She Sure is a Miracle!

What a day!  What a visit!  We are so excited about continued great news about Macy's liver!

We headed up Thursday night so we could be ready for an early morning visit on Friday.  Thank you to Mamaw for keeping McKenna for us, and to my friend Megan for taking McKenna to school and keeping her after school until we could get her!  The Ronald McDonald House didn't have a room again, so we booked our go-to hotel that is a couple of blocks from the hospital.  After working and going to school all day, and riding in the car for over 3 hours, we were all exhausted.  Morning came too early when the alarm went off at 6 a.m.  We hiked it back to the hospital parking garage and hopped in our car to head to an outpatient center in Lincoln Park.  The actual hospital couldn't get us in for her ultrasound, but the outpatient center could.  We didn't mind, we were just happy for an early 7:45 a.m. appt.

Her ultrasound went great, and I could see that the shunt was open on the screen, so I was relieved.  We ended up doing our labs there too since there was no wait.  We were back in the car and heading back to Lurie's by 9 a.m.  We headed to the cafeteria for some breakfast since Macy couldn't eat prior to her ultrasound. We then arrived early to the clinic to see Dr. Superina.  Our appt. wasn't actually scheduled until noon, but they told us to head up early if we had everything else done.

Dr. Superina's nurse, Joan, was amazed by how good Macy looked, and couldn't believe that Macy went to school for a full day on Thursday.  She said that she thinks Macy holds the record now as the first patient to get back into the swing of things the fastest. We couldn't have been more proud of her this week for all of her determination!

Then Dr. Superina and his partner, Caroline, came in to see Macy.  He walked in stared at her and just kept smiling.  He was so excited about how unbelievably good everything with her went and how it is currently going.  They said, "Macy, do you even realize how famous you are?  You are pretty famous around here!"  Caroline commented that they can't ever get these kind of emotions out of Dr. Superina, and she couldn't believe how happy he was.  He told about how the doctors in Paris, France have been following what he did with Macy, and are so amazed.  Caroline told Macy she was so famous she might be on People Magazine or something, lol.  Dr. Superina said, "She sure is going in my Hall of Fame!"  He went on to say that it was proof of concept that kids who you can't grow a portal vein in can eventually be changed into a Rex patient.   He said he had proved his hypothesis!  He said he was going to be writing about her for sure.  So let's just lay it out there....she was kind of his experiment.  Aaaahhhhh.....glad I fully know this AFTER the surgery!

I've mentioned before that he has only done the Rex Shunt in Abernethy patients twice before.  One was an infant, and one was a young boy.  The difference in these kids and Macy is that they had larger "original" portal veins, as well as a more robust portal vein system inside the liver on both the right and left sides.   Macy is unique due to her abnormally-shaped liver, her thread-like "original" portal vein, and almost no internal portal system inside her liver.  Back in 2016, after he re-routed her blood to the liver, it pushed blood into the liver, but her portal vein barely grew.  It helped develop the internal portal vein system on the left side, but the left side only.  So the surgery that we thought would fix her back in 2016 put her into a very long-term portal hypertension, while slowly growing the inside veins.  Then came the question of "can he change her from an Abernethy" kid to a "Rex Shunt" kid?  Well, as we all know he did!  He had never done this with a kid who had the anatomy of Macy.

So that is why this is all so amazing to the Rex Shunt medical community.  She is not the reason the Rex Shunt was created.  Kids like Macy are only supposed to be cured with a liver transplant.  That is exactly what we were told in 2008.  Dr. Superina keeps proving them wrong!  He is AMAZING!

Her numbers were all good (platelet count, electrolytes, liver enzymes, ammonia levels, and hemaglobin).  Those are the main ones we are watching.  The biggest one right now is her INR.  It was a little low at 1.9.  So we are increasing her Coumadin dose for 2 days, going back to normal on Sunday night, and then rechecking her INR on Tuesday morning.  We can now do this at home thanks to our new Coaguchek machine.  We had our training on Wednesday night, had her first reading, and are ready to do it on our own now.  The awesome part is that the machine transfers to my phone, and my phone automatically uploads the results to the company.  The company then sends the results to Dr. Superina's office.  It's so easy!  This will definitely make life easier.

So things are looking great following surgery, and we couldn't be any happier!  Macy is feeling really good, and her stomach pains are going away.  She is getting back to her "normal" self!  Yay!  We return at 3 months and 6 months for ultrasounds, labs, and clinic visits.  Then she will have an MR at 1 year.  What a blessing!  We are praying that this sweet girl can just be a teen for a while.  We are praying that our family can just enjoy being a family without the medical worries.  We want to enjoy the lake this summer, have late night bonfires with friends, let the girls have sleepovers with friends, and take some fun family vacations.  Thanks for checking in on us!

How's It Going?

 I am sure that many of you have been wondering how our first week at home has been going.  When we arrived home last week we were simply trying to get used to being at home, resting, and focusing on Macy getting stronger.

We had a couple of interesting days on Thursday and Friday.  Thursday she went to Riley for labs, our local community hospital twice getting some stool cultures, and headed to the pediatrician's office to check on her breathing.  Labs have been good, and her INR is right in range.  Woohoo!  Some of the stool cultures came back negative for some of the tests.  Yay!  I'm pretty sure we scared the NP on Thursday night (the whole package of Macy, fresh out of surgery could scare anyone), and she asked us to come back to see our doctor on Friday morning.  So we headed back, and he said she sounds really good in her lungs.  He checked her incisions, and said they look good as well.  The noises in her throat/nose area continue to decrease.  Last night she was the quietest she's been since before surgery.  However we are continuing on nebs every 6 hours until the sounds are completely gone.

We had a wonderful weekend spent at home together.  McKenna's softball game was canceled, which gave us more home time.  It was wonderful!  We stayed home on Easter Sunday.  It felt very different, but we tried to make the best of it.  The girls hunted eggs, they enjoyed looking through their baskets, and I made a wonderful Easter meal for us to enjoy together. Macy put on a dress for about 20 minutes.  It was long enough to get a family picture.  It was overall a very nice weekend!

Macy has been bound and determined to get back into the swing of life.  Through all of the pain and weakness, she went to school for 2 hours on Monday, and 3 hours today.  She is so amazing!  She is taking the elevator and has a rolling backpack, which both help a lot in regards to her moving around the huge school building.  She will go back tomorrow for 5 hours.  We are currently living day by day, and haven't made any decisions about Thursday yet.

We travel back to Chicago on Friday for 3 appointments.  She will have an ultrasound to check the flow of her Rex Shunt, blood work, and an appointment with The Man (Dr. Superina).   We are praying for continued good results.

We were supposed to have our Coag Check machine training on Saturday, but the nurse had to call and reschedule.  She is now coming tomorrow. We are so happy since it means no more trips to Riley every couple of days to check INR levels! 

I am back at work as well, and am so worn out.  Last night, I was looking at the clock at 8:15 p.m. thinking it would be really nice to crawl into bed!  We have a funny schedule at work this week due to the state standardized test for the older students, so it's been hard to get used to that, and only have a prep period for 30 minutes (especially with trying to play catch up). 

Please pray for continued strength,energy, and less pain for Macy.  Pray for her stomach to continue to heal.  I think we are moving in the right direction.  Please pray for great news in Chicago on Friday. 

Special Guest Post: Grandma Kelli

As many of you know my mom is AMAZING!  She has dropped everything many times to come help us.  Our most recent journey was no exception.  Tonight I am happy to share a post from my mom:

Being a grandparent is one of the best things ever.  You get to love on those little ones, give them forbidden treats, and get so excited when you get a hug or an “I love you.”  It’s when you are faced with a grandchild who is sick or hurting that it’s a whole new ball game.

When Macy was going to have her surgery, I told Kristen that I would be wherever she needed me.  So my first week was spent watching McKenna, enjoying softball, soccer, eating pizza, and all the fun things that go on with grand-parenting a 9 year old.  But in reality, I hid my feelings of being scared that another grandchild was struggling in the ICU.  I am a great actor but when I went to bed and all those scared feelings rose to the top.  Worry about my daughter, son-in-law, and especially Macy facing all the challenges with the surgery and recovery.  Not being there to support Kristen was hard.  She’s my baby.

Now it was time for me to head to Chicago.  Arriving at the ICU, I was met by Kristen with hugs and tears of happiness.  I wanted to turn back time when she was young and I could solve all her problems and make everything better.  Seeing your child struggle, your granddaughter struggle was the hardest thing I have ever had to go through.  I wanted to help but there was nothing I could do.  I couldn’t fix it so I became the “runner.”

I ran for breakfast.  I ran for tea. I ran for supplies.  I ran for lunch, did laundry, and ran and found us a dinner that many times was left uneaten because of a backward step taken by Macy in the ICU. 

Even being there, I waited for Kristen’s blog at night when I was back at the Ronald McDonald house.   She poured her heart out and many times, I cried wishing once again, I could fix it all. 

