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Processing Surgery/Hospital Time

Morning before surgery. My girls were all smiles! LOVE THEM more than words!!

 

Wow! This has definitely been one of the more interesting weeks that we have had around here in a while…thankfully.

Sadly, I have not had time to really process or allow my heart to feel much in the last few days.  Partly because of exhaustion, partly because there is more needed from me than hours in the day.  I really wanted to keep an update each day, but there was a lot going on.  But, for my own sanity and processing of things, I will now write!  And, a fair warning, I blog for me more than I do for anyone else.  So this is certain to be lengthy as I want to remember, process and learn more of God’s faithfulness through each and every trial and journey that He alongside us walks.

Waiting for surgery, entertaining ourselves with photos.

We waited for about 3 1/2 hours in the pre-op room. So incredibly thankful for our sweet friend that brought things for Rachel to do!

Our family friend, who was such a blessing to us that day. Knowing that he would be the one guarding and watching her throughout surgery in the anesthesiologist department was a huge relief for Rachel and us.

Tuesday-
Started out pretty early.
We woke a little before 5 to get food ready for Rachel to be able to take her morning medication (Orkambi in particular that needed the fat to go with it).  Since Rachel was suppose to be NPO after midnight, and had the need to take medication the surgeon agreed that it would be wise to allow her to take this medication if we could do so around 5.  So we set our alarm and went down to the kitchen to make a piece of toast and butter to start her day off.  She sleepily tried to eat a few bites.  Started to refuse and was reminded that she would likely not eat for another 12 hours today.  She then pushed herself to eat the rest of the one of two slices I had prepared for her. Of course I was awake for the day.  (Side note, my sister had a minor knee surgery at 9 that morning, so after I put Rachel back to sleep, I headed out to be with my sister for a few moments while they prepared her for surgery.)

The rest of Tuesday mooring was actually pretty calm and peaceful.  We were to check in to the hospital at 12pm for a 2pm surgery.  We KNEW others were praying for us because there was no fear, no real concern, just a mentality of, “In God ALL things are possible”!

As we were checking in, a sweet woman at the front desk informed us that there had been a package left at the desk for us.  She would have it brought back when we were ready to go to the pre-op room.  What a joy to see Rachel’s face and distractions as she rifled through the fun bag full of treats (bonus the mama brought one for us too.  SOOO sweet).  Rachel did well waiting and prepping the worst part was that we could see the anxiety increase as each doctor came in (the pulmonologist, the surgeon, the Fellows, Attendees, and the anesthesiologist) it was likely difficult for others to see, but she was holding back tears on each one.  Finally they asked if she felt okay, or did she needed something to help calm her down.  Dad tried to encourage her that she would be alright, but the urgency and fear in her face as she begged them to give her something was hard to watch.  The tears were cascading down and Paul and I agreed, that perhaps she did need something to help calm her nerves. She had worked so hard to put a brave face on, but when they offered her something, she was quick to recognize her own need.  So they gave her a dose of liquid valium (yucky as it was) it really helped settle her down.

Rachel’s bag of goodies left at the hospital for us upon check in. Only one warrior mama, Heather, to another would think of something like this. My precious friend has walked with her daughter through many, many surgeries and hardships. So thankful that God has used their pain to bless others, us included. Rachel knew she was loved and not alone!

 

We ended up waiting to go back to surgery for over an hour and a half after our scheduled time.  Poor girl was really thirsty and starting to get pretty hungry.

Finally, it was time for them to get her and take her back.  She was so brave (thanks to many prayers and probably a bit of medication).  No tears, only curious wonder.  Crazy enough, I did not have tears either.  I was certain I would as I did with my oldest son just two months ago.  Definitely felt the calm assurance of the Lord’s presence and a spirit of battle readiness.

Paul and I waited in the waiting room for the first part of the surgical procedures, her bronchoscopy.  The pulmonologist came out to give us a report.  Most everything looked really good.  I could see a pensive look on the dr.s face as the Fellow doctor was talking. I am used to that look and was steeling myself for what he would tell us.  He explained that Rachel had some lung abnormalities.  Her upper right lobe only had one opening.  He would like a ct scan as soon as she is doing better to see if there is an underlying cause.  He said that they looked for some time, but did not find a second opening.  After he was done, he tried to review X-rays from the last few years, but since this was her first bronch, it would be nice to know if she had ever had a second opening. (When Rachel was 10 days old, her right upper lung collapsed.  There was talk as to what damage that may have caused, or if she was just born like that.)   Either way, something that we will need to know and deal with from here on out.  An X-ray would likely not have shown the absence or presence of that upper lobe.  So the ct will tell us if it is there, smaller, or missing completely.  CRAZY!!

