Home Sweet Home

Just wanted to give the blogospher an update that WE ARE HOME!

I'll write more later, but wanted you to know we are back and all the five Weigner princesses are under one roof.    So though we are home, life is probably even more busy, but anything to have the best recuperation possible for Bekah. 

Here she can get a good night sleep.  She is able to be outside for some fresh air whenever she wants to be.  (in the hospital she was not allowed under any circumstances to leave her room.).   She is able to do an inhaled antibiotic which she wasn't allowed to do in the hospital.  Sounds a little strange right.  Well the infection control of the hospital doesn't like aerosolized mixutres due to resistance with bugs in general, and that can cause more super bugs in the hospital and with cancer patients and those fighting other intense diseases that is the last thing they need.  So I understand it from their perspective, but am thankful here she is able to give a  fight from all angles against her bacteria.  The antibiotics going right into her blood to knock out the life line of the bacteria, or at least weaken it, and than topically with her breathing it in, to immobolize it's strength even more.

Maybe I can have April give a physicians description sometime for all the scientific heads out there.

So Bekah's schedule now consists of getting three different antibiotics during the day.  Two of them she does three times a day, and the other one she gets a large dose once a day.  Four times a day she also needs to do a nebulizer with several different therapies that are aerosolized, followed by different types of physical therapy to help knock out, shake out, vibrate her lungs.  Since the bacteria is getting weakened, Bekah needs to take advantage of really doing whatever she can to get it out of her body.  This isn't an easy thing, since she has thicker mucous and the bacteria isn't excited about leaving...this is a lot of work for Bekah.  For instance I do Physical PT on her which means that I cup my hands and basically pound on the girl.  I do several different areas covereing different lobes of her lungs, and after each lobe, she needs to take a deep breath and than I do a vibrating motion to help loosen the mucous even more.  Another type of therapy she has that she does on her own is the vest.  This is like an inflateable life jacket.  She puts it on, it fills with air, and than it shakes her and vibrates her at different levels.  Again, after each time she has to do focused deep breath coughs called 'huffing' (don't worry it isn't the glue type), both help her cough up the mucous.  The final form of Physical therapy is called an Acapella, and she breathes in and out of this device.  This device essentially seems to vibrate the air internally hoping to loosen some mucous and she needs to cough it up.  You can tell why it is so important now for CF people to have really solid nutrition and be physically active as much as possible, because you can imagine the energy this takes.  Take into consideration the fact that when most people are in the hospital they feel really horrible and don't want to cough it up.  So we are so thankful Bekah is so strong and feeling well that she can really have the energy to come at this full force for the length of time she is on the IV antibiotics.

So when I'm not on top of Bekah chasing her with Saline and antibiotic bottles, than I'm chasing her with nutrition shakes, eating options, yogurt with lots of probiotics...and when she isn't doing that, she's doing a nebulizer followed by physical therapy.  When I think of all that is being asked of her, and to know she is only 15 I am astounded at what an incredible girl of strength she is.  Mentally and physically. 

I'm going to get a picture up of the medication bulbs we use that have her medication in them.  For those that are really interested, maybe we can even get a video up, to scare all of you as I hold really big needles!  :)   Ha Ha Ha( evil laughter inputed here!)  Hopefully I won't drop one of these on my foot because it would REALLY HURT!   No I don't inject anything into Bekah with these needles, but it is for mixing one of her antibiotics.  It needs to be mixed right before it gets run into her system, so Mark and I get to be MAD SCIENTISTS, and mix up this particular medicine.  Seriously, MARK LOVES this part.  He gets a crazy grin on his face while he's doing it.  The CHOP home nurse got a kick out of it last night when she was here.

I have to say again how thankful I am for my husband.  The nurse said how rare it is for husband to be as involved as Mark is.  No doubt most people would think how can one person take care of five kids, homeschooling them on top, and all this medical schedule for Bekah.  The truth is ONE PERSON CANNOT do it!  We do this as a team, and I was reminded from the nurses comments yesterday what a treasure he is. I think she was even nervous at first about how I would function as I handled the middle of the night meds with Bekah and keep up with everything.  I looked at Mark and reminded the nurse... when I get cranky....he takes over!  :)   He always asks which time period he would like me to take, and most of the times the really LATE ones I'll do, because I'm a night owl...the early morning ones he gets....because he is an early bird.  So who knew that 17 years ago when we met at college, and God was drawing us together with all our differences, that they would perfectly complement each other for things like this.

