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Friday, June 26, 2015

Radio silence and playing secretary

I've been pretty quiet lately. It hasn't been completely intentional. It's been a pretty wild & busy summer by our family's standards. There have been some really awesome things that have happened, like when I was invited to fly across the country to speak at a sales meeting for a large company that manufactures many of the products that we tubie families depend on to keep our kiddos alive & thriving. That was a great experience for me. Like, really great. As it turns out, I love public speaking! I always have, but give me a topic that I'm passionate about and I really REALLY love it! That is something I really hope to have more opportunities to do in the future.

We also got to have my mom come and visit while I went on my little mom-cation for my speaking engagement. She held down the fort while Donny was working and she even got to experience the joy of re-inserting an accidentally dislodged G tube while I talked her through it over the phone. I was so proud! It was a rather humorous situation, actually. She called as I was opening the door to get in my friend's car at the airport and come home. We had JUST gotten started with the tube replacment instructions when her phone battery (which needs replaced) started to die, so she had to get Raya to move next to an outlet so she could plug her phone in so we wouldn't get cut off. Then she had to put it on speaker phone, and we kept having to tell the kids to be quiet. Especially Raya. "Raya, sweetheart, you need to stop talking and let Mommy be the one to tell GramE what to do, okay?" She is such a funny kid when it comes to her medical stuff.

We've kept busy with swimming lessons, summer movies, pool days, lunch & library time, piano lessons, staying out of the blistering heat, and (of course) a plethora of doctor and therapy appointments. We are having a good summer and it's wearing me out. All that busyness, combined with the fact that I hadn't completely gotten over my cough that I got in May before I came down with an awful sinus thing this past week, and that 3 of the 7 of us have not slept well this week (well, really there are 2 of us that haven't slept well in about 5 1/2 years...) and yeah, just not enough steam left at the end of the day to write about it all.

Oh but then there's this funk I've been in, thanks to my unofficial full time job. The phone calls. I have spent SO MUCH TIME on the phone trying to keep everything under control for Raya. At the end of May, it was the IEP stuff. We had multiple meetings, it was super stressful, I had to run around collecting doctor signatures, etc., but we got it done. I thought I'd have a month or so to just breathe and not stress about any of that stuff until I got a phone call last week having to do with eligibility for services that left me in tears for a few days. The first day, it was a full on ugly cry, first to my sweet friend over the phone and then to my poor husband. I don't want to share details but this is what I will say. When you live every day of your child's life with the purpose of keeping them as healthy as you can in spite of their medical conditions, helping them overcome the physical and psychological effects of those conditions, and trying to undo the damage that living in survival mode has done over the years; and when you've seen just how much they BENEFIT from the therapies and services they receive and you KNOW they would not be where they are without them, the threat of having those things taken away is gut wrenching. Terrifying. Beyond stressful. It feels like someone shot out the light bulb at the end of the tunnel that you had just started to be able to see, but nobody from the light bulb company will tell you why, or how to get a new one. They tell you that you might be able to if you provide them with the right proof that you need one, but then you're left to yourself to figure all the rest of it out. It is burdensome and unfair to the child who has worked his or her butt off, literally every week for the first years of life, and made amazing progress to then suddenly have the rug yanked out from under their feet because they're doing just well enough to not qualify but not quite well enough to continue progressing and thriving without services.

Because that news and the onslaught of responsibility it added to my plate wasn't stressful enough, I got a phone call this week from the home health company we have used for 5 1/2 years, since the day Raya was discharged with her very first NG tube at 2 months old, notifying me that due to disagreements between her secondary insurance company and the home health company, we are no longer able to use that company. Nothing has changed contractually. We have had the exact same combination of insurance companies and home health company for 4 1/2 years now, and it makes absolutely no sense that they (both the insurance company and the home health company) are making us switch, and it is really disappointing. I don't like changes when it comes to Raya's medical care. I've had many moments of frustration over the last 5 1/2 years with the company we were using, but overall they treated us very well and we always got what we needed. There were many times when I called and asked them to try and get us new things to try out, and they almost always came through. Even though they made silly mistakes like sending us diabetic socks instead of drainage bags, they got us what we needed and that is what kept me with that company for so long and through the frustrating moments with them.

