Endoscopic Sinus Surgery

I just had extensive work done on Wednesday to open my sinus cavities, turbinate reduction, and septoplasty. I previously had septoplasty that didn’t take. Any time I would get a cold, I could be sick for weeks to months with horrid sinus pain and congestion. I decided to share how my surgery has went so far!

I was so nervous! My first surgery was incredibly painful and I had packing which made it awful to breathe, let alone sleep! This surgery was different. Everyone was so kind and understanding.

After being prepped, I was walked into the operating room and laid down. They started anesthesia and I remember singing, “you’ll be okay…” then I heard “I can’t intubate if you keep singing.” I thought I replied that I didn’t know the rest of the lyrics anyway. Next thing I knew, I woke up in recovery with gauze under my nose.

My pain was about a 6-7. I think they gave me toradol because I refused to have morphine since it tends to make me vomit. The issue was they had a sulfate based one and I have allergies. I got a bit itchy, but no horrid reaction and it helped with the pain. The pain was more located in the top back of my throat than in my nose. I felt really tired like I just wanted to sleep. They changed my gauze a few times and said to use afrin or pinch the end of my nose if bleeding was bad or I was changing gauze more than once every half hour for the first 24 hours. I tolerated ginger ale and they got me ready to go. The nurse didn’t let me finish it! I had no problems for the 45 minute drive home other than feeling like I wanted to lay down.

All this time, although I felt congested, I could breathe through my nose because I didn’t have packing and the pain was far more bearable than my previous surgery!

When I got home I changed gauze, slept for a bit, woke up to take steroid and pain medicine, change gauze again, use afrin due to bleeding starting to drip, pinched nose, another gauze change and I was back to bed. I woke up frequently but I feel this was from the steroid.

Day 2, the surgical center called to check in and I had just fallen back asleep, it was nice and annoying. I started to cry randomly off and on. My neck felt a little weird like it’s restless as well as my left arm. I have a pinched nerve and nerve damage on that side. The crying was worse before I took my steroid and tapered off after I took it. My sleep was very disjointed and all over the place. I would suddenly feel very exhausted and need to lay down.

Best part about day 2 was using the saline rinse squeeze bottle! It didn’t hurt but it felt weird. I had stopped pain pills after the morning as they were only needed for my throat. I haven’t felt the need to take Tylenol either! I didn’t need gauze by the afternoon as it had only been small specks since the early morning.

Instead of blurry vision after surgery, I’m experiencing the opposite. I can see the tv better without glasses. There is still an adjustment but it feels like my eyes focus faster? It’s very noticeable in my right eye. I also haven’t experienced a migraine where my first surgery gave me a terrible one!

Later in the evening I sneezed open mouth 3 times without pain or bleeding and began feeling itchy or tingly inside my nose.

Day 3 has brought on lots of crying. I felt so very weak upon waking. Everything feels like an immense amount of stress to deal with. I’m depressed, but I haven’t felt like this in some time and I take Wellbutrin for it. Im also quite dizzy. I contacted the doctors office and they definitely think it’s the steroid and told me to discontinue for now. If my congestion is too bad, I could call back and they would figure something out. I was told to give my regular nasal spray a try to see if that helps. I feel very weird and light headed. It’s about 45 minutes after my steroid dose was due, but I’m doing okay not taking it thus far. I’m eating some Mac n cheese that I let cool. I’ve mostly stuck to liquids, crackers, and yogurt for now. I don’t like cold coffee, but I had some.

It feels a little tight in my nose when breathing but air can still pass through. I’m tempted to try a pseudoephedrine tonight to help with congestion so I can sleep. The cool mist humidifier is a life saver as well as the ocean saline spray. I’m doing my best to keep things moist.

I miss sleeping on my side with my head lower. My face feels tight or strained. I don’t really have pain. The itchy in the nose is awful but the rinse helps. Instead of a couple times a day, the doctor said I could rinse as much as I feel comfortable with. Hoping the congestion clears up faster and the itching calms down as things heal. I really want to go back to sleep!