There were times we all cried.  Times when Kristen went to the bathroom to cry and holding her just didn’t cut it.  Watching Macy in such pain was agonizing and seeing Kristen’s face lined with worry was heartbreaking.  It was so hard to see Kristen miss McKenna and Jeremy and just wishing that things with Macy would turn around. 

Little by little baby steps were made.  Occasional smiles from them.  A laugh at Grandma when she did a funny dance or made a silly joke.  Finally, on the way back to the Ronald McDonald house, I watched the two of them smell the fresh air, comment on the sun, and see smiles on their faces. 

Challenges are hard.  We don’t get to pick the challenges that God places in front of us.  Life isn’t fair.  Sometimes you just can’t fix it.

This VanVleet family steamrolls ahead and handles all that is in their way.  I couldn’t be any more proud that I am part of this family.  We are all Macy Girl Strong!

We Are Home!!!

If you would've asked me 5 days ago if we would be home right now, I would've said that I don't think so.  In true Macy fashion, she had other plans.  I'm not going lie, this recovery has been so rough, and Macy has felt so bad, that we kind of had to light a fire under her butt.  Well it worked, and not even 3 days after leaving the ICU, they let us leave.  Recovering at the RMH was great.  They had a wheelchair for us to use for Macy since she wasn't walking very good, and was still very unbalanced. 

Our first night out was a little rough.  Macy was still having a hard time getting comfortable, and required 1/2 a dose of her pain medication to help.  We are proud that she is only taking it at night, and down to 1/2 a dose.

Yesterday wore us out.  We had 3 appointments at the hospital.  First we headed over early for some lab work.  Then we headed back to the RMH and started packing our things.  My mom made 3 huge trips with our luggage to the car.  The car is parked at the hospital, which is 4 blocks away from the RMH.  After her last trip with bags on both shoulders, the homeless man on the corner at the 711 said he was going to follow her back and start helping her if he saw her again.  Most grandmas could NEVER do that, but not my mom.  She's as tough as they come, and just wanted to make things easier on us when it came time go. 

Macy could only have clear fluids after 8 a.m. until her ultrasound, so that was a little rough.  I felt bad eating in front of her yesterday for lunch, but I've learned along this journey that it's very important to feed myself so that I can better take care of her.  The lunch served at the RMH yesterday was AMAZING!  Double Tree by Hilton served a catered lunch.  Real plates, real silverware, real cloth napkins, and the most wonderful meal.  I don't think those volunteers realized what a difference they made in all of the families' lives yesterday by serving that meal, which to them was just another meal.  It's the small things that can make a big difference for the families there.  If you have a RMH near you, and you have a willing group (work, church, etc), please look into volunteering to serve a meal.  That one time volunteering job can make such a difference in someone's day!

We checked out of the RMH, and said goodbye to the staff there.  They gave Macy lots of well wishes, and wished us a safe trip home, and we headed back to the hospital.  Macy's ultrasound went well.  I was worried with the pushing and moving of the probe on her stomach that it might be very painful for her with her incision, but she did great!  We then headed to see Dr. Superina.

He is ecstatic about this whole process....repairing her Abernethy, changing her to a Rex Shunt kid, and seeing the AMAZING results.  He said that her shunt has already grown, and the amount of blood flow to her liver is truly amazing!  He said her platelet count is up to 252 from the 70s that she had been living in for 3 years.  Her hemaglobin is high, and he thinks it's due to being over transfused in the ICU.  He said that her body will reset itself, however in the meantime he is adding in Plavix to help make her blood smoothly move through her veins until her INR (Coumadin level) is at the therapeutic dose of between 2-3.  It's still under 2.  We were also given the okay to stop 2 meds, one being the diuretic.  She was also given the okay to start applying oil/scar cream to her scars.  We had a great visit!

Tomorrow, we will head to the lab at Riley for another INR check, and then we are hoping our home monitoring machine comes soon so that we don't have to head back to the lab next week.  We return to Chicago next Friday for 3 more appointments.  Then after that we won't return until the 3 month mark and the 6th month mark.  At this time I am not sure what those appt. will be like...CT scan, MR, or ultrasound.  They are suppossed to be calling me back about those soon so that we can get something in the books.  I'm trying to get the 6 month visit to line-up with our Fall Break vacation. 

It was the most exciting feeling ever last night when we pulled into our driveway!  Jeremy and McKenna were waiting for us inside with a beautiful "Welcome Home" bouquet and balloon!  Of course I cried happy tears, and couldn't stop hugging McKenna.  We had a pretty uneventful first night at home.  Macy appeared to sleep well, but woke up pretty early at 6:00 a.m. She's still getting her nebs, but I have spaced them to every 6 hours.  It doesn't appear to really be her lungs though, but more of mucus and sounds coming from her throat.  She has been snoring lately, which she doesn't normally do.  It hurts to cough and clear her throat because you have to use your stomach muscles, so we have to keep pushing her to do that. 

I was so excited to be able to wake McKenna up this morning, help her get ready, and drive her to school.  It was the best feeling!  It's the things that so many people complain about on a daily basis and take for granted.  I am loving it right now!  My mom is leaving today in just about an hour.  I am sure she will be so happy to get home, after putting her normal life on hold to help us our for so many weeks!!!!!  I can't thank her enough, and there is nothing I can do to show her how much it means to us.  However, I hope that someday I will be able to pass on the good deed to my own daughters when they need me!  My mom has taught me so many things, and one of the big ones is how to be completely selfless when it comes to your children, grandchildren, and family.  Thank you Mom!  You are AMAZING, and we love you so much!!!!

We are hoping that Macy continues to regain more strength and health over the next few days.  We are so proud of her for wanting to conquer the stairs last night and this morning!  She was offered to have Dad carry her up last night, but she refused.  Go Macy!  We don't know what next week holds for her in regards to school, we will just have to see how much better she can get over the next 5 days.  She was given the okay to return if she is able next Monday, but that it can be on a modified schedule such as half days. 

Continue to pray for more strength for Macy as she continues to recover at home!  Please pray that her respiratory status continues to improve and that she can start producing more productive coughs.  Thank you so much for all of your love and support. 

Day 15: Macy's Journey with the Rex Shunt (Discharge Day!!!)

We broke out of the hospital today!!!!  I am so shocked that we are out!  Macy had a great night last night, and her oxygen level stayed at 95 and above all night!  Woohoo! 

First thing this morning, a few of the doctors came in and said that they thought she was ready to go home!  She wasn't hooked up to anything, getting any IV meds, on oxygen, or having any seeping from her wound anymore.  She's still on nebs every 4 hours and using her acapella, but it's nothing we can't do from home. 

One hour later, our nurse came in wearing an isolation gown.  Yep, we were put in isolation 1 hour later due to a lab result from one of Macy's cultures they ran on Saturday.  It was from her urine culture.  They placed us in isolation while they talked with the Infectious Disease doctors.  Nope folks, I can't make this stuff up!  My mom and I kept looking at each other in disbelief!  So we spent about 3 hours in isolation before they came back and said that due to such a small amount detected, they think that it was just contamination of the clean catch of urine.  Therefore, they aren't going to treat her or do anything about it.  Dr. Superina then came in, and said to let us go!!!  However, he said that we could only go back to the Ronald McDonald House, and that he wanted to see us back tomorrow in clinic. 

So the plan is to return tomorrow for labs, an ultrasound, and a clinic visit.  Our clinic appointment with him isn't until 4:00 p.m. Chicago time.  We will leave straight from our appointment to head home. We are beyond excited!!!!  We will be tired, and it will be late, but it will be all worth it to be home again.  McKenna is so excited!  I have a feeling she feels like tomorrow is Christmas Day! 

It was so nice to walk out of those hospital walls this afternoon.  Macy and I had not left those walls for 15 days.  It was our first chance in over 2 weeks to breath fresh outdoor air.  It was AMAZING!  It was a challenge getting back to the RMH.  Macy had to climb 3 steps to get in the bus that runs between the RMH and the hospital.  It was a very bumpy ride too.  Then she had to walk from the bus, down an alley, and into the building.  It was the longest she's walked so far.  I was so proud of her!  We had a wheelchair waiting on her inside the RMH, and we were so thankful for that!  While she relaxed in the room, I headed over to Whole Foods to get some things to make Macy dinner.  The House serves dinner to all of the houseguests, but it's not gluten free, so we always need to cook for Macy.  After I got back, she wanted to go for a ride around the house, and then watch the dogs that go outside at the apartment complex next door. 

We all had dinner, and then Macy finally got to take a shower.  She hasn't showered since April 2.  As I got her in the shower, placed on the shower seat, and started washing her hair, I looked down to see tears streaming down her face.  She was sobbing.  I asked her what was wrong, and she said it was her scars.  She said, "I look horrible now.  All I can see are these scars."  Talk about heartbreaking.  I was able to calm her down, and told her that we would finish our shower quickly so we could talk about it.  Poor, sweet girl!

