*warning, long post ahead*
So.... if you're on Facebook or read the last few posts, you can probably gather that we've had a lot going on this summer. I mentioned in
this post that Em would be facing a rather hard summer.... and the reason for that was after a follow-up from her latest sleep study (her daddy went with her for the first time and they had fun, as you can see)
But the follow-up was rather grim, the results were terrible and some of the worst apnea he'd seen, and this was after a floppy voice box repair done last October. This was after a
sleep endoscopy that was performed last August and they were sure the floppy voice box repair would fix her problems and prolong their need to do a facial reconstruction (you can read more about that
here).
So a sedated MRI was scheduled, and re-scheduled..... and then rescheduled two more times! This was after a cold and then croup, and forgetfulness. So it didn't happen until August, when initially it was supposed to happen in June.
Around this same time we also were dreading another procedure. Remember how it was mentioned that since Ryker came, Em had been pulling her tube out a lot??..... well, we decided to do something about that, and talked with Dr. O'Gorman about some non balloon port tubes (the mickey button that Em has uses a balloon to keep it in place.... so once it is inserted into her belly, you use a syringe of water and place it in the port to fill the balloon up). There is benefits and downsides to both kinds of buttons, so we researched a lot, and decided that a non balloon was worth a shot. The biggest thing with the non balloons, is they are really hard to pull out accidentally, but if they do come out, it is a lot more painful, and they can only be replaced at the hospital (the balloon ones we can replace ourselves, and they are not without pain to come out or put in, but from the sounds of it, the non balloons are a lot more painful, but again, harder to come out). So Em had a non balloon placed back in April, and for the first day or so, it worked great! But not so much after that, and it began leaking like crazy. And I'm talking really leaking, like she wasn't getting any food at all, and was going through around 10 outfit changes a day! She had never had a problem with leaking, so I called them of course, by this point it was the weekend, so I had to call the hospital and get the on-call gastro. He said since they had to go up in size, she was probably just a bit stretched out and it would take awhile for her to close-off again and not to worry. But when I told him her skin looked terrible, he said maybe we should get in to see the wound team at Primary. So that is what we did, and luckily they squeezed us in that week. Their thought was that the button was too long. They had used the same length as her Mickey had been, but since there is not a balloon to pull it tight up against the stomach (it had a flat disc to keep it in), it was too long. Unfortunately we were already having issues with the insurance covering more buttons because Em had gone through so many mickeys when they were getting pulled out so often (insurance only covers 4 a year, and by April we had already gone well over that), so they didn't think the insurance would cover a change so quickly.... even though, the blame should be on the Dr for putting the wrong size in in the first place! So they gave us some thicker pads to try and get it more taught, and of course many, many creams! But this is when it was first noticed..... a dark spot right near her stoma that they were unsure as to what it was. They wanted us to see her dermatologist about that, and they worked their magic to get her in the next week (Dr. Vanderhooft usually has a 4-6 month waiting list!).... so of course that worried me a little. Things really went south though before we even made it to the next week! So Sunday we headed for the ER..... our reason for this, is that we believe Em had had very little food or drink for 2 weeks at this point, and this is what her stomach looked like
Yeah, I was worried she was getting cellulitis. At the Primary ER, they could all agree on one thing, that button needed to come out.... we had not been able to keep from leaking at all. They couldn't do it then and there though, because they knew it would need to be done under anesthesia, and they neither had a surgeon that could do it, nor an anesthesiologist that felt comfortable with Em's airway. So they made room for her on Monday's schedule at 6 am, and she finally got that sucker out!
It was easy to see right away what the problem had been, the thing was broken!!! INSIDE her stomach! So not only did they have to take out what they could from the outside.... they also had to go in and remove the fragments from the inside! That dang thing was probably broken from the moment they put it in.... because how it works is, they put it in and then use a tool to crank open the disc, and it probably got broken as they were cranking it.... I felt so bad for my little girl :(
But things got much better after she went back to a balloon port, and we decided that we would just do our best to keep it in from now on. So we got to the dermatologist later that week and found out that Em had a staph infection in her skin, so they put her on antibiotics for that.... but still the best dermatologist at primary didn't know what to make of that dark spot either, so she thought it would be best for us to see a surgeon and get it surgically removed and biopsied..... yup, panicking at this point! I made no hesitation in making an immediate appointment with Dr. Downey (this is the surgeon that first put Emarie's g-tube in when she was 3 months old). They were able to fit us right in because apparently they had already received a fax from Dr. Vanderhooft.... great :/ And at that appointment, the C word was used..... I could hardly believe my ears..... Cancer? Really? Could this girl possibly have that when she deals with so much else?? I was downright angry! This was most certainly not fair!! He said he wanted to remove and biopsy it as soon as he possibly could..... he could do it the next day at Utah Valley..... too bad that was no go! There is not an anesthesiologist that will touch her outside of Primary. So he asked his nurse when the next time he would be at Primary would be, and it was the following week, but she said they were full.... he looked at the schedule and said, "bump him, this is more important to get done."...... WTH??! You can imagine how this is all making me feel like everything is collapsing around me and I can't breath or focus on anything..... the world stopped spinning, everything disappeared.... all I could see.... hear.... feel.... was my baby might have cancer.