Well of course in Karen fashion this ended up being longer than a quick update!  Ha Ha.  I'll get up some pictures of the mad scientist/pharmacist for all of you and maybe picture of our bedroom that has now turned into a pharmacy complete with medical waste!  ha ha.  No worries, this stuff is NOTHING compared to Hanna's diapers! Just LOTS of alcohol wipes and empty syringes. :)

I know some of you have had problems commenting on this blog.  I have done everything possible to change the settings, yet it still most people comment.    So if you want to send a comment, to Bekah, the other girls, the mad scientist or say hi to any of the animals....just email us at mweigner@comcast.net

Thanks for those that have written to say you are praying.  
We thank God for each one of you.   Off to the next thing in Bekah's schedule.  Wrapping her up in Saran Wrap after I have Lysoled her!  Ha Ha!

Love to all.....
Karen

Life's Unexpected Detours.

Bekah saying Goodbye to her buddy for a few days.

No drugs, no fear, COURAGE!

When did she grow up?

First of all I shudder as I see the date of my last blog post, being October 4, 2011.  It's hard to believe that over two months have gone by since I wrote.  Two months with a precious miracle girl that joined our family and  she is now 16 months old.  We are coming up on the one year anniversary of that amazing miracle phone call and that incredible detour in life that had us driving on what seemed like the precipice of Mt. Everest!  Yet in God's perfect timing He got us to our destination, He took us through a week filled with one miracle after another, and we made it safely to our precious daughter and home again to be united as a forever family of 7.   It's not a surprise to me, that though I thought I had reached the mountain peak, God was just really preparing me for another detour, with some even bigger drop offs on either side.  Yet as I learned through Hanna, it's not about looking down, but looking up to where I'm going and the One that has me in the palm of His hand.

I still am trying to wrap my own mind around the fact that here  I am once again with a computer, typing in soon to be the wee hours of the morning while loved ones sleep.  The bed I'm on is pretty firm, the room a little too warm, yet this time I'm in the Western Hemsiphere and if I try to look out my window all I see is a row of windows and concrete looking back at me.  Sleeping soundly beside me is another one of my miracles.  What did I ever do to deserve such lavish grace.  It certainly isn't anything in me, but everything about a God that's crazy in love with me and each one of my girls.  Can it be 7 years ago, that I was in the same situation, yet the 'lump' in the bed, was much smaller, was much more dependant on her Momma, and was just beginning to really take steps of faith that would become her own.  Now that lump is bigger, it's longer, and it's hard to believe that the bed, let alone this room can contain the courage and confidence that are in her heart.  Yet, here we are back in one of the scariest places on earth for me, yet because of God's people praying, I can be totally at peace that we are once again, being held firmly in the palm of His hand.