She's not too worried about her stomach scar.  She's had that one before, and knows what it looks like when it heals.  Also, it's hidden under her clothes.  Even tankini swimsuits can hide it if she wants.  It's the great big scar running down the side of her neck.  She can't hide it.  Everyone will see it, and people will look and stare.  My mom and I explained that those scars are her trophies!  She should be proud!  We also explained that anyone who knows Macy doesn't see those scars when they look at her, rather they see one of the strongest and most inspiring girls they've ever known! 

So please, try not to stare.  Try not to make sweet comments like, "wow, your scar looks great!"  I know it's heartfelt, but she is a self conscious 13 year old girl.  I pray that kids are school are kind when she returns.  Trust me, I am arming her with what she can say in response, but it doesn't make it any easier for her when it happens.  My heart just breaks for her!

Pray for good lab work tomorrow, specifically that her Coumadin level is at a therapeutic dose.  Please pray for a good ultrasound showing continued flow in her Rex Shunt.  Please pray for a great visit with Dr. Superina.  Pray for our safety as we return to Indiana tomorrow night.  Please pray for Macy's stomach and incision pains to decrease, and her strength and stability to return.  Thank you for your continued prayers and support during this journey.  I will try to update from home, but I am not sure if I will get to each day.  Also, Macy is going to be continuing her recovery at home, and we just aren't ready for visitors yet.  We will be eventually.  Thank you for your understanding as we try to acclimate to life at home again! 

Day 14: Macy's Journey with the Rex Shunt

I can't believe it's been 2 weeks!  It really seems like much longer.  It seems like forever since we've seen our home, slept in our own beds, seen our pets, ate dinner as a family at the table, etc.  It hurts!  We miss out normal lives so much!

Last night I walked down to the family room on our floor to get my water bottle refilled, and as I walked I saw so many parents.  Parents who were so exhausted they didn't have one once of energy left in them.  Parents sitting next to their child's hospital bed holding their hands because their child is in pain.  Parents eating their evening meal off a hospital tray because they won't leave their child's side.  Parents walking down the halls just to get out of the room for just a moment.  Parents staring out the windows at the end of the hallway praying that they can breathe that fresh air again soon.  Parents trying to entertain their crying or angry child in order to take their minds off of their realities.  Parents who are on the phone talking with their loved ones who they haven't seen, touched, or hugged in weeks.  My first thought was to feel so sorry for them.  It is so hard to see people going through the hardest times of their lives.  I thought "Oh these poor parents!"  And then I thought, "Wait, I am one of those parents."  Yes I am.  I am running out of energy.  I am counting breaths for Macy as she breaths through the pain.  I am eating my meals on the couch or chair next to her bed.  I take 2-3 hallway walks a day just to escape the room for a few minutes and move my body.  I stare at the world out the windows going on without us.  I pray I can breathe fresh air again soon!  I try to do silly things and play games with Macy because she is downright angry and depressed.  I Facetime with McKenna and Jeremy every day, but it's just not enough.  I am one of those parents.  The one things that all of us parents here know, is that we are all in this together.  We've given each other sympathetic pats on the pack and that look that let's each other know that we understand.  We also cheer and clap when we see that a kiddo on our floor is going home!  We'll all get their eventually, but sometimes it just feels so far away.

Macy is doing pretty good overall.  Today, at rounds the surgery team checked her incision, and it looked great.  She has stopped draining!!!!  It's amazing!  She had so much coming out over the last few days, that I was really worried that it wouldn't stop.  They also turned off her TPN.  She was able to unhook from the IV pole all together.  She still has an IV in her arm just in case they need access.  We took her oxygen off at 9:40 a.m. this morning, and she hasn't been back on since.  We will see how she does tonight while sleeping.  She has to keep her level above 90, or else she has to go back on.  Macy walked a total of 4 times today. Her walks aren't long, and they really wear her out, but she's doing it!  We played a mean game of Uno with Grandma.  Macy won the final game!  She is still doing nebs every 4 hours and the acapella breathing following.  She still is getting lots of mucus collecting in her throat area, and is having a hard time clearing because it hurts so bad to cough.  It also hurts her to sneeze and yawn.  I can't only imagine how bad it hurts.

She is mainly on Tylenol to control her pain, but did take one oxy last night to help while sleeping.  She took another one tonight.  I am hoping that we can transition her to a pain medicine that is a little less potent tomorrow.  I think that during the last liver surgery she had she took Tylenol with Codeine once we were getting closer to going home.  We are still working on getting her Coumadin levels correct.  It was a little low when checked this morning during labs, so they increased her dose.  So, how close are we to going home?   Well, her incision is no longer draining!  She is off of TPN!  She went without oxygen all day!  I would think we are pretty close.  Like I said, she needs to make it all night without oxygen.  I think we also need to transition her completely off of the oxy.  I would love to leave tomorrow.......we'll see what they say during rounds in the morning.  I don't want to get our hopes up, so I am trying not to speculate what might happen.

Please pray for a great night of breathing and sleeping with no pain and no oxygen.  Please pray that her incision continues to stay dry.  Please pray that we can come up with a plan to control Macy's pain when we are discharged.  Thank for all of your prayers and support!  Each and every comment you write is read and appreciated!

Day 13: Macy's Journey with the Rex Shunt

When we are going through our trying days here at the hospital, I feel like we live moment by moment.  One moment we feel like we are getting no where, and then other times we feel like we just overcame another obstacle. However, I never want to completely celebrate because I know how things go around here.  When I sit here tonight, recalling our overall day, I can see progress. 

Let me first go back to last night......

At 11:00 last night, they informed us that they were moving us.  I was in my "bed" pretending to sleep while I secretly watch her monitor.  Yep, that's how I roll.  I was like, "are you kidding me?"  Macy had just gotten comfortable after the scary allergic reaction and she seemed to be finally calming down.  So I had to load our bags and belongings (which have increased over our stay) onto a cart and wheel it next to Macy's hospital bed through the halls of the hospital.  On the trip there Macy got hot.  When we removed the blanket covering her legs we noticed more of the rash.  I also noticed that her heart rate had climbed into the 90s.  All of it was a bit concerning to me considering she had been fine before the rash started. 

Anyway, they moved us from the ICU (floor 16) to the liver floor (floor 20).  Our room is pretty nice.  It has lots of cabinet space, a great view of Lake Michigan, and a full bathroom with a REAL shower.  Yep, not just one of those showers that have a curtain to separate it from the toilet.  Woohoo!  So Macy and I quickly adjusted, met our new nurse, and tried to get some sleep.  The strange thing is, Macy slept with the oxygen, and as the night went on, she kinda started to breath funny, and we had to end up turning her up from 1 liter to 2 liters.  Again, she was completely fine before the allergic reaction.  So who knows.  We ended up turning it right back down after she woke up and she was fine. 

So today.....

When the doctors rounded I explained all about the allergic reaction last night, and everyone has decided no more Miralax.  We have no idea if that is what truly caused it, but that is the only thing that could make any sense.  Anyway, I also told them about her breathing and her heart rate that remained in the 90s all night long.  They decided to do a chest x-ray first and take a look at her lungs.  She still appears to be sort of wet in there, so we decided to start back up respiratory therapy.  They started her on a neb treatment, and some other therapy that requires her to blow into a acapella blower.  They will continue with these treatments every 4-6 hours.  Macy thought it helped.  They also decided to run some blood and urine cultures on her because her white blood count increased.  It has been very stable, but her labs this morning showed the increase. 

I looked at the clock at 1:00 p.m. and thought, "What progress have we even made today?".  It didn't feel like we made much due to dealing with all of the labs, cultures, doctors, and chest x-ray.  Looking at our day as a whole we sure did accomplish some stuff though.  Macy went on 3 short walks.  She ate 3 good meals.  She stopped taking the oxy pain medication, and we are just sticking to Tylenol.  She took a couple good breaks off of the oxygen.  So yay for those accomplishments!  Go Macy!

Also, today I noticed that her wound bag was leaking a little bit.  They ordered up a new one, and called the surgery team.  When they came by and removed the old one, we noticed that it was barely leaking compared to 2 days ago.  So they decided to just put a thick pad on it and wrap it with a body wrap.  She has some leakage from it, but it's been over 3 hours.  If we can get by with only changing the pad every 3 hours, we would much rather do that than have that bag attached to the front of her abdomen.   Also, it should continue to be less and less drainage as time goes on.  We can't leave with that bag attached to us, but I'm pretty sure that we can leave with a dressing that needs changed every once and a while. 