Now, we are being forced to switch to the only company contracted with her secondary insurance. Based on previous interaction with the staff of their enteral division, I am not happy about this at all. The new company makes no effort to hide the fact that money is their priority, not the needs of the patients they serve. It is really disappointing to feel like you really are just a number and a paycheck. In my first 2 interactions with their staff this week, I repeatedly heard, "Well, I know the other company got you that product but we won't order it because it's more expensive than xyz alternative product and the amount we get reimbursed by insurance is low so it's not cost effective for us." I understand that concept, but good grief, you think that's going to make a new client feel good about getting supplies from you?? We were able to overcome our first hurdle with them concerning the type of pump we are getting, and for that we are grateful, but I'm still not over the disappointment of feeling like we were let down by the other company and the insurance company and being forced into a change that I didn't want to make. I'm sure it will be fine once we adjust to the change.

That's a little sampling of the things that have stressed me out this month. Somehow, words don't do justice to how dealing with that side of things makes me feel or the toll it takes on me mentally and emotionally. As I was taking a short break between phone calls to get food for one kid, wipe another kid's bum, and talk to all of them so they'd feel like I'm not neglecting them, I had a bit of an epiphany. Is there a word like epiphany that has a more negative connotation? If so, then that's the word I'm looking for. Every time I take Raya to a doctor's appointment, no matter which doctor it is, they always want to know if she's making progress with eating by mouth and with using the toilet. The older she gets, the worse those conversations make me feel as a mother. Often, I walk away from them going, "What is wrong with me that my 5 year old eats about 50 calories a day out of the 1350 she needs in order to grow, and she's still in pull-ups 95% of the time?! And my house is a mess and I haven't done half the things I've wanted to do with my kids this summer and I haven't taken the last 3 classes I need so I can apply to nursing school, and the kids have eaten burritos for dinner 3 times already this week, and all the other things I feel like I'm failing at."  I realized as I hung up the phone from the 4th or 5th phone call that afternoon that maybe if I wasn't doing the full-time job of coordinating care, advocating for what she needs, scheduling appointments, going to appointments, calling insurance companies, calling home health companies, waiting for deliveries, and so on, I would be able to be more consistent with actually caring for her needs. I imagine there is a fine line between that statement and making excuses for myself, but the last 2 weeks have pushed me to my breaking point and made me question how I am EVER going to get her toilet trained and off of her feeding tube. And I won't even talk about how crappy I feel at the lack of attention I am able to give to my other kids' needs because that's a can of worms that I don't have the energy to deal with.

THIS is the part of special needs parenting that I had no idea was coming. I knew seeing her sick/hospitalized/hurting would be hard. I knew the unknowns of her medical conditions would be hard. I knew that caring for her needs would be taxing. I had no idea that coordinating her care, being her unofficial case manager, and fighting through red tape year after year would be so. damn. hard. It shouldn't be this way. On one of my really tough days last week, I told Donny that all I want to do is take care of my kid. I am so tired of fighting for every single thing. I just want to be the mom for a while and not have to even think about all of the paperwork.

All that said, I would do it all again (and believe me, I will continue to) and I would do it for every single one of my kids. (I hope they never feel like I'm not as devoted to them as I am to Raya because I really would do anything for any of them.) It's just exhausting and I am worn out. I actually could have fought being forced to switch home health companies, and originally that was my plan. After thinking about it for a day though, I just couldn't do it. I gave myself permission to give up that fight, and I'm actually pretty proud of myself for that. I waved my white flag and we are making the switch, and so far I've managed to keep a pretty positive outlook on the situation. I can only pray and hope that the rest of the fires I've been trying to put out lately will turn out as favorably.

So all of that pretty much sums up why I haven't been writing. I've been going through some stuff, and sometimes it's just easier to stay quiet and process things privately than to try and sort it all out or try to make like everything is fine. Things WILL be fine (I hope), but the last 2 weeks, it has not been fine. It has been hard. I keep telling myself that when I am getting more sleep on a regular basis, it will change my life. I've also brought back my 2010 mantra of "It won't always be this way" because yeah, sometimes I just have to remind myself of that. It won't always be this way. It will be better, it will be worse, and it will be everything in between but it won't always be the way it is right now. Overall, right now is good, and I'm happy with our "right now."

