Wednesday, May 29, 2019


     We finally made it home at 0300 yesterday. We were exhausted but home. We spent the day sleeping, napping, doing laundry, seeing grandparents and just enjoying time together.  We have a followup appt on Monday with cardiology here to get the all clear to resume more normal activities.

Monday, May 27, 2019

Today is not our day

     We were so pumped to be able to fly out today that we were up early finishing all of our last minute rmh prep. We were making our last minute decisions about when to leave for the airport when we got the dreaded email. Our flight on Spirit was delayed from 2pm to 4pm. We slowed down our pace of packing until we got another email stating the flight was delayed until 8:56pm. At that point, we had to extend our rental car return and look for other options if there were any. Southwest was the only other airline with any flight into Nola tonight and it was $515 per person. Frontier had a flight that left at 6pm and arrived in pensacola at 9pm and we could easily rent a car and drive the rest of the way. We decided that was our second best option and we would book it if the Spirit flight was delayed any later. I was anxious to just sit at the rmh which is 30 mins away from the airport so Brett humored me and we went to sit in the cell phone lot. This way, Livi could nap and we wouldn't be far away if the situation changed. The situation changed again and the Spirit flight was pushed back to 11:57pm with an arrival time of 0115. We decided Frontier was our best bet so we hightailed it to the rental return and to buy tickets and check in. As soon as we checked our bags, Brett asked the dreaded question.... Is the flight delayed? Only about 20 mins was the response so we proceeded through TSA. As soon as we got to the nearest screen, the delayed signal popped up and we saw the dreaded 7:30pm flight departure. Then it changed again to 8:45pm. This means that we would get to FL even later with a 3 hour drive ahead of us. Brett quickly realized that the rental car place closed at 11pm and we were set to land at 10:53pm....too close for comfort. He is determined to get us home much to my disagreement that one night in a hotel in either Philly or FL isn't that big of a deal. So now we sit while Brett watches his phone for delayed alerts and we try to have Livi rest.

   She is great in the morning, but as the day goes by, she quickly turns into Oscar the grouch. The closer and closer it gets to bed time, the more pain that tends to creep up as well. The last two nights she has cried herself to sleep because she just can't get any relief. She has been doing extremely well so far today but the warning signs are slowly showing themselves. She truly wants to get home and see her brother and sister whom she has missed desperately. I know the anticipation and adrenaline will only last so long. Hopefully, we have things shift in our direction once today and we can finally get out of Philly.

Sunday, May 26, 2019

Discharged to stay close

    We were given the go ahead to be discharged. Olivia even said she would dance for discharge.... It was an interreptive dance....but it was a dance. Since she spiked a fever Friday night, we have to stay close for a few days to make sure her blood cultures are normal and that she doesn't spike again. We are getting used to not so many monitors and watchful eyes which always sends my mom worry into overdrive. Hoping for an uneventful few days medically and to slowly get our independent sweet girl back.

Chilling in philly

    Since Olivia had fever Friday night, the plan was for us to be discharged Saturday but stay in the area for pain control and to make sure she didn't spike again. Once discharged, we all settled into the Ronald McDonald house in New Jersey but also wanted to pass the time. They had a showing of the Pets 2 movie and we thought sitting wouldn't be a big deal. Olivia enjoyed the movie and loved to tell Delilah all about it. Yesterday and today has been a learning curve for Brett and I. Until yesterday, we never really thought about how much and how blessed we were that Olivia was able to do so much. Since discharge she has been limited. She can't run, jump, ride on bumpy roads, sit for longs periods, lay down for too long, carry anything heavy, walk long distances or get bumped by a person or bag. We have also learned that at 7 it is extremely hard to manage her pain. She waits until the pain is excruciating before saying anything which means we are playing catch up. We have also learned that we have to be very specific about exactly what to expect. Today, she randomly asked us to promise no more lies. When we probed further, she said.... Yall lied to me about coming up here and just seeing the doctors. We tried to explain that we told her about what we knew about but that sometimes things change. I don't think she really bought it. We have found a local circus for today's activities.

Saturday, May 25, 2019

Lymphatic Intervention for Plastic Bronchitis Improves Outcomes in Patients with Congenital Heart Disease

Here's a cool study they released on some of the early lymph angiograms they have done.  This is the procedure Olivia had. 