After the good day of eating, it looks like they will be turning off the TPN in the morning.  Macy is so excited for that!  It means that she will not be hooked to an IV pole anymore, and the dang machines won't beep constantly waking us up all night long or during her rests.  So, one of the only things keeping her here is her trouble breathing and getting off of the oxygen.  It's very frustrating.  She seems to tire very quickly, and she gets short of breath quickly also.  When I give her breaks, she asks to have it back on because she feels more comfortable with it on.  It's crazy what a struggle all of this has been for her from a respiratory standpoint, and I understand that it takes some time to recover.  It's so hard though.  I want to see her recover faster.  It's hard to see her scared to breathe on her own. 

Just to give you all an idea about how much fluid this chick had on her........

When we arrived at the hospital, Macy weighed 64 lbs.  Following all of the ICU craziness with the bolus amounts of water and the blood transfusions, we finally were able to weigh her, first on her bed, and then on a scale.  At her highest, she weighed 80 lbs.  Yep folks, she was carrying 16 extra pounds of fluid.  It's absolutely crazy to think about!   Well today, she was back down to 64 lbs!   

We are praying for an uneventful night.  Or actually maybe an eventful night full of sleep, good breathing, less drainage from her wound, overall healing, and staff leaving Macy alone!  So yes, pray for an eventful night full of those things for us!  AND pray that we can go home soon!!!! 

Day 12: Macy's Journey with the Rex Shunt

I've been trying to think about my post tonight, and what I might say.  I was going to say it was a pretty uneventful day.  At rounds this morning they told us that we were going to be moving out of the ICU, and that they would let us know when they had a bed for us.  Macy went for a walk this morning down to the end of the hallway.  She got very winded about halfway back, and felt like she couldn't breathe.  We had to carry her quickly back to the room and put her back on oxygen for a little bit.  It wore her out so bad that she then napped for almost 2 hours.  When she woke up from her nap, and she vomited.  It seemed like a lot of mucus, so it might have upset her stomach,  Around lunch time the nurse told us that we should probably pack up our things in case they called soon with a room.  Macy was in quite a bit of pain throughout the afternoon, and didn't want to do much.  So I just let her be a little bit of a moody teenager, and watch Teen Nick.  By early evening, we were still waiting to be moved.

So again, I was going to say that we had an uneventful day, and then this happened.....

Macy's dinner arrived in the room.  She had ordered gluten free pasta with alfredo sauce, cottage cheese, ice cream, and apple juice.  She took one bite of the pasta and said it was so gross.  I knew there was no talking her into eating it, so I ordered her some tomato soup.  While we waited on the tomato soup, she started eating some of the cottage cheese, and then moved on to the ice cream.  I looked over at her, and she had both hands up near her shoulders and she was scratching her shoulders extremely hard.  I asked her what she was doing, and she said they itch so bad.  I casually walked over there, and OMG.......she had huge welts of gives and redness all over her shoulders, chest, neck, etc.  It looked horrible.  I called the nurse in and she paged the doctors.  Of course being the teacher I am, and knowing about kids having reactions to foods and needing epi pens, I was pretty worried.  We had 2 doctors come to check her out.  At this point she was crying and scared.  They were asking all kinds of questions about what she ate, had she ever had a reaction before, is she allergic to any foods, etc.  Nothing.  Never.  It spread down both arms and started also on her upper thighs.  They ordered IV benedryl, because she wasn't struggling to breath, talk, or having any other anaphylactic symptoms.  It seems to have worked for the most part.  Some areas of welts and redness lingered for a while, but it seems to have taken care of it.  The bad part is that we have absolutely no idea what caused it.  She doesn't normally react to gluten in that manner.  Typically if she eats something with gluten in it she vomits.  The only thing we can think at all is that they gave her Miralax before dinner to help her go the bathroom.  I am pretty sure it's rare to have a reaction to Miralax, but then again Macy is about as rare as they come.   So we are all watching her closely tonight to see make sure something does go on again.  So weird! 

Needless to say, we are still in the ICU.  Not because of the reaction, but because they still don't have  a room for us.  They said that if a room became available upstairs that we would only be required to move in the middle of the night if they needed the ICU room.  Which I totally understand.  I just don't want to have to walk her up in the middle night, and drag all of our belongings through the hospital.  We'll see what happens. 

Macy stomach wound has seeped all day, and the new method with the ostomy bag is working great.  She took off a large amount of fluid today.  She is giving it a run at sleeping without the oxygen tonight.  So far her oxygen level is a little lower than I would like, but still in range.  So we'll keep an eye on her.  She is down to 1 IV in her arm, which is there for the TPN.

So those are things still keeping us here.....oxygen, incision seeping, and TPN.  I am praying it all falls into place soon!  We are exhausted and just want to get home.  Please pray for no more allergic reactions for Macy, and that the benedryl is all she will need for the one she had.  Please pray for Macy to eat better so that we can stop the TPN.  Please pray for the seeping to lesson as the body heals.  Please pray that Macy continues to breathe well without the oxygen, and that she doesn't need to return to it anymore.  Thanks for checking in on us! 

Day 11: Macy's Journey with the Rex Shunt

Today marks officially the longest time I have gone without seeing my sweet McKenna.  For our last big liver surgery, we were able to get her to Chicago for a visit on the 11th day.  So this is also the longest my two girls have gone without seeing each other.  It is so hard!  I miss her more than I can even describe!  I also miss seeing my two girls, who are the best of friends, interact together.  Most of the time they absolutely love each other, but right now I'd even take all of the fighting for days just for all of us to be under one roof together again.  I miss Jeremy so much, and it's only been 2 days.  He's my rock, and going through this life without him just doesn't work for me.  So being apart in these circumstances is very difficult.

This is also the longest ICU stay we have ever had.  It's crazy to think that she has been in the ICU for a total of 8 days now.  I am not going to sugar coat anything.....today totally sucked!  We had a purely crappy day!  Overnight we noticed some blood/fluid stains on her hospital gown right on top of where her abdominal incision is.  Overnight it got worse, and by 7:00 a.m. it was literally seeping out all over and soaking her gown and her bedding.  It is fluid, but it is bloody looking.  It scared Macy so bad.  You have to remember this is a kid who just had internal bleeding that she started vomiting out back in December.  It was a very traumatic event, so seeing this would surely send her into a panic.  Well it did.  She kept telling me that she was so scared. 

To spare you too many horrible details of our day, I will just tell you the big picture.  Basically her CT scan showed that her abdomen is full of fluid.  Fluid is in there all around her organs.  Typically it can be absorbed and peed out.  Well her fluid found its way out of two areas in her incision.  The surgeons assured us that this is seen very often and they are not worried.  However, they were scrubbed into surgery today, and the solution in the meantime was to place a large dressing over it that could soak up all the fluid and keep changing it.  Well depending on how she was sitting or laying, the fluid would pool and start seeping out of the dressing and run down her body.  Remember, it looks like blood.  Then we would have to call the nurses in to change it, and Macy would have to see all of the bloody fluid.  This happened every 20-30 minutes.  Finally I had it!  Dr. Superina is out of state through the rest of the week, so I demanded to see one of the other surgeons that I know.  He came to our room about an hour later.  I basically told him that this solution is not acceptable.  She is 13 years old, and it is scary for her.  Not only that, but she couldn't even walk or do anything today due to the huge dressing and leaking.  She was afraid to sit up straight to eat because it would leak faster.  Fortunately he listened to me, and came up with a solution.   He and another surgeon removed her some of her steri strips to find the sources.  Like I said there were two areas.  They are located on the vertical line of her Mercedes symbol incision.  He then had the nurse apply some pressure to keep the fluid in, while he cleaned and applied different types of adhesive and skin protection around the area.  He then applied an ostomy pouch to her abdomen to cover the two areas that are seeping.  They are now draining into the bag, and has to be drained every 2 hours by opening the bottom of the bag.

He said the fluid will eventually lessen and lessen, and then stop completely.  I asked how long and he wouldn't give me a timeline because he said if he did it would be wrong.  I then asked if he was talking weeks or days, he said days.  So that is reassuring.  He said the more moving and activities she does the faster it will drain.  He also started her on a med that is similar to Lasix, but works differently in the body to remove fluid.  Not ideal what is going on at all, but it's at least a solution.  Her abdomen is already starting to look smaller. 

So the fluid filled abdomen and her breathing are the two things we need to focus on to get out of here.  She was on oxygen a lot today due to all of her anxiety.  I am praying tomorrow is a better day!

Don't let my crappy day fool you though, we did have some small victories as well.  The most important of all.........her CT scan showed that her Rex Shunt is open, flowing, and functioning!!!!!!  Dr. Superina messaged to say that it looks great!  Yay!  That is what we came here for!!!!  That is what will make all of these challenges worth it in the end.  Also, they have transitioned her fully to Coumadin.  She is at a therapeutic level and she was able to stop the IV Heparin.  Another happy thing is that Macy did eat dinner tonight, after struggling to eat all day due to her fears of the fluid leaking.  Keep eating Macy!  We need to get her off of the TPN nutrition. 

