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.
Showing posts with label Eczema. Show all posts
Showing posts with label Eczema. Show all posts
Wednesday, May 8, 2013
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.
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):
Steps that were critical in creating a healthy skin barrier for the Livster:
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?
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
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.
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!
Billie
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 day...as 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.
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.
Billie
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.....
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!
Billie
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!
Billie
Chaos, Party of Two - Chaos, Party of Two
At Liv's last Dr. appt - her Dr. made it perfectly clear that we'd have a wait to get into the Pediatric Day Program. He wanted a very specific team of Dr.'s lined up for Liv's care (one of the *many* benefits of having her allergist already at NJH). I received a phone call from the Ped's Program Scheduler within a few days, she also let me know it was going to take some time to get the team together that was requested. All in all, I was impressed that it just took five weeks to get this team together given that I'd had so much warning.
Now typically I am well versed in checking in to a hospital setting and at first impression, this was no different. Everything was what we are used to (even though it's very different from most hospital settings) and then we walked into Liv's room and met Liv's Dr. and PA. Boy did these women have *questions* for me! We did minor background as they actually knew us from prior triage visits, but then Liv's clothes came off and we started going over her trouble spots (her AD) and marked those on a diagram (that the Dr.'s would update during our visit). Once the skin assessment was finished, the Dr.'s listened to Liv's breathing and heard some wheezing and a lack of air movement so we walked back to triage, did peak flow and spirometry testing (both of these are to test the *output* of air) - both numbers were decreased so Liv went back to her room for a breathing treatment and some oxygen monitoring. Not exactly how we'd planned to start our visit, but hey...if it's going to happen anywhere - might as well be the nations #1 Respiratory Hospital, right?
Anyway, this little respiratory issue kind of sidetracked us for a bit - the rest of the afternoon and night, actually. During the breathing treatments though, the nurse asked me something that seemed so silly (at the time)....she asked if I'd actually been putting my hands inside Liv's creams and ointments - well of course I had! How was I supposed to get it from the jar to her itchy little body?! Well, here's the first new fact I learned while at NJH - never put your hands *inside* of your AD kid's creams and/or lotions! Our AD kids have a lot of bacteria on them and we are just contaminating their creams and ointments when we do this...thus continuing the "itch/scratch" cycle. Wow, mind blowing...who would have thought - NJH, that's who! The nurse let our Dr's know and we were handed a handful of prescriptions for new meds (because this is an outpatient facility, you still need to get prescriptions and fill them downstairs at the NJH pharmacy).
I got Liv's new Vanicream and ointments just in time for her night bath at NJH.
We spent the first night there as is pretty typical and Liv wasn't breathing so well. The reason first nights in the program are typically overnight visits is to get the initial bathing and wet wrap routines/regimens on board. I can't lie, I had no idea what I was supposed to learn from this as Liv is already a patient at NJH and we'd been told to do wet wraps a year or so ago. Boy did I have that wrong - so very wrong! Turns out, the wet wraps are exactly as I was doing them, *except* I wasn't using nearly enough of her cream and I didn't really get the idea of how to put the steroid ointment in certain spots only and work around those with a good amount of precision with the Vanicream (again, in heavy amounts). Once the ointment and cream was applied sans hands in the container, wet wrap was applied on body and face then Liv did her night vitals. She still wasn't breathing quite up to par and the Dr.'s were concerned that this was due to pulling her off of some of her meds for the upcoming tests and procedures - they decided to monitor her O2 levels and did a bedtime breathing treatment. After this was done, Liv was given a sleeping medicine - this is to help the kids sleep those first few nights off of antihistamines (a night without antihistamines - what??!!). Once the sleeping medicine was given, Liv started acting super goofy and passed out, all in a matter of maybe 10 minutes - wow. She slept until about 2 AM )which is pretty typical for her) screaming that she was itchy all over - in came her nurse, off came the wet wrap and on came a LOT of Vanicream - Liv went right back to bed. Our second day started at 6 AM when Liv woke up coughing and wheezing - oy!