Sunday, June 21, 2015

The dad who also feeds Raya

I think have done a great injustice on this blog. I think I've made it sound like I'm the one who does it all. I'm not and I don't. I'd be lost without this guy:

We were kind of just babies when we got married. I don't think we really had a clear picture of what we wanted out of life, but we knew we didn't want life without each other.
I chose well, and I like to think he did too. We make a good team. The kinds of challenges we have faced in the last 5 or 6 years have tested us in ways we had never been tested in. I think we have also found joy in places we hadn't found it in before though, and I think we have gotten better at being happy in whatever our circumstances happen to be. We've learned to lean on each other and to trust in God and His plan for our family.

I am a stubborn person. Too stubborn for my own good much of the time. Remember how I make it sound like I do everything? That's because I TRY to do everything. Sometimes I can manage what I take on but most of the time I fall short in places that I wish I didn't fall short in (i.e. keeping a tidy, clutter-free house and forgetting to do things that I said I was going to do). With all the things I'm juggling, I feel like I'm constantly dropping something and barely keeping my head above water. I've been sick for about 6 weeks now too and the kids are home for summer break, which is wonderful but demanding, and I know I'm not the easiest person to live with. Somehow, Donny finds the patience to handle me though.

He has always been a very hands-on dad. He started changing diapers from day 1 of fatherhood (okay, maybe more like day 3 or 4 because nurses & our moms were changing them the first couple days). Things got off to a little bit of a rough start with our first one and he was always right there to help me when she didn't want to eat for those first few weeks. He has cleaned up a lot of puke and poop too. He has never batted an eye about being on his own with the kids, whether it was for a few hours or a few days. Bodily fluids sometimes make him cringe and/or gag and I know that seeing his kids hurt is particularly hard for him, but he does what needs to be done when it needs to be done.
baby #1 in 2003
He never complains about anything and he listens to me when I complain about lots of things. I have had some rough days in the past couple months dealing with the paperwork/eligibility/logistics side of things and even though there's not usually anything he can do to fix the problems, he knows exactly how to help me work through the panic mode I always go into and he's patient with me and my panic mode. I know that can't be easy!

He teaches the kids things. He encourages them to find and develop new interests and he helps them figure out how to do that. He teaches them to set goals and make a plan to reach them. He teaches them to talk positively to themselves and about themselves, and he just genuinely loves them for who they are. He sees their potential and tries to show them that they are not limited in what they choose to do or accomplish in life. He is a constant, steady positive influence in my life. This is the part where I would normally say something like "I could never do it without him!" but I can't say that. In the last year, we've seen a young family member with young children be faced with that exact situation. It happens, and it can happen to anyone, so we never say never. We've always had a morbid sense of humor about the subject, which I think has been healthy for us because it has allowed us to talk about an awful but important thing. So, all that being said, I am pretty sure I could survive without him, but I sure hope I never have to because he is my partner in all this craziness and he keeps me from losing my mind. I knew I made the right choice by marrying him and nearly 14 years later, I am still seeing every day why that was the right choice. Marrying young brought unique struggles but in a way, we have grown up together and I wouldn't have had it any other way.

Thursday, June 4, 2015


Until I entered the world of parenting a child with medical challenges, the word "aspiration" meant a goal or something I hoped to become. I probably had heard of the other definition but I had no experience with it. (or at least I didn't think I did. In retrospect, I'm pretty sure Ashtyn has had aspiration pneumonia before but I digress...)

According to Merriam-Webster, definition 2c of "aspiration" is: the taking of foreign matter into the lungs with the respiratory current. That is the definition we are dealing with this week. It's not Raya though...

