Tuesday, September 30, 2008

Happy News! (Yes, it does exist)

I couldn't decide which picture to post so I thought I'd share them both. :) In a rare occasion tonight after Faith's bath she kept her hooded towel on. Always the perfect poser, look how she has her hand perfectly angled to cover up her "not for internet" parts. (I think I typed the same thing a few months ago!)

I hadn't planned on writing about Faith's pulmonary appointment, but when I checked my e-mail this morning I was touched by the number of people who actually wanted to know! I didn't think people cared that much (and I don't mean that in an Eeyore sort of way) appointments are just appointments these days, but this one was a little bit exciting!

The plan with the Faith and the ventilator has been to let her grow, develop, and hopefully her bronchial malacia will decrease and she eventually won't need the positive pressure the vent provides. It's not that Faith cannot breathe on her own, she needs the pressure to stint open her floppy bronchial tubes. For some time now we've suspected that she might be able to do more on her own than she is receiving. So after some discussion, yesterday at her appointment we took her off of the ventilator (and just on 1/2 liter of oxygen) for seven minutes! Last year at this time Faith was on a rate of 24, and if disconnected would turn blue in a matter of seconds. What a difference a year makes!

With that being said, the plan is to leave Faith on the vent. When she gets over this bout of illness they will lower the amount of pressure she is receiving from a PEEP of 8 to 6. She will still remain on the ventilator for Winter. She is underweight and needs to grow. This is OK with us. Yesterday just gave us some hope that she could be off by summer. Just the thought of that sends shivers up my spine (in a good way). I cannot even imagine what it would be like put Faith in a car with just an oxygen tank..or move her from room to room in the house without having to the roll the ventilator around.

To help get her through the winter, Faith will be receiving an inhaled steroid (Pulmicort) two times a day(Thank you for the suggestion Karen! And Ann and Janay for reiterating it!) as well as her monthly snagis shot.

So that's it! Pretty exciting stuff. On another note, this past weekend we had another trachies get together! Of course Faith was M.I.A. but that didn't stop me from hanging out with some of my favorite people. Here are some pics from the day:

Above: "Hey- you have one of those too?" Below: Ms. Marissa shows off her PMV.
Below:(L-R: Marissa, Milo, Noel and her mom, Tina). It wouldn't be a trach gathering without the group picture meltdown. And Faith wasn't even there to pull hair! Once again Mr. Milo is the typical guy, "What's with the drama ladies?"

On a closing note I want to tell you all how proud I am of Brian. Yesterday he spoke to a class of over 50 nursing students about our journey. He also wanted to share with them what makes a good nurse. Something we have learned a lot about over the past year!!!

And for those of you in constant worry and angst over our sleeping situation (mainly our moms), Faith is sleeping A LOT better. For the first time (ever) I had to have an alarm wake me up for her 2am feed last night. Now that didn't stop her from wanting to get up for the day at 4am...but from 11-2 it was pure sleep! Now that's what we're talking about! ;)

Have a wonderful rest of your week!
Brian and Jen :)

Saturday, September 27, 2008

Out of this world...

This week we've gotten a lot of questions on whether or not we have taken Faith to see the doctor. The answer has been a "no" because well...once again it's complicated.

Faith is seen 100% at The Children's Hospital. Our primary insurance is Kaiser, which is an HMO. When Faith came home from the hospital we had to fight to get Kaiser to refer us to Children's. On our end we usually have to make calls to Kaiser to get referrals in order to go to Children's. It just so happens that this week the referral expired and I have been on the phone many, many times during the week trying to get it renewed.

The other complicated part is that Children's is a very busy place and Faith's doctors only have clinic appointments on certain days. If we wanted to get her to be seen on a none clinic day (or a day when they are full which is pretty much everyday) we have to go through the Emergency Room. We would do this if Faith was really sick, but we have not felt like this has been necessary this time around.

