All the Beads

Hola!

I am nervous to say it, because in the hospital everyone is a little superstitious, but Ella has been making EXCELLENT progress. The difference from Sunday to today is insane! The magic of blood is phenomenal! She looks a lot more like her normal self and is looking around and checking out her surroundings. She didn't even really sleep the last couple of days because she was too busy checking out whatever was going on around her. Today she has been sleeping ALL day to catch back up.

Ella's heart function continues to be good! The latest surgery was to repair the leak in her aortic valve, but there is still a leak 😞... It's smaller than it was, but it's still there. There's not really anything we can do about it at this point and she seems to be doing ok with it. She will eventually need surgery on it, but we are hoping that we can hold off until she needs surgery for another reason.

Her wound on the side of her head is starting to go away! The one on the back of her head is actually a little deeper than it was the last time I saw it, but wound care nurses will be coming twice a week to check it all out. Her sternum has been healing even with the infection underneath it. There was talk about having to use a wound vac to get the infection out, but the last few days her white blood cell counts have gone down so they think the antibiotics are working! We are praying, praying, praying that she will not need the wound vac because it would keep us here FOREVER. Haha! But really... We'd be here for months. It feels as if we've been here forever as is, but to add more forever would be c-r-a-z-y!!!

Unfortunately Ella is going to get the trach put back in on Wednesday... As much as Matt and I have asked if we can try to extubate without the trach, Dr. Watanabe doesn't want to risk upsetting her and have her "code" again. She is still in a critical state so he doesn't want anything to interrupt her healing. It's kind of hard to argue with that! I am hoping that we will be able to start to wean her off of the trach before we leave here. The argument is that they want a stable airway to use for her next surgery, whenever that may be, but they didn't use that one for this surgery so I don't really see the point. It's so much work at home that I just don't want to have to put her through all the junk that comes with it anymore... I have a picture of our family in Ella's room and I started busting up laughing after I looked closer at it because Ella had ripped her HME (the trach cover) off and was holding it with a pleased facial expression. She has already shown us that she is going to be a sassy child. I guess I kind of deserve it after being one myself!!

We have been in "isolation precautions" because a bacteria somehow reached Ella and three other kids on the floor. I had to meet with the PICU doctor a couple of days ago to go over how Ella got it and what they're doing about it. The doctors/infection control thinks that it started in the playroom and was brought in by a sibling of another little one in the PICU. So since we went in the playroom with Eli, Ella caught it. It doesn't impact normal, or even moderately, healthy people, it just impacts the critically ill. So on top of her other infections, she contracted this bug... Honestly, I'm a bit surprised this hasn't happened earlier with all of the illnesses that comes into the hospital. I guess this is the first time (of course 😉) this has happened in this hospital since they moved to this facility and it hasn't happened in the last 15+ years. So we have gotten to experience a lot of those things that rarely happen around here! We had to switch rooms today into a sterile room next door. It's all backwards from the previous room we were in so I'm all kinds of thrown off! Ha! Because of the isolation precautions, I am not supposed to leave her room other than when I need to grab food. They don't want this bacteria to spread to any other kid or to anyone in the rest of the hospital. So that being said, we aren't going to bring Eli in to see her until the precautions are lifted. I also have to wear gloves and a gown at all times. It's pretty awesome. 😉

Yesterday I got to sit in on one of Ella's "procedures". I haven't sat in on one before now because I wasn't really allowed to, but they said that since they know me so well now that I could! I really enjoyed it. She had an arterial line placed in her left arm. It stretches from the inside of her elbow up to her shoulder. This allows the nurses to administer meds and get blood draws through it. Dr. Hill had an ultrasound machine and was watching where he was placing the line through it. It was really cool to experience what they do! I am definitely glad I was just a bystander and didn't have to do anything, but it was really neat to see. Ella was so cute during the whole thing too. She was given painkillers and a paralyzing medication which made her sleepy for a little bit, but when they took the sheet off the top of her, her eyes were open and she just watched Dr. Hill as he sutured the top of the line to her arm. It was so cute (weird to say something's cute when it comes to stitches!). She also had her chest tube taken out so that was great to see too! One step closer to holding my baby again!

All dressed and ready for the procedure!

They are continuing to wean Ella off the vent and are using this newer program called the NAVA still. I explained it in the previous blog. She seems to really like this program. She looks really rested and comfortable since using it.

Ella is also up to goal volume of milk and is now starting to get the milk fortified to a higher caloric value. She's done well with the milk so far. We continue to pray for no chylothorax!!!

I have definitely felt very hopeful that we will get to take Ella home again. We haven't even brought up the "discharge" word, so I have no idea when that'll be, but I think we will get there! If you would've asked me on Sunday, I would've said there's no way that she will go home again, but if she keeps fighting like she has been, I think she will get to! We now call our house her vacation home. 😊

We started this new program called Beads of Courage. It's this program where a foundation gives hospitals beads to give to chronically ill kids to have a hands on way of showing all that they've been through. Ella has collected 1225 beads as of Monday! Isn't that crazy?? It symbolizes the pokes, procedures, wound care, surgeries, nights stayed in the hospital, blood infusions, etc. that Ella has been through. It has been really cool to see all that she's gone through in a tangible way. Some of them are for particular courageous things that Ella has done and some have even been carried by people while they've done courageous things. Ella has one that was carried in the Boston marathon and one that was carried by a musher in the Alaskan Iditarod. My cousin photographs the Iditarod so I sent her a picture of the bead and the card explaining that Becca Moore carried it. She tagged Becca in a comment and Becca responded! Talk about a small world. I have another bead carried by a young student who was brave and carried her bead while she took a big test. Isn't that cute? I want to get my class to do something with the Beads of Courage. There are so many awesome foundations out there! The beads make the procedures a little less hard on us. They remind us of all that she's endured and the strength she possesses. She's incredible.

Ella's beads. Cool huh???

Just want to say it again, everyone here at Sutter has been so amazing. They really are our PICU family 💜

Please pray specifically for the infections in her body to be healed. I really don't want to have to use a wound vac.

I am going home tomorrow to spend a fun day with Matt and Eli tomorrow!!! We aren't sure what we are going to do yet, but we have some fun ideas!

Love,
Jillian