This is a ton of writing and I think I'll go ahead and save the second day for well, another post. :) Thanks for sticking with me this far! Billie
Now typically I am well versed in checking in to a hospital setting and at first impression, this was no different. Everything was what we are used to (even though it's very different from most hospital settings) and then we walked into Liv's room and met Liv's Dr. and PA. Boy did these women have *questions* for me! We did minor background as they actually knew us from prior triage visits, but then Liv's clothes came off and we started going over her trouble spots (her AD) and marked those on a diagram (that the Dr.'s would update during our visit). Once the skin assessment was finished, the Dr.'s listened to Liv's breathing and heard some wheezing and a lack of air movement so we walked back to triage, did peak flow and spirometry testing (both of these are to test the *output* of air) - both numbers were decreased so Liv went back to her room for a breathing treatment and some oxygen monitoring. Not exactly how we'd planned to start our visit, but hey...if it's going to happen anywhere - might as well be the nations #1 Respiratory Hospital, right?
Because NJH kids are chronically ill,
Starlight Foundation takes a bit of a shine to them.
Goodies that greeted us upon our arrival - so sweet!
We spent the first night there as is pretty typical and Liv wasn't breathing so well. The reason first nights in the program are typically overnight visits is to get the initial bathing and wet wrap routines/regimens on board. I can't lie, I had no idea what I was supposed to learn from this as Liv is already a patient at NJH and we'd been told to do wet wraps a year or so ago. Boy did I have that wrong - so very wrong! Turns out, the wet wraps are exactly as I was doing them, *except* I wasn't using nearly enough of her cream and I didn't really get the idea of how to put the steroid ointment in certain spots only and work around those with a good amount of precision with the Vanicream (again, in heavy amounts). Once the ointment and cream was applied sans hands in the container, wet wrap was applied on body and face then Liv did her night vitals. She still wasn't breathing quite up to par and the Dr.'s were concerned that this was due to pulling her off of some of her meds for the upcoming tests and procedures - they decided to monitor her O2 levels and did a bedtime breathing treatment. After this was done, Liv was given a sleeping medicine - this is to help the kids sleep those first few nights off of antihistamines (a night without antihistamines - what??!!). Once the sleeping medicine was given, Liv started acting super goofy and passed out, all in a matter of maybe 10 minutes - wow. She slept until about 2 AM )which is pretty typical for her) screaming that she was itchy all over - in came her nurse, off came the wet wrap and on came a LOT of Vanicream - Liv went right back to bed. Our second day started at 6 AM when Liv woke up coughing and wheezing - oy!
This is a ton of writing and I think I'll go ahead and save the second day for well, another post. :) Thanks for sticking with me this far! Billie
Sunday, May 6, 2012
Up, Down & Hope too!
It's been a bit since I last wrote, I know. I apologize.
Over the past several months (beginning in December, roughly) Liv has had several setbacks with her Asthma, her allergies and her Eczema (Eczema, from this point forward will be referred to as Atopic Dermatitis or AD). She has missed several days of school and been sent home early from school far more than I am/was comfortable with. I was mainly getting calls about her skin though - I know it's hard for some to tell the difference between "allergy itchy" and "AD itchy" and really, that's why she was coming home. It was to the point that every Thursday or Friday I would expect the call to go and pick her up. I'd do our wet wrap routine for her skin over the weekend with an extra bath a day to help her heal...only for the end of the week to bring an early dismissal for her yet again. I put several calls in to her Dr at National Jewish Health and set up an appointment with Liv's fellow for more answers (hopefully).