The second issue that he saw was that she has a pretty pronounced node in one of her main airways that could restrict air passage.  He said, it was something that he definitely wanted to explore (but thankfully there seemed to be no urgency).  He said it is was part of the progression of cf.  When people have transplants, they have nodes that do in fact completely restrict their breathing (my heart was heavy that he even needed to compare the two).  And truthfully, I have pushed most of the fear of those two things to the back of my mind, it still is just one more reminder that my sweet girl has this monster of a disease that she is fighting every single day. I will feel a bit better when we have a CT scan done and I know a little more about what is going on in those precious lungs of hers!

GI surgeon came out about an hour later.  Everything went well. He said that there were no surprises.  She did have quite a bit of scar tissue from her first abdominal surgery.  Ironic that he was the one who did the first surgery too.  We were blessed that our friend from church was able to be her anesthesiologist.  He came back and sat with us while she was in recovery.  Shortly after we were able to go back and see her.

When I got back to Rachel she was in quite a bit of pain.  So hard to watch your child look to you for comfort and know that you can do nothing more than hold their hand and pray for them.  Our friend, the anesthesiologist, was extremely helpful in trying to get Rachel’s pain under control control coming out of surgery, and he found a combination that finally worked.  Rachel was doing amazing for the first few hours!  We were really impressed and a bit surprised.  Her first treatment was at about 9pm.  Although it was quite painful, she handled it as well as could be expected right after surgery.  They only did upper lobes.  Still some tears, even with lots of drugs still on board.  Worst part of the evening was that she was again NPO for 6 hours post surgery.  So altogether she had not put food or drink in her mouth at ALL since a little after 5.  At 10:40 she ordered some food and happily ate a small amount.

Right out of surgery. Getting some loving from daddy!

Another sweet friend came up to the hospital to give some smiles to my girl. God used her to bring us dinner too. We thought we would be fine, but the parent cafeteria was closed and neither Paul nor myself wanted to leave Rachel’s side to get food. We had eaten vey little since breakfast at 6 am. Praise the Lord for her thoughtfulness, and timing!!

Enduring treatment!

First treatment nearly finished! Painful, but finished. (I debated posting this, as I don’t want my girl to be shown in anything less than the amazing light that she is. However, this is also the reality of CF. IT IS AWFUL!!!) I show this picture to show the strength of my beautiful girl, and the ability to grit through some of the hardest things! Though this picture makes me wince and hurt with her…it also shows that SHE IS AN AMAZING WARRIOR AND FIGHTER!!

Aunt Jackie and Uncle Adam came to see Rachel.  They brought the girls too,  (but we were on a floor that we learned did not allow kids under 14 to visit) so they needed to stay in the waiting room.  Aunt Jackie showed her a video of them, and it surely made Rachel smile.

 

The end of the first day. Smiles attempted.

Wednesdsay-

It was somewhere around midnight that Rachel started having a really hard time breathing.  She was panting (likely pain meds from surgery were beginning to wear off) and holding her sides.  At a little before 1am  she asked to do another treatment (had done one at 9 and did really well with it considering).  Gratefully, that seemed to help open her airways a bit.  However, by 2 she was up again crying out in pain.  So hard to watch your dearly loved child not be able to breath because of the pain in her abdomen.  We spent the entire night fighting pain.  She moaned, winced and grimaced all night.  We added Hycet, norco, tylenol,  motrin, zophran, and morphine and nothing was seeming to help. Even with all of that on board, she was still finding herself at about a 8 or 9 for pain.   Surprisingly, the pain was not at the site of tube, but down from it in her lower abdomen and in her lower lung area.  She rested for about an hour and a half that first night without crying in pain.  The rounds started at 4:50!!! (By the way…Why in the world does the hospital time work like it does??.  No one in their right mind is ready to hear, comprehend or process information at that time in the morning.)  I asked one of the first groups of Residents why she was in pain in those spots?  They came up with several theories both resulting from her first surgery.  The first was that she had significant scar tissue down in her lower abdomen.  (It was kind of cool to see it in the photos that they gave us after surgery.)  One thought was when they filled her abdomen with the gas, and worked on putting the tube in, it may have pulled and stretched that area a bit.  The other idea was that there is a nerve that runs alongside the diaphragm. When they put the button in, they try to miss it, but because of her previous and significant surgery/scar, they may have struck it?  But that seemed to make the most sense as it almost seemed like muscle spasms when she couldn’t breathe.  Interesting, thoughts, but not super helpful when the pain still couldn’t be controlled.  Rachel was suppose to get feeds started that first night, but there were a few issues before surgery that we were watching and then the pain afterwards that encouraged them to wait a bit.  So at about 6:30 or so, they decided to flush her tube for the first time.   Upon flushing it, Rachel got sick almost immediately!  Poor, poor girl.  No fun getting sick any time, let alone when you have a stomach full of holes. Getting sick literally took all of her gumption out of her.