In other great news, our insurance approved us having a home monitor to monitor her INR levels.  INR is what you check to make sure that your Coumadin is at a therapeutic dose.  Last time Macy was on Coumadin, we went daily for the first 2-3 days, then every other day for a couple of days, then once a week for a few weeks, then every other week, and then finally once every 3 weeks for labs checks.  We had to drive to Riley, and Macy had to be stuck every single time.  This home monitor allows us to finger prick her, check her level, and then let Dr. Superina's team know so they can adjust her dose.  Just think, we can take this wherever we go like on vacations or to the lake!  It is going to be so nice to monitor this from home without heading to the lab all of the time.  They will call us in 7-10 days to set up a time for a nurse to come to our house to train us.  I am beyond excited for this! 

Small victories, right?!?!?!  That is what I am holding onto.  Tomorrow is a new day! 

Today I was ready my daily devotional, and it really spoke to me.  It said, "To find joy in this day, you must live within its boundaries.  I knew what I was doing when I divided time into twenty-four hour segments.  I understand human frailty, and I know that you can can bear the weight of only one day at a time."  One day at a time, that's exactly right!

Please continue to pray for Macy's overall health! Please pray that she continues to eat her food well, and can be taken off of the TPN.  Please pray that her pain continues to get better each and every day.  Please pray for healing of her abdomen, and for the fluid to reduce and stop seeping through her incision.  Please pray that her lungs can continue to heal, and she can be completely oxygen free soon.  Please pray that we can get Macy out and about tomorrow with some walking practice and wheel chair rides.  She is pretty down right now!  Please pray for me to remember to take one day at a time, and to stop worrying about a timeline and more about Macy's healing and the timeline that her body needs.  Thanks again for all of your love for my family!

Day 10: Macy's Journey with the Rex Shunt

Overall another phenomenal day!  Nothing stops this chick!  I am completely in awe at her strength and her ability to never let anything stop her from accomplishing her goals.  We've had some ups and downs today.  Our downs are mostly pain control, and she was very nauseous today and vomited twice.  I don't know why she is vomiting, but it could be from a combination of things.  She stopped almost all IV medications today and switched to oral.  The fact that she is still eating only small amounts could allow all those oral meds to upset her stomach.  Also, respiratory therapy is only giving her 1 med now, and discontinued 1 med, the cough assist machine, and the deep suctioning.  One of the vomiting episodes occurred after a neb treatment.  Since the excess mucous isn't being suctioned out now, she may be swallowing it, which could cause an upset stomach.  Another cause could be pain.  She stopped the pain med that she was controlling by pressing the button.  She pressed that button so many times yesterday, so I am sure she is in more pain.  I honestly think it's a combination.  So we moved back to ice chips and water earlier, progressed to Sprite, and then was able to eat a little bit for dinner (mainly fruits & yogurt).

Want to hear some AMAZING news?  Macy was on high flow oxygen yesterday, 20 liters at 45%.  She did so well yesterday that she slept with the high flow on instead of the bipap.  As she slept, they kept turning her settings down.  She transitioned to the wall oxygen with a normal nasal cannula today, and she is currently completely without oxygen.  They said that her lungs sound good and that she is moving air well.  She is sleeping with a little oxygen tonight just to be safe.  Respiratory therapy has discontinued all treatments unless we think she needs them.  Woohoo!  Go Macy!

She currently only has 2 things running through her IVs, therefore they got her a smaller pole.  She still has TPN (nutrition) and Heparin (blood thinner).  The TPN will be continued until she is eating better, not vomiting, and having no GI discomfort.  Like I said last night, the Heparin will be given until we can completely transition her to the Coumadin (oral blood thinner).

Macy went to for a CT scan today.  We didn't go until about 4 p.m. this afternoon.  She was pretty tired before we went, but was so happy to get a wheelchair ride off of the floor!  So was I!  It was the first time that we had both left the floor since surgery last week.   However, she experienced so much pain trying to get on that table, and get situated for CT.  It brought tears to my eyes.  She was so strong and tough though, and fought through the pain.  In the process, I think she caused her abdominal incision to bleed a little bit.  She had climb on the table, lay completely flat, and put her arms over her head.  She had tears streaming down her cheeks, but she kept breathing in and out to calm herself down and work through the pain.  We are praying for great news about the CT scan.

Macy met her goal today of walking to the nurses' station.  As she was walking there, her old friend Steve (an RT that we had for 3 days in a row) saw her.  He about fell over because he couldn't believe it was the same girl.  He was so proud of her!  Tomorrow, I think she wants to go for a big walk!  She had physical therapy and occupational therapy today during our walk time, and they were so proud with how well she was doing.  OT is trying to get her to twist her body side to side more to avoid getting stiff due to the abdominal incision.

Like I said last night, I think we need to be off of the Heparin IV med to get out of the ICU, but for some reason I felt like we went to the floor on Heparin when we were here 3 years ago.  I am sure they are wanting to see the CT scan also, but I can't see why we can't move out of the ICU soon.

I can't say enough about all of you who have reached out to us and prayed for us.  I want you to know that I read each and every comment you make about my blog posts.  I just don't have the time to respond.  I am so sorry for that.  So many of your comments have brought me to tears.  We feel so much love and support!  Please pray for great results from the CT scan. Please pray for continued pain control.  Please pray for Macy's stomach and GI tract to cooperate so this poor girl can eat!

Day 9: Macy's Journey with the Rex Shunt

We had another day with small victories today!  Unfortunately this morning started off with a lot of pain for Macy.  I believe most of the pain was a combination of all of the extra fluid in her abdomen, her incisions, and her lungs not working correctly.  As the day progressed, we discovered that additional pain from her GI system was added.  She seems to be having lots of gas, stomach, and intestinal pain as she progresses her diet.  This is totally to be expected considering how many days she went without eating, and how long that system was not functioning.  Due to all of this pain though, they started her on an oral pain medication to keep a baseline going, and then still allow her the button for pain that she can press to give some medication through an iv. 

She progressed to a normal diet today.  She tried her best, but food didn't sound the greatest to her, and every time she ate, she had stomach pains.  However dinner seemed to go better than lunch, so I think we are making some progress.  They started her on an additional stomach medication to hopefully help with gas pains. 

She slept on the bipap breathing machine last night just to ensure she was safe, and it gave some more time to heal her lungs.  She is still getting respiratory therapy every 4 hours.  They are still doing 2 different nebs, the cough assist machine, and then deep suctioning.  No one here can believe how she sits though it all so calmly.  I never thought her lungs would be one of things we'd be so worried about following this surgery.  It's actually one of the two things that's keeping her in the ICU.  She transitioned back to the high flow nasal cannula first thing this morning.  They started her on 20 liters, at 45%.  She is now down to 10 liters at 25%, and was given the okay to sleep with it tonight instead of the bibpap.  However if she dips in her oxygen levels too much tonight, we'll pop the bipap back on. 

She had one IV access go bad today, and had her arterial line taken out as well.  She still has 3 IVs in, and she needs all of them due to all the IV meds she is still getting.  One has caused a little pain off and on, and we are all afraid she is going to lose it.  If she does, she will need to get another one put it.  However, we think they will discontinue the TPN nutrition tomorrow if she is eating better, and will be discontinuing the heparin (blood thinner) IV med soon because they are transitioning her to Coumadin orally as her blood thinner.  So we just need these IVs to hold out a couple more days.  The Heparin blood thinner is the other thing keeping her in the ICU.  She needs to be off of that before she heads to a regular floor room. 

She was up and in the chair first thing again this morning, and spent much of today up and down from the chair to her portable toilet.  It take a lot to move her back and forth since she is on oxygen and has all of the lines running to her IVs, but we made it happen.  There were times she sat on the toilet with a blanket over her lap and watched TV because she kept feeling like she had to go, but it was taking so long to make it happen.  One time 3 doctors came in and talked to us, and didn't know that she was on the toilet until I mentioned it.  It was pretty funny to see the face of one of the male doctors when I mentioned it. 

Her physical therapist came by again today, and helped Macy accomplish another one of her goals.  Macy shuffled herself out of the room and into the hallway to sit at a chair near a window.  This was in late afternoon, and she was pretty exhausted already, so she only stayed out there for about 5 minutes.  And let me tell you that was one big feat to get her out there, and get her back in, but not one nurse or therapist complained.  She took a couple of short naps due to interruptions today, but needed much more rest than she got.  She was in bed by 7:45 p.m. tonight, and actually asked to go to bed and turn the TV off.  We tried to wake her up at 8:00 p.m. for some oral meds, but she was so out of it we couldn't.  So we waited for her respiratory therapy session so that she was awake enough to take meds. 

I will tell you one thing, Macy is very well known on this floor.  No one can believe how much strength and determination she has.  Every day we have nurses who had her another shift coming back to check on her and say hi, and doctors who just come in to visit.  They are in awe of how amazing she is.  They said it's not often you get a kid in here like Macy.  They didn't know what to do today when she wanted to play the live BINGO on the TV.  They had to hunt down BINGO cards.  They said most kids in the ICU don't play the live BINGO.   Well, meet Macy.