Olivia feeling better this morning, and ready to go.

She says her belly pain is getting better, but her back pain still hurts.  Melanie and Olivia took 2 laps around the unit today and she looking more upright as she did it.  She keeps talking about going to the ronald mcdonald house and getting out of here.  She said I'm not in pain anymore, just my head and my back hurt, and my stomach some.  Hopefully today will be good!  I'll update you guys tonight. 

The best part about hospital life is getting fed like you are a baby.  Without a ton of will to eat, we are helping her along.   

All clear so far

I came in from the Ronald McDonald house this morning and luckily the resident came in right after me.  He told us that all the labs, and tests came back negative and clear.  There is nothing out of the ordinary.  Perhaps all the walking around and returning to normal is working itself out through a fever.  The back pain could be from laying on a flat MRI table for a hour.  They said you can expect fever up to 5 days post-op. 

We are waiting for rounds sometime around 10am or so to occur.  Then we will hopefully have a better picture of what moving forward will be like.  The resident this morning asked me my thoughts on going home with belly pain of a 5 or 6 out of 10.  I told him i'd have to run it by my nurse wife when she wakes up (from the uncomfortable couch bed) but I mentioned that we intended to stay 2 days locally at the Ronald McDonald house before jetting back home.  It makes me think we might get discharged soon with those kinds of questions.  Of course, we'd have to have a protocol for how to manage it, and when to come back./

I'm probably not explaining it correctly, but with the lymph system being one of the bodies junk movers (fat, and waste) as it returns to normal, it too is figuring out its new normal.  Dr. Dori separated the lymphatic system into the top half of her body and the body half of her body.  Now that the bottom can't flow into the top things are settling out and pooling in her lymphatic system as it learns the new normal.  A good bit of this can go to the stomach, and the body reacts to it kind of like an infection and that is why fevers can occur.  In the upper half of her lymphatic system there is all sorts of weirdness from her special lymphatic network.  Dr. Dori glued a good bit of the bad areas to prevent the upper half of her system from pooling into the lungs. 

I finally have time to post this, but we got to capture some images from Olivia's MRI. It is some interesting stuff, and very confusing at the same time.  When you look at this image you should notice how the lymph system looks below the green line.  This is where it is nice and lined without any leakage.  If you look at the top half you can see where things are leaking as it gets cloudy, instead of clean lines.  The contrast just kind of comes out and spreads around, if it was contained in the lymphatic network it would not do this.  At the top right is where her thoracic duct is support to connect to the inominate vein in the neck, but she does not make that connection.  Instead the lymph just kind of pools at that top right spot and leaks back into the lungs.  He placed a lot of glue in the upper half network to try to close some things off. Medical science doesn't know  a lot on the intricacies of the lymphatic system, but somehow the body will work around the glued portions and still find a way to perform the duties a lymphatic system should.  Hopefully we only need this procedure once, but sometimes you might need it a second or third time.  Dr. Dori did feel like he got it all, but unlike with a heart catheterization they don't go back and double check.  It would be too hard on the body to check after it is done. 

I also now have time to post and was able to make the last 2 or 3 blog posts.  I backdated them.  I apologize for not keeping you guys updated.  We do really appreciate all the thoughts, prayers, love and support.  Olivia knows she is loved back at home.  We have had several tears over missing her brother and sister, and she is definitely done with being here.  However, all the facetime's we have done and all the help back at home is making things bearable.  We can't thank everyone enough! 

Freaking out over some fever with a pizza

Staying on a keto diet with all these stressors suck for maintaining a diet.  We've had a rough evening and in dealing with all that the cafeteria closed at 7:30.  At 8pm after the past hour or two of stress, I said pizza tonight!  We got pizza delivered to the hospital and it was good to sink our stress into some really good crust.

At about 7pm, after such an awesome day, out of nowhere Olivia felt hot to Melanie.  This led her to check her temp and she was running at 102.4 fever from out of nowhere.  She also was complaining of mid back pain on the right side and middle.  She's crying and is in more pain.  Our parent alarms are going off, we are freaking out in our heads.  We went from recovery thinking discharge to who knows what is going on pit of stomach burning stress and sadness.  Since she was doing so good they were hoping it was just from the long day.