After another difficult night on on Thursday we decided that it's time to call. Fortunately the pulmonary doctor on call at Children's said he'd call in a prescription over the phone (Pulmonary docs are the best at doing that)! This was a huge relief. Getting scripts filled through Kaiser is always a headache (which it was...but I don't have the energy to go into why it was...) so we were dealing with that all day on Friday. The doctor did want Faith to get a tracheal aspirate to see what kind of junk she is growing. He suggested that instead of going into Children's for the 10 second procedure, we go to the lab at Kaiser. This sounded like a great idea because:

1.) Driving to children during rush hour can take one hour each way. Although I did drive with Faith by myself last week I would not drive with her alone on the highway...especially when she has lots of secretions. If she disconnected from the vent or need to be suctioned it may be difficult to pull over on the highway.

2.) We knew that since the referral had expired the lab wouldn't take faith anyway (we've had to wait 3 hours before to get approval for an x-ray!) I know my trach friends are thinking this is nuts, especially since we have Medicaid as a secondary, but they won't process anything until we've gotten a denial from Kaiser (ridiculous I know).

Ok on with the story...so we planned to drop by Kaiser, get the script filled, get a culture and be on our way. We even decided to make a fun night out of it and go out to eat with Faith (something we rarely ever do).

So we get to Kaiser and of course there is drama with getting the script filled. So while Brian dealt with that I took Faith to the lab. Before we got there we knew that they wouldn't know what to do with her. That was OK with us. As long as they'd let us get the aspirate ourselves we would be OK. So we roll up and I hear them whispering to each other..."oh it's that baby....no one called them?" I cleared my throat and they greeted us. They admitted they didn't know how to get the culture and I told them I would do it, I just needed a suction catheter with a specimen vile. We had our own suction, all I needed was the catheter. They looked at me like I was nuts, and came back with a cup for urine. OK...this was not going to work. I drew a picture of what I need and further explained why I couldn't suction into a cup. They came back with a bulb syringe. That's when I knew I was on my own on this one. I had several Macqyver-esq attempts at making my own catheter. I thought about emptying the canister, suction and dump the contents into the urine cup. Even with saline I knew I wouldn't get enough. A few months ago a situation like this would have given me an anxiety attack. This time I just didn't care. After speaking with a few more nurses (and even doctors) I gave up. At this point all we needed was the antibiotic.

We ended up waiting another hour for the antibiotic. Apparently they were waiting for "approval" (whatever that means).

As you can imagine we get lots of looks when we are out with Faith. This usually does not bother us. I love it when people come up to Faith and acknowledge her or ask questions (which usually doesn't happen...we just get stares..) but like I said it doesn't usually phase us. On this occasion the stares did bother me. We were in a place where we didn't belong. We were in a health care facility that couldn't help us. Lab. techs, nurses and doctors didn't know how to get a simple culture from our daughter. I felt like she was an alien and we were far from our own planet. We felt helpless.

This wasn't the first time I've felt like this. I will never forget the two times we called 911 when the paramedics showed up and on both occasions and told us that we knew more than they did. While I taught the paramedic how to suction in the ambulance I remember feeling so alone...so isolated. Is our child so complex that we are the only people who know how to take care of her?

2 1/2 hours later we left Kaiser. As we were driving to the restaurant ("Sooper Salad" hardly a restaurant but for three people who do not get out much it was a treat...) I got a phone call. It was Apria. They were waiting outside our door with the ventilator we had been requesting all week. Faith's secondary vent had been malfunctioning (which is a whole 'nother post) and needed to be replaced. No one ever told us they were coming. 99% of the week someone is home with Faith. Of course the night we spend three hours at a clinic and make plans to go out as a family they come.

Every time we go out I am reminded of why we don't go out.

We got home to find one more person (a respiratory therapist) who does not know the first thing about ventilators. Not a problem. We can set everything up. This all came a few hours after my "sometimes" post. I guess sometimes everything falls on us.

The propose of this post is not to complain or "go off'" on people or the medical system. If I wrote about everything that happens to us on a daily basis with this type of stuff I'm sure we'd lose every single blog reader we have. I wanted to write about this so that you might get a tiny glimpse of what families like ours go through just to keep out children alive.

As we drove away Brian said, "You are blogging right now aren't you? (implying that I am doing it in my head). I told him.."Honey, I've been blogging since we left Earth."