Wednesday was a day of fighting pain ALL DAY!! They added Valium and that helped with the muscle spasms a bit.  She managed to get about 1 1/2 of pain relief a couple of times, but only if she didn’t move or go to the bathroom.  Treatments were super tough.  Eating poor.  She ate 2 crackers, 3 chips and about 3 fries all day.  Pain was kicking her tail all day.  Pulmonologist came in the morning and said her lungs were starting to sound greatly diminished.  But by evening he was starting to get a worried look on his face.  The pain had kicked Rachel so much all day that she was spent!  Her lower/mid left lung was starting to hurt and ache with every breath.  Dad tried to encourage her, but the reality was she was imploding emotionally. We made her walk a couple of laps that day, and that was good.  But it was not enough.  It was SO HARD to watch Rachel struggling emotionally.  One thing about Rachel, is that she wears her emotions on her sleeve.  You nearly ALWAYS know how she is feeling.  If she is happy, she shows you.  Sad, the same. But despite this, she usually has a quick smile even in the midst of whatever she is going through.  She is about the most spunky person I know.  I have said it many times that Rachel wakes up with a smile nearly every morning.  She has a light and a smile that shines bright.  But, by evening there was no spark!  No light!  No fight left in my little girl.  It was about the scariest thing in the world to see…the void of fight when you know the battle of CF always before her.

Grandma’s birthday smile. It was a weak attempt, but it was there.

Sweet friends brought up a care package for Rachel. Rachel’s love language is gifts. She doesn’t care if it is a rock or a note, or anything small. She loves gifts. I could tell she was trucked when she could barely try to look in the bag. Precious girl tried, but as you can see the spunk was gone. So thankful for the smiles of our friends though and their attempt to brighten her day.

Other precious homeschooling friends brought up this huge basket of fun things for Rachel to do. It pained my heart to see her smile. It was as if it took every bit of energy for her to  give this smile. Again, she saw all of these fun items, and wanted to look in it, but just couldn’t get herself there.  (HOWEVER, it has been SO MUCH FUN in the last few days to see her look and enjoy each one of these items!!  So grateful for the kindness of our friends!)

I felt like Wednesday night Rachel was doing battle internally.  She was full on seeing the awful monster of CF assaulting her.  A view that I could see both scared her and paralyzed her emotionally.  This was the first surgery that she could remember.  The first big trial of many ahead that she needed to overcome.  I could see her trying to process this through an 11 year old mind, and it crushed me!!  It physically hurt to watch!  I could see her trying to figure out how to get herself out of this pain and out of this downwardness she was experiencing…and she didn’t know how.  My heart absolutely ached and broke that there was simply nothing that I could do other than pray for Jesus to speak to her.  We tried to encourage, tried to admonish, tried to help in anyway that we could think of and yet…it was not working.  I saw fear in her eyes.  Those blue eyes screamed of resignation and a terrible realization that CF had the power to crush her spirit.  AND, it was!! Struggling to breathe was rough to watch.  Seriously, one of the hardest things to walk through so far, and the crazy thing, knowing that due to cf, this will be the easiest of the things we have ahead.  I tried to remind her of the others we know that have walked through this and things so much harder (Piper, Tricia, Micah, Ronnie to name a few), and how they somehow asked God for help.  And found the strength inside to fight.  She looks up to several of these CF warriors that she has never met but has a connection stronger than one could imagine.  I do not know how it feels to have cf and will NEVER EVER know what it is like to walk this heartbreaking journey!  So I am thankful to these warriors for the encouragement that they give my girl.  I can walk alongside her, but can not step into her battle.  That fact alone brought tears to my eyes and a sadness so deep in my soul.   As I watched my little girl lie there in that bed wincing and fighting the pain all night, all I could see was her being stripped of her childhood innocence because of CF.  It ticked me off!  Made me furious, and knocked me to my knees.  I prayed, and struggled right alongside her.  Thursday morning the pulmonologist came through.  He had a look of worry, not only on his face this time, but also in his words.  As he listened to Rachel, he said, “Mom, grab a stethoscope!” Do you hear any air moving here?”  So as I shakily put my hand to the end of the stethoscope, I did not hear anything in her lower lungs.  He then explained that they were diminished yesterday, but today, they were not moving ANY air through them!  With the inability to get Rachel’s pain under control, it was causing her lungs to stop working effectively because she was taking as shallow of a breath as she could endure.  Everyone’s lungs diminish when they lie down especially after surgery.  But with her cf sticky lungs, it wouldn’t take long to get her in a really bad position and she was getting there quick.  Rachel’s oxygen saturation was between 93 and 94 through the night (one doctor said that anything around 92 they start supplementing with o2 cannula, which I knew, but was still hard to be hear).  I love this particular pulmnologist, at times, because he does a good job of breaking things down on a kid level.  He often speaks directly to patients and treats them as if they have power to change their circumstances.  The doctor looked at her and asked her if she liked been in the hospital?  He asked if she knew what she needed to do to get to go home?  He informed her that the hospital was about the worst place for her to be with lots of germs and gross stuff.  And that the longer she stayed here the more likely she was to get really sick!  He then looked at her and said, “You are getting close to getting really sick and being required to stay here!”  He explained that CF bugs are having a party and building a mansion in her lungs right now. That they were high-fiving one another and excited to have her keep doing what she was doing.  He explained that with cf we knew that her lungs were full of sticky mucus, and the only way to combat it was to cough and cough till Rachel got the mucus cleared out, and MOVE!!  All of those actions would help to “pop” open those lungs that are currently stuck shut with cf junk.  He then explained that currently her  body was not going in the right direction.  He then pondered with the other Fellows and Attendees in the room  (about 6 others all in their yellow isolation gowns) about whether he should start iv antibiotics that day?  Rachel’s face understood that in a deep and profoundly grieved way!!  I felt the fear of what he was saying as well.  She was definitely on the precipice of letting cf kick her down to a place she had not been before.