So I'll back track a little for those that are new to our journey with Bekah.  Many of you I've met as we journeyed to get our precious Hanna, so a lot of things you are unaware of. When Bekah was 9 months old she was diagnosed with a genetic disease called Cystic Fibrosis.  It basically affects all the mucous producing glands in your body, and most importantly the lungs.  The mucous that lines Rebekah's lungs is extra thick, and so over time, and year by year bacteria can find their way into her lungs, and it's like a lifetime vacation for the Bacteria at their favorite resort and they are never interested in leaving.  When  Bekah was 6 years old, her lung function dropped to about 80% of an average girl her age, and that was when we had our first hospital ADMIT.  It consisted of a week in CHOP,IV antibiotics and seeing that she had pretty compliant parents, and knowing Rebekah really thrives best at home where she can enjoy the air and lots of activities they sent her home with antibiotics we could administer to her there.  Her lung function came right back up at that time, but 6 months later we were given a diagnosis that to me was scarier than her CF diagnosis.  She had cultured a bacteria in her sputum called Cepacia.  In the CF world, that basically cuts over 10 years off the life expectancy, and creates a whole new set of rules.  We were DEVASTATED.  I felt like I had done something wrong, that I hadn't done enough to protect my baby girl.  I had nightmares about the different nurses that were in and out of her room and not having much knowledge of infection control at the time, I felt like it was my fault.  There is no solid evidence that she picked it up in the hospital for she also could have picked it up in a natural environment.  This type of bacteria is really the mold that grows on onions.  Harmless to you or I, but to her lungs.....a slow lethal weapon.  I didn't even have to cut an onion to cry....all I had to do was look at one and I'd break out in tears because I felt like a failure.  I also remember that was the year we were putting in our above ground pool.  THere was the possibility she picked it up from the soil.  Why did I let the girl play in the dirt!  Not only was I crying over onions, but I was crying whenever I looked in the backyard, and that was probably when Mark lost the majority of his hair.  (it's okay to laugh too, because I have to laugh, yet cry at myself at the same time.)  It was a desperate time of wrestling with God.  We'd accepted her CF, but than to throw this on top of it.  I had a hard time with what God was asking of us.  At the same time we were going through this diagnosis with Bekah, my best friend who was a young mother of 4 was diagnosed with Breast Cancer.  I had a myriad of why's for God when I was in the mood to even talk to Him.  It was a dark time.......BUT GOD!  For He never fails me, that even in my darkest moments, His light shines through, again and again and again.  Even through my questions, He continually kept telling me to trust Him.  To trust His plan, and not just look at the labels that people place on things, but know He is greater than all of that.  Her lung function numbers were still phenomenal at that point, but the doctors wanted to try a course of strong antibiotics to see if they could try and eradicate the cepacia. There had been a few successful cases and we had a peace about taking as big a bang at this bug as we could.  They set up the IV's for her to be done right at home.  They knew the hospital wasn't the best place for a girl like Bekah to stay healthy, or to fight this bug, so they sent her right home with the IV's.  I can remember watching this strong healthy girl, just get sicker and weaker each day as we fed the antibiotics into her bloodstream.  Yet, here God had allowed my best friend to be going through her own fight, as we watched her body get sicker and sicker from the chemo.  They both were my hero's, and watching them fight, reminded me how so many times things need to get worse before they get better.  As a mother it was heartwrenching to be the one telling my girl to go through this yet knowing there was a purpose in it.  The lessons in those days for me were incredible as I once again saw the loving heart of GOd that allows trials and situations in my life that are ultimately for my betterment.  On day 10 of Bekah's round of antibiotics at home she developed a strange rash.  When you are dealing with IV antibiotics, you never want to take a chance on rashes, so we brought her into CHOP, and the decision was made to put her in the hospital for observation while she finished up her antibiotics.  This was the most terrifying thing being asked of me.  I was being asked to take my baby girl, and put her in the very place where she could have picked up this bug.  Cepacia also I learned had several different types.  Bekah had the better type, but because she was diagnosed with Cepacia.....she was put on a separate ward, near other patients with Cepacia.  They were just learning about the different types than.  THere was a young teenage boy that had CF that was right next door to her.  Everyone that came into her room was the enemy to me, and they were part of an army of things I couldn't see.  I'll never forget being in the bathroom just sobbing hysterically while looking at the blackand white  tile, because another person from the floor had walked into her room without gowns and gloves, and they were all over my little girl.I turned on the shower, I ran the faucet and flushed the toilet like crazy, all to my little girl wouldn't hear her mother's sobs.    I had NO CONTROL once again, but to beg God to protect my little girl.  Looking back on those days 7 years ago, I'm amazed I can be in here and be so calm now. ( and I didn't have any giggle juice) while she was getting her picc line.   I can still remember the anxiety of that room down the hall from where we are now.   I remember telling Dr. Allen, that I felt like he was putting a rabbid pit bull on the end of a chain and putting it right in front of Bekah and we were 'hoping' the chain would hold.  