Archive Page 3

The importance of someone who “gets it”

I was chatting with an acquaintance  yesterday.  Her daughter is in dance class with my girls, and her son went to preschool with Abby.  Her son has multiple medical issues, both with food allergies, and Autism.  I mentioned that we were doing a week inpatient stay to get Mariella off of her medications.  (she had overheard a conversation I was having with a friend in the waiting room, and asked me…which is no big deal)  The look on her face was priceless.  She’s seen Mariella at her worst, and at her best…which isn’t all that great.  Needless to say, she was in shock that  her team would be trying to get her off her medications.  I just said it was a trial, and we would adjust as necessary.  I DID however say, “I know I shouldn’t be freaking out right now, there’s nothing to freak out over, yet.  I don’t need to start worrying until July.”   She gave me a wonderful gift…and I don’t think she even KNOWS she did it.  She gave me permission.  She said, “But you WILL worry…every day, because she’s your baby.  Just because it’s not happening for a long time doesn’t mean you aren’t thinking about it, and worrying about the implications…it really just means you have a long time to think about it, and worry.”  It was just so nice to have someone GET IT.  Someone who understands, who validates the feelings I’m having.  (and that’s not to say there haven’t been other people who have done those things…but YESTERDAY, when I was in a pretty bad place…having her say it was a gift.)

There are so many people in my life that get it…that understand.  I’ve been blessed with a friend who has a child that has gone through this before….and while getting to the place where he’s at now was a very scary road, and I hope we don’t have to follow the same path, I know that if the worst case scenario happens, I can call Sherry and say, “how did you do it?”  I know I can call her and cry, and she’s just going to listen, and when I ask, she’s going to tell me what I need to know.

I have fabulous friends on the internet…people who I will likely never meet, who get the worst of me, because they see a face of me that I don’t show other people around me.  They get me when I’m freaking out and crying and at the lowest of the low.  I can’t express HOW grateful I am for that.

It’s important to have people who “get it”  A support system, a safety net.  Everyone needs someone in their corner…and I am blessed and grateful for the people in mine.

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What defines us…

I’ve been thinking a lot about what defines us…as parents, as people…etc.  I am a wife, a mother, a sister, a daughter…but is that what defines me?

I try hard not to let my daughter’s health problems define me…and honestly, sometimes it’s difficult.  I want to be able to advocate for her, but I also don’t want to be my ONLY existence.

Do I want to allow my daughter’s diagnosis and health problems to define me?  Am I ONLY the mom of an unstable asthmatic child?  Am I ONLY the mother to a child with Gastroparesis…am I ONLY her health care advocate…is that now the definition of my life?

Do I change my email to “momtothebreathless@gmail.com” or GPMomma@yahoo.com”?  Do I begin to advocate and fundraise to the exclusion of everything else in my life? Do I back away from friends and family who “don’t understand” or even if they DO understand…they don’t live MY life…so how can I have time for THEM? Do I stalk the “worst case scenario” blogs…either to show me that things could be worse…or to validate the fact that because things could be worse, it’s the most terrible thing in the world.

How is that healthy?  Don’t people need to be more well rounded?  I’m not saying I DON’T need to be an advocate and I don’t need to participate in fundraising, or that discussing my child’s illness isn’t OK…but is it the ONLY thing I should be doing.

I know people who become defined by their disease, or their child’s disease, and I see it begin to eat away at them.  They lose themselves…and then, if the worst happens, they no longer know what to do…they’ve lost so much of themselves that they no longer know who they are…who they can be.  They don’t know how to move forward (and I won’t say move ON, because I don’t know that there IS moving on after the loss of a child) they don’t know how to begin to heal at all.

People often think I’m very nonchalant about the severity of Mariella’s illness.  If they ask me about how she’s doing, I don’t LIE, but I don’t dwell on it, or sit there wringing my hands, crying “woe is me”  I tell them what they’ve asked, and I usually follow it up with…”well, you know…it is what it is.”  Rarely do people see me break down about things.  When it’s been a very hard time, when she’s been very sick…or when things are going really badly…someone very close to me might see me break a little bit…but that’s very rare.  My daughter’s illness, her condition do not define me.  Advocate, Caregiver, etc…they are a part of who I am…but I am SO much more.  At least I hope I am.

What defines YOU?

