a great cardiology visit!

Maddie and Dr. Chun

Maddie had her second cardiology visit since surgery yesterday...the last one put her back in the hospital, so I was a bit nervous with this appt. and came prepared to Seattle this time. We had an early appointment, 8:30 at the main campus, so we left at 4:45am to avoid getting stuck in traffic. Ugh! We made it with plenty of time to spare.

She had the full work-up at this visit: echo, ekg, chest x-ray, sat check and vitals. Her weight is 15.2 kilos (33.4 lbs) and sats were 86%. This is why we're seeing PINK! It's amazing how much 12% more points in oxygen levels can do for a girl :) Her weight has just teetered around 14-15 kilos, not gaining but maintaining for now. Unfortunately, she got a bad stomach flu over the weekend after getting home from our second hospital stay. She was so sick--throwing up 2-3 times an hour for 12 hours straight, fever and could not keep anything down. I was so worried about dehydration, inability to hold down her meds, and of course these types of illnesses always happen over a weekend. Her doctors and I joked that maybe the flu bug helped dry those pleural effusions up. Joking aside, it was an awful flu and thank goodness Children's has a Cardiologist 24/7 to talk to and ease my worries.

Dr. Chun was so pleased with how the echo looked. He did mention that her pressures in her Fontan are still on the high side, so she's getting plenty of use out of her pop-off valve. So glad she has a fenestrated Fontan, I think she'd still be in the hospital if there wasn't that little escape-route hole in the conduit for blood to go when the pressure is high. Other than a great echo report, she had a CLEAR chest x-ray! Yay!!! It was amazing to see this. Her lasix dose has now been cut in half, she'll only be on 20 mls 1x a day instead of twice. Other than the lasix, she's just on a baby asprin a day. She's on sternal precautions until July 10 and we're starting to venture out more with her, we've enjoyed some family get-togethers and the boys are busy with VBS this week.

Getting this wonderful report from Dr. Chun brought me to tears on the way home. It's amazing how well Maddie's recovered...she's only 5 weeks out from a major surgery and getting back to "normal" already, well, a new "normal" for her--PINK and a bit more feisty these days! We love watching her play and run around now with her new found energy and lease on life. We are so thankful and relishing every bit of it.

Princess Lindsay

Our hearts are deeply saddened with the sudden loss of a special heart friend, Lindsay Dean. I've followed her blog since before Miss Lindsay was born. What a courageous little girl and amazing family. Please keep them in your prayers...Lindsay's bright eyes and sweet smile will be missed so very much.
He will wipe every tear from their eyes ~Rev 21:4

our hospital stay in pictures

I've been googling "pleural effusions" since being home and found a helpful website. If you'd like to read more about this post-Fontan complication Maddie's had, here's the link.Her "almost clear" x-ray before the chest tube was pulled. You can see the tube to the left and the fluid that is there is at the base of the tube. The other hardware in her chest includes 4 coils (collaterals that were coiled off), 6 wires holding her sternum together, and 2 clips from previous surgeries (BT shunt & PDA ligation). Her heart is the in the center/right area of the x-ray.
Because of this pleural effusion (the effusion is all of the white on the left side of her chest) she wound up back in the hospital for 5 more days--totaling two weeks, which is what we had prepared for with the Fontan surgery. It was nice we had a short vacation at home in between stays!She ended up with another chest tube placed, high up in the right intercostal space on the midaxillary line to drain the 600+ cc of fluid which had accumulated in the pleural space; the lining outside of her right lung which had collapsed because of the pressure from that fluid.
Maddie had the "go ahead" to roam freely with her chest tube drain. She loved the animals in the hospital, naming each one and we went to see them often. This is "Gaffy the Giraffy" outside of the elevators on the 5th floor.
We also went to the playroom and cafeteria several times. Our nurse would just give us a curfew on when we needed to be back for vitals or meds. It worked out great. Here she is holding up her painting on our way to the cafeteria for supper one night.
Having visitors really helped pass the time this hospital stay...here is Miss Maddie and cousin Kylie Rose enjoying a Barbie movie and chillin' in her bed before Maddie's chest tube was pulled.
We enjoyed a picnic Sunday afternoon with Daddy, Caden and Nany.We were in need of some sunshine!

Children's is a fantastic place but we hope to only return for routine appointments now...crossing our fingers that she won't be admitted anytime soon!
Dr. Meg Vernon (Maddie's other Cardiologist) Mommy and Maddie before the follow-up Fetal Echo on baby #4...we needed to follow up after 18 weeks because it's "standard practice" and our first ultrasound was too early to be sure that everything was ok heart wise. We love Meg and she holds such a special place in our hearts...she diagnosed Maddie's CHD and has been such a wonderful doctor, friend and support. Baby's heart looks perfect!!! 4 chambers, 4 valves, arteries all in the right places, this 'mystery baby' #4 has a healthy ticker! We're so thankful.
Maddie couldn't quite stay awake at mommy's appointment, so she curled right up on that hard chair and slept through it then slept another 2 1/2 hours on the way home. Staying in a hospital is exhausting!

