Monday in the early morning after X-Rays Shaela got her last tube pulled! She was so worried and scared knowing that it was a pigtail tube. However that pigtail tube was causing so much pain because it was hitting a nerve. When it was pulled she had immediate relief from the pain it was causing. So the pulling of it was not as bad as she anticipated! After that I left for home and Shane headed to the hospital to hang with Shaela while I played with the other 3 kiddos.
Beau just being a cutie
Cuddling with me
Tackling me
While I was home playing with the kids the Cheer team (Millcreek Junior High) came and visited
Shaela. What an amazing group of girls they are to do that. It sure made her week! Shane said they were all super fun and showed what a team is all about by showing their support and love.
MJH Cheer Team
What a Team
She had a wonderful day with lots of walking around and her and I stayed up until midnight laughing so hard she hurt and my sides hurt. We also watched a Ton of Gilmore Girls.
The next morning (Tuesday) brought the best news ever!!! Home Bound!!! After pulling the last iv, learning more about her fat free diet and signing all the release papers we packed up a wagon and headed out.
Returning our entrance key card
Last photo in the hospital for this visit!
Of course we decided to make a pit stop on the way home to pick up the Veronica Mars tv series at
Top Hat to watch together while she is down.
Videos...
And later last night after all kids are down she and I decided to go shopping for Fat Free items for her to eat...
Shaela always keeps me laughing
I am so proud of this girl and her strength. She rocked this last surgery. Her energy isn't back to 100% but this girl came home needing only Motrin and Tylenol for pain! She is one tough cookie! She is coughing a lot which makes her sound sick but really it is great for her lungs.
This morning started out at 4:00am with routine X-Ray's. They turned out to show improvement.
She rode the wheelchair so sat for X-Ray's
Lungs look better
The two remaining of the three chest tubes in the center.
This morning she was told she would get those center tubes out. She was so nervous and scared. They gave her some meds to calm her and for pain. She did amazing while they were removed.
No more tubes in the center only side pigtail tube left
The refillable ice packs don't get cold enough so we figured out a new way for a cold pack....iced gloves
Playing with Shaela's new selfie stick given to her by her grandma Jolene
Shaela and I decided to break free and go for a walk! We hit the Ronald McDonald room
She is now up for Visits!!! Please remember that if you have ANY cold symptoms or have had a cold in the last few days to please visit at another time. Her room number is 3083
The day started out where I left off with getting X-Rays done at 4:00am. Because everyone knows rest at the hospital doesn't really mean rest ;) when they pulled up the X-Ray I could see how cloudy her Left lung was but I second guessed myself and told myself I was imagining the worse. (Sadly, I wasn't) I was pushing her to cough, do the spirometer and walk when Ocupational and physical therapy showed up. Also the Tech that she had today was AMAZING! I really liked how forward but kind she was with Shaela as well as not treat me like I had no clue about my own daughter or this type or recovery.
Shaela with her therapist on her first big walk hoping this would clear her lungs more
We layed in bed watching Gilmore Girls waiting for doctors to come around on rounds.
Here we are watching Gilmore Girls
Later when the doctors did rounds they informed Shaela that the Chylothorax had gotten worse and that she had water filled in and around her lungs. She was NOT happy to hear that she will need to get more chest tubes. The ones she has are not draining enough.
The Cardiologist informing her that she will need to go back in for another procedure to add more of the way painful tubes into her chest/lungs
For sure a few more days here at least! The surgeon had said if they couldn't get her into lab to do them he would stick her back into CICU and do them bedside because he wanted them done today! She had an iv that had quit working (and yes, I mom caught it before the nurses) and I talked them into waiting to take out the bad iv and putting a new backup one in (she still has a working iv) while she is asleep so she doesn't have to stress about any pokes. The other thing they said, was that she would be getting out two of the three big chest tubes. They would be putting in pigtail tubes (which actually hurts worse to come out because they run through all that muscle in the rib cage, but I am not going to tell her that!!!) The procedure was scheduled for 3:00. She went back around 3:40. We had a great time going back. Since I was already laying on the bed the nurse practitioner decided I should ride down with her.
Here we are riding down in the bed together. I have video of it. The Tech on the left was an amazing lady and the one on the right was the Nurse Practitioner
Getting settled in the lab.
