Saturday, July 13, 2013

It's Time to Share the Good, Me Thinks.....

Well hello strangers! Or is it I, that is the stranger here? I AM strange - so maybe that counts for something. Anyway, on to the more pressing matters. I was going to write about my feelings on yet another viral posting on food allergy haters. I'm already bothered that the "bullied" have become the bullies in this scenario, but I'm not going to rant/vent on that. INSTEAD, I'm going to tell you a story of hope (I hope).

If you go back on my blog, you will see, it's not been an easy road for us - there have road blocks, persons being intentionally difficult and there have been times I felt like hiding inside my home and not coming out. Throughout most of those difficult times, there has been something wonderful though - Liv's school staff. Did it take an act of Congress to get her enrolled in school? Almost (I mean that literally). Do I think I've ever gotten through to her principal, about what it means to care for Liv? Probably not. Have her teachers, aides, school nurse, school secretary, parent volunteers and almost everybody else that cross her path protected her, cared for her and loved her like her own? You betcha.

Liv's first experience at her current school, was preschool. This is separate from the elementary, but shares the name and location. Her Director there could not have been more of an ally. She heard my concerns and she didn't bat an eye. She walked me RIGHT over (yes, that moment) to the teachers that would be in Liv's room.  These women would be the first, in a school setting, that I would experience. Would they cringe, would they tell me I had no right to ask for accommodations, would they tell me there was no way....? Nope. They looked at one another, looked at me and then looked at Liv - and they said, "We've got this. Give us a week to gather our thoughts, on how to best protect her, and we'll be in touch." They were in touch, and they came up with a plan that I just didn't even know was feasible in a classroom setting and one I never dared thought I could ask for. During the middle of that school year, Liv would have her tonsils out. Not only was her preschool staff concerned - the Director drove the hour and a half to the hospital...she surprised us in pre-op with some stuff to keep Liv busy there in the hospital and with a sign from her classmates. That was my first introduction to school and my food allergic child. Thank goodness for them - they are angels. Every time I see them, they still greet me with a smile and ask about Liv.

Liv with one of her Preschool teachers.

After preschool, and going into Kindergarten I hoped for much the same. Well, did I get slapped in the face with some hurdles there! You can read about those another time though (in earlier posts). We got over the hurdle and I met the staff that would be responsible for Liv's school experiences. In my first meeting with this staff, they all stared in bewilderment....what did Liv's health mean for them? How could they reasonably accommodate her, why did we have to walk into their school? Yes, you could read most of those thoughts in their faces...then something happened, their faces changed. They looked over at Liv who was peacefully coloring and listening in (she's been to every 504 meeting thus far). They saw it - the child who looked so "normal" on the outside, but clearly had some health needs. A collective deep breath was taken and then a meeting that lasted hours ensued. Ideas came pouring out from each of us and put to paper. We each took that paper home, read through the ideas and came back together a bit later to weed out the unnecessary and fine tune the necessary. They played the role of devil's advocate and played it well. This still meant I had parents to meet/work with. I was nervous going in, I won't lie, but I wouldn't trade that for what I got in return! These parents didn't understand food allergies in the way Liv's present - but they had zero issues with learning, protecting and becoming proactive! Did Liv have a successful year? Yes. She missed a lot of school due to illness, but in our world, that's pretty normal and to be expected.

Graduating from Kindergarten!!

First Grade: This was going to be a challenging grade. It was the first year we had the lunch room to contend with. I can't even, adequately, put into words the anxiety this brought on for me. I was terrified, pure and simple. So, at the end of Kindergarten all of us from the first meeting came together again at the end of the year, this time with Liv's future First Grade teacher. There it was again - that wide-eyed look of terror over having Liv in her class. This time, there was another teacher in the room to put her hand on the shoulder of the new teacher, telling her, "It's gonna be great, she's a great kid and her accommodations are not only doable, but become habit and so easily part of the day." The Kindergarten teacher then made her exit as we talked lunch room. Several ideas were shot down as quickly as we thought of them (shot down by all of us), but some had weight to them and are in place to this day. A week before the First Grade school year began, we met up for a less formal 504 meeting - just to fine tune the details, and the Specials (Art, P.E, Music) teachers popped by, much to my surprise! They too, wanted to know the fine details and be a present part of these proceedings. Again, a year that really went well - teacher got it, parents go it, staff was a team WITH me. This was the year that I realized Liv's peers were her advocates and allies - they even took notice and went the extra mile, all to ensure their friend's safety and inclusion in all they did.