As soon as Dr. Sammut left the room I sent out a quick prayer request to a group of people to start praying for my girl!  Then I got in Rachel’s face as only a mama bear can do and told her that she had a choice!  She could continue to sit and allow cf to kick her tail, or she could rise up and begin kicking its tail.  Kicking its tail looked like crying through the treatments, forcing herself to cough though it felt like her insides would burst out, and walking when she didn’t feel like she could bear any weight on her weak legs!  She just had to do it!  I knew I was asking her to intentionally step into pain, which no parent wants to do.  BUT SHE HAD TO DO IT!   I felt the power of the Lord first fill my spirit and renew my fight, and then watched it do the same for my precious girl.

Her Uncle stopped by to say hi that morning and was privy to the whole conversation from the pulmonologist.  The respiratory therapist also came in shortly after.  I told him that she would likely cry through this, but we needed to get those lower lungs going.  He said, “We will do what she can tolerate.”  I said, “NO, she will tolerate what she MUST!”  Hard to say those words as a mama.  So many times we try to keep our kiddos from engaging in pain.  Knowing that she had no way around it was tough, knowing that I could not take it away from her tougher!   Tears still spring to my eyes as I wish like crazy that she did not have to bear the burden that cf throws at her.  But by God’s grace, I will walk alongside her through every trial that God allows me.   I will attempt to be her strength when she has none and continually point her to our Savior.  He has a purpose for ALL that He calls us to endure.  Side note. I had a friend that stopped up for a moment and we walked to the hallway quickly while our other friend sat with her.  She was bothered by what she saw Rachel going through and the fact that I had to push her to go through it.  She asked me how I could stand to do it?  Upon talking to her, I tried to explain that I had no choice.  It was the first time I had allowed my heart to feel the pain for my baby girl in days.  Parents of sick kiddos must force our hearts to do more than we ever wanted to do .  The tears flowed easily and quickly with my friend.  But I knew going back in to her room, I could not show Rachel my broken heart! I needed to rely on Jesus so that she could see His power at work through me and allow Him to be her Rock.  I do not understand how anyone could possibly do any of this without Jesus.  It is impressively hard even WITH Him!

Anyway, Uncle Adam was going to leave before the treatment started.  I knew what I was going to ask Rachel to do was going to put her out of her mind in pain, but she needed to lie down on her side and percuss those sweet, albeit sticky lungs.   I begged him quietly to stay.  I knew that Rachel would be a bit braver for him.  So he conceded.  Even with him by her side, she bawled and winced with each and every side that the Respiratory Therapist did.  Uncle Adam stood by and helped more than I could have asked or imagined.  It was heart wrenching to watch her gasp and writhe in pain, but I KNEW she must do it!  45 minutes of torturous treatments and deep exhaustion, her O2’s went up to 95.  She was worn out, but I let her know after we walked for a while, she could rest.  With Adam’s help, we got her up and walking.  A little bonus, they had therapy dogs that came by.  She LOVES dogs.  Although it was pretty pitiful watching her try to enjoy the dogs.  It was a happy surprise. 