Lab Rat ;) He also was awesome with Shaela
When they got all said and done with Shaela they had drained 900cc's (3.8 cups) of liquid and had to stop because they didn't want her body to go into shock. They only took one large tube out on the left side and replaced it with a pigtail. She was pretty upset about that because the big ones really hurt to move around.
When she was coming out of the sedation and on the cocktail of meds she was SUPER sweet and super FUNNY!
Here are a few things she said.....
***She had mentioned she needed to pee but she was to drugged up to be able to stand up and walk so they mentioned using a Bed Pan and her replies were
"Don't cook my butt, I don't want a bacon butt" (she thought we meant a cooking pan)
***"Guppies are eating my toes"
***While I was teaching the nurses that you don't have to rip off the Tegaderm, but that it works better to come off if you stretch and pull it off she said "Please don't stretch me out" ***The nurse leaned over to help Shaela and while she was doing that she laid across Shaela's stuffed owl given to her by the super nice Tech to help her coughing easier which she had named "Bubbles, and Shaela said "I don't want you to pop Bubbles" well the nurse took it as the liquid bubbles and was trying to tell her how fun it is to pop 'Bubbles' which sent Shaela into a worried state.. It was pretty funny when the nurse figured out they were talking about two different 'Bubbles'
***I pulled the ice packs out from beneath her shoulders and she said "How long have I had Christmas earplugs in?"
Her Christmas earplugs
The pain level has been excruciating for her today and she had a really hard time relaxing through the night. I played the tabernacle choirs song 'I Need the Every Hour'
Shaela got a new room for her Birthday!! Before one more person asks "why did you schedule her surgery around her birthday" let me explain. She wanted to tryout for the cheer team at her junior high and if she made it, there were certain clinics/practices that she needed to be to. We had two surgery dates scheduled one for the end of April if she didn't make it and one for May 17 (two days before her Birthday) if she did make the team. Well she DID make it. So the May one was the one she took. This way she was able to attend all the clinics/practices needed before surgery and should be completely healed up by the time they start up again in late July.
She has been very nauseous but she also hasn't eaten anything in 3 days with no nutrients going in through iv either.
Moving out yesterday (that's a lot of tubes)
One of her favorite things is sea horses. So it was pretty cool when we saw that is what's on her name plaque
I put up some crepe paper as well as her Birthday poster made by Child Life and hung up her balloons to make her place a bit more festive and cozy
Shane, Bridget & Regan came to wish her a happy birthday and give her gifts (grandma Jolene watched the babies)
Some beautiful flowers Shaela received we got creative and made the water pitcher into a vase and then stuck them on the wall.
She had to wake up at 4:00am to go for chest X-ray and blood draws will be as soon as the iv team gets up here.
I'd like to thank everyone for the kind words, thoughts, prayers and gifts!
So many of you offered or dropped off the treats she was craving. We will see what the new day brings...
Today Shane is juggling babies, Regan has a Field Trip that she gets to take a lunch and is super excited for and Bridget will soon find out if she made the play she tried out for. I on the other hand may go home, shower and kiss my little ones while Shane sits with Shaela a bit later.
Well this morning she did not feel real good but guessing that is mainly from all the pain meds. They want her to start eating but she has no appetite. They want to see if/when she starts to eat fats whether or not her Lymph liquid is clear or not. If it is not then she will be put on to a fat free diet. Child Life came and gave me some stuff to decorate her room with. They have taken a few lines out which always feels like you have a bit more freedom. She wants buttered Corn Flakes or Muddy Buddies and of course they don't have those here. I will have to get creative.
Happy Birthday poster that Child life did for me to tape up as well as a ballon, and crepe paper. I'm not putting the crepe paper up until I know if we are moving.
Getting up for the first time to get her muscles moving and to help open up her lungs more. Both lungs have partially collapsed.
Sitting down in a chair!!! I'm going to paint her nails in a little while. Right now it took so much out of her they had to give her more pain meds and she is Sleeping.
A moment like this will always humble the strongest of us
Well she didn't break free from this place today but she has high hopes to break free and go to floor tomorrow for her Birthday! Right now that would be a great Birthday present for her. I think I am going to see if child life has any crape paper and birthday decorations to make her place seem more cheerful. She is holding onto so much water that we ended up having to cut her band off because it was way to tight.
Her cut off tags
Shane came and spent time with Shaela while I went home and cuddled the babies and Regan. As well as talk to Bridget. From what I hear Shaela was happy to see her dad. Her Grandma Sandy also stopped by to say "hello" she has been asleep since I got here. Here is what Shane posted on his Facebook about today.