Special delivery from her 1st grade aide, on her birthday!

This past year was Second Grade for Liv and would prove to be the most pivotal year yet. Her teacher was not only somebody that I already knew as she taught Tai several years prior - but my family knows her. She knew of Liv's health concerns, she knew Liv was going to be challenging and she requested Liv be in her class. There was no look of shock or bewilderment - sure some was a bit overwhelming at first, but she knew what she was getting into for the most part and she wanted my child to be in her class. She took all the necessary precautions like all the teachers prior. Once, after a lockdown in the school, I asked out of concern - what if Liv needed emergency help...her teacher looked me in the eye and told me, "Billie, I won't be leaving her side for a moment and I can tell you with certainty...if her life were on the line and it meant me breaking protocol and losing my job, to save her...she would be just fine and I may need a place to live." She joked at the end, but she meant that and I knew it. This teacher texted me throughout the year checking on Liv when she was out sick, or had an important Dr visit. She even showed a child level educational video on food allergies in Liv's class and then opened up the room to Q& A session with Liv. She didn't just care for Liv, she empowered her. She gave her ownership of her food allergies and this gave Liv's peers understanding vs fear of Liv's needs.  Again, another successful year of staff, parents and myself being on one team - for all of our children. I could honestly go on for days and days about her second grade teacher as she was so much more than I'd anticipated for Liv, and that's saying a lot considering I already knew she was amazing.

Halloween in 2nd grade!

And throughout all of the elementary years, at so very many meetings there has been the support staff: Secretaries, Counselor, School Nurse, District Area Nurse, District Director of Health Services, Specials (Art, P.E., Music) Teachers and Aides. These folks have done it all, from being a shoulder to lean on, being actively involved/concerned with Liv's hospital/Dr visits and medical tests. They've sent her home with flowers and even had flowers delivered on her Birthday.

 Flowers given to her by one of the school secretaries, just because. :)

All of this crazy long post is simply to put it out there - school is not always a nightmare scenario for Food Allergic children (or those like Liv that are also chronically ill). It's not always easy, there are a LOT of meetings, lots of phone calls, emails and hard work involved, but it has been my pleasure working with Liv's school. It can (and should) be a wonderful journey that is educational, encouraging, inclusive, empowering and full of wonderful happy memories. Thus far, that's been the experience for us, and I wish it to all of you as well!

Liv on the far left...on the last week of 1st grade on a field trip, saying goodbye to 1st grade and HELLO SUMMER! 

**This blog has been brought to you by a friend stating that "It's human nature to complain." Maybe she's right, but I took that as a challenge and my son's favorite saying came to mind, "CHALLENGE ACCEPTED." This is me not complaining and this is me spreading the good that can come from an FA child in public school settings.**

Wednesday, May 8, 2013

The Bad, The Good & The Thought Vomit? Ew...

Just a late night rant/vent/thought vomit (you're welcome for the visual).

I wonder how many other parents of chronically ill children find themselves with a very limited number of friends; if any at all (Specifically those working with hidden disabilities; FA parents, Eczema parents, Asthma parents, Autism Parents, so on and so forth).  I mean, it's hard to have a social or work life when more often that not, you need to cancel plans with little to no notice. Making play dates with an FA child is one of those things that I'm always torn about; do I ask the other parent(s) to accommodate my child regardless of how difficult that may be for them or do I beg them to make a 'food-centric' time well...sans food? Going back to canceled plans, how do you tell a friend, co-worker, boss, teacher, family member or really anybody that you have to cancel plans because your child is having an eczema flare? Come on, I'm part of the real world and I try to keep things real - who would believe that eczema could interrupt every aspect of life (outside of other eczema parents, of course)?! How numb can a person become to the look that a person gives you saying, "uh, yeah, eczema...sure," or the tone and change of voice you hear when they say, "Oh, poor child...," but it really sounds more like, "Hrmm...canceling again, suuuper."

I wonder how many parents of chronically ill children have to stay home with them out of necessity or work places not being able to accommodate the needs of an employee's chronically ill child. If you've been reading my blog through the years - you know I've been given the choice of being with my hospitalized child or losing my job...sadly, more than once. I wonder how many other parents like me, find themselves wondering if they're letting all other responsibilities down...such as school, siblings, work, etc...