Just in case, they ran labs,  blood cultures, x-ray, and belly ultrasound.  She switched from IV meds today to Oxy without tylenol in it.  This med is oral, so we also started some zantac.  I think the Oxy really helped to mask the pain she was feeling from the long day.  She was kind of funny on her Oxy high's.  She'd be chatty and happy and all that.  That's why we were feeling so optimistic about being discharged Saturday because of he well the pain was being managed and such.  It wasn't until her Oxy started wearing off that everything revealed itself. 

I waited until 11pm, but finally Melanie and I decided to go to sleep, since they didn't come and tell us any result.  At least we had some good pizza!  It's tough to go to sleep with these unknowns. 

Friday, May 24, 2019

Working on moving and eating

Today Olivia has been working on getting her body going again.  We make her walk every other hour to help get her lungs clear and bowels moving.  We are trying to get her to drink 60oz today, she only had 40oz yesterday.  She constantly has a gatorade in her face, anything to prevent getting on IV fluids.  She's peeing good, but the bowel movements are just diarrhea for now.  She isn't all about eating yet, but I think we have gotten enough in her to be in the clear for a ileus! 

The one pitfall is that she is on a low-fat diet for a few weeks.  The lymphatic system is full of all the nasty stuff in your body, like fat cells and other waste.  If you eat less fat you theoretically take a lot of the work from the lymphatic system and you allow it to rest.  We've been doing a keto diet at home, so we have been all about fat, so it took us a bit to do some research and try to figure out some fat free things she can eat. 

Mac and cheese is not, but easy mac is.  Chocolate is not, but twizzlers and some other candies are.  We will definitely be getting a list for our candy monster.  We just need her to be a normal girl eating a few good meals a day, and drinking 60oz or more.

Her belly pain is still there.  They stuck 6 needles in her belly, and she has some scabs to prove it.  We get into this grey area trying to figure out exactly what is causing her belly pain at this point.  It can be a number of things, you got 6 needles in your belly, their instruments hit organs, pushing and bruising the belly, bowels starting again, gas pains hitting all that, or bladder full hitting all that.  We make her walk but she looks like a little old lady hunched over doing her walk every time.  Only once so far we got her socks and shoes on, got her in regular clothes and she was upright; that was the morning.  I think as the day goes on it gets worse.  Bottom line is there is this moving target that is her pain.  They say the lymph system being cut in half like it was can cause things to fill up the lymph system and cause it to go to the belly.  Just reading this paragraph should help you see the confusion and thought process we go through on whether to push her or not. 

As you've read before we are big believers in partaking in all the research studies that they offer to Olivia.  We hope that taking part will help others, and they will return the favor.  Eventually, the more research that is done might circle around and help Olivia; just like this lymphatic procedure she had.  While she is feeling this pain, Olivia sucked it up and finished up her neuro-developmental study by having her brain MRI done.  They were supposed to do it during the lymphatic procedure but the MRI team said they couldn't do it because they would have had to utilize another MRI room and they couldn't move her that much.  This brave lady took her IV pain medication at 10:30, and then did the MRI study for an hour which finished up around 1, so her pain med had worn off.  She laid there like a champ with Melanie talking to her from a chair across the room.  It wasn't until the last 3 minutes she cried and said she had to get out of there. 

After that she took a nap and at 2:30 it was time to go finish up her FDA nebulized t-PA study for plastic bronchitis.  With her condition being rare she is the 4th person in 2 years to meet the criteria for the study, and getting this useful medication FDA approved.  We only had to answer a few questions and then she had to go do a pulmonary function test to finish up the study.  She had to pretend to blow out birthday candles into a tube connected to a machine called the body box.  One study gave her a $50 gift card and the other $100.  She is taking her gift cards and whenever we get discharged she is going to the American Girl doll store and she's going to blow it all!  We can't wait to post some pictures of that adventure.  We don't have a American Girl store at home, they are pretty interesting stores from what we have heard. 

As soon as she got back child life came by and invited her to go to music therapy.  Olivia was gung-ho so we went and she loved it so much. She got to play a xylophone, and a keyboard.  The music therapist taught her to play Mary Had a Little Lamb.  Olivia sat upright for an hour loving every second.   She accomplished a lot today and we definitely hit our goals of moving around!