Uncle Adam finally left and Rachel and I walked and walked.  Finally, she said she could not stand anymore, so we headed back to her room.  On the way to her room she noticed that the girl in the next room to her had a cf fighter shirt on.  That flipped her and me out a bit.  We had now been there for nearly 3 days and our door and her door had been open much of the time (I tried to shut it often, but it was still was left open when others came in and out).  As many of you know, CFers aren’t suppose to be anywhere near one another.  They have cf specific bugs that they can pass to one another.  There are some significant precautions that they are to take.  Recent studies have shown strong evidence that cross contamination occurs more easily than previously believed.  (Years ago cfers roomed together, went to cf camps and spent time together not knowing that they had the ability to pass these bacterias to one another.  Hence, now, there are no camps, and no contact if possible.  Siblings, obviously, can not help it.  Still some debates about how it all works, but this is the current practice.)  Anyway, realizing that there was another cfer in for an exacerbation was also a stark reminder of what Rachel was facing if she didn’t get going.

On her walk, we encouraged her to go to the lobby on the floor to see her siblings. More walking of course. =)

We met with a pain management team when we returned from our walk (one that we had requested the afternoon before, but they had certain hours that they did the consultations).  They also gave her a strong talk about how she was going to end up getting stuck in the hospital really quick if she couldn’t get moving.  They encouraged her and challenged her that if they could help her get her pain under control would she be able to do her part?  There was a glimmer of hope in her eyes as she replied, yes.  They began switched around a few meds which seemed to help pretty quickly.  Rachel also endured another very difficult treatment at around noon.  She moved junk like I haven’t heard in some time.  LOTS, and LOTS of hard, productive coughing.  45 minutes later her o2’s had gone up to 97 and her color had returned.  Pain was for the first time seemingly under control.  I felt like we had experienced an incredible and God orchestrated turn around!

Quickly,  I felt like she was in a position to manage things at home.  I asked to consult pulmonology about going home.  Dr. Sammut returned and upon seeing her he noticed a remarkable change too.   He had a smile on his face after he listened to her.  He said, “This clearly isn’t the same kid that I saw this morning. I think if you want to go home, then by all means, get out of here!!”  We were thrilled!

Exhausted, weary, worn…and FEELING BLESSED beyond measure! Feeling the joy of the Lord!

 

All packed up and ready to GO!!!

Anyway, we were extremely thankful to be able to get home around 6:00.  The first night was long, lots of pain still, but manageable pain.  Her feeds went well too.

I will speak about the feeds and trials and learning curve of the feeding tube on another post.  But, for now, we keep praying and asking for the Lord to be merciful to my sweet girl!

I want to end with the absolute joy the Lord has given our tired, weary hearts.  Our gratitude to the many that have prayed for her, and encouraged us.  The ones that have brought meals and taken my other kiddos.  God has been so very good to us through others.  Tired, weary and battle worn, we rely on Him for our strength in this journey.  So many times over this last week I have whispered into Rachel’s ears how very proud I am to be her mama.  How this battle, the battles yet to come will be fierce, but the one that lives in us is MORE THAN ABLE!!  I have told her how inspired I was with her courage in the midst of pain, her persistence with a burden I wish I could too carry.  I have reminder her that it is an honor to fight alongside her, and that I will continue as long as I have breath!!  WE WILL CONTINUE TO BATTLE CF!  We will pray for a cure! We will ask and beg of the Lord for mercy, and grace.  We will rely on His faithfulness.  Oh, how my girl has taught me so much in her short and beautiful 11 years of life.  As hard as it is, and let me tell you it is harder than I would have ever dreamed, could express, or asked it to be, it is every bit a joy to my soul to get a front row seat of God’s incredible goodness through her life and struggles.  Just thinking about her joy and contagious smile swells my heart with pride for the young lady that she is and the one that God is using CF to create in her.  Glory to God in the Highest!

AND…we will remember
Nothing is impossible with God!

I will write more later about the time at home thus far.  Please know that we can still use your prayers.  Sleep has been short, and feeds a bit difficult still.

Grateful that He listens to the cries of our hearts and walks this difficult journey with us!!

 

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