Great Check Up For Abby Today

It has been nearly 6 months since Abby's 3rd surgery, the Fontan, and she is doing great. She had a checkup with her cardiologist today and "she couldn't look better" Her oxygen saturation levels are 93% which is fantastic for her. Back again in 4 months for another check up. Whew!!!
We have been having fun with our most recent addition to the fun, our 6 month old rescue puppy named Weston. He loves to chew, but is very good and playful with the girls and is house trained and enjoys his fenced-in yard.
Looking forward to a fun and healthy holiday season and we wish you and yours all the best.
Thanks for keeping up with Abby.
Bryan

7 weeks later

It's now been 7 weeks since Abby's Fontan and life at our house couldn't seem more normal. It's almost like her surgery never happened. We had a check-up on Tuesday with Dr. Castro and she was very happy with how Abby is responding to the surgery. We've reduced her meds down quite a bit and just a couple diuretics remain, but so far the fluid that caused us so much trouble seems to be gone for good. They don't want to see us back for another check up for a whole month!

Abby definitely has more energy. She's keeping up with her sister and has totally lost interest in her afternoon nap. Watching her run around it seems impossible to believe that she had major open heart surgery less than two months ago. We are truly blessed.

Follow up is good!

Just a quick note to say that Abby's follow up visit yesterday at CHOP was a good one. Althought it did take all day due to a scheduling error on CHOP's end, her xray showed no fluid buildup & echo and labs were normal. She is looking great according to the doc. We follow up next week with her normal cardiologist, Dr. Castro. Thanks again for all the support, prayers, thoughts, emails, texts, status comments, Reiki, personal visits, and all the unseen and unknown help during this time. We ask that you continue to think good thoughts when you think about Abby and we will keep you posted on any updates as they happen.
We are grateful.
-Abby's lucky dad
Bryan

We're Home!

They finally let us go home!

After clear x-rays and perfect labs they decided it was OK for us to go home. As happy as we are to have finally been discharged, it makes us very nervous to have Abby home. We have 6 more weeks until her sternum fully heals. We have to be very careful with how we pick Abby up and do our best to keep her from climbing or anything else that would put stress in her chest. Plus, there is still a chance the fluid could re-accumulate which would send us right back to CHOP. We go back on Wednesday for a follow up visit where Abby will get labs, a chest x-ray and an echo to make sure this hasn't happened. For now, we are just going to do our best to enjoy being back home. Thank you all so much for all the support, prayers and positive energy. It means more to us than you could ever possibly know.

One Step Closer

They took out Abby's last chest tube this morning! The dressing has to stay on it until Sunday afternoon so we'll be here at least through the weekend. This chest tube was attached to a rather large box to collect fluid. We had to drag it around behind us every time we got out of bed and Abby was constantly getting tripped up by the tubes. Having it gone will make getting around so much easier! I'm really starting to see the light at the end of the tunnel now, but being back home with both kids isn't exactly going to be easy either.

After 3 weeks my mom is headed back to California. She did such a good job taking care of Anna during this time I know we couldn't have done it without her!

Progress!

They are taking out one of Abby's chest tubes this morning!

After days of treading water with very little or no change Abby's Blake drain finally stopped putting any fluid out. Her other chest tube is still putting out a good amount of fluid so it stays in for now. Abby should be *much* more comfortable with the drain out which will help her move around more comfortably which will help Abby get better faster.

Progress is good!

Moving in the right direction

Abby has had a good couple of days. She has been up out of bed more and more, walking to the playroom down the hall, and even rode a tricycle today with the physical therapist. We are still here for a while longer, and the days continue to roll by with little or no info from the docs on when we can expect to go home. So be it, when she is ready, we will go home. She continues to charm all the nurses, techs, docs, and anyone else who swings by the room to check her out. Abby is always telling stories to anyone who listens; about her cat Herbert, her sister Anna, or the latest adventures of Max and Ruby which seems to be on a continuous loop on the DVD player.
We are sort of in a holding pattern for now and we'll continue to move in the right direction, one step closer to home each day. Thanks for keeping up with Abby and for all the support.
-Bryan

A Little Better

To try and figure out what was going on yesterday Abby had: blood work, a chest xray, belly xray, belly ultrasound and an echocardiogram. The doctors found nothing abnormal going on anywhere so they think the pain is most likely a combination of her chest tube and back up bowels.