Parenting is Hard

Then mix in a child on the spectrum who wants to harm people and herself. It’s been recent. The outburst. Hitting, biting, non-stop screaming, having to hold her to keep her safe. Other people stepping in to try and discipline, making it look like if I hit my kid or show her what she is doing hurts, it will magically fix the issues. Then when it doesn’t, tell me I’m still not doing enough. I feel so defeated and deflated not just as a parent, but as a person. I screamed and I cried. And I feel like I hate myself right now. That I shouldn’t be alive or near anyone because I will somehow fuck up their lives. I’m not going to off myself, but I need to be honest with how I feel.

The light at the end of the end of the tunnel was from a stranger and mother. She walked by and said “I’ve been there… We all have. You’re strong and you’ll find a way to get through this.”

It’s the one thing that made me feel somewhat normal about breaking down.

I’m still waiting for an approval from my daughter’s insurance to get an updated evaluation. Behavioral therapy alone isn’t enough. I’m not enough for my child. I think that is the hardest thing to come to terms with. I just have to keep trying to find what works for her.

I am in therapy myself and waiting on insurance to get my daughter in. I’m thinking we need family therapy. That’s the hard part. I feel that I’m always at a standstill waiting for something else I have no control over. I have to harass beg and plead to get help.

I’m trying to care for myself too. I was put back on an antidepressant. Instead of being stuck in this vat of no emotion, I feel like I’m actually experiencing a range. I’m going to check in and maybe have a dosage change because I still don’t feel I’m at my best. I just wish I had more people who understood.

Like I want to go out and get a job and help people in some meaningful way because I know that helps me. Yet I have to stay home to help my daughter and I don’t feel that I’m helpful at all. 😦 So it makes me question myself. Self doubt and loathing looms in. We were having great days, then the schedule changes and regression happens.

At least she’s pooping on the potty and using the bathroom regularly. She hasn’t back-tracked with that and I’m sure that is one of the sources of her frustration.

Moving Forward

Both my partner and I are seeing new therapists. I think it is something that is important for us both. There has been so much death and other bad things and we each handle this stuff differently. We realized that the reason we haven't been supportive to one another is because we are both so burnt out. We each need help getting back on track. My partner becomes super codependent while I take control because I don't trust others to get stuff done. We each need to find a balance.

We have each decided to take on some lifestyle changes as well. I have been purging items we don't need for a while now, but now we need to take the next step. Everything has a space and everything in it's place. I have been doing much better with this concept, but my partner still struggles. We are looking for ways to help make the transition of putting things away, right away, easier to remember. He has ADHD and either gets hyper focused on something or just doesn't remember. I end up cleaning so much and don't have time to do fun things. I need everyone on board to make this work. If everyone takes care of things right away, this will reduce our tasks.

Another change is designated days or times for cleaning. Say I drop something on the floor, I will pick it up right away, but I'm mopping the whole floor tomorrow. Unless it could cause a stain or harm, it can wait. Waiting isn't a bad thing as long as there is a schedule to follow.

Then diet changes happen in August. I'm not thrilled, but it is meant to improve health over all. I'm hoping to be able to meal prep for much of the week. That should make it less stressful. It will also help my mom who is looking to have gastric bypass surgery.

My mom has struggled with her weight but has been under 300lbs for some time now. Both of her knees are blown, but they won't do surgery until she loses more weight and has the excess skin removed (it causes yeast issues with her legs cause it hangs). She doesn't qualify for skin removal until she loses more weight. Being mostly house bound, she can't lose more weight unless she can move around. We don't know if the bypass will do the trick, but it's the only next step that she can potentially take that puts her closer to knee surgery so she can walk. Also part of the stress we have been dealing with.

I'm ready for more positive changes. I know it will take time and I just have to stay focused and keep at it.

Finding My Way

Things have been stressful and crazy. Even when I try to avoid people, they still manage to find me and cause drama, or bring the drama to me. I'm very empathetic, so it's hard when I find myself caught up in this spiral and it's one thing after another. That's life though… Or is it?