Jeremy and my mom made the switch today.  Mom dropped McKenna off at school, and headed to Chicago. Jeremy left here around lunch time, and headed to Indiana.  It sure was hard to let him go.   All 3 of us were in tears.  It's like we are all in the middle of a war, and 1 of us that have battled together with the whole time has to leave.  However, we have another special little girl that needs us too.  Jeremy said that he was waiting in the school office when McKenna came running around the corner, all smiles, and hugged him with the biggest hug.  She told him that it was hard not to run in the hallway on the way there.  I can't wait until the 4 of us are all together again!

My mom is here to help now, and it brought me to tears to see her.  I assured her that they were happy tears.  When you are in the midst of very scary things in your life, seeing your mom is one of the most reassuring things.  It makes you feel protected and safe.  She knows from talking with me through this that Macy is still very sick, and in one of her hardest recoveries ever, however I think she was still shocked to see the challenges we are still facing.  She said the blog makes things seems a little different than they are.  I think that is because I try to focus on the positives, and the small miracles surrounding Macy.  The overall big picture here is that we are still in the ICU.  They don't just keep people in the ICU.  If you are in the ICU, you are there for a reason.  Is she getting better? Yes, absolutely.  But we are still here, and have no date of when we might move to a step down unit. 

Macy has a CT scan tomorrow.  They will be looking at her Rex Shunt and her hematoma.  We are praying for an open Rex Shunt, and a smaller, diminishing hematoma.  Please pray for those same things as well.  Please pray that Macy's pain is better controlled tomorrow, her lungs continue to heal, and her stomach and entire GI system start to cooperate.  Love and Hugs to you all!

Day 8: Macy's Journey with the Rex Shunt

I am making an earlier post than usual because we have had the most fabulous day, and I just have to share it with you all.  Macy was very sad when she first woke up this morning.  She cried twice, told me "I can't do this anymore", "I hate being here", and "this is torture"!  When the first ICU doctor came in this morning she said "What do I need to do to leave this floor?"  He explained to her what he was looking for in regards to her moving to a regular floor.  Well, I think she is now bound and determined to make it happen.

At about 10:00 this morning, the respiratory therapist came in and did Macy's treatment.  She then put Macy on a high flow nasal cannula.  PT and OT came by, and helped her get out of the bed and sit in the chair.  Just to top things off, one of the doctors said that as long as she was on the high flow cannula she could have ice chips.  She was beyond excited since she hasn't eat anything in 6 days.  She loved them, and really enjoyed being in the chair.

To our surprise, Dr, Superina came by this morning as well.  He was so excited to see Macy sitting in the chair with high flow on.  He told her that her NG tube in her nose needed to come out, that they were starting her on TPN (IV nutrition of fats and lipids), and that she could progress to a clear liquid diet.  So far she had ice chips, popsicles, jello, broth, and sprite.

She is still very swollen, and you can still hear junk in her throat and lungs area.  We are continuing with the Lasix and respiratory therapy sessions.  She was able to stand up from the chair, turn and sit on a mobile toilet multiple times today.  She has had a total of 7 or 8 bowel movements so far!  Woohoo!  The fact that she is able to move around some is going to also help take that extra fluid off of her body.  Since she is able to sit on the toilet, we let her wear her own underwear and a pair of comfy pants.  Well, they barely fit.  They were so tight from all of the swelling she has going on.  When we arrived for surgery 1 week ago, she weighed 65 lbs.  Due to all of the fluid, she weighed in at 80 lbs yesterday and 79 lbs today.  That just tell you how much extra fluid is on this girl.

When Dr. Superina was checking on her this morning, he said that he wanted a CT scan on Wednesday, and then we needed to work on transitioning her to Coumadin (oral blood thinner).  Unfortunately Coumadin again is really a bummer, due to her being at such a high therapeutic dose.    However, it is way more important to me that my girl has a functioning liver!  He is thinking Coumadin for 6 months, and Plavix for 6 months.  After we get discharged from here, he said we can either go home or stay at The Ronald McDonald House, but that we need to return for a follow-up 1 week later.  I do not think she will be released back to school until following that 1 week post-discharge appointment.  I wish we had some dates and plans that were a little more definite, but it all depends on the CT scan on Wednesday, and how Macy continues to do.  It would make me the happiest person in the world to get home some time this weekend.  I miss my sweet McKenna more than I could've ever imagined.  Each time I talk to her, it gets harder and harder to realize how long I have been away from her.  I hope my mom knows what an absolutely AMAZING mother and grandmother she is for stepping in and doing everything she has done for us.  I hope some day that I can repay her in the same way.  Thank you Mom!  I love you!

Pray for Macy's body to continue to heal over the next couple of days.  Pray that her lungs continue to heal and the fluid continues to come off of her body.  Pray that her CT scan shows an open shunt with great blood flow.  Pray that we can get home soon and be a family under one roof again.  Thank you for all of the love and support you have given us so far.  We aren't in this alone, that's for sure!

Day 7: Macy's Journey with the Rex Shunt

The roller coaster ride of the ICU is so exhausting.  There are so many ups and downs, however the total trajectory is up.  I keep reminding myself what Macy was like following the surgery on Wednesday, and how far she has come.  Is she close to being recovered from this?  Definitely not.

We started our morning with fire in our eyes.  We set some goal, and we met those goals.  Macy took a break from the bipap breathing machine and was on a high flow nasal cannula for 1 1/2 hours.  During that time, she sat up in bed.  It hurt so bad, but she did it anyway.  Then she hung her legs over the side of the bed.  Then she stood up holding onto an IV pole with assistance, and pivoted her legs to turn into a chair.  She sat in the chair for 30 minutes!!!!  We were so proud of her.  Following that, she was exhausted though.  She asked to be placed back on the bipap, and then napped for over an hour. It took everything out of her.

During our afternoon her oxygen levels kept trending down.  She is really having a very difficult time from a respiratory standpoint.  Her abdomen is extremely swollen with fluids.  The large amount of fluid pushes up onto her lungs compressing them and causing her to breathe more shallow.  A respiratory therapy treatment this afternoon was very rough.  Macy was fighting the coughing machine some, but was really fighting the deep suction.  Well, it resulted with a bleed somewhere in her nose, mouth, or airway area.  Blood came out of the tube, and she had blood coming out of her mouth.  Pretty sure it took her back to that early morning in December when she had the varices rupture.  She freaked out, was very worried, and it send her into a panic.   She desated her oxygen level, and we had a very hard time getting her back up.  One of the ICU docs came in, and was a little concerned with her look and numbers so he ordered a chest x-ray.  The chest x-ray showed fluid in both lungs.  So another doc ordered a chest ultrasound to find out how much.  If it was a lot, they would possibly do a chest tube to drain the fluid.  It showed moderate fluid on the right side, and less than moderate fluid on the left side.  They decided not to do anything at this time, and to follow the current plan.

Our current plan is to pull off all of this extra fluid that they pumped into her the first few days.  They are doing that by giving her the Lasix.  It was set for every 8 hours, but they bumped it up to every 6.  It will also help the take off fluid the more she tries to move around.  Getting rid of the fluid will help a ton with her breathing as well.  It just takes time.  Unfortunately this surgery happening in the middle of the school year has been extremely hard on us and so many other people as well.  However we didn't have a choice, and I am very glad we are on the other side, working to recover. 

Macy's evening was mostly spent with her falling asleep and waking up over and over.  She was really worn out.  We turned on some TV with the hopes of keeping her awake.  It helped a little bit.  Then some nurses came to our room with the BEST news.  They got us a new room.  It's bigger, has a huge window we can see out of, and has a shower in the bathroom.  I was beyond excited because last night I showered again in that horrible shower in the family lounge, and my water was COLD.  I wanted to cry, but thought there is no way that I am standing in this freezing water and crying.  So I hustled my butt on out of there, and my hair still doesn't feel clean.  So first thing in the morning, I am hopping in the shower in our NEW room, and then I am going to drink some tea looking out the giant window in our NEW room!  NEW room, NEW day tomorrow.  I am going to looking for God's gifts tomorrow in Macy's recovery.  Please pray for Macy's body to rid of all of these extra fluids.  Pray for her lungs to recover and clear up.  Please pray for more movement for Macy.  We are thankful that tomorrow is a new day, that can be full of many blessings. 