(I propped her up against the door and took her picture in her pretty dress)
I've known since Piper was born that something was not right with the way she swallowed. Her suck-swallow-breathe coordination was not good when she was a newborn. She squeaked. She coughed. She held her breath. She refluxed. She sounded rattly and wet. At 2 weeks old, she got sick with nasal congestion (another sign of trouble) and when she drank bottles while she was sick, she turned shades of blue on me that none of my babies had ever turned before. It was scary, and I don't scare easily. I knew it wasn't right. I made this video when she was 3 days old to show to her pediatrician:

She also was unable to nurse after the first day. She made great efforts for about 24 hours and then never latched on well again, despite numerous attempts. I am still convinced that she had a tongue and lip tie that was preventing her from forming a good latch. I talked to her pediatrician about the loud breathing, inability to latch, and all of the abnormal noises she made while she ate and after she finished eating. Each time we discussed it, he reassured me that as long as she wasn't getting pneumonia, she was okay. I mostly agreed. I knew that if we did do any testing and it showed that she was aspirating, we would be looking at another kid with a feeding tube. Obviously I am eternally grateful for Raya's feeding tube because it has saved her life every day since she was 2 months old, but it is not a road that I wanted to go down a second time. It hurt my heart in a way that I can't put into words to think about doing it again, and I kept pretty quiet about the whole thing. The emotions of having another baby after you've gone through having an undiagnosed chronically ill child are complex and indescribable. Logical or not, I was afraid people were going to think I was being a hypochondriac about Piper and so I really only talked about my concerns with Donny, my sister, and my closest and most trusted medical mama friends. One of them was even kind enough to loan me her pulse oximeter for a while so that I could have peace of mind. I told her ped that I had borrowed a pulse ox and then felt like he probably thought I was a paranoid nut job for doing that. (he probably didn't, but I wouldn't blame him if he did because he had never met me before Piper's 1 week well check)

The pediatrician and I agreed that if things seemed to get worse as time went on or if she got pneumonia, we would do a modified barium swallow study (MBS). Wait and watch. Part of me hated that plan, but I also knew that there was no use jumping into a bunch of testing if we didn't see ill effects from what may or may not have been happening and so we waited.

In some ways, things did get better. She eventually stopped squeaking while she was drinking her bottles and as long as we didn't use anything but a slow flow nipple on a Dr. Brown's bottle, her choking became minimal as well. Piper has done everything at her own pace. She didn't hold her own bottle until she was almost 8 months old. She didn't start crawling on her hands and knees until she was 11 months old. At 15 months, she has taken 2-3 small steps a couple of times but is not walking yet. She has never fallen into the category of being delayed, but she is at the slower end of the curve. (for the record, I'm totally okay with that. babyhood is not a competition.) I tried to advance her to a medium flow nipple but each attempt left her choking and sputtering and sounding wet so we went back to the slow flow. At the age when the Babycenter emails were telling me she should be switching to a sippy cup, we were still very much dependent on slow flow bottles. 

Drinking liquids was not the only thing that concerned me about her swallowing. I don't remember when it started, but at some point, she started to occasionally gag and vomit during meals. It always seemed to happen when she was down to a couple bites of food left on her tray. The last Cheerio on the tray would bring her entire meal back up with a vengeance. It started happening once or twice a week and we knew it was directly a result of the way she swallowed, as opposed to a sensory issue, volume tolerance issue, or food allergy issue. (we kind of know what those vomits look like at this point, ya know?)

As her first birthday approached, I was once again fighting a nagging feeling that the swallow issues were not improving enough for me to continue ignoring them. When she got her 3rd croup in a 5 month span, I decided I'd had enough of the waiting for pneumonia. The day of her 1 year well check, she was sick with croup. I asked the pediatrician if 3 croups in 5 months could be evidence of aspiration. He didn't think so. I told him I was ready for him to order a swallow study and he obliged. I don't think either one of us really expected abnormal results. 