If you made it this far, thank you for listening to my rant. Sometimes it helps just to get things off your chest. :)

Brian and Jen

PS: To my fellow trachesto-mommies: You are probably saying to yourselves...Jen why didn't you have a Delee? On this occasion I didn't bring the usual trach bag filled to the nines because I thought it would just be a quick trip (I'm such a novice, I know). We do have a delee in that bag, but of course the one time I need it we don't have it! Such is life.

Ok and I just have to add this- as I was finishing up this post I happen to look up from the screen only to see Faith and her g-button (feeding tube) laying on the floor five feet away from each other. When it didn't go in right away and we thought it had closed. Oh no, here we go again- time to go to Children's....well maybe we'll finally get that aspirate! Fortunately it did go in. Maybe sleep is in the Lord's plans. ;)

Friday, September 26, 2008

The easy part.....

Sometimes this isn't so hard. Sometimes I am not a nurse or a respiratory therapist. Sometimes I am just a mom playing with her baby girl:

It's these "sometimes" that make up for the more difficult times.
These sometimes remind me that miracles do exists.

May you see the miracles in your day,
Brian and Jen

Wednesday, September 24, 2008

Another night in paradise part II

Here' a riddle for ya: What do you get when a baby who already has sleeping problems is possibly coming down with a respiratory infection?

Exhausted Parents.

Despite not writing about it on the blog, Faith has been sick a lot this summer. Nothing major. But when you have a child with chronic lung disease who is trach/vented the littlest cold can throw everyone off the edge. As if nights with Faith weren't hard enough, when she is sick there is not a wink of sleep in our house. Faith has needed so much suctioning the past few nights.

Although Brian and I take turns taking care of Faith during the night, when push comes to shove and 3 am hits it's usually a two person job. It's very exhausting to be up night after night, work with kids all day, come home and do it all over again.

On these particular nights my heart goes out to Faith. She just looks so miserable. She wants to sleep... she just can't. During the day she still has copious amounts of secretions but is her smiley self. So obviously she's not that sick, but sick enough to make us all a little out of sorts this week.

As with any parent, however exhausted we are, when we see our baby girl's smiling face it makes it all worthwhile. :) Here's a few pics that will (hopefully) make you smile:

Faith out and about for her Uncle Josh's (Jen's brother) birthday party. It was also her Uncle Kevin's (Brian's brother in Buffalo) birthday last week so happy birthday to all of the uncles!
(And Uncle John in Atlanta if you are reading this happy belated b-day to you too!)

Faith on another adventure at Bass Pro Shop.

had a nice surprise last week when Faith's friend Noel was in the area and stopped by. The hit toy of the play date? Noel's ventilator. Y'up. The two girls got up close and personal with the machine that keeps both of them alive. I tell ya..never a dull moment...

We hope the rest of your week goes more smoothly than ours!

Brian and Jen :)

Saturday, September 20, 2008

Reclaiming Motherhood: One Shopping Cart at a Time.

As with any family, weekends around our house are very busy. Brian and I wake up each Saturday morning with an agenda. Since Faith is pretty much tethered the her ventilator we have to take turns getting things done and taking care of her. This makes running errands a little tricky. Today we found a way to make it a little bit easier (in a more complicated way).

As we have written before, getting Faith out of the house is an ordeal. Honestly we don't do it as much as we did during the summer. Inspired by my friend Tina, who out of necessity takes her daughter who is trach/vented out by herself all the time, I decided today was going to be my day! So I packed Faith up, changed her car seat to forward facing (which was an ordeal in itself...) and headed out solo.

At first I was going to take her to the grocery store, but then I realized that I do in fact need to buy food and with Faith that may not happen. I remembered we have a couple of weddings coming up so I headed for Bed Bath & Beyond. Getting her in and out of the car is 90% of the battle and once she was in the shopping cart (with her equipment which took up the entire cart itself) I strapped the suction machine to the handle bar and with the ambu bag in tow (which was in my purse, btw), we were on a roll.

Faith did very well for first time out alone. And so did I. The reason why I've never done this before isn't because I'm scared of handling her by myself, it's that the process is...well...complicated. I found strength in numbers, thinking about all the trach/vent moms who do this by themselves everyday and I soldiered on.

