My papaw used to say "its always a good thing when you wake up on this side of the dirt"Wise man eh? :0)
Life has been very busy and honestly I have no clue where to begin other than where I left off.
We are still adjusting to this new "trach lifestyle" and I can honestly say it hasn't come without its basket full of troubles. Jophies anatomy and shape is very deformed due to progression of disease but mostly to severe kyphosis which I won't EVEN get into the "what mostly caused it". I will say last time his Ortho doc checked his curve was more than 90 degrees and you don't have to know anything about Kyphosis to know thats a kiss your butt curve! Because of these things finding just the "right fit" for Jophies trach has been challenging to say the least.
We've continued with followup appointments with his ENT doc switching this and changing that. I think maybe I'm getting a bit ahead of myself. Let me back up a bit. Prior to the "switch this and change that plan" Jophie was just not adjusting well with the trach. He continued to be in severe pain along with regularly coughing up blood. Bright Red blood. Lots of it which to me indicated an "active bleed" "somewhere" from "something". Yea I know thats just about as clear as mud now try being on this end and looking through all that mud trying to figure out whats wrong with your non-verbal son.
Yea right.......It has NOT been fun. Not even a little bit.
The bleeding continued as well as his pain and then he started acting "ill".......We took him to see Sherrie who also assumed the "head scratch" position that seems to be the only effective thing to do these days when dealing with Jophies little troubles. Did I say little?? Surely I did not??
Well suffice to say that little visit only managed to send us in the direction of his ENT doc again but this time we had success! Don't get too excited here. Success in my book I'm certain stands for something entirely different than what it does in your book. By success I mean the ENT was able to "pinpoint" the problem.
The verdict: Severe throat infection(I'm assuming the big bad tracheitis he warned me of prior to surgery), granulation and scar tissue that had ran amuck and grown to blob monster proportions and in turn was causing the "narrowing airway" which was also responsible for my little guys lovely sounding cough liken to that of a baby velociraptor on speed! Oh and lest we forget I have to mention the grand canyon sized ulcer that the honkin big adult trach was causing and YEP thats where the bleeding was coming from.
The Solution: And let me just say I use this word "very lightly" because what we began doing was by no means the solution but rather "the path" leading us to where we are TODAY which believe it or not I am leading up to. The plan "that day" was to put Jophie on 2 weeks of a big gun antibiotic to knock that throat infection down and hopefully at the same time keep that "EVIL" pseudomonas monster at bay along with a new drug. Ah yes how lovely. One more drug for me to keep track of. Now mind you I'm not complaining but, if you could see this childs drug regimen you would understand all the eye rolling and whining I seem to be doing lately.
The new drug needed to be an inhaled steroid and that alone about pushed me into orbit. Aside from the fact that we are STILL weaning massive amounts of oral steroids from his last PICU stay he also has a "HORRIBLE" allergy to the one the ENT doc wanted to use. I KNEW exactly which one he was going to say. Pulmicort.
No can do.
He honestly could have benefitted from this years ago but it seems there weren't many options aside from the Pulmicort but today well the playing field so to speak has grown. So, the next drug of choice was FloVent. Ah well theres a new one he's never tried which that in itself pushes me into twitching mode. The child has so many severe allergies none of which you know about till you try them and he almost dies from the reactions.
Ah yes another lovely adventure for us to face "alone" at home for the first time.
We honestly didn't have much of a choice because his airway had narrowed so much from the infection and the granulation tissue SOOO, FloVent it was and can I just say I LOVE this drug. No reactions at all AND the best part it began taking down the swelling almost immediately! I honestly think this one will be right up there with Zofran as drugs we can NOT live without.
Well we puttered on through the next couple weeks obediantly changing the inner canula nightly, cleaning the trach daily and changing the entire thing out every week. The first 2 weeks he was still in considerable pain which we would find out later had "very little" to do with the surgery pain inself.