On the positive side - my social life may be less than amazing, but the friendships I've made, via different online forums for other parents in similar situations to myself,  are too many to count. The friendships that I've formed on a certain "mommy board" when Liv was an infant have thrived through the years, with some of the most compassionate and caring women I could ever imagine touching my life. My son is a clear example of some of the things I'm (hopefully) getting right; he's this intelligent, kind, considerate, confident and selfless young man. My son will (usually) willingly sit down and just chat me up about a book, a class assignment, a Scout accomplishment/activity, future intentions and as far as I can tell, is fairly open with me - that's something I treasure so much.

If I haven't tooted my own horn enough in the previous paragraph, I'd like to think I've touched the lives of others myself. I'd like to think that through our trials, others have learned. I can be rough around the edges, sarcastic, stubborn, stretched thin (too bad this is figurative and not literal, d'oh) but at the end of the day - I regret nothing about where I am in life. I wouldn't trade the blessings I've received through the struggles for one single moment - if everything else sometimes feels like it's falling apart, but I have my faith and my little family; I am and have enough.  I began this "thought vomit" (yeah, that's gonna be a "thing" for me now, ha) feeling frustrated and thinking somehow I was failing at far too much, but this has really been the perspective I needed. Mission accomplished.

Thursday, April 25, 2013

The Twisted Road to the Struggles Unseen

Oh hello, I do have a blog, don't I? Yes, I rarely keep it up and I rarely write on a regular basis; I know. Life gets in the way most times.

Really, I'm just writing to get it all out; out what's in my head (Thank you 4 Non Blondes; for that line). I've recently had a revelation and I'm just trying to digest it all. What is this latest of my many revelations? My youngest child is special needs.

How does a food allergic/asthmatic with eczema become special needs?  By having some of the most severe forms of each of those and throw in a case of Vocal Cord Dysfunction that is not near as controlled as we need to get it. (Read about VCD here.) The aforementioned diagnoses are the cake we call life; Liv's anxiety is the most delicious frosting on our cake. I will say, I have had a front row seat to see just how powerful the mind really is - since beginning counseling for anxiety, Liv has really made many strides in all aspects of her diagnoses and life in general. As I often say, food allergies are rarely as simple as what meets the eye.

Liv is what is known as a chronically ill child; her Dr informed me last year she should be part of the Starlight Child program. I looked into it, and that was about as far as I went. How could my child that is so rambunctious, joyful and full of LIFE, be special needs? How is it by the end of each school year, I look back and realize she's missed more than 30 days of school (with countless early dismissals due to falling ill or Dr appts)? It's no wonder we're all so exhausted and ready for summer; we've spent the better part of the years being behind and trying to get makeup work done and turned in (while keeping on top of current work). The thing is, Liv gets sick, she gets really sick and it happens often. To keep on top of her health, there is a ton of maintenance - at home and in clinic.

Now, more to the point of what I want to say. I'm not writing this out to complain, please don't misunderstand me on that. I'm writing this to remind folks that we all have battles that are unseen on the surface. I see jokes about food allergies or asthma, and I can laugh at them; I have a seriously wicked and twisted sense of humor. What I cannot listen to or tolerate is seeing my fellow mothers being judged and so harshly. I hear that mothers like my fellow asthma/allergy moms are "helicopter moms" and while I can see how somebody on the outside may think that; I highly doubt many of them would be able to trade lives too easily. I don't believe I'm any better than the next mother, but I do believe that given the choice - the mother or anybody judging my life wouldn't trade places for a moment.

There are days it's exhausting just to keep everybody fed and the dog walked, let alone get work done and an even smaller chance of free time (I'm stealing time that I should be using to walk the dog, he's lazy anyway ;) ). To know that so much energy goes into the lives of allergic children and to see my fellow moms struggle SO much to get schools to understand that our kids need certain accommodations makes me angry. To make schools understand that our rambunctious children could be taken from us due to one mistaken bite of allergic food (or even contact with it), is so difficult. Why? When I watched my child do a challenge to baked egg (which mutates the protein and dilutes it among many other ingredients), and go into anaphylaxis by her 3rd dose is heartbreaking. Those three doses didn't equal one full bite of a muffin and she went down fast. Within minutes she'd vomited twice, sneezed uncontrollably (more than 16 sneezes back to back), eyes were watering, coughing along with the sneezing and then it happened...her blood pressure plummeted. Her blood pressure plummeted after a dose of Epinepherine - Epi should cause the heart to race; Liv was in full anaphylaxis and the whole thing first to last symptom (before Epi began working) was within 7 minutes. Seven terrifying minutes that I could NOT imagine happening in a school that denied my child her rights to have a food free classroom and immediate access to her medication. Can you imagine that? Sadly, I'm seeing so many mother's go through this very ordeal with their schools and fellow parents...and today, I'm not sad, not complaining, not hopeless - I am strong, I am standing up and I am ANGRY.