I have been looking forward to this day for a long time. I thought it was going to come someday when she is off the vent, I'm glad it came sooner. Every week at the grocery store when I see other moms with their young children I'm reminded again of the limitations my child faces. I can't just throw her into the car and take her to the store like a typical parent would. Once again something that was taken away from me was restored. And something was restored in Faith too. While she has a happy life, I do feel bad that she spends 99% of her time on a 4 foot rug. As an early childhood teacher, I know how a child's early experiences shape their development. Faith hasn't had half the experiences that kids her age have had which makes me feel a little guilty for not getting her out as much as we should. Nevertheless, little by little both Faith and I will get to reclaim those experiences, and relish every minute of them, one shopping cart at a time. :)

Enjoy the pics from our adventure:

Here we go! I think we both can handle this!
The people in the store probably thought I was nuts snapping pictures of my baby in Bed Bath & Beyond, but if I really cared what people thought of us I wouldn't have gone out in the first place. :) And of course I have to document these milestones! (This one was a "mommy milestone")

Faith found her next sleeping arrangement. A butterfly "big girl bed." Oh yeah and the glasses are back! I think Faith was so distracted by everything she didn't even notice they were on. Although she did fling them across the floor of the store several times so never mind!
Always a music lover, Faith's favorite part of the store was the "music medley" display. I didn't notice it at first and rolled right by, but Faith turned around to look at it. It was just too cute! So we took a few minutes and just listened. :) And yes, even though we were shopping for other people I gave in and let Faith "pick out' a place mat. ;) Actually it was kind of nice to be in a store with a toddler who can't vocalize, or point. "You get what you get" takes on a whole new meaning..
All that shopping was exhausting! Time to head home.

Tuesday, September 16, 2008

This just might make you smile too.....

I received an e-mail last night from a fellow trach/vent mom who just brought her baby home from the hospital. I got such a kick out of it. It truly made my week. Here's what it said:

"You know you're a special mommy when you hear something beeping and frantically run through the house checking all the equipment and the baby all the while your cookies are burning in the oven!! "

The mental picture I have of this mom running around her house checking all of the equipment while her oven beeps is just so amusing to me. Maybe this is because I too have been frazzled by non-medical beeps.....maybe it's because the fact that we can find humor in this twisted world we are all immersed in is refreshing...or maybe it's because when we met as Colorado trach mommies last month this mom was there but her daughter was not- and when we meet in a couple of weeks she will be...maybe it's because I know how good it feels to finally be able to bring your baby home and I am so incredibly happy that another mom finally has her chance to experience that same joy.

Wishing you that same kind of joy this week,
Brian and Jen

Little after thought: It just irks me that children and families are just sitting in hospitals waiting for nursing. I am on a mission to start advocating for these families.

One more.... we were so excited when we saw a clip of a rally for Amendment 51 on the news tonight...until we watched the less then a minute "segment" that didn't mention anything about what the bill was for or who it would affect. UGH! So we need to call out the troops and get the word out. Next week yard signs will be available as well as bumper stickers. If you live in the Denver metro area and want one, I will personally drive it over to you!!! (Yes, this means that much to us!)

Sunday, September 14, 2008

Say Cheese!

These days it seems like I'm always blogging in my head. I have several drafts in the works, its just a matter of sitting down and actually finishing them. We'll keep things light today. Here are some pics from the past few weeks:

Having a ball: Daddy and Faith take in the game.
Showing off those toothers and her Broncos' blue and orange.
So where are the glasses? You've got us. Faith has decided that she doesn't "need" them anymore. Anything that gets remotely close to her head is immedaitly thrown off. Those things in her hair? They lasted about 10 seconds....just long enough to snap a few pictures. :)

Tree hugger at heart: Doesn't Faith look like such a Boulder girl in this pic? The only thing missing are the Birkenstocks. Look at Elway in the background- he is resting his head on the oxygen tank...oh the ability to adapt. Those of you with young teens or "tweens" will appreciate this: May I present to you the fourth Jonas Brother. Or should we say the Jonas sister. Post-bath Faith's curly mop is at it's finest. :) (Brian assured me that 90% of our blog readers won't know who the Jonas Brothers are. To this I replied, "well then the 10% that do will get a kick out of it. "
Faith is becoming increasingly more aware of the world around her. A few weeks ago I caught her starring at the butterflies on the sheets of her crib. This was such a neat moment for me. She also has recently discovered her feeding pump. I think she thinks her crib comes furnished with it's very own TV. She is intrigued by the bright screen. You might also notice that Faith is on her tummy! I really hope her therapist at Children's are reading this because they know what a big accomplishment this is!