He continued coughing up blood, crying and was in just pure misery. I just knew this could NOT be the "better quality of life" everyone had been speaking of.
Could NOT BE.....
Through all of this I kept insisting I felt like the small adult trach was just too big for Jophie and that it hurt to change the canulas and it hurt to change the trachs themselves. Now you have to remember Jophie has a VERY high tolerance to pain and has had MANY surgergies some of which were much more painful than this espeically this far out post surgery.
I continued to yammer on to no avail as we pressed forward hoping for improvements and better days.
On May 8 my plan was to attend the twins pre-k Graduation but alas my plans were foiled. Lora(one of Jophies nurses) and I were changing out the entire trach. I was a bit antsy about the whole thing knowing this was still on the tale end of that bad infection/swelling and even uttered the words.
"Gosh I hope when we pull this out the airway doesn't go closed ...... Or something"
Ah yea...Or something was about right on target......
AS SOOOON as I pulled the old trach out......OK maybe even sooner ....that darn hole started closing off. I was cleaning the area like Tammy(Jophies other nurse) had been doing every week for the last 6 weeks only this time the hole began closing right before my eyes! The darn airway looked as though it were collapsing on itself! Holy cow! OK so talk about freaked...I didn't have a smaller trach to put in which your supposed to have when you leave the hospital. Seems there was a mixup on what size the ENT doc "thought" he put in Jophie.
Anyway, I had NOTHING....Nada! NOT one thing aside from a drinking straw to hold that thing open. Can you guess what unfolded next???
Ah well if you've followed us long enough you know how crazy things can become in a matter of seconds. Can anyone say 911??? YEP! You guessed it. I had to call the squad and turns out we get this "high strung" new medic lady who was freaking out. OK when I called I said...."This is NOT a respiratory distress call" I just need him to be transported quickly and safely maintaining what airway he has left.
Well next thing I know theres a second squad in the driveway and every neighbor from here to timbucktooooooo was outside watching the show. You see I used to work for this EMS company and everyone round these parts knows that when 2 squads show up its either one of 2 things..... A code OR multiple patients from a car accident NEITHER of which was happening here. Oh boy........
On a good note they did manage to get a pediatric intubation tube into his stoma to keep that airway from collapsing completely on itself. My biggest fear was it closing completely and having to go through another surgery. OH and did I mention that in the midst of this madness I phoned Jophies other nurse AND his ENT who by the end of the conversation had me feeling like white trailer trash and very incompetent.
"Why DONT you have a smaller trach for emergencies?""Don't you have nursing??" "Maybe you should just let them put it in""I have a hard time believing that hole is closing that fast""I just don't know what to tell you about getting the "extra" trachs your insurance is not covering" "Don't you have some "social service" person you can call to help with that?""Maybe this just wasn't the answer to the prayers we thought it was""Maybe we should just let it be"
UM excuse me but I'm by no means an expert at trachs "just yet" however.....
1. I'm not stupid by any means
2. I learn very quickly
3. Up to that point we had changed the trachs out for 6 weeks with NO PROBLEMS whatsoever
4. AND, more importantly....I worked on the squad as an advanced EMT for 5 years and intubated more people than I can count so back off bub!
As for his other comments......I plead the 5th for fear of the many eyes reading this
Never fear though he's since redeemed himself "somewhat" but, I won't be forgetting it anytime soon.
Now off to the hospital we go! I sent Lora ahead in the squad with Jophie and I stayed behind to pack up really quick and answer all questions from concerned neighbors then off to the hospital I flew!
By the time I got there the ENT's associate had managed to get a pediatric trach in "BARELY" and let me just say, I can NOT tell you how happy I was to hear......
"Yes doctor C the hole "really" was closing up and I could "barely" get it in myself. "
**Insert evil grin here**
Needless to stay he had to be admitted and go into surgery the next morning where the "plan" was to replace the "small adult trach" .....WHAT?? You've got to be kidding me? Just prior to surgery I couldn't help but express my concerns and if I were being honest here I could see that BOTH mine and his concerns were legitimate however, that still didn't make me any happier.