This kids pretty tough. Six times on heart/lung bypass. That's an average of once every other year. She's my hero. And she's making my hair go gray. More gray.
I sure do love this man. He is an wonderful husband and an amazing father. He goes out of his way Dailey to show each one of us that he cares.
She is doing ok. Sore of course. Going to get her to start breathing in the spirometer to help open up her lungs so she can go to the floor. She slept off an on all night as well as me. Horrible chair! Shane just texted and said Beau puked all over in his car seat and he took care of it like many dads would with the outside hose. I will be switching him places later today.
She will have to stay in the CICU for another night. She got to much fluid and is not peeing it all off so is swollen. And has to much water around her lungs and heart. So more diuretics coming. I think the nurse stopped the diuretics last night thinking her fluid out take was high (which it was) but I think it was high because of the lymph draining. Now a lot of the healing and getting better is on how much she will push herself. Time for mom to stop sitting by and watching and turn on the lights, tv and make her wake up and move around. To say I have many friends and know many people here is an understatement. The lunch lady thinks I work here and I've had 3 doctors, 4 nurses and a few social workers and one assistant stock me down to say "hello" and many moms that I know are here often like me.
Her hand is super swollen from Edema (water retention), the blanket was given to her by Childlife, and the door is the one I go in and out of continuously throughout the day. I love how it is named after her first surgeon Dr. Hawkins
Well she is all settled into the CICU (Cardiac Intensive Care Unti). We finally are able to be by her side. She sporadically wakes up wanting water. No one truly likes the swab water suckers.
She may shoot me for this picture
We were able to talk to her cardiologist when we got back to her bed and he is very optimistic with how things went. The next 12hrs are the crucial hours. She is on 8 medications and two different pain meds. I am sitting here by her bedside while Shane went to take care of the others and get them ready for bed. Thank you all for the prayers given in her behalf and in our begalf. One thing she REALLY wanted to ask the surgeon was if he could take a picture of her heart. Sadly she was asleep from the Versed when he came to chat with us before surgery. So I begged him on her behalf. And guess what..... He took it for her and texted them over to me!!!
Our bodies are AMAZING! The metal calipers are holding the rib cage open. Called the Rib Spreader but technical term isFinochietto retractor
Had to do an all new post just for this news... They just got done with the Repair.. The surgeon told us before she went in on how much he would love to save her valve and NOT have to replace it. He had thought about it all night long and thought he may have came up with a game plan. Well from the call we just got it sounds like he DID it!!!! No replacement! He said the chances of her having this issue with her valve again are high (but hope he says something different when he comes and chats with us now)... I can't wait to tell her that once again they were able to repair and not replace it!!! I and Shane could not be more excited!
Now the healing part begins. Next update from Doctor in an hour.
Well it has began. Yesterday Shaela and I came to PCMC to get her pre-op work done. She did X-Rays, Ultrasounds, Blood Work, and discussion on requests, hopes and wishes. Shane's mom (Sandy Dolar) watched over the little ones while we did our all day visit at the hospital.
Getting the hated blood work done. This girl is extremely scared of needles. She put on an amazing brave face because there was a little girl peeking around the corner.
Eating at the University is a must since neither of us enjoys Primary's food anymore.
And it is a MUST to have new Button Up PJ's!
We woke up at 4:00. Shaela needed to shower clean then we had to scrub her down with special medicated wipes. It is to help keep down staff. Braided her hair back (because no one likes hospital bed head). My dad (Burke Jackson) came to watch over the other kids. Him and my mom Jolene Jackson will have them for the day.
Getting instructions and game plan for the surgery. (This was taken before she found out they would be putting in her iv before she goes to sleep)
Dad trying to cheer her up or distract her after just finding out that with her heart issues she can not be pre-gassed to sleep before the iv insertion. She opted for Versed to help calm her and a topical numbing med. I did not take any photos after this because she was pretty out of it after the Versed and actually was fast asleep before they wheeled her back.
-------------————————-------------
I think I will just continue to update on this post until Shaela is out of surgery. They just paged us (you get a antique pager for updates that they can text to) and let us know they have all her lines in and are ready to start cutting the incision.
Shane and I waiting
-------------------------------------------
11:40 Shaela is doing well and is now on the bypass machine. Next update should be in 1.5hrs