I could go on and on, but lucky for you, the dog's walk time is ending and I must get myself to the school and meet with staff regarding the next school year, that should be fun, especially considering my mindset with schools right now (Liv's teacher being the extraordinary exception, I do have to say that...she's wonderful!). Before I go a shout out to the moms of the world. To the moms with struggles unseen on the surface or seen on the surface - hats off to you for all that you do.

Sunday, May 20, 2012

Atopic Derma-what?!

Atopic dermatitis is another term for Eczema. Atopic dermatitis is the more common way eczema is referred to at National Jewish Health.  Both 'dermatitis' and 'eczema' mean inflammation of the skin while 'atopic' is another way of referring to allergic conditions like asthma.

Atopic diseases such as asthma and atopic dermatitis are most likely genetic. Yep, if you have eczema you will most likely pass that down the line - Asthma too.

Liv (the *lucky* little ducky) has what is known as the "atopic march". This means that certain diseases develop over time, one after another - eczema (AD), allergies (mostly food in her case) and then asthma. The "march" doesn't always go in that order, but does start with eczema. Once eczema is on board the others are more likely to develop than in a child that does not have eczema. That *may* have been helpful to know years ago, but hey, Dr.'s that we've run across treat eczema like it's no big thing - regardless of how raw, red, irritated and inflamed a little one's skin may be. Sad. From about 3 months of age, Liv has struggled with this irritating and sometimes debilitating disease. I pressed and pressed Dr.'s for help for so many months to no avail. Thank goodness we came back to Colorado and started treatment at National Jewish.

What can irritate atopic dermatitis skin? During a flare up, anything and everything - flaring atopic dermatitis patients are walking open wounds - what doesn't irritate an open wound? There is an "itch/scratch" cycle that also happens during a flare up - this makes the AD kiddo absolutely mad and miserable (along with this mommy).

Some things that can irritate even calm AD skin (in Liv's case, at least):

  • Emotions - from extreme levels of laughter to sadness/crying to anxiety.
  • A hot and humid climate (causes sweat which is really hard on skin)
  • A dry climate- pulls moisture from skin (though our dry climate is ideal for Liv's asthma)
  • Dust mites - these little critters (cannot see with the naked eye) thrive on dead skin - they are found anywhere in the U.S outside of the Rocky Mountain region.
  • Allergies
  • Cold/flu
What can help make the AD patients' skin better (Liv's anyway)? Getting all diagnoses diagnosed and under control!! That was huge in our battle! Did you know that something as simple as nasal washes help AD?! There is so much bacteria breeding in our warm, dark and moist noses (you're welcome for the visual!) - specifically Staph (which Liv has had several times now). It's entirely too easy for kids (anybody really) to scratch/rub/pick their little bacteria breeding noses then scratch/touch those open wounds they call skin. Get that nose under control and watch their skin clear up before your eyes (okay, with the help of a few other steps)!!

Steps that were critical in creating a healthy skin barrier for the Livster:

  • The right topical steroid ointments for the right flare up areas.
  • Vanicream, Vanicream, Vanicream (oh, and did I mention LOADS of Vanicream?)!
  • Plastic spoons (yeppers, for the above mentioned Vanicream/ointments). You never want to stick your hands in lotion/cream/topical steroids as this contaminates them - this will just put bacteria right back on the ad patients' skin - never really bringing relief to them.
  • Learning what a Soak & Seal is and how to do this.
  • Wet Wrap Therapy - There is no better way to get water back into the skin, than to soak it in water and keep that moisture coming with the wet wraps!
  • Learning when and how to step down on any of the above routines and therapies.

