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

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