And of course this happened smack dab at the same time that she got croup and whatever else! So that awful procedure had to be rescheduled again and again as well.... but we finally faced it in July, and then let the facebook community know what was going on with this post:
Sorry for the picture overload, but we had a hard time choosing (and you can probably see why!). Our cute little "Super Girl" would truly appreciate your thoughts and prayers this week as she has some big deciding procedures (one on Wednesday and the other on Friday). I have hesitated to say what these are before now because it increases my stress over it.... but on Wednesday this sweet girl will undergo her 20th surgery for suspicions of cancer, please I am asking to not be bombarded with questions on this now, since I am already freaking out. The procedure on Friday will be a sedated MRI to see if she is going to need that dreaded facial reconstruction much sooner in her future than was previously anticipated. We really would like a good outcome from both of these procedures as you can imagine, thanks in advance my wonderful friends and family
So the sedated MRI didn't end up happening that week because we forgot to turn off her feeding at midnight.... out of well over 21 anesthetic procedures, that is the first time we've ever done that.... so although I was really frustrated, mostly because of the previous procedure though.... I had to hand it to myself, that that is not bad! So she had the MRI in August.... and sorry I know this is getting really long, but bear with me!
Here are some pictures from the biopsy, and yes she wore her super hero cape into the OR!
And well it took over two weeks, but we finally got the results that amazingly (even with 95% assurity that the results would be malignant) the mass was
benign!!!!! So that was one hurdle!
This was the very spot and moment where we received the news! And doesn't Ry just look too cool for school in this picture!
After her MRI. She usually has a hard time waking after these types of procedures because they use an anesthesia that induces a more natural sleep.
But fast-forward to August when she had her MRI, then a couple weeks later, her follow-up, where come to find out, they would like to try another tongue reduction and they think this could offset the need for a facial reconstruction for a few years *big sigh of relief*...... until I get a very detailed (with pictures) description of what a real tongue reduction is, and it sounds horrible. It is a very tricky and potentially dangerous procedure, with a significant chance it might not even help. She will have to be intubated, spend a few days in the PICU, and have a possibility of up to 2 weeks total in the hospital, but knowing my little girl, it could even be longer. All this coupled with the fact it might not even do what they are hoping it will..... well you could imagine my hesitancy, but I went ahead and set a (tentative in my mind) date for October, cried the whole way home and then got my big girl pants on and set straight to work when we got home. I researched and couldn't find much, so then I did the next best thing (actually probably the best thing and what I should've done first) and consulted the true experts.... the parents..... the special needs parents to be more specific. So I posted on the Ch18 FB page and two other general special needs parenting pages. No one had ever heard of this procedure, but all agreed it sounded scary, and there seemed to be a consensus that I should seek another opinion (which I was already planning), but thankfully the Utah Kids page was able to give me a few options of doctors that we could get a second opinion from. I also asked Em's (and Ry's) wonderful pediatrician at Ry's 9 month appointment and he too recommended a doctor that a lot of other parents had recommended. So I made an appointment and luckily they were able to squeeze us in October 5th, a mere 3 days before the suspected surgery date.
Sadly, the world collapsed again a few days later when I got a call from Dr. Muntz's surgery scheduler saying that they could not get the pre-authorization from the insurance because she was told our insurance had terminated. *
Panic* "That has to be a mistake" I tell her..... though I'm sure she can hear in my voice that I'm not so sure, but I told her I would check on it and give her a call back. But my worry was completely confirmed when I went to the pharmacy later that day to try and pick up Em's vital Singulair and was told the same thing by the pharmacist....
we no longer had insurance. And this is the point that I had a very public panic attack/meltdown and had to leave without getting that precious medication. And the next day is when the letter finally came saying that our coverage actually ended at the end of July, which means all those procedures that happened in August were not actually covered :/ You can probably gather why this may be a big deal, but one little thing is Em can certainly wrack up nearly $10,000 in medical expenses monthly between her medical formula, her feeding tube supplies, her medications and therapy and clinical visits that happen on a monthly basis. And this is a
good month, that doesn't include sickness, or surgeries, or hospital stays that come with both of those often.