So, I'm kind of over this "text book" post, but I felt it necessary. If you have any questions on how to find resolution or how to deal with any of the above listed irritants - please, contact me - I probably won't have the answer and am not a Dr., but I can find helpful links or suggestions for you.  Need help in the list of latter list (creating a healthy skin barrier), contact me. Again - not a Dr, but this isn't my first rodeo either. I'll hand out the suggestions and the links just the same. I do ask that you approach your Dr for the go ahead on any medical treatment - thanks.

Don't believe me that the costs and the treatments are worth it?

Friday, May 11, 2012

Happy Days Are Here Again....

Thanks to Liv's sleeping meds (that they give in place of a sedating antihistamine during your first few days in the Peds Program), she managed to sleep the entire night (so rare in our world) and woke up in a surprisingly pleasant mood.  She still had the pH probe in place, she was hungry and she was ready for her morning vitals - all in all, the night portion of the probe was a success! Okay, so Liv was going nuts for ice cold water all morning, apparently the cold helps the throat to not feel so funny - by way of "numbing".  That's okay, I'll take this any day over the hysterics and sadness.

After morning vitals, meds and ointment/creams were done, she was really wanting to head to the playroom that had evaded her for the first two days - she just knew there was a world of *magic* in that room. I agreed, she needed something to take her mind off the pH probe, so off we went.....only to find it *gasp* closed!  I asked the nurses if there was another way to get into the playground - or another playground for her to play on. They gave us some bubbles to play with outside (normally for bath time for the AD patients) and told us to try the school playground (if you didn't know, NJH has a school on campus - it's pretty neat!) - but to be ready to hear them say we can't use it, because it does belong to the school after all.  Liv heard this and I saw the ornery little spark in her eyes LIGHT up! I checked our schedule and we had some free time - off we went again.  I was too chicken to go through the gates to the playground at the school and Liv was really set on breaking the rules, ha!  We did some exploring instead and still did some "sneaking" around (Liv insisted we try to get to the ped's playground from the stairs out back, even though we knew there was a gate...she is *sneaky*) - her joy and her smile were both returning - probe and all.

Liv with her pH probe and the machine around her shoulder is the "diary" of sorts to collect data such as laying down, eating, sleeping, tightness in the throat, coughing, etc.....(you push the button during these recordings to keep track). 

Running, jumping and playing around - just making me laugh my head off really.

Once we got done "sneaking" around main campus, we headed back in - just in time to find the playroom open. Liv was beside herself with excitement and started what would be the "art event" of her year...the entire two weeks was.  Other than having the probe in, this day was quite uneventful and thank goodness for that, we needed the recovery time. As you can see in the following pictures, we pretty much took it easy until the probe came out. 

We're what you call "serious folk", true story!

Patiently waiting on the nurse I was not exactly kind to the day before - to take the probe out (She would later become our favorite nurse - she is amazing!).

Yep, she is definitely my child.

She's so goofy! I posted the above pictures to show that she recovered from the day before without any issue or emotional toll being taken. (Note the "shark teeth" I mentioned in regards to the Hyper IgE Syndrome).

And then....finally....our 24 hours was up and it was time for that probe to come out - yeah! I'll admit, this part was a bit difficult for Liv too (nothing like putting it in), she's had enough IV's and needles that she is not a fan of having tape pulled off her skin. Once we convinced her to let us take the tape off, she was told to take a deep breath and slowly let it out...when she let her breath out, the nurse was quick about pulling the probe out of her nose. I was pretty grossed out by this as I imagine it to feel like the worlds longest booger coming out of your nose - yep, you're welcome for *that* happy little visual. This would be the end of our stay for Day Three (outside of the happy little video below).

Who says Asthmatics can't or don't like running? After the probe came out, it was like they let her out of a cage - she was a running maniac!

Prior to the above video, I did go to a class on Atopic Dermatitis (the reason I am now referring Liv's Eczema to Atopic Dermatitis or AD vs Eczema) - I will go into my notes from that class, but that's a post for another time. :)

Thanks for being on this journey with us (even if you're getting the details after the fact - it's appreciated).

Our love to you and yours!


Thursday, May 10, 2012

It's Rare That I'm Nice When My Head is Spinning...

Okay, so where were we for Day two - wait, are we just on day two still? Yes, we are and there is a ton for this I stated, it's a doozy!