Thursday, May 23, 2019

Day of frustration

    So we are all getting frustrated with the pain and discomfort of a hospital stay. Olivia displayed her distaste for the events of today by pretty much refusing to talk or answer questions. She just stares into space or straight at you and says nothing. Is she capable of talking? Absolutely! She is just using speech or lack there of as her way to make us jump through hoops. Brett has shown his frustration with the state of events by asking every doctor who walks in the same questions, over and over again. And I have had to walk out of the room at times when I just can't take the four walls and lack of motivation from Livi.

   Today was what we expected. We had alot of things we were pushing her to do.... Eat, drink, move, rate pain. She had other plans. The day started with her having a tummy ache and a small amount of vomiting. She needed nubain for pain breakthrough because she just couldn't do it on tylenol alone. She did go to the play room, walk a flight of stairs, complete a speech eval, and walk a few laps around the unit. She didn't quite hit the 67 ounces of fluid they wanted her to drink (max we got to was 40 before bed). She did humor us and take a few bites of food for dinner which perked her up for a little while but then got her tummy hurting.

    When the doctors rounded they mentioned discharge in a "few days". Anyone who has been in the hospital with a kid knows that is a moving target. It could be tomorrow or Saturday or as late at Sunday. The cardiologist on service (Levenson) has been great. She did advise us to take it easy for a couple of days post discharge before hoping on a plane to home. One of the big things for this procedure is a post-op low fat diet. One of the main things the lymphatic system carries is fat throughout the body. The more fat intake the more active the system. We saw this when Olivia was a baby and had a chylus effusion post Glenn and she had to be on low fat formula. The recommendation is for a low fat diet for two weeks. If it is not followed closely, patients post this procedure can experience extremely swollen bellies and more pain in the abdomen from the extra lymph fluid which could require needing to be hospitalized. We saw a dietician today to review low fat diet options and it will be a change in thinking for Brett and I. The keto diet we are on is high fat and high protein so it is trying to retrain your brain overnight. We are hoping for a day of smiles tomorrow with maybe even a chance for giggles as we really are trying to get our sweet girl happy again.

Wednesday, May 22, 2019

CHOP prom

Olivia was probably feeling pretty crappy but she sucked it up and said she would go to the prom event.  She couldn't put on the dress because she was hurting some.  We rolled down to the prom with a few other patients from our floor.  It was interesting because we had a wheel chair for Olivia, a IV pole and a rolling monitor.  It took the nurse, melanie and I to roll her in.

The prom was kind of tight quarters for all the wheelchairs that they had coming in.  However, they had all sorts of food (that Olivia couldn't eat), and a big ice cream sundae bar.  They had a nice cake, and decorations, event mylar baloon chandelier looking things.  The DJ was rocking, and they had people dancing.  It was very interesting.  I think we were a few days out from being able to really enjoy it.  Olivia was a trooper, she went and we got our 10 minute fill from the prom.  It was our nurse's first time at the prom, so at least we got our nurse to it.

There was a news station filming as the kids came down the red carpet.  Olivia probably did not make the news with her sad look, but it was great seeing all the volunteers for the event; including our stylist who did a great job with her hair.

The greatest thing about the prom was no matter how bad she was feeling that day, child life and the volunteers managed to bring the first real smile to her face on a tough day.  We can't thank the child life team and CHOP enough for having these opportunities.


Getting excited about tonight

Olivia is definitely not feeling the greatest.  Her belly feels like it has been beaten up and very sore from all the poking and prodding around it.  Since we have moved to the CCU we have accomplished a lot.  The biggest accomplishment is she has not thrown up yet today.  However, she is getting feisty she told Melanie "why did you bring me here they only made me worse, not better!"

She has drank about 12oz of Propel flavored water.  An hour ago she took 2 bites of cracker and has kept it all down! 

She likes that her mommy can braid her hair so she can have it all crimpy the next day:

Why is Olivia excited about tonight?  Well tonight is the annual CHOP Prom.  They bring in 10 or so hair stylists to do hair, makeup, and nails.  They go all over the hospital getting all of the little ladies and some of the moms ready for a night out.  Olivia's doctor has cleared her to go to the prom in a wheel chair, because she can't really stand that long.  We finally got a real true big smile out of her.  The child life department puts it on.  Olivia has 2 dresses to choose from that they gave us for tonight.  