His last words to me were....."I won't know anything till I actually get in there and look however, I will "try" and work out some kind of compromise to make us both happy.
At this point I did NOT care about "MY" happiness but rather Jophies Happiness and more importantly a "painfree" solution.
One last kiss and off I went to grab something to eat. It seems I'm forever turning my son over to the hands of surgeons these days all the while sitting in a waiting room chewing my fingers down to nubs. I honestly try to keep it together but I do much better when I'm not alone and unfortunately this particular surgery there wasn't anyone to come sit with me. I know I'm a big girl but with Jophie there is the potential for "anything" to go wrong and its just plain scary facing these things alone.
Regardless, the surgery went well and the surgeon came straight out to talk with me after. The very first words out of his mouth....."I guess everything happens for a reason"
UM yep! Especially in our world where God is in control
It seems that the "larger" trach had continued to bore into that ulcer not allowing ANY healing at all. It wasn't any better compared to his last office visit but, wasn't any worse and to boot......it had begun to bore into his windpipe. UGH...This poor baby ALL THOSE WEEKS was in horrible pain much worse than we knew but, because of his high pain tolerance we couldn't see just how much.
Because of all of this, the surgeon decided to leave the smaller trach in and and not muck with it to much. The plan was to leave the smaller trach in place longer giving the airway/stoma/ulcer some time to heal however, because it does not have an inner canula the chance of it plugging off increases the longer you leave it in place not to mention the risk of infection due to his colonization of pseudomonas. Phew! Did you catch all that?
OK if that isn't bad enough in the midst of ALLLL of this madness, My fight with Medicaid continues now into the trach supplies and determining what or how many of each item they are going to pay for. Thus far they are only covering 2 trachs per month and we need 4.
I actually had to cancel one of his appointments because we didn't have the trach to take to the office to change them out. AND, because of all his complications from the bleeding ulcer/infections ect, we've had to switch to a diff. brand which is more expensive/custom/more pliable/softer trach made of silicone. It reminds me of a silicone baby nipple so you can imagine how soft that is.
OK here is where the "switching this and changing that" comes in.......
The plan was/is to use the Bivona(Custom/pricey) trachs (The surgeon did send 2 home with us after this last surgery.) One he has already been using and the other is to be put up for an emergency as it's one size smaller and to be used only in the event we have a repeat of the airway collapse thing again.
I pray not!
Just prior to switching to the Bivona(Custom/pricey) the ER had placed a pediatric Shiley(Not as pricey). These are not as soft but they are still softer than the adult Shiley which was "Hard plastic" and much bigger......
The long term plan is to "swap" back and forth with these IF he tolerates the Shiley. So far the Bivonas are working the best for him and no bleeding. I'm leaning towards just leaving well enough alone and use those.
My next struggle will be to get medicaid to go from covering 2 shileys(Not as pricey) to 2 expensive Bivonas and IF for some reason they do then I need to also convince them we need "2 more". If they will not then I will have to come up with 2 more trachs each month along with the many other things I'm already purchasing. A donation from a dear friend has made it possible to purchase one trach and as a last resort I can donate plasma 2 times per week as long as I wait 48 hours in between. I know Tammy you are dead set against this but ya gotta do what you gotta do girlie.
For now to keep from going crazy I'm focusiong on ONE TRACH AT A TIME and going to rely on our next plan.....Yes a girls gotta have a plan lest I go crazy :0)
Now this brings me to the next Big adventure! Anyone who has followed me knows for the last year I've been doing this 'lifestyle" change ....Excercising and completely changing my eating habits/foods. Since last May myself and some close friends have faithfully followed this lifestyle change all the while creating delicious dishes along the way. Foods that anyone can make and ingredients that can be found at anyones local grocery and the best part is its GOOD! We have around 100 recipes and not just "a few" of this and that but a well rounded line of Main meals, deserts and snacks/holiday foods that everyone is sure to enjoy!
