Paige( Chacko-Harman) & her family while they remain at CHOP

Power for Paige ! #GRIDisorder

Paige is the niece of a dear friend of mine, Kara - her sister Karla and Husband Cody have been at CHOP since 12/21 24/7 even on Xmas with Paige making this the 2nd Xmas spent in the hospital with each other , Paige and her little sister . You may know them thru Chacko’s Family Bowling Center and how generous they are with the community! They put their life on HOLD to make sure Paige has immediate care, they travel to Maryland to get her the top notch physical therapy, they have spent many many days weeks and months inside the hospital - sleeping in the hospital - If you know this family you know Paige is a tough little cookie who has alot of fight in her ! They’re the first to step up when others are in need. The Chacko family are wonderful people - Paige as back in CHOP and that means her parents are too! Im asking the community to pull together - to help them with hotel costs , so they don’t have to sleep in a 2 bed picu unit, a hot meal, donations to help with medical expenses, gas money, gifts for Paige and Penelope to have Christmas when they return home, and whatever other expenses that may arise as they don’t know when Paige will be going home. Here is the story as of tonight working back to the 21st please donate on here or feel free to donate to my Venmo and I’ll make sure Paige’s family gets it @tiffany-kline-31

update as of 1/3/25

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Pulmonologists were in just before rounds this morning. Paige's lungs sound good, and are working well. They recommended a steroid closer to extubation to reduce swelling at that time. But the doctors and respiratory said that it isn't necessary because her leak isn't greater than 30. Which leads them to believe there isn't any other significant swelling. Paige did pass her ERT (extubation readiness test) they did tonight. We are still reducing vent settings, because Paige is out breathing the vent. Based on vent settings, they are planning a possible extubation for tomorrow morning .

They are prepared to have a full face cpap mask on Paige for immediately after extubation. And they are going to give her some more O2 assistance to keep her comfortable during the transition.

They said that at least half the kids in the hospital would probably test positive for the H-Flu. It’s very common. The antibiotic they are giving her is taking care of that regardless and she will continue it for the next 5 days.

As far as the adrenal insufficiency - the doctor isn't completely convinced it's something Paige will have. It is something that can come along with illness. It popped up during her last hospitalization (we don't ever remember hearing anything about it). But, once Paige is on the up and up, they will retest some labs, and as long as Paige's cortisol levels are within where they need to be, she shouldn't need any further testing.

Paige pee'd on her own tonight ! They were checking her every so many hours and cathing her so she is comfortable. She hasn't pee'd on her own in a couple of days. So we are taking this as a good omen to take us into tomorrow.

Prayers for Paige and that the extubation goes according to plan and that she continues to breathe comfortably after.

update as of 12/31/24.

Paige was extubated today. We were so happy to see her awake and without that tube. She did an immediate lip bite (Paige signature) and then gave the best little smiles. Paige was doing so well right after extubation. However, as time went on Paige seemed to have a bit of a struggle with her breathing, requiring more help.

Paige did spike 2 fevers today. Both came down with Tylenol. They seem to believe Paige is still fighting her original infections. All of her numbers had been great - beside her labored breathing.

Speaking to the attending, he wanted to see a bit more from Paige's numbers to make sure that we can keep her steady and strong without the tube. After further breathing treatments, x-rays and other labs. It was within the best interests for Paige to be re-intubated.

It sucks. As we sat on the bridge of the 7th floor at CHOP. Cody and I were waiting for that call to let us know the re-intubation was finished. We found ourselves talking about how this trip is unlike others. I mean, nothing that bring us here is ever good. But it seemed that Paige just always moved forward. This trip has just been a bit different. We are having these situations given to us where we are told, you know, it can be A (being that step forward) or B (being that step in the other direction). And, to our surprise, we are having moments where they are telling us its B. We never thought we would be where we are right now. And we always try to go into these situations with our guard up, because we know things can change in an instant.

This isn't exactly how we wanted to end 2024 or begin 2025. We unfortunately, aren't together (Cody and Paige will be at hospital, while Penelope and I will be at the hotel). But we are hopeful that the new year will bring our family... something different... a good something different.

We know Paige is a fighter and will continue to conquer every obstacle that continues to be thrown her way. And we will be right there with her.

Continued prayers for our Paigey are appreciated more than you know.

(Pic) The picture was taken shortly after extubation this afternoon when Paige was just enjoying smiling at her Momma ❤️ (with her cpap mask and that little lip bite).

As of 12/30/24

Day 10.

Paige has had a good day. We are continuing to drop her positive end-expiratory pressure. Which means her lungs are holding their own. Her numbers have been really good. As long as they continue like this throughout the night, the plan is for an extubation tomorrow morning (early). ❤️ Please God.