And so....I may have gotten the order of the day mixed up a bit in my prior post. Between the wet wrap and Art Therapy, Liv met with the psychologist for a psychosocial appointment. This is a very typical appointment in the Peds Day Program and I requested it specifically. Liv shows some serious signs of anxiety and why shouldn't she? She has a lot of weight on her little shoulders. Liv exhibits behaviors like putting me between her and the eggs in a grocery store (or shouting the word "eggs" as one would shout the word "fire"), she started talking about dreams she had the night prior...about foods she is allergic to.  There are some other behaviors as well, like her sleeping routine (or lack of) - she talks in her sleep, she walks in her sleep, she wakes up to "binge eat" or just wakes up to play. Her sleep schedule has always been this chaotic and I just thought it was her "normal". Turns out that a lot of AD kiddos have a very interrupted sleep due to their itchy skin waking them up.  During this meeting we just talked and touched bases on these different issues. We would later work on a plan to help with her anxiety and we'd find out that ultimately, she sees me as her security blanket which explains her separation anxiety(that only makes sense though). I walked away from this appointment thinking, "great, what is *that* supposed to do?"  It was later in the week that we'd tie things together.

Once Liv finished with Art Therapy, it was a mad dash to get her out of her wet wrap, apply her Vanicream (yes, another layer is added after the wrap comes off), get her dressed and semi presentable for her next appointment. We were heading up to her Pulmonary Function Testing for what feels like a Spirometry, but in a box.

The day was young and she's still smiling bright!

Once we finished this it was time for a blood draw, you'd think this would be easy with how used to needles Liv is *and* the fact that they numb the kids arms here. This was far from easy, if you include the Child Life nurse, there were five of us in the room aside from Liv in order to make this blood draw happen. The blood work would be sent off to the lab to check her IgE levels (or reactions to foods by way of blood test).  We were given a break for lunch and then it was back to the procedure room for skin testing.  I can think of about 100 things I would rather do than skin testing, just off the top of my head, but this is again, extremely important. We must see what her skin reacts to and how badly it reacts.

Those bottom third hive up is cattle (yes, we have cattle near us so I had them check it) and the last is horse. She's never going to be a farmer, that's for sure!

We finished this test in the 15 minutes (after skin pricking) required, washed her back and put her Vanicream on. At this point, we headed upstairs to have the soft tissue in her neck x-rayed. Even though she's had her tonsils and adenoids out, in about 15% of people, the adenoids grow back. I later found out that hers have in fact grown back - joy! 

Liv was being an absolute trooper...and then IT happened. They pulled us back to the procedure room for this fancy study called the pH Probe Testing .  Child Life came in and explained everything to Liv, they let her know that the medicine used to numb her nose would burn a bit, but that would end quickly. They even let her know that when the medicine went up her nose, it would come down her throat and for a bit, she would feel like she couldn't swallow but that she would be fine and they'd make sure. Liv patiently listened to this and put on her bravest face, but I don't think she was fully aware of how invasive this was really going to be. They inserted the syringe into her first nostril and from there, it was the fast track to bottoming out emotionally - for both of us. I was sitting behind my daughter, with her in my lap, holding her arms with the fiercest of grips while another nurse held her head still for the nurse placing the probe up her nose and then into her esophagus from there.  Once the probe was placed we had to go back to x-ray to make sure the probe was placed properly. Liv was in a pure state of hysterics and was not going to walk to get back upstairs. Wheel chair and two nurses it was as far as escorting us up to x-ray. We had a quick x-ray which showed placement was almost perfect - little movement of the probe was required.  By the time this was placed and set to go, the nurse showed me the machine that is hooked up to the probe and as she was telling me how to use it, Liv was losing it and becoming more hysterical by the second.  I lost it and I looked the nurse in the eye and *kindly* informed her that my child was hysterical and that was NOT going to subside anytime soon. If she wanted me to gain anything from this study and do so with the smallest inkling of cooperation, she was to leave us be and I was taking my child back to her room. She suggested several options to help distract Liv - I (again) *kindly* stated that she did not know my child and at this point in our day, I was NOT going to do anything to distract her. I was going to take her to her room and hold her. I was going to do everything in my power to help her find her calm little place she goes to when she has had a bad hospital day in the past.  Turns out it wasn't me that did that - at least not by myself, a child life student that followed us through this most recent procedure came into our room and asked permission to just sit with us. I was not in the mood to argue, but she also didn't seem very intrusive so I agreed as did Liv. She sat by Liv's bed painting a picture while Liv watched...she then started doing bead work as Liv watched. I sat and rubbed her back as she nodded off. She slept so soundly for at least two hours.  Two sweet and wonderful hours. I spent the first 45 minutes of that crying quietly for my girl then fell asleep with her. This day was beyond anything we'd ever expected, but we made it this far, we were not backing down at this point.