The Occupational therapist then came and got her up to brush her teeth, practice stepping in and out of the bath tub, and made a 30 yard walk to the child life teen room.  In there was the stylist for the cardiac unit.  Olivia got her hair curled and a streak of blue.  


Melanie said she scoped out some more prom details, and supposedly they have  a red carpet for the girls to show up and walk down, and then a nice catered event with a dance floor and a DJ.  Since she is cleared to wheel down, hopefully we will have some pictures.  

On a crappy feeling day for Olivia this has really brightened it for her, and motivated her to get some more time on her feet.  The nurse says she hears good bowel sounds, and no throw-up all day might mean she might not have as long as a recovery road.  We shall see!  We heard in rounds that she can slowly begin a low-fat diet, I know our candy monster won't be happy with those limitations.  


     So the mission for today was to get moving. We wanted to get moved out of cicu so we had to physically get moving. Olivia was able to get up and move to a chair where she sat for 15 minute intervals twice as well as walk to the bathroom. She was really hurting after all of that she they had to give her some breakthrough medicine. Within 20 minutes, we were moved to the ccu in a wheelchair. To say she is miserable is an understatement. We were present for rounds in the cicu where they discussed her numbers and the technical stuff. We have some issues that we need to figure out Respiratory wise that hadn't been discussed prior after the Bronchoscopy from yesterday. What was nice to see though.... Was when we moved to the ccu the same doctor who saw Olivia on Saturday and Sunday is still on service. She walked into the room and immediately said.... Ooo swollen much? It wasn't the 3 liters in the computer that gave it away, but one look at her face. Her face and toes along with her belly are quite puffy. They are going to discuss, but may give her some Lasix to help reduce some of the puffiness. We are hopeful to keep up the fuild March and move onto crackers tomorrow.

Not bad night

She slept most of the night. She kept complaining of her foot hurting a few times and we finally figured out it was some allergy bracelets they had on her ankle.  

She woke up at 12:30am and she had to go to the bathroom.  She didn't want to be pan it.  The nurse orchestrated a monumental walk to the bathroom.  She ordered a commode but waiting for it wasn't an option.  We sat her up on side of bed and she spit up the last little bit of popsicle she had from earlier. Then after the initial dizziness past from her first time really sitting up we gathered everything and made the journey.  She walked good and we even got some good pee out.  We walked back and the nurse said she did great and that was all the walking she would do for tonight.  

 I listened to rounds and the nurse said there was a little blood in the throw up she just had. I reminded them that  it could have been the red popsicle. Which made me think that there aren't too many popsicle colors you'd want on a CICU unit.  You definitely wouldn't want blue and red is bad.  Orange could be blood looking.  A clear popsicle would make sense but would a kid eat a clear one?  The color gives it its flavor, am I right?

2:30am she woke up again and just needed to cough.  She drew the labs for the morning through her art line. 

5am she was complaining about her art line hurting.  Since they drew the labs already the doctor approved removing it.  There is a crazy amount of tape involved with an art line so it wasn't pleasant. It also looked like they stuck her 4 or 5 times to get it, poor lady.  She felt a lot better once it came off Now we just have an IV in each hand remaining.  I'm a little concerned with her cough or maybe it's dry heave here and there.  Either way it sounds like it is getting junkie.  Once nurse Melanie arrives for the morning shift maybe we could do some chest PT or whatever it is called.  Basically you beat on their back to help things break up and loosen to help the cough.  

Besides all the beeping we've been trying to sleep.  Back to bed for me.  I just worry about missing her calling out for me or something.  

Tuesday, May 21, 2019

Just the beginning on the belly recovery

I know I said a lot of jell-o tonight, but I was very wrong.  We were able to hold down 3 ice chips, and then we tried a teaspoon of propel.  Then 15 minutes later it all came up.  Then an hour later she was begging for something, so the nurse gave her a few pieces of popsicle.  She held that down for about an hour and a half.  She popped up out of a deep sleep and threw it up.  The nurse has been telling Melanie that it is going to be a rough day tomorrow as we get past these stomach issues.  Her bowels slowed down from all the anesthesia and the lymph fluid that might have gotten out into her body.  If this is all we have to deal with it should be a quicker recovery.  My goal is discharged Thursday afternoon, but a nurse or two has told Melanie through the weekend.  We shall see.