Her fluid input and output are still fairly equal and doing well. Paige did get a blood transfusion this morning. That was due to the blood draws and the Lasix treatments taking a toll on her.

She is more awake today than she has been most days. Lots of movement. Not super open eyes, but she is definitely peeking! Some uncomfortable moments. She hates coughing with the tube. And yawning is difficult. So sometimes you see little tears. But she is really holding up. She is so tough. My beautiful baby girl.

As of 12/29

Another day down.

Paige's numbers held nicely through the night and for today. She is still on some slight sedation, just to keep her comfy. She is still on the norepi (but they did lower it) for her BP, which is looking good. The idea now is to dry Paige out a little bit. She got another round of Lasix today to help do so. Her heart rate is a little high - but that is also because she is slightly anemic (due to all the blood draws) which isn't abnormal in this situation. But is another number to watch.

No talks of taking the tube out today - which we weren't expecting. But talks about it coming out are becoming more realistic (as long as the numbers stay good ). Paige has only been intubated one other time on another PICU visit, and it wasn't for a long period of time. So we are learning alot more about this as we go along.

No pending respiratory culture reports are back yet. They would just help us maybe pinpoint why Paige had that fever a few nights ago.

This is the first of our many hospital visits where we are actively staying in a hotel room. Normally on every trip, Cody and I would stay and sleep on the (horrible) hospital couch/bed situations they have for parents in the rooms. We even stayed bedside last year with Penelope. However, Penelope is now at the very active, investigating stage. And unfortunately this trip around we have been placed in a shared room. Definitely not ideal. But we are just happy we were able to get here considering beds were full on our first request.

It does make it difficult to occupy Penelope for long periods of time in the hospital room. Also, being our situation, Paige is given her own personal nurse around the clock. Who is literally right outside the door (if not in the room constantly) taking care of her.

But, Paige is definitely getting her rest, which we are so thankful for. She needs it. She works so hard every single day of her life. She is honestly just the strongest girl you will ever know.

. These trips don't ever get any easier. We are given new sets of challenges everyday. And just take every moment minute by minute. We appreciate all your continued prayers for Paige and all of us. But I do have another favor to ask, please include this child and their family in your prayers tonight.

❤️❤️❤️

as of 12/28 “Paige has continued to fluctuate through the early part of the night. Her BP was wonky - and staying fairly low, oxygen was hanging low as well, heart rate was a bit high. The attending spent a little bit of time in her room just trying to situate all of the craziness. Paige then decided to peak a fever. They did so some deep suctioning, gave some steroids and an antibiotic. They did run some labs out for further tests...

Her numbers were great this morning and througout the day. However, still trying to keep it all balanced out. She seems to get "goofy" at night time. Paige is still intubated, but has been much more responsive today. Not really opened eyes, but trying. Lots of raised eyebrows (if you know Paige, you know those famous eyebrows). We also got some really good movement from her. Arms wiggling, legs moving and some finger squeezes when asked! I did include a little video of the first finger squeezes I got today. The restraints on her wrists are so when she does start moving she doesn't pull at her intubation tube.

as of 12/27

Paige update

At this time, Paige is doing ok. We have had some ups and downs.

Paige's liver numbers are looking very good at the moment. However, we are having some difficulties balancing fluid levels, (dry = good for lungs, but bad for BP) (wet = chance for fluid in lungs, but BP is a little more stable). With that being said, Paige is still intubated, at least through tomorrow morning...? We have had talks about possible extubation the past few days, but have been having to put it off due to our fluctuating numbers.

They have removed her arterial line (it was starting to not be so accurate - just happens with the tiny kiddos sometimes). So we are sticking to the regular/constant BP checks. They also removed her stomach sump pump (this was removing fluid and gas from her stomach). So she is minus a few tubes which is always good.

They have been adjusting the Fentanyl. When I last updated everyone, they had taken her off of it completely. She responded and started moving around. Well, she moved just a bit too much. When she starts moving, they have to push Fentanyl to help keep her comfortable, so she doesn't move too much, so the tube doesn’t get affected. Its basically a balancing act that we need to master at this time.

Because of the fluid issues we have been having, we are putting Paige back on the norepinephrine to help with her bp instead of playing this back and forth fluid game. Still waiting to see where this takes us, being as Paige's numbers have been all over today, ugh.

Paige got some cute boots today from PT to help stretch her legs, they don't want her to get too snug from the lack of movement.

Things are so close to being so good. We just need to be patient and weather the storm. It's been days since we have seen her beautiful blue eyes. We can't wait to see that Paige personality again and just be able to wrap our arms around her. “

Continued prayers please for their Paigey girl in hopes they will keep moving forward. They are so thankful for all of you and the power of prayer.

Continued prayers for their Paigey girl ❤️