Construction update...the next week

The beginning of the week brought a lot of excitement!  The official start of this project had started with the ordering of the trusses for the roof.  Once they were ordered, everyone was invested in this project and we knew we were on our way.  It wasn't until the builder had placed the order that we felt comfortable telling the kids.  So, we were all very happy to see them arrive as if felt like the first hurdle of waiting was over.  Well before the sun was up, this crane arrived with our trusses.  I was trying to capture pictures, stay out of the way, and get kids really for school, so it was a whole lot of craziness!

It was very interesting to watch the process of the trusses going on.  There were three guys and it took them less then an hour to get them all up and in place.  These guys knew exactly what to do and barely had to talk to each other, they were so in sync.  

Later that morning, the port-a-potty arrived.  It is not everyday that you get a portable toilet delivered to your home!  Thank goodness for this invention though as we have a lot of construction workers here at the house every day, not to mention that by the end of the week we would be done to 1 bathroom for all 9 of us in this house!

The next delivery was the dumpster for all of the trash.  It was bigger than I expected but I am pretty sure we won't have a problem filling it up by the time this project is complete.

By the end of the day, Keyan's room had trusses and plywood on the top and the plywood walls started going on.  Amazing!

Friday morning the builder had to open up the hole in the wall between Keyan's room and the kitchen for a few minutes and she was so excited to see it from the inside.  It has been hard for all of the kids to envision how the room will flow with he rest of the house so this made it a lot easier to understand.    She had a difficult week health wise so it was so great to see her smile and be happy!

Friday morning also brought the bathroom demolition!!!  Giving Keyan her own space has so much value for all of us but making this bathroom more user friendly for 7 people ranks right up there too!  In case you have never been to our home, here are some before pictures.  This one is taken from the main door of the bathroom looking in.  It was a simple lay out with the linen closet, toilet (which you can't see in the pic), and vanity all on one wall and the tub/shower at the end of the room.  

This picture is from the door way into the master bedroom, looking through to the hallway.

Just another view from the hallway...you can see where the toilet is in this one.  Not only was the bathroom extremely outdated and gross, but there was not nearly enough storage no matter what I did!  It was not uncommon to have Keyan in the bathub, a nurse kneeling in front of the tub helping her, several people brushing their teeth, and someone using the toilet all at the same time!  No such thing as modesty in a large family with not enough bathrooms!!!

The bathtub had been painted at least two different times by previous owners and those layers were all peeling off.  It had gotten to the point where no matter what we used to clean it, it never looked clean anymore.  I was thrilled to watch the plumber start removing it!

It didn't take long for two guys to completely gut the entire bathroom!

By Friday afternoon...this is how the bathroom space looked! We were all so excited to be to this point!  It is hard to tell, but not only was the room completely gutted, but the plumbing rough-in had begun!

Here we go!

I will start with some before shots...Here is our home from the back.  The bay window is where Keyan's room is going.  

 You can see that this was after the first day where they dug the holes for the supports.

My Dad and Paul had to cut the grapes back and get the side yard ready to be the staging area for the construction.  

Day 2 brought some demolition to the inside of the house.  The girls decided they needed one more picture taken in the bay window that morning.

Paul and a friend of ours built this storage for the bay window so I think it was a little bitter sweet for him.

By mid-afternoon, our dining area looked like this!  I have to admit that it was quite a shock to loose the windows for now.  It changes the lighting and feel of the kitchen so much but I know that it is only temporary. indwell be so much more than I can even imagine when it is finished.  

 Here they are in the process of prepping the house for the addition.  

 By the end of the third day, we could walk on the "floor" of the new space!  It has been absolutely incredible to watch the process take place.

 The highlight of the afternoon is coming home from school and going to see how everything has changed.

 We helped Keyan and her sisters up into the space so that they could explore a little bit.  

 Four days into our project and this is how far we have come!  Amazing to me!  We have an incredible General Contractor who is passionate about this project and keeping it moving in the right direction.  God has blessed us with the crew that we are working with.

Exciting news

It is with much excitement that I share the latest happenings at the Hogan household.  Watch the video to see me breaking the news to the kids.  The entire video is over 7 minutes and there is just a lot of dialogue after the first two minutes or so but the beginning is priceless!

Thanks to a local non profit group, we have begun construction on an addition to our home!  Plans have been in the works for months and this new space will be Keyan's.  She has always slept in the living room.  We need to be able to observe her in order to keep her safe, so our living room has always been her "bedroom."  It is full of medical supplies, her bed, monitors, and her equipment.  We can run a pediatric ICU room when we need to and there have been many times that we were able to keep her home instead of taking her to the hospital.  With the knowledge that this isn't going to change, we are thrilled that she will have her own space.  She and her nurses (and all of her stuff) will be located all in one place instead of having supplies spread out throughout the house and garage.  