We got in to the Ronald McDonald house in Camden, NJ and Melanie has been getting a little bit of sleep there.  Tomorrow will be my turn, I had to sort of make-up for the 3 nights she was here without any help.  It is great to have a bonus nurse on your recovery team, Melanie the mama nurse that's a real nurse.

This is the first forced smile we got, and then she went back to sleep. 

Recovery is going

We finally got into the cicu to see her and she was not intubated.  She needs to lay still for 4 hours which is about to end at 7pm.  She wakes up all teary but we get her back to sleep.  Her legs have to stay still as well. She is super hungry and thirsty but she is going to have a lot of belly issues as she recovers. If she does too much too fast she might be throwing up a good bit.  At 7 we will start some ice chips and build to clear fluids and so on and so forth.  Lots of Jell-O tonight possibly.  

Finally done

We were pulled back into the consult room and anxiously awaited for Dr. Dori to come and meet with us. When he came in, he was serious but you could tell there was a sigh of relief. So the breakdown of what they found.....

1. There is a narrow portion of her left pulmonary artery that in the future will need to be stented (opened) to reduce the pressure in the area and increase blood flow.
2. Her lymphatic system is special just like she is. When they were doing the imaging, they saw that Olivia's main lymphatic channel ended at her thoracic Duct in a stump instead of going up to her neck. It has always been this way and her body has made it work. It was when we went and closed the opening to her heart in 12/17 through her repair that it made the pressure worse and ended us up here.
3. Since the lymph system had nowhere to go, it went the easiest way possible - to her left lung - then across to her right one. They went in and glued the channel closed which made the numbers go from 60 to 35. Olivia has always been a loud breather with lots of coughs and croups. When they lite up the lymph fluid.... It surrounded her main breathing tube showing how much pressure there was before gluing it shut. We hope this will help her not breathe so loud.
4. There were no channels from her liver to her duodenum indicating ple (not good complication).

Heading to see her now

She is done heading to cicu waiting on doctor

We are waiting to hear from Dr. Dori on how it all went. She is heading to the cicu.  As soon as we hear from him we’ll update again. Just waiting in a consult room to talk.

Update 5

they aren’t giving us a lot of details on these updates as you can see. Right now they are gluing some leaks. So that means she had more than one leak.  We are just kind of stewing here wondering what each update really means.  They are still smiling when they give us updates so that’s a plus.

Hopefully the next update is everything is done.  It sucks when they tell you all these possibilities for the procedure and then they don’t say option 1 is occurring or option 3 is what was really going on.  I guess that would be giving too much away and worry us more than they would want to before everything is done.  We’ll just keep sitting hoping for smiling updates.

Update 4

They have just updated us....

   Cardiac cath done
   Getting lymph fluid and pictures now
   Will plan for some gluing but hasn't started yet.

Another update to come.

Update 3

The charge nurse just came....

Back in cath lab
Adding arterial line and another iv
Haven't started any intervention yet

Another update in an hour.

Update 2

10 am update......
       Bronchoscopy done
       Lymph access done
       Moving to Mri now to start contrast

Next update as soon as we get one.

Update 1

This morning they rolled her back exactly at 8am Et. I love when medical professionals are prompt, which all of my staff can attest to, but today, I sure could have used just a few extra minutes. We all got a little weepy because Olivia made sure to repeat just how scared she was this morning over and over again. It is really hard to stay stone cold when she looks at you with big tears in those baby blues. She was a trooper though and put on a brave face when they rolled her off after her pre-med. Our first update was at 9am.... She was under anesthesia and they were waiting on pulmonology to complete her bronch. We also spoke with Dr. Dori who reassured us and made sure we had no questions. The plan is for hourly updates as long as she is in the procedure which just for the lymph portion could take 6-8 hours. It is going to be a long day..... Now we wait

Monday, May 20, 2019

It got real today

Melanie apparently had an idea of what all this would entail.  While I had no idea. I had read a lot and thought I knew but I didn’t.  I was just thinking it would be just like a cath but a little fancier which I could process and be fine with.   I’m now scared like i was for her last open heart surgery.  This will be the longest Olivia has been under general anesthesia. It could Be  over 7 hours. She could come out intubated, which would be a first. Except for her norwood , she came back intubated from that.  There is also a possibility we will find out if she is predisposed for PLE, the other monster in the scary complication closet.