I need to get back on track with working on my physical and emotional health. I'm so exhausted every day lately, but I push myself to keep moving. I miss walking with friends, because I know I have a hard time motivating myself. I'm the sort who sometimes just wants to walk with someone and barely say a word. I don't mind silence and I'm not afraid of it. I can be a talker at times, but I think I'm more worried about walking with someone and just hearing more drama.

I'd also like to converse with my partner more or better, but it's a frustrating process. I like us to be on the same page and help one another, but more often I feel like I'm a caretaker to them and my daughter. I feel like they do few really difficult tasks, after days to weeks of nagging to get it done, but them I'm left to sort everything else and make things work. And it's too much so I burn myself out, freak out, they say they will help more, but then can't get out of bed. So I'm left to do everything alone again. If things do happen, it's after much procrastination.

There is so much more to it and we've both been through a lot. We both have issues. It's just tiring and I feel like I can't work on myself because I just don't have the kind of hands on support that I need. I worry and know that I'm not providing what my partner needs, but even they don't know.

How do you support someone who doesn't know what they require?

They just started therapy and I need to do the same for myself. Still I'm wondering what the point is because what if my partner won't get up so I can even go to therapy? It happens so often but with family too. My issues are always put on the back burner because I cannot rely on people to be there for me when I need them to be. I may have to schedule when my daughter is in school, but with the drive, I'd still need someone to get her on and off the bus.

I just need to figure out how to make time for myself. How to care for myself and not just fill up on coffee and food to treat my anxiety, lethargy, and depression. And some guidance is needed to help me get on track, and maybe in turn, my partner will find their way as well!

Those Unseen Things

Sometimes there are good days. Sometimes there are days that can go up and down. Sometimes there are bad days.

It’s hard when she has self-regulating issues. I provide a means to get her back on track, but if she doesn’t or refuse, we have to step away from a situation. Being in the car has been a dreadful experience. She doesn’t stay buckled. Thank goodness for childproof locks! She throws whatever is within reach. She will undress and throw items while I am driving. Having something to keep her occupied like a leap pad can go either way. Either she’s completely engrossed and has a break down when the battery dies, or she flips out and throws the leappad.

Worst of all is grocery shopping. I make multiple attempts to bring her to the bathroom and keep it consistent. That is the one thing that she will often fake me out for. She’ll use the excuse that she needs to go. We leave our carriage, go into the restroom. She asks me for more time. She doesn’t go or only goes a tiny bit. We clean up, dress, wash hands, etc. Quite often I find my cart of food is gone as someone assumes I left it and decided to put all of the groceries back which causes further frustration. We go to the bathroom first when we arrive before we do our shopping and sometimes in the middle and at the end if we are with other people so we can take turns watching the carts. It’s quite different when we’re alone and the bathroom breaks are only the beginning.

When I am by myself I take her straight to the car if she acts out when shopping. She calms down. We go back in and start shopping again as our cart has been put back. She freaks out. I leave the cart and groceries and take her back to the car. Rinse and repeat until I am asked by store personnel to please stop leaving groceries in my cart and taking off unless I actually intend to buy something. They would request that I leave the store and maybe come back when I can better handle my child or better yet, when she is not with me. How do you explain “I’m training my daughter who has autism and you’re not helping”? And even when I have said it, I get the looks of disbelief. She doesn’t look autistic, because clearly autism can be easily distinguished by the way a person looks.

They don’t understand the meltdowns. They don’t understand why or when I melt down and I yell, because it’s been happening for days or I am beyond frustrated myself for not being able to continue to remain calm and collected 24/7. They don’t see that I take the time to apologize to my daughter for my own behavior if I lose my cool, because I want her to know that I’m not perfect and I am responsible for my actions. I still struggle just like her. I talk to her and tell her why I was wrong and why it’s important that we talk. Even if we need time to cool down, it’s good for us to come together and find mutual ground. I know it’s not easy for her and I don’t expect or want to force her to be normal.

People don’t see how long I go being incredibly patient and calm where most others would have flew off the handle with their own children who are considered normal developers. They also don’t see that I feel like crap about it. That I feel like somehow I am supposed to do everything a million times better because she is autistic. That I am supposed to have the patience of a saint. I don’t want that kind of pedestal.