Keyan has never once complained about being in the living room so we were blown with her reaction to the news.  She was so happy she was crying!  Paul and I were too by the end of it.  We also get to remodel our bathroom and do some sprucing up to the other kids bedrooms so this is one major project! We are so grateful for God's blessings in our lives and the way that He is bringing all of the pieces together for this to happen.  

Just last Monday they broke ground to dig for the supports structure.  Every day has brought new changes, decisions, and even more excitement.  The kids have all loved watching the transformation.  

We already have lots and lots of pictures so be sure to check back for updates!

Community

Keyan and I went to a gathering tonight for the blind and visually impaired kids in our Intermediate School District.  We went to learn about apps for the iPad that might be helpful.  The information was very helpful but the sense of community was the best part.  Keyan thoroughly enjoys being with this group of kids.  They only get together 1-2 times a year and it is kids of all ages but Keyan was so excited to go. She knew that it was only for kids with low or no vision and was proud to be a part of that "club."

It was striking to me how comfortable Keyan is with this community.  The facilitators of the group are visually impaired specialist that work with these kids all of the time so they do a remarkable job interacting with the kids.  They make sure the kids get a run down of the facilities, using non visual cues that the kids all understand.  They always introduce themselves when they are talking to the kids one-on-one, and they make proper accommodations for them that the rest of us "seeing" people don't even think about.

When you look at Keyan, you do not immediately realize that she is visually impaired but she actually has quite a hard time navigating unfamiliar territory and has VERY poor vision.  She has worked with a vision specialist since she was three.  She is working on the beginning stages of braille, she uses several apps on her iPad that read aloud to her or enlarge print, and just this year, is learning how to use a white can that you see blind people using.  She works very hard to learn how to be independent in a seeing world.  I think that is why she enjoys meeting with these kids so much.  She is on an even playing field.  The activities they do are designed for kids like her, the games they play are possible to play even if you have no vision, and the places they go focus on taking the world in through other means than their eyes.  It is so cool to see.  In school, Keyan is learning how to navigate her world using a cane and she went tonight and meets people who use a cane all of the time.  How cool is that?  I think we all know that feeling of being with people who just accept you for who you are.  I have a few friends that when I am with them, I know it is completely safe to be my real, see through self.  I don't have to pretend that everything is alright, I don't have to hide my neurosis (not that I do a great job at that any time), I can laugh, I can cry, and I don't have to be ashamed of the things that make me different.  This is what I saw in Keyan tonight.  She was totally at ease, happy, talkative, and "at home" with these kids and special adults.

As I drove home, the full emotions of the night hit me and the tears fell.  They were happy tears, mixed with tears of sadness.  Tears for the fact that after seeing her with her community of visually impaired kids, I have to face the fact that she isn't 100% comfortable in her every day life.  I want her to feel safe, a sense of belonging, comfortable, and to not have to worry about trying to keep up with her peers. After tonight, I know that although she never voices it, she struggles to feel that all important sense of community in her day to day life.  I know that I can't offer much to change this.  I know that I need to learn how to make her more comfortable...I need to pay attention to her silent cues.  Mostly though, I was just so grateful for tonight.  Thankful for the people that specialize in kids like Keyan, thankful that they are willing to teach me how to help my girl.  Thankful that they understand the need for these kids to socialize with others who struggle to see.  Thankful that for a brief few hours, they were able to make Keyan feel "normal."  

The whole sense of community has been on my heart lately as we venture into some fundraising for Keyan and her quality of life.  Two weeks ago, we started a "go fund me" page and the outpouring of support has been incredible.  People are sharing our story via social media, people are donating, her friend at school is collecting returnable cans and donating all of that money, people are planning fundraising events, and friends have put together a flier that we keep seeing out in the community just to name a few special things going on.   It is amazing.  Our community, both local, and all over the world, has stepped up to make a difference in Keyan's days.  Raising a special needs kiddo is often very isolating and lonely but I have been reminded over these past two weeks, that we are anything but alone! In case you haven't seen her page, it can be viewed at www.gofundme.com/keyanhogan

Eyes

We took Keyan for her checkup in Cincinnati last week and I have spent several days attempting to process my feelings about the trip.  It is always hard to put my thoughts into words after we leave this  place that plays such a huge roll in our lives. It all hit me as we were making our way through the busy main hallway of the hospital to leave.  My thoughts instantly consumed me, stopping me in my tracks and tears formed.  I realized at that moment the defining thing about the appointments were people's eyes.  As I let the tears fall, grabbing tissues from the germ display on the wall, it hit me that the doctors and nurses eyes were different this time.  