Tomorrow is a big day and we are both scared like it’s open heart surgery.  What’s worse is Olivia is just as scared and we can’t tell her we are too.  She is the bravest girl I know but please please let everything go good tomorrow.
       This afternoon all of the specialist came in to get consents and go over their procedures. Tomorrow Olivia will be having the following: Mri of her brain, Bronchoscopy, lymphangiogram and Mri and cardiac cath. The nurse practitioner who works with Dr. Dori gave me the above diagram when she explained the total procedure. I'll try my best to rely the message.
      So tomorrow at 8am ET, they will access three sites to get to Olivia's lymphatic system. Two areas are in her groin area and one is in her liver. They will inject contrast into these sites and track where it goes from there. Ideally, it should travel up through the cistern chyli all the way to her neck by the innominate vein within the contained green line. If she has lymph leakage, the contrast would then leak out and create a cloud like appearance in her chest. Best case scenario would be they see larger sized vessels of lymph that they could go in and coil off by her lungs. Worst case would be that there is diffuse vessels that are too small to coil. This would mean that they would then access her lymphatic system by the cistern chyli and use "super glue" to close off all flow upward from her lower extremities. This would cause her to have lymph fluid that would pool in her belly and then have to be absorbed from there. They went over what to expect and the list of complications is quite long. They include: ascites, perforated bowel, ileus, pain, high fever, trouble managing BP, bleeding and bruising.
      Anes came to discuss Olivia's history and forewarned us that this procedure can be extremely long. Brett was here for some of his description and it was not for the faint of heart. Depending on how long the procedure is and how much her airway tolerates, they may or may not extubate her right away. She will be on antibiotics for at least 24 hours with close blood pressure control in the cicu. She will have an arterial line for lab collects and BP monitoring along with a Foley catheter because she is potty trained.
     They did explain that due to the increased pressure in her belly from this procedure they may look at her liver to also make sure she doesn't have any signs of ple during this procedure which we would then discuss what to do with the doctor.
     Tonight, we are focusing on taking it one hurdle at a time. Olivia has to have an Iv started with a type and screen drawn tonight. She has to remain npo after 10pm. She doesn't understand the weight of tomorrow which we are very lucky for at this point because Brett and I have enough worrying to do. Brett is getting her dinner (McDonald's) per her request and she just finished an appetizer of a popsicle.

We will do our best to keep everyone up to date on all the info we can.

Lounging and tPA

     Once we got into the routine of hospital life, it resulted in Olivia getting a bit lazy. All she has wanted to do was play on the iPad, watch cartoons or eat snacks. I could tell her stamina was quickly draining.... So yesterday we got up and got moving. We did 6 laps around the 6th floor before I would let her rest. Today, Olivia has been busy with pulmonary function tests and neuro developmental testing. She got a quick lunch break where all she did was bounce and chew and talk about all of the stuff she knew. We still have a cardiac echo in our future today and more tpa treatments until tomorrow. After each treatment she will cough and say.... Something is right there tickling my throat but has yet to cough out a good cast. We are hoping for an early procedure time tomorrow and for daddy to arrive safe and sound today.

Friday, May 17, 2019

Here safe and sound

     We left bright and early this morning for our new adventure. We arrived safe and sound and Olivia is loving the hotel room. She is enjoying it so much she just wants to  "hang out and chill". We did make it to our appt this afternoon where they did a preliminary evaluation and we signed paperwork. We then walked back to the hotel just in time for the rain to start. Lucky for us, there is a pizza place right across the street and that is what she wanted for dinner. It wasn't the best, but according to her.... it hit the spot. Now she is enjoying a bubble bath and looking forward to watching wonder park. We have to be at the hospital between 9-10am tomorrow to check in. I don't think she will be wanting to "hang out and chill" then, but we shall see. Overall, she has been taking all of this in stride.