I just want to see my daughter smile. I want her to know that I love her and I support her. I want to go down the slide with her because she wants me to join in the fun. I want her to understand the importance of things like shopping, driving, cleaning up after yourself, and taking responsibility for your own actions… Because I hope she has the ability to live her life and be self-sufficient, or at the very least, be able to contend with the likes of society. If she can’t, that’s fine too. But I want to do all that I can as her mother, to give her every opportunity to practice, and try to become comfortable with these things.

It was never the diagnosis that freaked me out or scared me. It was wondering about the world’s acceptance of who she is as a person, and who she will grow to be, and needing to know that I did all that I could to help her survive the brash uncertainty that lies outside the walls of our home. That is what causes me to lose my cool. That is why I shed my tears. I just don’t know at this point.

I personally struggled with the acceptance of my peers, and I still struggle with accepting myself. I’m trying to work on that. It’s never too late. It just takes time and it’s never easy, but I want to be an example in her life and show her that there are always struggles and imperfections. I want her to know that while I don’t always feel like I’m a perfect mom, I can at least tell with all of my being that I know I have the perfect daughter.


ABA versus IEP

My daughter had an amendment adding an extended school year to her IEP. She really needs consistency and has a difficult time getting back into class after weekends and vacations. It makes it difficult for the school to meet success with her IEP goal even after scaling back the goals to better suit my daughter.
It’s hard to find a rhythm that suits her needs because they do change frequently. At home, we can more easily adapt. Academically, she learns things quick. If boredom sets in, she’s done. It’s her self regulation, primarily frustration, and her social skills that end up lacking. 

At home she loses out on much of the social skills with her peers. She doesn’t have siblings, but a cousin who is about a year older inconsistently connects. She prefers adult attention, which isn’t much different from my own upbringing as an only child. 

Things have been consistent as can be at home especially with ABA. We have charted so much progress with everything that we work on in the home setting. One of the biggest things has been the desire to show affection and the need to receive it. She used to push us away, say no, run off, etc. I grew up with a mother who was very attached and cuddly, so it was strange to not have that response in my own child. I think giving her some space allowed her time to understand the social aspects better.

At school we heard a lot about bad days, especially on the bus. She often gets sent to another room when she freaks out and they can’t calm her down. She has a lovie that was helping at school, but she was throwing it on the bus. Granted, the rule for the bus is to keep her items up front. So I want to say that is on them, but it also doesn’t give her the opportunity to learn to keep track of her own items in a suitable manner.

We may lose ABA if she gets assigned afternoon hours for the extended school year. They need to hire and train someone new and because the school hours would change come fall again, they would probably wait and start up with the fall schedule.

As a family we had to investigate the situation as this is new to all of us. We have to ask her teacher to request morning hours. We won’t know what hours she will get until about a week before the extended school year starts. We decided that if we get morning hours, we will keep both ESY and ABA. If we get afternoon hours, we will drop the extended school year and keep ABA.

ABA is consistent 5 days a week. Regular school is 150 minutes 4 days a week. ESY will go four weeks only for 150 minutes 3 days a week, then back to the 4 day schedule for regular school with afternoon hours come fall.

We realize it may continue to hinder her school progress, but it’s looking like she won’t hit her goals for this year. We have already mastered a number of items with ABA and continue to maintain and add more.

Weight a Minute?

My jawbone will no longer stay charged. The company is useless for repairs even though it’s covered, no one has responded in months. The only thing I can do now is return the item to walmart and get my money back. As an emotional eater, I really miss this tool. It helped me understand my body. I used it in conjunction with myfitnesspal to get under 200lbs. This week I hit 199.8.

I am on my third month of hormones and I wasn’t really gaining too much (just the bloating was insane) and my weight would return to normal. I realized that as long as I hit 10,000-12,000 steps a day, I could include some comfort foods as long as I didn’t binge and go crazy. Not knowing my steps makes it quite difficult. I am standing on my feet, but I know I’m not walking as much as I was. I haven’t had the time for walking or for food…. It’s pretty bad when you are rushing home to stuff your face and go to bed only to get up and be driving and running errands every single day. I’m pretty burnt out.