The MBS almost didn't happen. His office faxed the order over to the clinic I asked him to send it to, where Raya has had all of hers done and that clinic was supposed to call me to schedule the MBS. Their radiology department is notoriously awful at scheduling things and following up with people, so when I hadn't heard from them after a week or two, I called them. I left multiple voice mails and waited for a return call that never came. In the mean time, I was slowly but surely talking myself out of the swallow study. I decided I wouldn't bother with it until we went back for her 15 month well check and that I'd have the doctor re-fax the order then. A couple weeks before that, Raya had a routine follow-up appointment with her GI doctor. We were almost finished and Piper was getting crabby, so I gave her a small drink of water out of my water bottle. She coughed and sputtered and spit water everywhere. Raya's GI looked up from what she was doing and said, "Does she have a swallowing problem?" I explained that I had suspected swallowing problems and we had finally decided to go ahead with a swallow study but that radiology had never returned my phone calls about scheduling after the doctor's office faxed the order over. She went straight out into the hallway and asked one of the ladies at the nurses' station to track down the clinical nurse manager. She came in and got my contact info, Piper's info, and the pediatrician's info and told me she would follow up with me. 

Sure enough, the next day, she called me back and said that radiology told her there was no order for Piper's MBS but that she had called the ped's office and they had faxed over another one. We got it scheduled for May 19th. Then I got sick and Piper got sick, so I rescheduled it. (Read: I found out how much we were going to be paying out-of-pocket and wanted to make sure we got an accurate study!) Then she was still sick so I reschedule it again, this time for 2 weeks later. As the new appointment date approached, she still had a very wet-sounding cough. I almost called to reschedule again, but then decided to go through with it since her wet-sounding cough had not improved at all in 3 weeks and was noticeably wetter-sounding every time she drank a bottle.

I was not thinking clearly when I agreed to a 10:15 check-in time for 10:30 MBS on the same day Raya has therapy at 11:00 but by the time I realized that's how it was going to happen, it was too late to do anything about it. Thankfully, we have understanding therapists who happened to have some flexibility that day so we just came a little bit late to therapy. 

Poor Piper was not a happy girl. This kid LOVES food. She LOVES her bottle, and you just don't mess with her and her food. She could not understand why nobody would feed her that morning. She had to be NPO for at least 4 hours before the study, and I didn't wake up early enough to wake her up so she could have a bottle before the 4 hour cut-off so she was STARVING by the time we got to the clinic. 

 The speech therapist who did her study was not one that I had worked with before but she was really nice. She had a graduate student with her and there was also a radiology tech in the room when we went in. They got Raya set up with a portable DVD player in the other room while I got out all the utensils & supplies I had brought for the swallow study. They kind of laughed at how prepared I was (in a nice way, not like they were laughing at me. I think.) but I told them it was not my first rodeo. They were talking about how they'd had a mom in there the day before who was watching the screen and commented about her child aspirating before the radiologist or speech therapist could say anything. Yeah. Been there. They had all the barium ready and we were going over Piper's history while I got her out of the stroller. I told them that fatigue seems to be a factor in how she swallows, and that she seems to swallow more poorly as she goes along, so they agreed that it would be okay for me to feed her a couple ounces of milk before we started the barium. Holy smokes was she ever excited to see that bottle! She grabbed it and sucked it down like she hadn't eaten in a week. 

After she'd had her little snack, I strapped her into the special seat and the radiologist came in. I positioned myself so I could see the screen but I didn't have enough hands to video the screen like I wish I could have. In case anyone is not familiar with what the setup is like on a swallow study, here's a picture of Raya during one of hers:
Ok, not the most helpful picture but the surface to her right (on the left of the picture) is the x-ray table turned up on its side. The camera is on her left (right of the picture), I stood facing her in the exact spot I took the picture from, and the video screen is behind me and to the left of the picture.
We started with ultra thin barium, which is the consistency of water. She grabbed the bottle out of my hand and started chugging away. She swallowed fine for about 3 or 4 swallows and then I saw the first little bit of barium go down the wrong way. I think I let out an audible groan at that point because I knew it was not good. Before I could even finish saying, "That was an aspiration, wasn't it." she did it again. And again. At least she coughed a couple times. The radiologist was dictating notes to his tech as Piper drank the barium, and I had to fight back tears as I watched her aspirate again and again on the screen. I didn't swear though, which is what I also felt like doing. 