The past year we've learned so much all the while compiling recipes along the way. All of our tips/tricks and the foods that we are eating. Between us all we have lost lots! Personally, I have lost nearly 100 pounds to date not including all the inches that are gone and I'm still going strong!
Two of my friends have since met their maintenance weight and I'm happy to say they continue to maintain that! In fact my closest friend has dropped too low and we are working out ways to help her pack back on a few pounds to get her back to "maintenance". One thing we have found is that we literally "crave" these foods. I'm not sure why but we do and I can honestly say I am eating "MORE" than I have ever eaten and STILL LOSING.
In fact this is working so well that my sons pediatrician and my own physician are promoting our cookbook to their patients! Yes, you read it here first. Our very own cookbook! I'd LOVE to take all the credit but can only take credit for my portion alone :0)
I'm sure many of you out there have tried "dieting" to no avail hitting all the same roadblocks like "yo yo-ing" which I hate by the way. So, we sat down and said, "What foods can we NOT live without?" My answer was of course "ALL OF THEM"! I do love to eat :0) We also asked ourselves, "can we eat this way for the rest of our lives?" If the answer was NO then we knew we would be setting ourselves up for failure "AGAIN".
SO, we made a list of our favorite foods and started there! We tweaked and trialed and errored and taste tested using US and Tammys kids and hubby as guniea pigs......Those poor babies and her poor hubby. LOL
Anyway, as we started "figuring out" the tricks and learning what to add and take away and more importantly how to do those things "without" compromising taste and next thing you know the list of recipes begin to grow and the fat began to fall OFF. In fact it snowballed into one recipe after another all the while shedding one pound and one inch after another!
Just like that!
Granted we have had some major bad tasting flops and a few "not enough calories/not enough fat/losing to fast/losing too much issues but, you won't have to suffer through any of those like we did because we've already did the "tweaking" and paved the way! :0)
Now here is where it gets exciting! One of Jophies nurses said, "Why don't you do a cookbook and why don't we call it, "Meals 4 Wheels and Beyond" and, lets use it as a fundraiser for Jophie? Wheels being some sort of transportation for Jophie and Beyond to cover "all those other supplies/equipment".
What a great idea!
Not only will we be helping others with what I think is one of the worst problems in the U.S.(being overweight) but also it will be helping Jophie. Transporting Jophie at this point has become almost impossible and very unsafe. We aren't shooting for "brand new" in fact, I would rather go "used".
Our plan is to purchase a "wreck" and Tammys dad who rebuilds wrecks will fix it up for us OR a good used vehicle. We are stepping down to something a bit smaller than the van because of the economy and also because he can no longer sit in his chair while riding.
Once the vehicle is purchased/finished we will then have to have a lift/platform of sorts put on the back so the wheelchair can be hauled. Jophie will be lying in the back seat and his PT wants him to have a side lying seatbelt like those used to transport kids in spica casts to ensure his safetly. She is so not happy with our transportation but neither am I.
The next step after that will be to get medicaid to cover a Hoyer Advance lift that can not only be used in the house to do transfers but can also be used to transfer him into the vehicle and its portable to boot! He's nearly 100 pounds now and with all his tubes/connections/supplies/equipment its impossible to move him alone.
It's a big plan but nothing is too big for my God and I figured we might as well shoot for what we needed and not half way do it..... :0)
On a side note Sherrie(Jophies pediatrician) is working closely with us writing letters and such trying to get as much covered as she can. This is nothing new and not something we haven't tried before. In fact we have "CONTINUED" to do this for many years in an attempt to squeeze out of medicaid what is necessary and for the record when things are limited and/or denied the reason is almost always....
"That is considered a luxery" ???????
When is breathing considered a luxery?