We're Home!

We were discharged today at 11:30...home by 3 and Jace's baseball game was at 5. Yes, we've stayed quite busy today but busy was good. Maddie even got to go to the baseball game!!! Beautiful day + outside = ok for her to be around people. After playing in the hospital playroom each day this week, I came to the conclusion that we can "expand the bubble" a bit. It's good for all of our health, especially mental health!

Right before discharge, Dr. McMullan came by to break the news that there was a bit more fluid on this morning's x-ray than the last 2 previous days. So...we will be watching her closely but no need to re-insert a chest tube and I can monitor her closely at home vs. the hospital. Plus she was feeling so good and ready to bust the joint this morning, there was no way they were going to keep her locked up there! She's doing fantastic inspite of the fluid and was so happy to get home today. Medically, her diuretic was increased and I will pay closer attention to what she's eating (trying for less sodium in the diet) as well as how much fluid intake she has. Overload of fluid and lack of pee will result in fluid reaccumulating. We follow up with her Ped. this week as well as Card. in 9 days. Of course both offices welcome us anytime if anything should come up and now I won't be dismissing her symptoms as post-op pain and fatigue, like I did before. I've pulled out her sat monitor as well as my stethescope to monitor her oxygen levels and breath sounds each day.

I have more to share but I'm tired and ready to go watch a movie with the family. Good night and will update with some pics and more info later! Thanks for cheering Maddie on once again :)

a good day

Today was a day of visitors which really helped pass the time. We had Aunt Jessica and Kylie drive over to visit us this morning!! This made our day. The little girls hadn't seen each other since Easter and I wish we could have gotten their first (of many) embraces on video. So dang cute! Also, thanks to our heart friends: the Heaths (Gracie), Kirsten (Angel Ewan's mama) and the Balma's (Grace's family) for stopping by as well. I so enjoyed visiting with them all. Maddie wasn't in her best mood though this afternoon and needed to sleep off her Versed "hangover" I guess.

Her chest tube was pulled around 2pm after getting the anti-anxiety med (Versed) and being NPO (couldn't eat or drink). She's had 2 chest x-rays today and will have one tomorrow morning to determine whether or not we get to go back home! Her chest tube output today was only 7cc so we're hoping these effusions have given up once and for all. Her x-rays look so much better each day and back to her normal.

This hospital stay has been much different & much easier than the last one just a couple of weeks ago. She has felt so much better; especially since getting her tube out today, dancing around and singing "Jesus Loves Me" as I type this. We are so lucky to have many awesome friends/staff who work here and come by to check on Miss Maddie often- Ray, Nurse Barb and her very caring doctors; Dr. Chun & Dr. McMullan. It's been a good day but we're missing home and the boys in our life.

Not much to report

Hospitals are so slow on the weekends. Fortunately, Maddie's been free to roam about the hospital today and we just have to go back to our room on 4G for vitals and meds. Bryan, Cade and Nany stuck around until early this afternoon and have headed back to Royal, so it's just Maddie and me. I have some cute pics of our stay these past few days but don't have any way to post them since I'm using the family resource center's computers. She's hating her hospital room right now and cries as soon as we step out of the elevator, so we're getting our exercise to say the least. We even made it to the Heart to Heart Support group meeting here today. It was nice to visit with some other heart families.

The chest tube drainage has pretty much stopped...only 27cc in the drain box right now. She's been off suction all day and her IV line was pulled as well. The plan is to pull the chest tube out tomorrow then see how the day goes. Her chest x-ray will be the biggest indicator but it looks like home Tuesday morning if all stays the same. Her x-ray this morning came back with minimal fluid (less than 20 cc) so that's awesome...she's dry. Her lasix dose is now oral and amped up to 3x daily. She's so ready to come home :) Me too.

Lots to little

The fluid has really tapered off today- total from yesterday was 600cc and today she's been dry, only putting out 20cc. We're hoping it's about to dry up. She's on a heavy dose of IV Lasix 3x a day and an antibiotic since the new tube was inserted. It's a smaller chest tube, placed really high compared to the other chest tube scars she has. Dr Chun, her Card., is on call all weekend and feels we should be a little more on the conservative side before coming home. Chest X-ray in the morning should tell us a lot. Just still figuring out why all of a sudden all the fluid when 4 days prior she was clear. Her sats are up-even hitting 91 while she was sleeping today! Yay! Kept her busy today with the playroom, cafeteria & walks around the unit. Had some pain issues this afternoon w/ puke but finally got her to take some Tylenol for pain. She was much crankier today but has every right to be. Bry & Cade came over & I'm enjoying watching them swim at the hotel while I type this. Nany's staying with Maddie tonight so I can get some rest, this baby-mama is really needing it tonight...though I'm always on-call with Moomer :) Praying she has a restful night & we'll be home in a couple of days.