She woke up this morning in a much better mood and did some good work with the physical therapist. She even walked all the way to the play room! I think it wore her out. This afternoon our goal is to figure out how to wash her hair. She has some serious bed head going on!

The chest tubes are still putting out a lot of fluid so we're not making much forward movement there. :(

Day 10

Ten days seems to be the tipping point. We're tired. Tired of being here, tired of sleeping here, tired of seeing Abby look miserable. Abby's tired too. Tired of x-rays and blood draws, getting poked and prodded, and she wants to go home. Unfortunately, talking to her doctors yesterday, it looks like home is a long way away. They said we should expect to be here another two weeks. Hard news to hear.

This morning has been pretty rough. Abby's in a lot of pain. The most pain of the entire ten days so far. Her chest tube is having problems that's causing a lot of pain and her bowels are all messed up which is also causing a lot pain. We had about 8 different doctors and surgeons come through this morning, all with different opinions about what is wrong and what can be done to alleviate Abby's pain. It's frustrating.

They have started Abby working daily with a physical therapist and a couple times a week with an occupational therapist. She has a lot of fun with them and it helps with her strength and endurance. Today we blew a lot of bubbles. That makes her take deep breaths which helps her heal and get stronger, plus it makes her smile.

Please keep up the good thoughts and prayers for Abby. Morale is pretty low around here right now.

A Good Day

We had a really great day! It started out rough but definitely improved.

Our #1 goal is to get Abby up and moving so we literally forced her kicking and screaming into the wagon to take her down to the play room this morning. It was so awful to have her fighting us so hard and I felt terrible making her do something she didn't want to do after all she's been through in the past week. By far the worst moment of this whole experience for me.

Thankfully, we had a wonderful nurse and one of the excellent child life therapists to help us out. They let her watch the fish getting fed and slowly Abby realized the play room was a pretty magical spot. It's full of fun toys and activities and they don't let any of the doctors or nurses inside (unless they're there to play or lend a hand). It's a totally safe spot for them to just be kids. Once Abby figured this out she had a ball. She was up moving more and very happy which made us very, very happy.

Right after we got back from the playroom Anna and Ya-Ya showed up for a great visit. Anna and Abby played memory and shared lunch and were very sweet with each other. It was a fantastic day.

The doctors have warned us that we are now entering the "frustrating phase". Abby will start to get better and get back to herself, but we'll still have to wait for the fluid to resolve before we can go home. So now we practice patience.

Here are some pictures from our day:

Abby is feeling a bit livelier today and snackin a bit. She is officially off supplemental oxygen this afternoon and now our next goal is to get those bowels back in motion.

Waiting

Things here are the same. I figured I'd put up an update so no one gets worried. We're still just waiting for the fluid around Abby's lungs to drain completely. We've been out of bed for a couple very short walks and one wagon ride to the play room which really helps with the drainage. She's eating a bit more (mostly cheese poofs-seriously) and they're starting to try and get her off the supplemental oxygen. We're slowly inching forward and as long as we're not moving backwards, I really can't complain.

Roller Coaster

Being here is such a roller coaster. Abby was much improved by the drainage from the chest tube and was perkier over night. She started eating more and the vomiting seems to be over. However, her x-ray this morning showed fluid building up again, despite the chest tube. The good news is that the tube is already there so there's a way to get the fluid out. The bad news is that as long as the tube is draining, it can't come out and we can't make any forward movement towards going home.

The doctors aren't overly concerned about the effusions. They said that after the Fontan surgery the body has to adapt to the new circulation. Some kids adapt quickly while others take a few weeks. Unfortunately, it looks like Abby is in the later category and we're going to be here awhile.