Day 6: Macy's Journey with the Rex Shunt

Today was our 3rd full day in the ICU.  Every time we are in the ICU, I forget just what life is really like here from before.  Your room is always hopping, you see so many doctors and nurses that your days blend together, your days feel like forever, and you get no sleep.  I have had about 5-6 hours of sleep (maybe 7) since Tuesday night.  Macy is in constant need, so sleep at anytime seems really out of the question.  Even if we wanted to nap, our room has no blinds on the windows, and we can't see out of them either because they have been covered with some sort of white film.  The ICU room we are in was made as a room for patients with extremely contagious illnesses who need to be isolated.  Macy is not that kind of patient, but it was the only room on this floor open when we arrived.  Just to add to the crappiness of the room, it has no shower in the bathroom.  I have to shower in the family lounge bathroom.  If I had it in me to leave the hospital for a few minutes, I would head back to the Ronald McDonald House like Jeremy to shower, but I am not comfortable leaving. 

I am first going to start with the positives today:

1. Macy's body started to come out of the shock state that she was in overnight.  Her heart rate finally started dropping.  She was living very uncomfortably in the 170s and 180s, and is finally in the low 100s.  Her norm is much less, but she is still only 3 days post-op so this is great!
2. She has started on nebulizer treatments with deep suctioning to help.  It is horrible to watch her get the suctioning done.  They go in through her nose suction all of the junk out of her airway.  It gets her really worked up, and her heart rate increases, as well as her blood pressure.  While doing it her oxygen levels drop.  Poor girl!
3. They came by in the afternoon to try her on a high flow nasal cannula.  She lasted for about 30 minutes, and then asked to be put back on the bipap mask.  We might make another run at it for a little while, but I think all of the fluid causes her to wear out quickly with her breathing.
4. Her fevers are officially gone, and her 2 antibiotics that they started her on have been discontinued.
5. They stopped the blood pressure medication that she was on because her numbers are normal.
6. AND THE BEST NEWS OF ALL:  Her morning ultrasound showed a very nice, open, flowing shunt in her liver!  Woohoo! They started back up her blood thinner that they had stopped in hopes of getting the bleed to stop.

Here are some of our challenges:

1.  Macy is still very swollen in her abdomen with a ton of fluid.  It makes it hard to move around, and it makes it harder to breath.  I think the fluid causes her lungs to have a harder time expanding so that she can breathe correctly.  Like I said, to help this they are doing the respiratory therapy.  They have also added Lasix (a medicine to help pull off the fluid).  She is responding well to it and peeing like crazy through her catheter.  
2. .The ultrasound still shows a hematoma in her abdomen.  So something inside was bleeding, but it looks like it has probably stopped actively bleeding because all 4 ultrasounds have shown that it is unchanged.  It might still be oozing some, but if it is it's extremely slow.  Her hemaglobin levels were normal, so they don't think anything is bleeding anymore.
3. She is struggling to cough which is also making it harder for her to clear her lungs and move to a nasal cannula.  We believe that is why she felt so uncomfortable on it.  The bibpap forces air in and out.  The cannula just forces air in, and she has to breathe out, but if her airway is full of secretions that she cannot cough, she can't breathe out very well, and it causes her to feel that she is struggling.  So they decided to add a cough assist therapy to her treatment to help assist in coughing to move all of those secretions.
4. She hasn't eaten any food since Tuesday.  Obviously it is clear that eating in her current state is not doable, but we need to make sure she is starting to get something in her body.  Typically if the patient is not starting small amounts of food or drink on their own in 3 days, they start them on something.  Today the doctors said they want to see how she continues to do overnight and tomorrow morning, and then make a decision.  If she doesn't look like she is heading toward the nasal cannula soon, then they will probably start giving her small amounts of a liquid formula into her NG tube (that goes through her nose down to her belly). This tube is currently sucking out stomach fluid.  
5. Macy has been having some ICU psychosis.  Last night when she would wake up she was clearly in a very confused state.  She would stare at things for a very long time, and then thought she was seeing things that weren't there.  She thought she saw our dog Yuri at one time, our cat Harley another time, and even saw something on the turned off TV screen that she said was very scary.  This can be very normal for patients who are on strong pain meds, as well as patients who have been in the ICU for an extended period of time.  We started our morning with a plan following those episodes last night.  We turned all lights on at 7 a.m., and started to have a very clear "day" time.  She took a "bath", we brushed her teeth, and she got her bed and gown changed.  We turned off the lights once today in hopes of a nap.  She napped shortly, but then was back up.  So it was all lights on for the remainder of the afternoon.  We turned the TV to Teen Nick and Animal Planet (her two favorite channels), and let her watch some afternoon TV.  Nighttime routine includes brushing teeth again and lights out by 9 or 10.  We hope this schedule will help her with the psychosis some, and give her a more normal feel.  

So overall, she is placing lots of checkmarks in those boxes.  We still have a lot of things that need to come together.  Each day is a new day, and each day has so many options for positive changes.  She's got this!  Keep those prayers coming!  Pray that Macy can start to clear her airway on her own without so many therapies.  Please pray that Macy can start tolerating the nasal cannula for a longer period of time.  Please pray that the Lasix continues to pull the fluid off of her, and her abdominal swelling can start to decrease.  Please pray that the hematoma in her abdomen starts to absorb back into her body, and that there is no active bleeding.  Please pray that our new "schedule" helps combat the psychosis that Macy is facing.  We are thankful for each and everyone one of you following our blog, praying for us, sharing Macy's prayer needs with others, and continuing to have our family, especially Macy, in your thoughts so often.  We are very blessed to have so many caring people in our lives.  

Day 5: Macy's Journey with the Rex Shunt

It is so hard to believe that we are 5 days out from our initial surgery,  I have to keep reminding myself that we are only 2 days out from the big surgery.  Monday's surgery was nothing compared to Wednesdays.  However, this was not AT ALL how I thought our 2nd day post-op would be.  I expected to see her awake on Day 1, talking, maybe a little oxygen support, feeling sore, etc.  I thought by Day 2 we would be looking at heading to a regular floor room and out of the ICU.  Definitely not how things have gone, and we are constantly reminding ourselves to take one day at a time. She is creating her own "new" timeline. 

Last night was pretty uneventful.  She had a small amount of blood that came out of her NG tube (tube that is going into her stomach, draining fluid).  So far it had just been tinged colored fluid, so it was something that was a little concerning due to her having the esophageal varices bleed back in December.  But by the time all of the doctors had communicated and ideas were being discussed about starting her on Octreotide or something to possibly stop the bleeding, it stopped on its own.  However she's had some darker tinged fluid this evening. 

Her hemoglobin level did decrease again so they gave her 2 more units of blood, but following the blood at a 6:00 a.m. lab it was stable again. Her blood pressure has increased which they were wanting to do, so they held her blood pressure meds.  She received 1 more unit late morning, due to another low hemaglobin. However, a hemaglobin level drawn at 6:00 p.m. showed a stable level.  They do not want to transfuse her until she gets under a certain number.  They'll recheck tonight around 10 p.m. They are hoping for continued stability in these levels to show them that the internal bleeding has stopped. 

In the morning, one of Dr. Superina's team members came to see her.  He said that they want to still wait and watch.  These bleeds can heal, even with a blood thinner.  He said it appears to be a very small bleed, and sometimes even the blood slowly oozing can start acting on itself like a clot and slowly stop.  They are mainly watching her overall status.  Seeing some improvements is great, and shows them that we are possibly heading in the right direction. Dr. Superina came in tonight and said that her ultrasound looked good and that the shunt is open.  He wants to temporarily stop the blood thinner medication since he has had 3 great view of her open shunt, to possibly allow this gut bleed to stop.  Then we can start her back on it. 

Doctors made rounds this a.m.  They were happy with her progress.  Chest x-ray looked good this morning. It appears that her body may be starting to come out of this inflammatory post-operative shock state.  We are looking forward to the time that her heart rate starts to drop and stays down.  She is over double her normal heart rate.  They ordered to take out her foley catheter to that she can start peeing on her own however the surgery team said to leave it in because they think it's better to measure her urine with it in.

We had a bit of a rough afternoon.  They talked about turning down her bipap breathing machine today to move her to a nasal cannula.  As they turned down the machine, her respiratory rate climbed some. The nurses attempted to suction out some of the junk, but it just made her worse.  Then the respiratory therapist came in and did some breathing treatments and deep suctioning.  She handled it so well.  However afterward she was extremely worked up.  She had a very high heart rate, respiratory rate, and her oxygen levels weren't very stable. However, the RT really got some junk out.  So they placed her back on a higher rate on the bipap machine to get her comfortable again while we try to keep her lungs clear and get some of that junk out. 

So the plan for tonight is to have cardio take another look at her ekgs to see if there is something that someone may have missed as to why her heart rate is still so high.  There can be many reasons for this, one main one being the major surgery she went through and the heart rate being her body's reaction.  They will also continue to monitor all of her blood levels, most importantly the blood gases, lactate, and hemaglobin.  If blood needs to be given it will be, it changes need to be made with her breathing, it will be. 