PS, I promise that tomorrow is a brighter day in this story! 

Tuesday, May 8, 2012

When You Open Your Mind to it, the World Around You Begins to Make Sense!

Our second day at NJH began in what would become our normal fashion: morning vitals, bath, tub washing and wraps (wet to begin with and moving on to dry wraps later).

Morning vitals for Liv would consist of temp, O2 levels, blood pressure, peak flow and spiro. That second morning, the Dr's also decided it would be helpful for Liv to do an eNO test. This is another air output test, but it's to test the output of nitric oxide (NO) from the lungs. The higher this number, the more inflammation in the lungs. They prefer to see a child Liv's age and size to have a 20 or lower on this test. Liv was at 73 which was worrisome and explained the respiratory issues she was having. This may have been due to coming off of certain Asthma meds to better ready her for pulmonary function testing (PFT). It could also mean that the dose she was on prior to coming into the day program was simply not high enough, but her O2 levels just never showed this. For several reasons, the Dr.'s refrained from oral steroids: for one, that would completely throw our skin care regimen off course since oral steroids are *horrific* on AD kiddos (causes rebound flare's after the course is completed) and secondly, we needed her test results that she would undergo to have as pure results as possible. She was in good hands though, with eyes constantly on her - I never felt like this was a bad/wrong decision and I am extremely vocal in her care. During this particular morning's spiro, the CNA noticed that Liv seemed to be hesitating with her blows. She tried once more and Liv was performing in the same manner - she called Liv's nurse over and she listened (with her stethoscope) to Liv's breathing for her next blow...but she didn't listen to Liv's lungs, she listened to Liv's throat. I'd learn later in the day why this was.....

A video I took at a prior appt, of Liv doing her Spirometry. Pay no mind to her mismatched socks, her socks almost never match - on purpose. ;)

Moving on to Liv's bath, she has had a fear of putting her face in the water for as long as I can remember (even as an infant, she was not fond of this). This morning she was faced with putting a soaking wet washcloth on her face, or putting her face in the water. This was new to her because it wasn't just me pushing the issue, but now it was her nurse - she chose the washcloth. After keeping the drenched and dripping washcloth on her face for a minute or two, she was over it. She was ready to bite the bullet and put her face in the water to get her face wet. She did it, it wasn't pretty and it was for maybe for 2 seconds, but the water was on her face and that's what mattered. (For the record, regardless of what ANY Dr. or person tells you, the best way to hydrate skin is to put water on it! It's what you do following the water that can make or break this hydration process)! She splashed and played happily for the required 20 minutes.  During that time, I found it helpful to gather her towels, ointments, Vanicream, several plastic spoons (I would get better at my estimate of ointment and cream to spoon ratio), wet wrap clothing and gauze dressing and dry layer clothes together. Once the 20 minutes is up, you're in a full on rush to get everything done - no really, you should have the child patted dry, Topical steroid (ointment)/Vanicream applied ALL over and be working on getting their wet layer put on (to include the face wrap if necessary), all within three minutes of getting out of the water (at least having them "sealed" with ointment/Vanicream). It's a full on mad dash to get this ball rolling. I like to set up an area in the bathroom (a shelf) at home that has everything I'm going to need right there - I did this at NJH as well, I had a chair in the bathroom that I used as this shelf. The nurses had no problem with this and worked around my mild "OCD" just fine, thank goodness. Once Liv's face wrap was in place, she was off to Art Therapy, she was nervous to head to therapy in her wrap (more specifically her face wrap). This fear was short lived, as soon as she walked into the Art Therapy room she was greeted by one other boy and he was all too aware of what the wraps were like. Guess what, people here, kids and grown up's alike - they get it.

I'm so very glad that Art Therapy was good for her because the afternoon procedures that followed would prove to be a test of endurance within our hearts and souls. Liv and myself (mostly Liv as she had to endure) were in for a whopper of an afternoon and evening....little did we know.

Because there is so much of this day remaining, I will add that in an additional post - it's a doozy!