We sat and the fellow heard my concerns loud and clear: Liv's excessive flare ups, her growing anxiety (e.g. refusing to walk anywhere near eggs in the store, dreaming about foods she is allergic too, having flare ups/Asthma issues before trips with her dad, etc....) and her seemingly increase in Asthma issues that I also had a fear were more on the side of panic attacks. Do six year old children have panic attacks? You bet they do and her fellow agreed they might be, "she has a lot to worry about," were his exact words. I don't know if I felt good that he was validating my fears and thoughts, or felt horrible that they could really be true - regardless, it was time to do something and move forward. He did the usual physical exam and started asking several "new" questions (at a certain point, you get so used to the questions, you know which is coming next) about her skin and more importantly her teeth. I have affectionately referred to Liv as my little "Shark Tooth" due to her grown up teeth coming in behind her baby teeth. Apparently this is a common symptom with an extremely rare disorder; Hyper IgE Syndrome. Between him and the Dr., they were only half concerned, but enough so to do the genetic testing. *Side note - They took the swab to her cheek and we waited 6 weeks or so (genetic testing is not a quick process, that's for sure!) to find out we did not have a future of chronic antibiotic use as well as a plethora of other scary health concerns - she tested negative. Thank the Lord!*
Her fellow also mentioned to me that he believed Liv to be a good candidate for the Pediatric Day Program there at National Jewish. This is an outpatient program of extremely intensive skin therapy and research to further diagnose and help their patients. After talking with him and the Dr. together, I agreed - this was definitely what was needed.
Five weeks later, we would begin the journey that is the Ped's Day Program at NJH.
Over the past several months (beginning in December, roughly) Liv has had several setbacks with her Asthma, her allergies and her Eczema (Eczema, from this point forward will be referred to as Atopic Dermatitis or AD). She has missed several days of school and been sent home early from school far more than I am/was comfortable with. I was mainly getting calls about her skin though - I know it's hard for some to tell the difference between "allergy itchy" and "AD itchy" and really, that's why she was coming home. It was to the point that every Thursday or Friday I would expect the call to go and pick her up. I'd do our wet wrap routine for her skin over the weekend with an extra bath a day to help her heal...only for the end of the week to bring an early dismissal for her yet again. I put several calls in to her Dr at National Jewish Health and set up an appointment with Liv's fellow for more answers (hopefully).
We sat and the fellow heard my concerns loud and clear: Liv's excessive flare ups, her growing anxiety (e.g. refusing to walk anywhere near eggs in the store, dreaming about foods she is allergic too, having flare ups/Asthma issues before trips with her dad, etc....) and her seemingly increase in Asthma issues that I also had a fear were more on the side of panic attacks. Do six year old children have panic attacks? You bet they do and her fellow agreed they might be, "she has a lot to worry about," were his exact words. I don't know if I felt good that he was validating my fears and thoughts, or felt horrible that they could really be true - regardless, it was time to do something and move forward. He did the usual physical exam and started asking several "new" questions (at a certain point, you get so used to the questions, you know which is coming next) about her skin and more importantly her teeth. I have affectionately referred to Liv as my little "Shark Tooth" due to her grown up teeth coming in behind her baby teeth. Apparently this is a common symptom with an extremely rare disorder; Hyper IgE Syndrome. Between him and the Dr., they were only half concerned, but enough so to do the genetic testing. *Side note - They took the swab to her cheek and we waited 6 weeks or so (genetic testing is not a quick process, that's for sure!) to find out we did not have a future of chronic antibiotic use as well as a plethora of other scary health concerns - she tested negative. Thank the Lord!*
Her fellow also mentioned to me that he believed Liv to be a good candidate for the Pediatric Day Program there at National Jewish. This is an outpatient program of extremely intensive skin therapy and research to further diagnose and help their patients. After talking with him and the Dr. together, I agreed - this was definitely what was needed.
Five weeks later, we would begin the journey that is the Ped's Day Program at NJH.
Thursday, February 16, 2012
Sometimes You Just Need to Break and Put it All Back Together
I wish that I could say today was a great day, but it wasn't. It wasn't a horrible day, by any stretch either.