Well it did hold, and she didn't culture any new bugs from the stay.  We were disappointed to find out that the cepacia wasn't eradicated from her lungs, but the good side of that was I could stop just looking at onions and cry.  What would be, would be, and God was teaching me that though detours happen, I have to keep my eyes on him.  Since we took that detour, it led us for a season to be parent advocates for the  CF Center.  We were able to give parent feedback, and change the way things were done at CHOP.  Believe it or not, they like it when TYPE A's can come into the hospital because it gives them feedback how they can do things differently.  I am so blessed to have a sister, make it her life passion to fight this disease.  She is a CF doctor up in Canada and Bekah was her motivation.  She saw how Canada did things that were cutting edge in new areas, and she shared those things with me, that helped change things down here. I remember one meeting asking the CF director why we are having Cepacia patients seen on the same clinic day when clearly there are types that are different, and studies from Europe showed there was cross contamination of the different types in some cepacia patients.  Things didn't move quickly, but I type here today, knowing that there are no cepacia patients near Bekah now, and when she is in clinic, it is a day specific to her type of Cepacia.  I have no idea how much our voices played in that, but it was a season where we saw purpose in the detour God had placed us on.  Not to mention God was still showing He was in control and I couldn't focus on labels.  For despite her Cepacia, she her lung function acutally got better. 
   So fastforward 7 years.  Over the last seven years, Bekah has been doing a phenomenal job staying on top of her health.  Her lung function has maintained being at about 122% above an average healthy child her age.  She always is on top of her physical therapy and nebulized medications that she does 2 times a day.  This summer though her numbers started to dip, and it doesn't take much to catch the attention of her doctor and raise every nerve cell in his body.  You see, he has been taking care of CF patients for decades and he knows how unfair it is, and how it takes advantage of the slightest weakness, or opportunity.  When we came back from Korea Bekah's numbers were at the lowest point they had been in 7 years.  They were about 106%.  Still great numbers for a CFer, but for our Bekah...it was a sign something was going on.  All this time, I had been passionate in empowering Bekah to keep up with things to keep her self as healthy as possible.  Reminding her we all have challenges, we all have thorns, and these are BIG ones for Bek, but nothing can stop her from reaching for the stars.  She just needs to realize her CF care is non negotiable and needs to be a part of her routine even when she's feeling great!  We had just gotten back from Korea, and my heart just sank when I saw the numbers for I knew where Dr. Allen was going to want to go.  Though he gave Bekah several weeks to work on getting her numbers up,which I think were more for my benefit,  I know his passion and his fight against this disease is a fierce one.  He wasn't going to be happy without anything but the big guns. He told Bekah he wanted her to up her Physical therapy to 4 times a day, and we added a new inhaled antibiotic.  It's easy to write an order on paper, but it's another one when the patient actually follows it out, day after day, after day.  It definitely showed them she was committed to her health and it was a priority.  Th big guns, meaning the IV antibiotics,  I was ready to fight that with everything in me though, and Bekah was just ready to prove she could do what it took to get her numbers up.  It was in some of those nights where I was holding Hanna's hand while she fell asleep, or looking over the pictures of our trip to Korea, that I heard God's quiet whispers on my heart that Korea was a step I took and now He was calling me to take a leap.  Normally I would have fought, I would have cried, I would have thrown my fists up, yet how could I do that on a God that has proven Himself so faithful over and over and over again.  All I have to do is look at the chunk o' love and my heart is overwhelmed with God's love for me.  I knew too this wasn't just about me, but it was about giving my girl wings to fly.  She's always been a firecracker, and slowly but surely God's pried my tight little hands off of hers.  I've seen how God protects her in the craziest of places, and I know the spirit He has placed within her, He has provided the extra guardian angels to keep up with her.  I felt like God was lifting one of those last lil' pinkies off to say....I wanna let you see what this girl can do......and OH HOW in the last week HE HAS, and I'm not the only one noticing.
  Tears running down my cheeks again, as I think of the news that devastated Bekah on Wednesday last week, simply because she thought she could have done more.  Another teary ride home on the Schuykill Expressway  ( I really hate that highway), but we were together holding hands, and trusting God's heart that He had a plan.  Sometimes in life we can do everything 'right' and stuff still happens.  It's what we do with the 'stuff' that's important.  It's about where we fix our gaze, and hanging onto faith with a killer grip, knowing God's got it covered.  For you see, I knew that iphone being lost in Korea had a purpose.  It was for these moments to know that if God could be intimately aquained with all my ways that He cared about those precious pictures on that phone that was lost in a city of millions, to hand deliver it back to me.....He's still got us all in the palm of His hand.