With so much emotional and physical stress, it’s a tool that I really need to help me stay accountable because I have a hard time tracking without real-time data. I’m honestly at a point of being so burnt out that I just don’t care if I’m shoving my face with food before bed and going to sleep because I didn’t have time to eat all day. Before I could eat take out, watch my steps, and be fine. The guilt is creeping back in though and it’s frustrating. I think it’s time to invest in a Fitbit at this point.

I recognize that there is all of this stuff going on though and what I need to do to help myself put things back in order. There are going to be times that I just don’t have time, so I need to be wise and find other ways to cope. Like writing about it here…

My laptop takes forever to load but I finally ordered a case for my computer parts so I can put my new desktop together! I honestly start out intending to write, since I had issues on my phone, but it takes so long that I’m already sleeping by the time it loads up. I’m sure I need to clean out space on it too which I will do once I have the new one set up.

So I need to get back to meal planning so that I can take breakfast and lunch with me. It would be nice to have dinner ready to go when I get home as well. I just want good things for so many people in my life right now. I just can’t keep it up with it all and really need to step back and work on me. It’s hard to remind myself that sometimes, but it’s true. I am an important and deserving person in my life that needs time as well!

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Sensory overload?

My daughter informed me that she got into trouble at school today. She was so upset and said that the teachers were yelling at her. She finally explained that the fire alarm was sounding and she tried to run and hide in the classroom. Apparently the teachers ended up yelling and had to drag her out of the building. She kept telling me it made her ears hurt.

She has shown a massive increase in behaviors since recovering from adenoid and ear tube surgery. The good news is that we now understand her sensory issues are primarily auditory.

On the bus she proceeded to kick and punch people without reason. When the driver asked why she was punching and kicking, she told the driver “grandma does it to me!” This can’t be further from the truth. I have witnessed my mom spanking her when she unplugged a lamp and tried to stick a fork in the socket. My daughter laughed after being spanked as she thought it was funny. My mom has a really hard time moving around and uses a walker. She is not actually able to kick. Later my daughter explained they wrestle and grandma doesn’t actually hurt her. She just told the driver that because she wanted her to stop talking.

During ABA she has been labeling flash cards representing bad things as “good and safe” and flash cards representing good things as “bad and dangerous”. She smiles and laughs as she answers and seems to think it’s a joke. 

I think she understands but prefers to answer opposit because it’s a game to her. Maybe it bores her but she won’t tell me why and maybe she doesn’t know? I always try to talk openly and tell her when things aren’t very appropriate to say. It’s still a struggle.

I’m worried I’m going to be forced to medicate her to calm her down so that she can pay attention. I realize that sometimes it’s needed, but I have just never experienced this before, and as a mom, it’s all really scary. 

She even tore her lovey “Bumpy” the other day and I had to sew him back up. It was bad and she freaked out because she couldn’t have him to comfort her until he was fixed. 

I just wish I knew how to help her more, but sometimes I’m at a complete loss. It’s an unwelcoming feeling as a parent. It is what it is, but I can’t help but feel sad. There are days when things are beautiful and seem normal, but there are also days I wonder if she will be unable to adapt and require long term care. I just need to stop thinking about that but it’s hard not to.

I’d give so much to own our own home. A place where she can run around and just be a kid and not have to worry about adapting because the neighbors or management don’t care that she’s autistic. They think she’s just a bad kid cause she doesn’t look sick or dysfunctional. Why do people have to be so judgmental?

Well, poop!

There has been so much going on and I haven’t had much time to sit down and write about it. In fact, I just got around to fixing my laptop so that I could get to some writing! The only thing I can think to write about is my daughter’s pooping habits because it is currently a struggle for all of us. Has anyone else had issues with potty training? How do you make it work? What worked for you? What didn’t work? Am I wrong to fear enemas? Does it get better?

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