And you asked for it Ann so here's the Autumn cheese. To get the entire affect I'd have to show ya room by room but I will spare you all the boredom (this time...Christmas...is another story).

That's all for now. It's time to get caught up on "life" and get ready for the week (this weekend sure seemed to fly by). At least we'll get this week off on a good start- in a collision of cosmically too-good-to-be-true events we are finishing up a string of 3 nights in a row with a night nurse! Let us know if you see any pigs with wings. ;)

We hope you have a great one,

Brian and Jen :)

Thursday, September 11, 2008

The Courage to Heal

September 11th will always be the day we remember exactly what we were doing seven years ago when we heard the news. It will be a day that always strikes a chord.It's a day of reflection and remembrance. It's a day that reminds us how vulnerable we really are. I remember feeling scared of a repeat attack on the very first anniversary of 9-11, a certain degree of security was lost that day.

And today, I can't help but feel the same way on the first year after a very traumatic event that happened in our home. A year ago today we brought Faith home from the hospital in another failed attempt. As one PICU nurse put it when we were readmitted- "we were set up to fail."

Everything was wrong; The ventilator was held together with twisty ties because parts were missing. The head RT from our medical supply company gave us incorrect instructions on the heater that supplied the humidity, thus she wasn't receiving the proper amount which lead to a plug. We really didn't know the ventilator, we rushed through "training" so we could go home. And we had a night nurse who was coming back from taking three years off of work. This was her first night back and the first time taking care of anyone with a trach or on a vent. We were a little naive and completely and exhausted. We were just ready to be home.

For those who have been following this blog you know the story- we are awoken by screams and alarms. Our nurse barged through our door screaming that Faith was dead. As I have said before we have seen her blue before but nothing like this. There were many days in the NICU when I thought it was going to be the day. I would step out of the room while they resuscitated Faith thinking..OMG, OMG...this is it. That night when I reached for the phone I remember thinking....This is how my daughter is going to die...this is really it.

I can still remember my exact thought, the exact feeling as I reached for the phone to call 911 (While Brian resuscitated Faith....) I remember screaming into the receiver for them to come. There was a lot of yelling. The 911 operator tried to keep me calm but counldn't stop screaming. It took four minutes to get Faith back...while that might sound like a small amount of time in resuscitating time it seemed like eternity.

It was a simple disconnect from the vent in a place that should have been more secure. It was not the nurses fault. It was not our fault. It just happened. In an unrelated event Faith continued to have episodes after that, when we got the the hospital we learned she had a mucus plug in her lungs from not receiving adequate humidity.

This post isn't about placing blame or about rehashing old, painful memories. It's about how we have overcome them. After the "event" the last place we wanted Faith was at home. We lost our nursing and we didn't care. They told us it would be many months before nursing would come together again, we were extremely grateful for this. After spending 7 months in the hospital we couldn't wait to spend 7 more (and as you know that's what we did).

For the longest time I couldn't even be in our house. When I wasn't sleeping at the hospital I went to my mom's house. Once a week I would run home and quickly gather everything I needed. Each time I went home it just felt like death was there. I know Faith didn't die, but it felt like that to us. And in a way something did die. We no longer felt safe in our own home, and we certainly did not feel safe with our daughter. We thought about selling our house, rearranging furniture, painting the inside...anything to "cleanse" the negative aura that seemed to have engulfed our house.

Anytime anyone mentioned the prospect of going home (which never really presented itself until last Spring) my stomach would sink. Care conference after care conference the case manager would tell us apologetically that there wasn't any nursing and we couldn't go home. We smiled widely and said.."great!"

Over time the house felt a little less eerie but it was never the same. That year we didn't decorate for holidays like we normally do, we ate Thanksgiving dinner in Faith's hospital room, and for the first time in both of our lives we didn't put up a Christmas tree. For the longest time I couldn't bring myself to sit on the couch, where a few feet away Faith had laid there lifelessly that night.