  As we prepared for her visit, it seemed like we were all ready to have Bekah be able to come home again without being admitted, but in the final 10 seconds as usual per anything Weigner the game changed.  However, within minutes of the game change, God through some pretty incredible touchdowns to remind me he was in control. Dr. Allen called to tell us that he was about to sign off on the orders that Barb...(the nurse many of you had prayed for on Monday) had spent all day getting together.  I heard that she was so upset she had to leave the room and couldn't even look at Dr. A.  He told me though that he had a 'gnawing feeling' he just couldn't shake, and it was mainly around that 'strange rash' Bekah had developed.  She had been tested afterwards for drug sensitivity and she had none, but he just wasn't sure.  That's all he needed to say to me, and maybe the place where God needed to get me to in accepting this plan and submitting my heart.  Within minutes though a friend called not knowing anything about what was going on with Bekah to say....."I just wanted to call and see if you need me for anything."  Tonight she stayed with my babies at home, and will be helping the rest of the week.  GOD'S FINGERPRINTS....that nothing is a surprise to Him.
  I have had the most amazing experience to watch this 15 year old deal with situations I would crumble under, with no fear.  The one nurse in the sedation unit actually asked if Bekah would come back and give a seminar about how to go through a PICC line procedure the right way.    You see I've gotten so much precious time with this girl over the years,  time that has gone oh so quickly, and as she's grown and matured and spread her wings, I've watched the effect she has on other people.  I heard it today as time after time, people just said they were amazed at what an incredible young woman she is.  I have a TOTAL peace being in here.....not to say I don't want to get home, but it's not because I'm scared of the unknown anymore, or the bugs I can't see, but it's seeing a system that doesn't work in the best interest of Bekah, because she doesn't need people to hand feed her pills or remind her to do PT.  Each time I've gotten frustrated though, I'm reminded that there is still a bigger plan, and I have to trust God's heart. While I hear Bekah sleeping soundly now, and listen to the air movement, I feel like I can sense angels all around.  I think they are cheering her on even moreso than this Momma is, if that's even possible.  This is all, I have NO DOUBT, shaping her future.  I'm' not sure how, or why, but I just have that feeling.  The days ahead will probably be hard.  We very well will go through the issues we faced before in taking a relatively healthy girl and allowing her to feel lousy, so she can be even better on the other side. Bekah in working so faithfully with her treatments did get her lung function up to about 115%, but some changes on the cat scan were the final straw for Dr. Allen to say she needed to be in.   I pray these drugs can knock down the bacteria, and I have enough faith to pray that if God deems it, it can even knock out that cepacia too....completely!! I've got a different heart 7 years later though to say a little more trustingly...this is how I'm gonna pray, but God Your will be done.
  For you see 14 and a half years ago, I took a baby that only weighed 12 pounds at nine months old,  we were watching her get weaker and weaker with no answers, and my heart was weaker and weaker with each day.  I'll never forget getting on my knees and just putting her on our bed, and telling the Lord...she's yours.  I can't do this.  I don't know how to fix this....but YOU DO.  God knew and knows every little cell in her body, and most importantly knew all about her soul.  I remember as if it were yesterday praying with tears collecting on my knees, that God would give her a heart to Love him with all her heart, soul and mind.  If that meant a weak body, I prayed He would spare her life and heal her little body, but give her a STRONG FAITH.  For this life is just a prequel to what is to come.  AND oh the miracles He has done in her life.  The strength He has given, the faith that inspires me, and the dreams He has laid on her heart.He's given her a gift of physical strength to despite her labels.    I'm reminded of what a miracle her life is, as I talked to the nurses tonight and they say, I've NEVER met someone that has gone 7 years in between treatments.  Yes Bekah does an incredible job, keeping herself as healthy as she can, but it's God that's given her that fight....it's God that's kept her strong,  and oh how I pray that's what others see.
   So thank you for reading along if I've still kept your attention.  Thank you for the prayers for our girlie, our girls, for our family, I am overwhelmed as is Bekah with how many people are praying for her and loving on her and all of us.  I also reminded our sweet Brienna last night, that God has given her a spirit of nurturing for the things He has asked of her. When Bekah got Joey the Make A Wish horse so many people asked me what Brienna's thing was.  We all scratched our heads a bit and even Brienna.  She would say...well babies and little kids.  I told her last week, that  God gave her His wish as well, and blessed her with 'her things' in a 31 pd bundle of Asian cuteness.   Brienna doesn't fight CF, but she gets the other end of the stick.  The one that gets a boat load of responsibility and can too easily go unnoticed.  My heart is  sensitive to her, and I pray my words and actions display how thankful I am for everything she has taken on.  So much in her life hasn't been 'normal' because of the ups and downs of her big sisters disease.  Her unselfishness puts me at awe just as much as Bekah's courage.  How incredible are God's ways that though these two girls are both from the same genes...God has made them unique for the task He has prepared for each of them.

Well I'd better get some shut eye, for the road that is ahead.  Not sure what it will look like tomorrow, but I pray I keep looking up,  and not down at what might be around us.  For in the end.....the view will be worth it.

    Love you all my precious friends, and we'll keep you posted where the road turns next!

In His Grip and Resting,

Karen