises on in the house like microwave, tv, air conditioner. She could actually be a lot louder in her cries for help if it wasn't for her tracheomalacia, which causes her airway to constrict when she's crying.
These are some of the more serious parts of our lives, or as I've heard someone say, "brutiful" parts, which I think is a great word mash up to describe life, don't you? However, there are many things that are comical, like our never ending hunt for a durable, small, quick grab flashlight for all of the things we have to do at night in her room. I think Seth orders every new one he finds, so I just sigh when ANOTHER small package comes in the mail and we try it for a few weeks before it goes bad...or like the other day, when a lady in a store reminded Vivs to cover he mouth when she coughs, which is EVERY FEW MINUTES SOMETIMES...I almost agreed with her and showed Vivs how to do it, but then I realized that no air comes out of her mouth or nose...so I told the lady this and she just sort of stared at me, then walked away...then I started thinking "Maybe I should teach her to cover her mouth for other people!"...or someone else who commented on Vivs "dirty toes" which is really all of the glue residue from wearing a pulse ox 15 hours a day...how could she ever guess such a thing, right?...or the other night when we took Vivs to a restuarant and sat next to a table with a large and loud family, but when we turned the pump on for the first time to suction, they were all DEAD SILENT, staring at each other, wondering what it was they were hearing, but no one would look our way....I think these sort of things are hilarious and really bring me joy! Yesterday, Vivs and I made "Pinkalicious" cupcakes (a book about a girl who turns pink after eating them) and a neighbor was over helping us...Vivs starts one of her coughing bouts and is hacking all over the cupcakes, which really grosses me out, even if nothing comes out of her mouth or nose and all goes into her HME...it was actually the NEIGHBOR that said "Isn't that cool that she can cough all over food, but it's ok?"...I'm still not sure how I feel about this!