A year later our house is bustling with life. We dug out all of our fall decorations and however tacky it might be, we have littered our house with fake fall leaves cheesy pumpkin knick knacks. We sit as a family every night on the couch, watching TV, laughing and just getting a kick out of Faith's spunky personality.

A year ago I could never have imagined feeling safe at home with Faith. Now I don't feel safe with the thought of Faith in the hospital! A while back a friend of ours who had a daughter with a trach told me the day was going to come when I wouldn't wake up thinking..Is this going to be the day I call 911? A year later...on 9-11 I can confidently say the thought hasn't even crossed my mind. :)

Saturday, September 6, 2008

"To whom much is given, much is expected." -Luke 12:48

Thanks for all of the kind messages of support regarding my last post. I truly appreciate your words of affirmation and encouragement! (And yes, thank you to my friend of many years, Amy for pointing out that I do have a history of offending people with my writing! I think that's what turned me from a journalism major into the far more diplomatic elementary ed. teacher).

I had planned to go on a blogging hiatus for a while...but with all of the political hoopla buzzing around these days I cannot keep my mouth shut...especially when this means so much to so many people. SO yes, I am going to be getting political here and if you don't want to hear it you don't have to read it. :)

People often ask how we manage to pay for all of Faith's medical bills. While we do have private insurance, it is not the best (compliments of Denver Public Schools). We carry a hefty premium to keep our family covered and as you can imagine we have lots of medical expenses. It's not just the doctors visits or the co pays for Faith's meds, but the all of the equipment and supplies that carry a high cost. Our insurance plan pays for 80% of Faith's durable medical equipment. Just Faith's ventilators alone cost over $1,000 a month. Our basement looks like a hospital supply room. We have boxes and boxes of everything from suction catheters to tape and gauze. As you can imagine our 20% we would have to cover would reach into the thousands.

Thankfully we do not have to pay these expenses. We are a part of a program that helps people and families who have developmental disabilities pay for medical bills and services. Currently in the state of Colorado there are over 12,000 people on the wait list to receives these services. The average wait is 4-5 years. Because Faith is on a ventilator we were fortunate enough to bypass this wait list and get into the program. Unfortunately this is not always the case. We know of families who SHOULD be receiving these services but are because of some flaws in the system.

Without this program we would surely have lost our home, living God knows where, and in debt up to our ears. This program does not only cover medical expenses for special needs adults and their families but provides vital therapies and necessary funding for rehabilitation programs. I received a letter a few weeks ago about a man in his thirties struggling with a developmental disability who is waiting to enter a job skills program so he can cover the cost of his medical expenses. I read he has been on the wait list for 4 years.

I will never forget the nights I spent in the hospital next door to Faith in Emily's room listening to her mom stressing over all of the medical bills. Their insurance had capped off and they were going to be responsible for the rest of their dying daughter's care. She was desperately trying to get into the Medicaid waiver program to help cover all of the medical bills.

These are real people with real problems. It is difficult enough to live with a disability, worrying about medical bills and services should not be one of them.

On November 4th, Colorado voters will have the opportunity to end this wait list.

Like most government programs this bill does come with a cost. In order to fund these services a 2 cent sales tax would be added to every $10. In my mind it's like spending $100 at the grocery store and dropping 20 cents in the can on the counter for a local charity. In my mind, this program is worth the cost. I love how organization to end the wait list put it on their website:

"Amendment 51 is a small price to provide vital services for children and adults who, thorough no fault of their own, face tremendous burdens every day just getting by. "

I know most people are not in favor of a tax hike- but imagine what it's like for a family not only coping with raising someone with a disability but also struggling with the costs that come with it. Think of the adults who do not have access to vital resources. I believe it is our duty to help those in need. After all you never know when your time of need will come. And, yes I DO believe it is our governments job to hep with these needs.

I was wrong, this is not political, THESE are people, facing hardships because they were dealt an unfair card in life. Please join us on November 4th to put an end to the wait list! If you do not live in Colorado please go to http://www.noewait.net/ to find out how to end the wait list in your state.

If you read all of this, THANK YOU! This means so much to us and the other families waiting to receive services.

Thank you for standing with us to support this effort!

Brian and Jen :)