Upswing

They placed Abby's chest tube late yesterday afternoon. Between the two drains they have drained over 1200 cc of fluid out of her chest which has made a big difference in how she feels. Her o2 sats are much higher and she looks a lot better. Best of all, she actually slept last night! And in typical Abby fashion, all the doctors and nurses are totally enamored with her and have said she's the best 3 year old they've ever had come through here. I sure think so :)

Now we have to work on getting some food in her and getting up moving around. She's still complaining of pain, especially where the new tube is, but they won't even talk about removing anything until they see how much drainage there is when she's up walking around.

Anna came for a visit yesterday. Unfortunately, it was right when everything started to go south with Abby and it turned into a pretty difficult visit. Anna is worried about her sister but Ya-Ya is taking good care of her and keeping her busy. I'm hoping Abby is up and moving around soon so Anna can come back and see her looking much improved.

Thank you again for all the good thoughts and prayers. We're ready to get home, but the drainage problem could keep us here longer than we planned, so keep praying that resolves itself soon now that the new chest tube is in place.

Setbacks

We've had a pretty big setback.

Abby has collected a large amount of fluid around her right lung which is compromising her heart function. She is having a very difficult time breathing and speaking so they have decided to place another drainage tube around 4pm. This means heading back to the ICU where she will be sedated for the tube placement. Not what we like to see 3 days after open heart surgery.

She is begging for water but since she is being sedated she's not allowed to have anything to eat or drink. As a result, she's pretty ticked off with us. Please pray the drainage tube takes care of the problem and that no more hurdles appear.

Day 2

The cardiologist just informed me that day 2 (today) is often the worst and that our problems today are not a set back. Now we have to get her up and moving around. Since that involves turning off Max and Ruby it should be interesting.

A Rough Night

Bryan (being the saint that he is) sent me to sleep at the hotel last night while he stayed in Abby's room for what turned out to be a pretty rough night. Abby hasn't had any solid food since the night before surgery and has been sipping on water and some shake like the one she drinks at home. Last night her tummy decided it had enough and she spend a lot of the night throwing up. I can only imagine how painful that must be after having open heart surgery!

The nurse seems to think it's probably a combo of the narcotics and needing to get up and move around so her bodily functions can get moving and back to normal. Despite how yucky she feels she's still chatting and watching TV while relaxing in bed and she didn't cry at all for her last blood draw.

They're talking about moving us out of cardiac ICU today and down to to regular cardiac unit. That means we're one step closer to home and she'll be able to get out of bed for wagon rides and playroom time.

I'm pretty sure Anna's having fun with my parents. My mom called last night to ask where the closest place to get ice cream was. We're hoping to have Anna come for a visit as soon as Abby's (nasty looking) chest tube is removed.

So for now we're going to try to get Abby to keep something down and stay mellow. We've got plenty of Max and Ruby DVDs :)

She's Awake!

They came in this morning and removed most of her major lines leaving only her chest tube behind for drainage. They expect to remove that either tomorrow or over the weekend depending on how much fluid she's putting out.

They took her off some of the sedating drugs so she was awake for a bit and totally lucid. Thankfully, she's the same old Abby telling the nurse all about our cat and her current favorite book, "Goodnight Gorilla". She really wanted to sit on Daddy's lap which was fine with the nurse, but once there decided the bed really was the better bet and promptly fell back asleep.

So far all the doctors and nurses say she's looking great and recovering nicely. What a huge relief. Keep up the prayers that no hurdles appear and we can make it home soon.

Post-Op

Everything is still looking pretty good. She somehow managed to get some very minor abrasions on her eye while she was in surgery so we had an Optomology consult, but it's no big deal. Other than that they are just monitoring her fluid output to watch for fluid build up around her lungs. Dr. Spray said that is very common and the amount of fluid she has will detirmine howlong we end up staying.

Abby has started waking up here and there, but they are trying to keep her as mellow as possible for the night until some of her more major leads come out. She is on some morphine and the nurse tonight told us to expect her to have a "bear of a morning" but that kids generally get back to feeling like themselves by tomorrow night. When she does get lucid, she's not too pleased with us but was very happy to have her bears and her blankie with her. We're so proud of how well she's doing!

Out of Surgery

We just met with the surgeon and she's out of surgery. Everything went perfectly and we should be able to see her in the next 15 minutes or so. They are cleaning her up and trying to remove her breathing tube now.