They had me take the bottle from her. She did NOT want to give it up! I handed it back to the speech therapist and she dumped it out and poured in the next consistency, which was "half-nectar". I handed the bottle back to Piper and she happily drank it. We watched on the screen as she aspirated the half-nectar consistency about 3 times in a row. She never coughed that time. That means her body was not trying to protect itself by coughing to clear the liquids out of her airway, and that is bad. *more swear words*

Once again, I had to pry the bottle out of her little hands. That child has the most non-discriminating taste buds of anyone I know. The speech therapist switched to nectar consistency and Piper gladly took the bottle back from me. This was the only point during the study that I got nervous. Nectar consistency is not a huge adjustment from not thickening, but honey is. I know there are kids who live off of honey consistency thickened liquids, but I watched the screen feeling like nectar vs honey could be the difference between a kid who continues to drink liquids by mouth and one who needs a tube for liquids. To my great relief, there was a noticeable difference in how she was able to swallow with the nectar thick barium vs the half nectar and ultra thin. It went right where it was supposed to go. 

After that, they handed me the cup of pudding thick barium and Piper's spoon. I moved the spoon toward her mouth thinking that she would pull the bottle of barium out of her mouth when she saw it coming but she did not. She just sucked harder on the bottle, like her brain was confused and couldn't get her mouth and hands to do what she wanted them to. I pried the bottle out of her hand while she screamed at me, and then cried her little brokenhearted cry. I fed her a couple of spoonfuls of the barium and she gladly ate them and stopped crying. Thankfully, the pudding thick barium went down great as well, meaning that she is safe to continue eating pureed and mashed food. After that, we moved on to the barium cookie. I gave her a small chunk to eat and she swallowed it pretty well. I gave her another chunk and that kind of pooled in her throat before it went down but none of it went where it wasn't supposed to, so she is safe to continue eating solids as well. She insisted on finishing the last piece of the cookie even though we were done at that point. I have never seen a kid so enthusiastic about drinking barium, nor have I ever seen a kid get so upset about having it taken away! If there is ever a zombie apocalypse and barium is the only edible substance left on Earth, Piper will be okay.

So where does this leave us? It means we are thickening her liquids for 3-4 months to nectar consistency since she is able to swallow that safely, and then we will repeat the swallow study to see if she has improved. How am I taking it? Pretty well, I think. Right after the MBS, I was torn between being sad that she failed it and wanting to shout "I told you so!!" from the rooftops. I'm not crazy!! I was RIGHT, although I certainly did not anticipate Piper's swallow study being worse than Raya's worst one but it was. (ouch, seeing that in writing stings.)

Honestly, I think we have the best case scenario though. Since Piper never nursed, I have been pumping and bottle feeding all this time, so throwing a little thickener into her bottle is no big deal. We don't have to try and convince an exclusively breastfeeding baby to take a bottle of thickened milk or formula, and that would be a MUCH bigger challenge. I may be wrong about this, but I really think that what saved our bacon is the fact that she has been on breastmilk all this time and not formula. I am convinced that if she had been aspirating formula all her life instead of breastmilk, she would have had multiple aspiration pneumonias and probably would have a feeding tube by now. I might be tooting my own horn a little bit but mostly I am just grateful that I am still able to pump and feed her breastmilk at 15 months. I never imagined I'd pump that long but dairy makes her sick and I limit the amount of soy my kids get, so if she wasn't on breastmilk still, I'm not sure what I'd be giving her. 

So far, she's handling the change well. I think she was annoyed the first day because it takes her longer to drink her bottle and she kept pulling it out of her mouth and looking at it like, "What the heck is wrong with this thing?!" She's getting used to it though. We just happened to have a few packets of thickener laying around and one of our friends had a couple extra jugs of it that we were able to get, so that will be enough to keep us going for a while. I used to have several boxes of it but I gave it all away, so I was grateful that someone was able to give us some of theirs. 

I wouldn't be me if I didn't have some little nagging anxiety in the back of my mind wondering if this dysphagia is just a fluke or if it's a symptom of something bigger. For now, we're just counting our blessings. I have to say that it was SO STINKIN' AWESOME to go in, do a test, have it show a problem, and know what to do to treat the problem. It was a nice change from how testing almost always goes with Raya! 

Well, I've rambled on long enough but I felt like sharing a bit more of Piper's story now that there's more to tell. I sure do love this girl!

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