Pulmonolgist Appointment update

So, Dr. Duda is on board with a hospital admit to get her off her steroids.  He also gave us a referral to an endocrinologist.  Apparently, she’s now dropped enough off of her growth curve that they are concerned.  He seconded adding pediasure and or Carnation Instant Breakfast to her regiment, and adding a Tums for calcium.  However, he agrees that bulking up her weight isn’t going to do much, if she isn’t getting taller.

He’s also suggesting counselling for both M and I…because it’s hard to have a kid with a chronic illness.

Her PFT’s sucked for her…not bad, but worse than her typical…they did a deep throat  culture, to see if she’s growing anything new in there.  The nurse tried to help with the insurance crap…but when she called about the preauth, Medco said they didn’t know what she was talking about.  It’s a bit frustrating, to say the least.

So, Dr. Duda’s thinking on getting her off her medication is that because she doesn’t have great control, he’s concerned that maybe the meds are masking something else.  So, more diagnostic process, but we’ll be ok.

I think to say I’m scared is an understatement.

AND, in the category of “If I don’t laugh, I cry”…Dr. Duda had a Resident with him today…so she came in first and did some history and intake stuff…and as she was doing the exam, she asked, “so, she’s been tested for Cystic Fibrosis…right?”  EVERY. SINGLE. TIME. we meet a new doctor, they ask us that.  I have been ASSURED that because she sweats normal, and has a normal Ambry panel, that she DOES NOT have CF.

Annual Pediatrician Appointment

We got there just a few minutes late…so I was feeling a little rushed.  We got called in, and Mariella stepped on the scale to be weighed (37 lbs and change) and then was measured (43  inches)  No measurable  growth or gain.

Officially, she is in the 2.2 percentile for both height and weight.  A couple months ago, she was in the 5th and 8th…so we’ve had a drop.  I’m honestly not sure if it’s because she’s gotten older and not grown, or if it’s because she’s lost weight…I think it might be a little bit of both.

Otherwise, things look good.  We talked about adding calories to her diet.  The doctor knows I’m trying.  We’re going to try doing Pediasure or Carnation Breakfast a couple times a day (in small amounts)  The issue we had been finding is that it’s too filling, and she stops eating real food, because she’s full on liquid nutrition.  I’m actually getting scared that they are going to suggest tube feeding or something.  She TRIES to eat…but she gets full very fast, and her diet IS very limited.

Typical methods of “bulking up” for people who are underweight is to add cream and butter to everything. So scrambled eggs would be made with heavy cream and fried in butter.   Mariella can’t really tolerate that.  Fat slows the stomach down, so, for her already slow stomach, slowing it down more is detrimental.

We also discussed safety stuff (car seat…she has OK’d booster…not as ideal, due to her weight and height, but due to her age, and the fact that she is already quite ‘different’ from her friends; helmets when she rides bikes and scooters, etc)

The doctor and I discussed the thoughts on taking her off her inhaled steroids.  I mentioned the new “school of thought” that it’s better to keep growing kids off of inhaled steroids, and just manage symptoms with increased bronchodilator use.  She rolled her eyes at that, but did say she wasn’t an expert.  She just thinks that breathing is more important than growth.  We agreed to go with what Dr. Duda says about it.  We’ll see him tomorrow.

I’ll update tomorrow after we talk to Dr. Duda.

When reality becomes a dream

I am exhausted.  Between Mariella not sleeping well because of her cough, and me not sleeping well because of MY cough…a full nights sleep hasn’t happened in a week.  It catches up to you.

The other night, Mariella’s cough penetrated my dream.  In my dream, her cough was the alarm.  In fact, when I was hitting snooze in my dream, I physically turned over and dialed the volume down on the monitor, so I couldn’t hear the cough anymore.  I either realized what I had done, or I turned the alarm clock back on in my dream, because I turned the volume back up on the monitor.  The fact that the sound of the coughing was still there is what fully woke me up and made me realize I needed to go neb Mariella.

It would be funny, if I wasn’t so mad at myself for not taking care of Mariella the way she needed to be.  She made it through the night, no worse for the wear…and it’s all good, but I still feel kind of bad.

Silly M!