It was an early appointment at the allergist with Liv. Our day started at 5:00 am this morning - yuck! Neither Liv or myself were fully prepared for what that time of day feels like. We made the best of the hour drive and tossed in a Junie B Jones book on CD for our rush hour journey.
Nothing exceptional happened at the appointment, Liv saw one of the Dr's that she's seen in the past as well as her own allergist. Liv has had Staph infection in the past, due to her Eczema flaring up, and they were worried that we were going in that direction now. Lots of antibiotics (and I do mean a LOT), more wet wraps prescribed, good chats with the Dr's and nurse and we were on our way.
Oh, antibiotics.....
This past month has just been a tough one in general - it always is tough this time of year, but I'm never quite prepared for how it feels. If you've never had a "sick" child, beyond their health, you are just amazingly blessed. To have to tell person after person that the Dr has no answers as to WHY this is happening is hard. To be questioned by those around you and close to the situation, repeatedly just sucks (for lack of a better term). To have people tell you what "could" be going on, or comparing to what they know or have heard - frustrating (I know these are all said with good intentions). I mean, my Liv goes to the best hospital in the *nation* for respiratory illness and they are top notch for their advancements with allergies and Eczema as well (no really, we've had Dr's from around the *world* sit in on appts because they are learning from the Dr's we see). Now, because of who Liv's Dr's are, people expect them to have all the answers, well answers or "fixes" can't necessarily predict when something is going to go awry. Unfortunately, with my baby girl's health, there is a delicate balance and when one "ball" drops - everything else is just set off course. Her health tends to go off course from December to April of every year. Every year I sit, defeated until I just let it all out and move on. Today, thank goodness, two great friends didn't let me just sweep everything under the carpet - and I vented (*boy* did I vent). Tomorrow is a new day and tomorrow we carry on with this path that we've been put on.
I may sound incredibly down, I'm not, I'm tired. With that, I think it's time to call it a night and turn in - until next time, friends.
It was an early appointment at the allergist with Liv. Our day started at 5:00 am this morning - yuck! Neither Liv or myself were fully prepared for what that time of day feels like. We made the best of the hour drive and tossed in a Junie B Jones book on CD for our rush hour journey.
Nothing exceptional happened at the appointment, Liv saw one of the Dr's that she's seen in the past as well as her own allergist. Liv has had Staph infection in the past, due to her Eczema flaring up, and they were worried that we were going in that direction now. Lots of antibiotics (and I do mean a LOT), more wet wraps prescribed, good chats with the Dr's and nurse and we were on our way.
Oh, antibiotics.....
This past month has just been a tough one in general - it always is tough this time of year, but I'm never quite prepared for how it feels. If you've never had a "sick" child, beyond their health, you are just amazingly blessed. To have to tell person after person that the Dr has no answers as to WHY this is happening is hard. To be questioned by those around you and close to the situation, repeatedly just sucks (for lack of a better term). To have people tell you what "could" be going on, or comparing to what they know or have heard - frustrating (I know these are all said with good intentions). I mean, my Liv goes to the best hospital in the *nation* for respiratory illness and they are top notch for their advancements with allergies and Eczema as well (no really, we've had Dr's from around the *world* sit in on appts because they are learning from the Dr's we see). Now, because of who Liv's Dr's are, people expect them to have all the answers, well answers or "fixes" can't necessarily predict when something is going to go awry. Unfortunately, with my baby girl's health, there is a delicate balance and when one "ball" drops - everything else is just set off course. Her health tends to go off course from December to April of every year. Every year I sit, defeated until I just let it all out and move on. Today, thank goodness, two great friends didn't let me just sweep everything under the carpet - and I vented (*boy* did I vent). Tomorrow is a new day and tomorrow we carry on with this path that we've been put on.
I may sound incredibly down, I'm not, I'm tired. With that, I think it's time to call it a night and turn in - until next time, friends.
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