William Henry is quoted as saying, "The eyes shout what the lips fear to say."  I realize now that that is exactly what happened in that examine room and why I felt like I had been kicked in the stomach during that appointment.  Every question they asked, they just nodded their heads to our answers.  Almost two years into an official diagnosis, and almost ten years into Keyan living with this disease, the doctors can only nod, agree, and say, "that is what we would expect."  Every single thing they asked, they already knew the answer.  Every single thing they suggested, we have already implemented.  The look in their eyes was one of sympathy, one that spoke much louder than any words they used.  That my friends, is hard to see.  I am very used to sympathetic looks and comments and they don't even bother me.  I understand completely why the general public, and even our family and friends look at us with that, "I am so sorry" look.  But when the top GI doctors looked at me in that way, it hit me to my core.  

Many of you have asked us over the last 6 months how Keyan is and many more of you have heard me say that she is good, but that it is taking so much more to keep her at that point.  Managing her care every day blows my away.  It is a constant cycle of trial and error, treating symptoms, dealing with the loudest problem while the others hang heavily in the background, and guessing at what the best thing is.  It is a life with many more questions than answers but the beautiful thing is that Keyan has no idea the level of complexity.  For that, I am immensely grateful.  While I struggle to make sense of it all, she continues to live this life with incredible amounts of joy.  She continues to smile, laugh, dance in her undies, and embrace every day as if it were a gift. My conclusion therefore is that while the worries make me weary, my job as Keyan's mom is to follow her lead emotionally and continue the fight....continue the craziness....continue the juggling act...all with a heart full of gratitude.  Thankful for another day to fight for her, thankful that we are able to keep her managed so well, and thankful for the way she touches my heart every single day.  The bottom line???? We just keep keeping' on!  The doctors may not have a lot of answers or suggestions, but we will just keep doing what we are doing because today she is full of life!

My school prayer

Dear God,

Bless these special kiddos today.  Seventh grade and fourth seems so grown up.  Thank you for a wonderful summer filled with camps, sports, friends, family, and relaxation.  Keep them safe both physically and emotionally.  May they be friends to those around them and may they be surrounded by friends that build them up.  Help them feel secure in who You created them to be and let them feel your arms around them this school year as they continue on the path you have them each on.  I pray that their days are filled with laughter, learning, and a listening heart.  Bless all who may come across their smiling faces.  Thank you God for giving me these five children, and as my tears fall this morning with worry and fear, may you use their time in school to renew my spirit.  May their time at home with us be a safe place to fall and let them be feel our love for each of them.  Amen.

And....we are off and running!!!!!

New Trach!!!!

Besides Keyan needing emergency surgery over the weekend because her central line fell out, (Never a dull moment around here!), I have spent the last two weeks doing not much else besides fighting for the trachs that Keyan needs.  It has been literally hundreds of phone calls, emails, voicemails, letters, and even more tears and vents of frustration.  It comes down to the dollar amount that the insurance company will reimburse the medical equipment company.  It is very complex and confusing because it basically makes no logistic sense.  

After my last blog post, several of you very generously offered to help buy Keyan her trach.  That was never my intent when sharing our dilemma but none the less, it was so comforting to hear from so many people who love our girl and are willing to help her.  The support we get from all of you means so much to us. 

To make a long story short, while we proceeded with ordering the custom trach (which is not the ideal one, but is the one that we can get covered), I had a lot of conversations with the manufacturer of the new trach and even the product developer.  Yesterday, I received a call from them and they told me they were sending the trach that Keyan needs to us as a "sample", with no cost to us!  I could not believe my ears.  This is a small company just working at getting off the ground.  I never expected them to do this.  The woman said, "We do not want this to be a hurdle for you right now.  We know that caring for kids like Keyan is hard enough.  Yes, we are a company that needs to make profits, but we also do not want kids to go with out what they need."  WOW!!!!  What an impact they have made not only on Keyan but on me.  We feel so blessed by their generosity.  They overnighted them and we received them this afternoon.  I seriously felt like it was Christmas when UPS arrived.

We are ultimatly upsizing Keyan from a 3.0 diameter to a 4.0.  That is no easy task though so we started tonight with a 3.5.  It was difficult to get in, but we eventually got it.  She coughed for quite awhile and said that it felt "different...even when I breath." It didn't take long though before she was going on with her night like nothing ever happened.  She has been anxiously awaiting a longer trach because the shorter one is causing so many problems. She was excited to try it out...which is a good thing because her excitement overcame the pain and fears.