I’m  noticing that Mariella is starting to cough more than is typical. (she is NEVER cough free)  We are really trying to teach her to notice when her baseline is changing…so that SHE can figure out when to start her sick plan.  She’s really good about knowing when she needs a rescue inhaler or neb, but she’s still learning to watch for the SIGNS of something brewing…like increased coughing,  or even just increased fatigue…so that she can let me know what she needs.  Obviously, I don’t let her get too far, unless I don’t notice the signs coming.  If I notice that she’s coughing more, or needing more rescue, or whatever…I’ll jump in and start sick plan…but when I notice something JUST starting…to the point where I’M watching it…I’ll just give her a gentle reminder to “pay attention to your chest”

 

She went to bed last night, and she was coughing a little bit in her sleep…but nothing excessive…it didn’t wake her up.  I am sick as a dog, so I heard it…but I also couldn’t summon the energy to get out of bed.  I turned the monitor up a little louder so I could monitor her breathing a bit better….but I really decided that she would let me know if it was bad enough for some kind of rescue.

This morning, I woke up to a little MORE coughing through the monitor.  Not terrible, not scary coughing…just more than typical.  So I reminded her to pay attention to her chest.  She asked me why.  I said that she was starting to cough a little more.

The look on her face was PRICELESS as she processed that…her reply to me was, “Um, Momma….I always cough…did you FORGET?”  Complete with exasperated sigh and eye roll.

No, dear…I didn’t forget…it’s kind of hard to forget THAT little tidbit of your life.   We do need to work on her sassy mouth though…she 7 going on 17, I think.

On Insurance Woes and Flares….

On Thursday, I called the doctor to get new scripts for Mariella’s inhalers.  I had called in the Qvar, thinking I had another month on it, but, alas…I did not.  Since I was calling, and the Symbicort was up too…I just had them do that one too.

I went in on Thursday evening, and was told that the insurance company had kicked back the Symbicort.  They weren’t covering it.  They DID give 3 other options of lower cost medications…one of them, she’s already on, the other 2 were also straight inhaled corticosteroids, not a combination med like Symbicort.

So, after having a mini-breakdown at the pharmacy counter…(that they gave me chocolate for, to make me feel better) I got home and called the insurance company and spoke with 3 DIFFERENT people…who all “assured” me that the med would be covered.  I just needed to jump through this hoop or that hoop, but in the end, I’d have Mariella’s medication in my hot little hand.

So, I called one number that I was given, and it was a non-valid number.  I called the main number back, and THEY transfered me to someone else who ASSURED me that the medication would be covered, and gave me an over-ride code to give to the pharmacy.  By this time, the pharmacy was closing, and it was pretty late…so I went to bed, and decided to deal with it on Friday.

I went to the pharmacy on my lunch break…and found out they had kicked it back yet again…so I broke down again…and this time, I ended up a blubbering mess the entire rest of the day.  I was able to pull it together to call the insurance company one more time, and they gave me a phone number to give to the pharmacy to help them get the override code to work, or something like that.  So I got home from work and chilled out for a few minutes until it was time to pick up the girls.  While I was picking up the girls…the pharmacy called and said it was all worked out.

I finally had the medication in my hand, and I was feeling better.  Unfortunately, they want me to begin using mail order for Mariella’s medications.  We use mail order for Abby and Rob’s medication…I’m not ANTI mail order…but I can’t believe that a mail order company would have done all this work for me if I were just “RX#54q95q5439857-4”  To MY pharmacy team, I’m Sara…I’m a mom who is concerned about her kid…and her kid is the cute curly haired moppet who comes in a couple times a month and knows them all by name.  They’ve been with us since BEFORE Abby was born, and have been on this whole ride with Mariella with us.  Thursday, before all the trouble, one of the techs saw me and said “I’ve been on vacation, I’ve missed seeing you guys, I’d hoped you were due in for a visit soon”

 

Anyway…Due to my annoying habit of crying out of frustration, and anger…and add on the fact that since Symbicort is the med that they want her IN PATIENT to get her off of…that I was crazy scared to not have it…so I was literally SOBBING most of Friday…I am now the proud sufferer of an asthma flare.  At least I THINK it’s a lovely asthma flare…I don’t have a runny or stuffed up nose…I DO have a headache and some body aches…but I don’t hurt all over…they feel like “body wracking cough” body aches.  I DO have a low grade temp (100.1F* nothing REALLY to speak of) but I’ve been under covers all day.  It doesn’t FEEL like the flu (because stupid me forgot to get the flu shot…I’m a terrible mother.)  Thankfully, it’s been a good year since I’ve been really really sick…so Rob is letting me lie low…even though we’ve got tons of people coming tomorrow for the “Big Game”  The house will get cleaned, even if it IS all just shoved in piles in my bedroom.


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