When is preventing bugs from crawling into your airway a luxery?(yep they won't cover an HME to cover his trach when outside)
When is speaking a luxery? (I've yet to see a speaking valve even though they are "supposedly covered")
When is suctioning a luxery? (We are limited and told to "REUSE" these!) Omgosh can you believe it? My dear friend who is a missionary cracked me up this morning with her...."might we suggest THEY use them" ROFL!
And the list goes on and on and on......
It seems that medicaid has found this evil little "loophole" of sorts. A flaming one at that! When an item is ordered by his pediatrician and say she orders 10 of an item they will then make an executive decision "over" the physicians order stating you can have only X amount. Because of this "sort of approval" you can NOT contest it and/or appeal it because on paper they did NOT deny it but rather "limited" you on your quantities leaving you to cover the rest.
These are not trivial/luxery items as they so often state. I just wanna scream it from the mountain tops that these are not bicycles, bouncy balls and swingsets were asking for here folks but rather "life saving" gonna die without items!
Ah yes pass the prozac please........Breath in and breath out
OK back to business. Meals 4 Wheels is almost set to launch. There is a blog button ready complete with html so that anyone who would like to help spread the word can place it on their blog and or websites. We would so appreciate anyone that can do this for us as advertisment is going to be the KEY here. We also have started a support group which will be exclusively for members who purchase he cookbook. Our hope is that the group will help encourage and be supportive as you travel along through your weight loss journey. We've been able to do this "together" and I can't tell you how much easier it has been with full support.
We have an email already set up at email@example.com
We also have a P.O. box set up for anyone who doesn't have paypal and would need to send a money order and/or for correspondence.
Meals 4 Wheels
P.O. box 39
Kitts Hill, OH
You will also notice in our sidebar our Meals 4 Wheels Button
This will be clickable once we launch.
Fast Forward to NOW as the above portion of the blog has been written since June!......
All is well in the Jungle. Fall is here and there is so much to tell about the last few months. In fact there is so much its overwhelming soooooooo.........to follow the advice of my dear friend Tia and just so I don't wind up banging my head against the wall, I'm going to just do a big ole bullet post and then we'll all be caught up!
- April (Jophies birthday and baloon release--Jophie slept through his big day and the release went off without a hitch)
- Jophie continued to struggle with steroid withdrawls/trach issues/infections/Ulcers/Holes bored into his windpipe/bleeding/Crying/Whining/Nashing of teeth!
- Surgery #2 since hospital stay in March to replace old trach with a smaller pediatric one. (Success!!)
- Healing for Jophie was still in progress and the smaller trach was working much better.
- 3 appointments to see Dr. Chaffin (Jophies ENT/Surgeon) as he followed the progress so much so we don't have to go back for 6 months which will be spring! Yay!
- 2 of the trachs are still being denied.
- Jophie is using "ONLY" Bivona trachs now due to more trauma/bleeding when we tried to "swap" it for a shiley and NOW I'm leaving well enough alone.
- As of late he's been sitting upright for about an hour at a time! Yay Jophie!
- We've had 2 unplanned outings with Photo shoots and he's done well.
- Today we had another outing and he loved it!
- Our deck/ramp is being replaced due to bad work when we orginially had it done. At this moment I have a huge trailer in my yard stacked full of lumber and other construction looking "stuff"!
- We have another outing "sort of" planned on Thursday depending on "IF" the ramp has a floor so we can get out of the house. If so we are headed to a local Lake. Not to swim but rather to walk around and hopefully Jophie will enjoy the weather/scenery. It's beautiful there and has been fully revamped to accomodate wheelchairs even out on the lake/spillway and Dam. Who knows we may have to toss a line in from his Tigger fish pole just for good measure ;0)
OK thats it for now! I have tons and tons of really cool pictures to share but, I'm gonna save those for future posts and I must say............
It sure feels good to be blogging again!
Keep an eye out for our Meals 4 Wheels launch!