The two trachs that this company sent will only buy us time. So for now, I will continue fighting for this crazy piece of plastic that gives Keyan a better quality of life.   They sent the one that she needs, and a smaller back up one.  She will continue to need two of the correct size every month.  But, I will not have to fight watching her continue to suffer.  She will be breathing easier and hopefully no longer bleeding from the irritation of a short trach.  She can go on being her happy little self while I try to plead to the powers that be!  Please continue to pray that the medical equipment company will see the absurdity of paying thousands of dollars for a custom trach when the ones that we want are less than $200.  While it makes no sense....it is the system we are stuck in.  When Keyan's ENT listened to the problems we were having and tried to catch up on all of Keyan's recent medical history, he looked at me and said, "You need a problem that can be answered, and I can give you that!"  It was awesome to feel like he understood the complexities of Keyan and was honestly happy that he could take some of the burden off my shoulders...little did he know that he was creating a battle!  However, I will always go to the ends of the earth to make Keyan's day the best one possible. Today, with a lot of help from the good Lord above,  and some people who genuinely care about kids,we managed to do just that!

Checking her new trach out in the mirror...look at that smile!

The current fight

$194.25....This is what stands between Keyan getting the new trach that she needs right away and waiting 2-3 weeks for one to be made.  $5.75 shy of $200...means my daughter can't breath as efficiently as possible for another 2-3 weeks.  $194.25...what is keeping me awake at night and dominating my thoughts during the day.  

Let me explain.  Keyan has outgrown her current trach.  We saw the ENT at the end of March to address it and he measured her as needing a trach that is 15mm longer than the one she currently wears.  He than explained that he was going to try and order one from a company that makes that size  as a standard size but that it was a newer company on the market so he may not be able to get it.  If not, he would have to order one from the company that we have used for the last nine years, but they would have to custom make it.  "Custom made" were words I dreaded hearing.  We have been down this road before and it was horrible.  Keyan needs two new trachs each month to keep the risk of infection down.  That is the bare minimum.  Because we now have to have a custom trach made instead of a stock trach, the price of that trach skyrockets, and her insurance will only cover 1 trach every 6 months!!!  That is completely unacceptable.  Oh, don't worry...we will fight it, we will have doctors write letters of medical necessity, and we will do everything in our power to get two a month but we will have to do this EVERY month and will still not have any guarantee that we can get Keyan what she needs.  

So, we began the process right away and we went after the trach from the new company.  Finally, eleven days later, I was able to get some answers as to where the process stood.  Our medical equipment company informed me that "they had done everything they could" and were not going to be able to get the trach that the doctor had ordered, so they needed to get the information to custom order from the original company.  I immediately asked a lot of questions, talked to several people and eventually had to give in to the fact that I was at a dead end with this company.  Fine...I will track down this new company and go from there.  I did just that and discovered that they have dealt with another medical equipment company here in Michigan.  So, I called that company to see if they could order the trachs for us...and despite three phone calls, I have yet to get an answer.  Meanwhile, my daughter is waiting and needing a longer trach.

This morning after some other calls, I called the manufacturer of this new trach and actually got to talk to the product developer.  The purpose of my call was to ask how much the trach would be if I private paid.  That is where the $194.25 comes in.  That is how much this little piece of PVU costs for me to buy.  This piece of life saving "plastic", this artificial airway that allows Keyan to breath easier and clear her secretions.  Do you have any idea how maddening it is that this trach sits on a shelf two states away waiting to be overnight shipped and I can't get it?  Instead, the process that we have to follow is that we have to order one to be custom made and wait 2-3 more weeks to get it.  In the interim, Keyan is not only more fatigued, but she is so frustrated.  She doesn't have the freedom of movement that she should have because if she moves to much, her trach pops out.  When she talks, she often holds the trach so that it stays in.  She is so frustrated to have to keep dealing with a trach that keeps coming out.  It doesn't feel good in her body and it isn't doing its job.  

Not only that, but the product developer and I talked and he was telling me that one of the main things they were going after in developing this new trach was to eliminate the cancer causing agent BEHP out of their products....great!!!  I know that having all of these medical devices comes with a lots of unknown risks, but I hate having it confirmed. In the end, what I have learned is that there is a trach that is not only the perfect size, but also safer for her...and we are trying to climb mountains to get it.  Does that even make sense? UGH!!!

I am not giving up, you all know me too well to even think that.  I am also not writing this to gather sympathy.  I am simply sharing this to make people aware of the insanity of it all.  You have heard me say before that Keyan takes a whole person to manage her and keep giving her the best day that she can have every day.  Between appointments, prescriptions, insurances, supplies with three different companies, nursing staff, and fighting the constant fires that are always burning, there is always too long of a to-do list.  This is just one example of the hurdles that are in front of us.  Not only is it exhausting, maddening, and so frustrating, but is breaks my heart to watch Keyan struggle with a substandard piece of equipment when there is a solution.  Anyhow, I am off to keep climbing...in between giving these kiddos a great spring break day!  Please join me in praying for a rapid solution!!!

We sure do love this girl, and no matter how exhausted, we will keep fighting!!