Overall, we just need to get her back in a comfortable state.  I feel like took 2 steps forward, and then 2 steps backward.  It seems like we were making all of this progress, yet are right back where we started this morning. It's been a roller coaster.  I keep reminding myself that we are only 48 hours post-op.  I don't know why I keep thinking that Macy should just magically start feeling better, and be her normal self.  Maybe it's because I desperately want her to, or I've seen her do it before.  This is a surgery like no other she's ever had before.  We need to take one day at a time. She has a very long road ahead of her.  But she's as tough as they come!

Dear Heavenly Father, please hold my child in your hands, hold her close to you Lord.  Heal her body Lord, and keep her safe.  Lord we need you so much right now.  Macy needs you, Jeremy and I need you, McKenna needs you.  We need you to wrap us in your arms and carry us through this.  You are our Rock!  We will overcome with the mighty power of You! 

Day 4: Macy's Journey with the Rex Shunt

Day 4 just kind of melded together with Day 3 for us.  It was nonstop, and full of emotions.  To be honest with you, days like this scare me.  I spent a majority of my day pacing next to her bed, staring at her monitors, and shaking from an adrenaline rush that seems to last all day long.  I clenched my teeth so bad that when Jeremy and I finally got some food and I attempted to eat, my teeth ached. 

In the last 24 hours, Macy has had 2 ekgs on her heart, 1 echocardiogram, 2 chest xrays, 2 ultrasounds, and 2 extra lines been placed.  She has been started on over 5 new medications.  They believe Macy's body is in an inflammatory state following this long, huge procedure. The first indication was a very high increased heart rate.  She normally has a very low heart rate.  She not only has this low heart rate, but she has had lower blood pressures, and increased work to breath.  They would push in large amounts of fluid, her heart rate would respond to it and drop drastically, and then it would begin it's climb again.  They did this over and over, which as you can imagine caused her to swell.  Her face is so swollen, and she couldn't see out of her eyes today. 

She is on a machine called a bipap that helps her to breath nice breaths in and out.  This is different than a ventilator.  The machine is not breathing for her, however it has forced in and out air to help her take those nice deep breaths that she needs to be taking following such a big abdominal surgery.  Sometimes due to the pain in the stomach, and the additional pain she has from her neck incision, patients breath lighter essentially causing problems.  She spent most of the day in an asleep state, but constantly bothered by the traffic in and out of her room.  She responds to our voices and our questions, but she feels so crappy and tired. On top of the increased heart rate and struggles with breathing, she spiked a fever.  Macy is known to do this following big surgeries, so it did not surprise me.  However, a high fever can make you feel like crap too!

So at this point, Macy is on a blood pressure medication and 2 antibiotics to help with some of the inflammatory and infection type symptoms.  She has had 2 blood transfusions in the last 24 hours as well due to a drop in her hemaglobin levels.  The overnight plan is to watch her numbers closely, especially her hemaglobin, and treat as needed.  Part of the plan is to also let her sleep.  She has been bothered over and over by people coming to do tests that she has had no real sleep at all.  She is exhausted!

The surgical team is very involved in her care, and trying to decided if and when it might be the right time to take her back to the OR to see if they can locate the source of the blood loss.   They can't keep treating her with blood transfusions. 

She was very awake before bed this evening, talking through the giant mask on her face!  She is on some pain meds, so the drugs made her have many different emotions.  She cried when I told her that she couldn't have "Coca-cola vanilla"....."but I like Coca-Cola vanilla so much!" (insert tears).  She asked for apple juice and water over and over.  She would fall asleep and wake up and say "why am I wearing this mask?"  We would turn our heads for a moment, and she was making the bed go up and down with the buttons.  Then she would ask us to position her toward the door, nevermind toward mom and dad, nevermind toward the tv......  Then she would ask to have ice packs placed on her head, or her chest (in which I told her not directly on the skin).  I look over a minute later, and she's ripping off the gown we had laid over her, and placing the packs right on her chest.....with her arms that are full of iv and arterial lines.  She would wait until Jeremy and I would go over to lay down, and then she would start kicking the ice packs off the bed onto the floor.  She would start making the bed go up and down.  It was like babysitting a drunk!  She started resting pretty peacefully around 11:00 p.m.  I had to say, "Macy, mom and dad haven't slept since Tuesday night, we need to sleep."  Yep, I made her cry.  She started crying and saying "I'm so sorry!" Bless her sweet heart!

This girl and the fight she has in her is amazing!  Please pray for an uneventful rest of the night.  Good numbers, blood as needed, and some ideas of where to go from here in the morning when doctors round.  I have a feeling she will be heading back to the OR, and I will let everyone know if she does.  Please continue to pray for Macy.  Pray for her body to start to normalize and accept the changes made.  Please pray for her heart rate to return to a more normal state.  Please pray for the bleed happening inside of her body to stop.  If it can't stop on it's own, please pray that the doctors can successfully located and stop the bleed.  Please pray for the fevers to go away and to not return.  Please do an overall prayer of health and healing for Macy!  Thank you for all of the LOVE!  She can do this!!!!

Day 3: Macy's Journey with the Rex Shunt

Sorry I didn't post yesterday.  Surgery was much longer than anticipated, and the evening was long than I ever imagined. So even though it is Day 4 today, I am writing about Day 3. 

We started our morning bright and early @ 4:55 a.m.  We checked in at pre-op at 6, and met with multiple people from the surgery team.  Dr. Superina obviously came to chat.  He informed us that Plan 1 was the Rex Shunt.  Plan 1?  I thought there was only that plan.  You mean there is a Plan 2?  Yes, and also a Plan 3.  Jeremy and I about fell over.  I didn't like Plan 2 because it didn't repair the liver, it basically just eliminated the chance of any more stomach and esophageal varices.  Plan 3 basically created a shunt that runs from the spleen to the inferior vena cava (bypasses the liver), which is the exact state her body was in when we when she was born. 

They took her at 8:15 a.m.  She smiled as they wheeled her off, and requested that they play Luke Bryan music when she entered the operating room.  Yep, she's a superstar like that!  Jeremy and I were a mess waiting.  Especially because we didn't know what the plan was.  They started in her abdomen because they needed to get a good look at her anatomy.  Macy's anatomy is very different from most people, and actually very different from a kid who is getting the Rex Shunt for a clotted portal vein. Here is why.......she was born with Abernethy Malformation.  Malformation, meaning her liver was underdeveloped and abnormally shaped.  This we knew.  In 2016, he routed blood to her liver by closing off the shunt her body had created.  This surgery allowed her liver to grow larger, and develop robust portal veins inside.  Yay!  However, she didn't have one definite portal vein outside of the liver carrying blood to it.  This is not ideal. 

So when he got in there, he discovered many things.  1.  Her liver is very abnormally shaped.  2.  Her veins in and around the liver at all very different too.  3.  She had a lot of scar tissue from her 2016 surgery.  He had to first figure out her anatomy to see if he could even do the Rex.  He figured out a way.  Then, he had to clear away all of the scar tissue, and anything that would compete with the Rex. 

By 12:20 p.m., he was still working in the abdomen and still trying to decide about the Rex Shunt.  Once he decided that he was going to do it, he then needed to make the incision on the neck.  This didn't even start until after 2:00 p.m.  Around 4:00, we were updated again that he was back in the abdomen working to attached the vessel correctly.  Surgery ended 9 hours after it started.  The surgery was a success!  She had the Rex Shunt put in place, and blood was flowing through it.  I might add, that he has done many Rex Shunts on a typical Rex Shunt kid, but only a handful of times on an Abernethy kid.  He was actually the first surgeon in North America to do this surgery, and teaches people about it all over the world.  He was in Paris last week.

Yesterday felt like the longest day of my life.  Little did I know, the long day was just beginning. 

They just kept pushing back our time to go see Macy in the ICU.  We didn't see her until almost 6:30 p.m. She was not settling in well.  High heart rate, and struggling after being extubated.  I know I am going to get a lot to wagging fingers at me, but Jeremy and I never ate all day, and it is Thursday afternoon now, and we still have not slept. I can't eat or sleep when I am worried about her.  I actually get nauseous.  Jeremy and I are completely drained. 

I will give more details later about what happened overnight and has been happening today.  In short, Macy is still struggling.  You would not even recognize her to be honest.  We believe she is bleeding internally from the surgery.  Usually you stop bleeding following procedures on your own, however, she is on a blood thinner to keep the shunt open.  So it benefits the shunt, but isn't allowing her body to properly heal.  They are giving some meds, blood transfusions as needed, many labs, and doing another ultrasound at 4:00 p.m. today.  The ultrasound this morning showed an open Rex Shunt.  Yay!  Then a decision needs to be made about our next step.  Can they continue to treat her with meds, blood, etc?  Or does she need to go back to the OR?  Please pray for some clear answers that do what is best for Macy.  Please pray for her healing!  Please pray for me and Jeremy, we are really struggling. 

Thank you for continuing to follow us, and giving so many words of encouragement and prayers!