So we cannot be without insurance, but what do we do? There's Medicaid, which we have been denied for at least 3 other times, but it's pretty much the only hope we've got. So I have been working like crazy to get that process going yet again, but still have a lot more to do, and it can take awhile to get approval, even though it will retroact to when our insurance ended at the end of July. Thankfully because the amazing friends (really family) and network we have, we will be taken care of as far as formula and supplies go for a bit.... did I mention how much I love the Utah Kids group?? As well as certain Ch18 family that have come to our aid as well. Aside from the Singulair, thankfully I had refilled a lot of 3 month supplies of Em's medications before this all happened, so we should be ok there for a bit too.
I won't think about what will happen if we don't get approved for Medicaid, hopefully CHIP will be the backup, and the only backup we'll need. We cannot get on private insurance because all of us (save for Ryker) have pre-existing conditions. Our only options before were group plans. Sadly Steve's work had to stop offering insurance in 2010 (thanks mostly to us most likely, because after Em was born, United Healthcare raised the companies premiums 25% each period, and there came a point where the company could no longer afford it for everyone), but they pay into his salary what they would've put toward insurance. So when our coverage ended through Steve's work, we had to go with my work's group plan, and since I wasn't a contracted employee, we had to pay the full premium, which wasn't cheap (but $1,500 is better than $10,000!), so that is what we've been doing since then, and one of the major reasons we were forced to sell our home and be renters/squatters since then ;) But of course I quit my job with the school back in November when our sweet little Ryker was born, so we knew our coverage would eventually have to end, we just thought we still had time.... stupid, I know!
But we have had so many people offer to help us in this crisis mode! I have learned some good connections thanks to more advice from the wonderful parents in the Utah Kids group (very lucky to have found that group!). I am also in contact with someone to get Em on the DSPD wait-list.... sadly all of these programs that are offered are so hard for the people that really need them to get them. I had a caseworker help me with the paperwork for Medicaid, which I remember was a nightmare the last few times I've done it, and I don't know how people are able to get it so easy when they make it nearly impossible to apply! If it weren't for this caseworker's help, I am sure it would have not gotten done as quickly, nor as efficiently. She has also taken sympathy on our situation and thinks we have a real shot, so keeps us in your thoughts and prayers if you so wish.
After all that, I'm sure you'll be surprised to know that the summer hasn't been
all bad! We've been swimming, and jumping on the tramp, and playing, and vacationing in Park City (still hoping to get a post done about that, but again, don't hold your breath!).
Playing in the backyard with the cheapo pirate pool I got for $6
And then we decided to get a "real" pool when we saw pictures of our friends The Wolfs in a pool like this, I knew Em had to have one! We got it from Amazon BTW.
And this is when we went to Cowabunga Bay for their "Autism Night". They rented out the whole park and all special needs families were invited to come, it was only $5 a person, and that included admission to the park and dinner, as well as other goodies they were giving out to everyone. Too bad it started to storm right at the time we were going, and it was a bit cold! But thankfully the water was warm and the kids didn't seem to mind too much! Both of them went down some big slides with mommy and daddy's help :)
And then there was this amazing thing, where we got to share our miracle girl with the world! Thanks to the help of Joanna Rudnick,
Kartemquin films,
Rick Guidotti and NBC's Rock Center. This was amazing! Click the picture below to be taken to the article and clip of the profile they did on the amazing Rick, that features a very cute, 18 month old Em!
So that was our summer in a nut shell, and also I have started a new job that I can work from home :) I am working on the customer assistance team for the car dealership Ken Garff as a call grader. I listen in to the recorded calls and grade the ones that are sales related, and determine other things for the ones that are not sales related. Basically my job is to make sure the customers that call in are well taken care of. I have to send a lot of emails out to others in the dealership, and listen to a lot of funny things! Just a fair warning, when you hear that familiar saying that, "This call may be monitored for quality control purposes.".... just know that the entire call is recorded.... when you're talking with the person, when you're holding and even before the call is even answered! And someone IS listening and just might have grounds to laugh at you ;)