9 days here, 9 days home and now we're back...

Update @ 11pm: Drained 300 cc off during the procedure & since being back to the floor, she's drained another 260cc. This is lots of fluid coming from 1 chest tube/pleural space. Fluid is being checked out, doesn't look chylous. Has 1 IV in right hand. She didn't have to be intubated for procedure, just under anesthesia w/ gas mask on. Maddie ate & drank well tonight and her breathing isn't as labored. Sats are up now too, mid-high 80's, so much better there. Now we just wait & see. This isn't uncommon to happen, she was still considered to be in recovery and fluid can pop up, that's what is frustrating about the Fontan. Just was nice to get a taste of home. Mom is here with me & thank goodness I packed a light hospital bag for "just in case". So proud of Maddie and how she's taking this. What an accepting, mature girl we have for only 3.

Maddie had her first post-op Cardiology appt. with Dr. Chun this morning in Bellevue...long story short, she's now admitted to Children's and currently in the Interventional Radiology Lab getting her right lung space' fluid drained off and a new chest tube put in. Ugh. The last few days she's been "off" and I attributed it to tiredness, finally settling into home, not eating as well, not taking pain meds, and a little bout with diarrhea. Well, her right lung was collapsed and sats were 69-71 today in the office from this whopping pleural effusion. So we're back. Most likely, she'll be here a few days to see if the fluid will accumulate again. Unfortunately,this can be par for the course with Fontan recovery. I'll update later after her procedure is done and when she's settled back into our room on G4. Please say a prayer for Miss Maddie...she still needs them.

inspiration & thanks

Just a quick update...Maddie's doing better with each new day, yesterday she didn't even take any Tylenol and she's bouncing back so much quicker than I ever could have imagined. Her bathroom issue has resolved itself and her appetite is coming back. I have to contribute this to being at home and from everyone's diligence in prayer on her behalf. God is so good to us.

I'm lost for words right now on Maddie but what I can say is that she is such an inspiration. I've hoped and prayed since before her birth that more good would come out of all of this, especially knowing our daughter would have a lot of pain and a fair amount of suffering early on in her life. I've prayed that through this, God would be glorified. And from the prayers we've received over these past 3 years, I believe she's inspired many to look up, draw on their faith, and give God the praise for what He's done in Maddie's life as well as their own lives. Yes, we've seen the good.

We're so humbled by all of the kindness that has been shown to us and amazed by the impact of her story. Thank you for all of your prayers, thoughts, errands, boys entertained and watched, chores kept up, emails, texts, cards, gifts, comments, facebook messages and just the overall generosity and kindness shown to Maddie and our family. These offers of help, organizing and preparing meals for us, and the support we've been given has helped us tremendously. We already knew we had an incredible family and wonderful friends, but we are so blessed to live in this community. We can't express our gratitude to you enough. You've lightened our load and we thank you for helping us get through this.

Now that we're home...

it feels like we can finally take a deep breath from the magnitude of it all. Although I'm still in shock of how quickly the Fontan was for us (I had prepared for at least two weeks of being in Seattle with her.) 11 days from home was so much better. This surgery has weighed so heavy on my mind for the past year(s) that I can't believe we're on this side of it now. It does feel as if a huge weight has been lifted even though we have a sore, tired, cranky little girl to contend with. It's great being home and recovery is waaaaay better here than in the hospital!

But the recovery from this surgery is far from over...she's on restrictions from crowds (no church, no groups of people, no public places like movie theatres, no playdates, etc.) as well as some activity restrictions like climbing, riding a bike, no lifting heavy objects, and overexerting herself, so we're back in a bubble again for a few more weeks. We have to try to protect her from getting hurt or sick basically. Her sternal precautions include things like no lifting her up under her arms, no raising her arms over her head, for 6 weeks. We're getting the "scoop" method down. Maddie came home on just Lasix (2x day), Baby Asprin as her anticoagulant, Bisacodyl (for constipation) and Oxycodone & Tylenol for pain. She's been managing fine without the Oxycodone, so we're just sticking to chewable Tylenol tablets. On Monday we'll follow-up with her Pediatrician with a chest x-ray and on Friday we'll head back over the pass for her post-op cardiology appointment with Dr. Chun. We're working on getting her appetite back and gaining back the weight she lost.

We were told at discharge that we may not see our girl again for 2-3 months. Dr. McMullan advised that she will probably regress a little after surgery. The major "regression" was having a bottle at the hospital- she hasn't taken a bottle since I weaned her at 15 months old- but since she was dehydrated and refusing to drink anything, I gave in to this on our bad day. I think I even suggested it since she likes to pretend she's a baby and I was desperate, so I will take full-credit for this one. Luckily, she hasn't had one since early Tuesday morning and thankfully, she hasn't asked for one. She's also back in a diaper 24/7. We'll try potty training again when she's ready. The emotional toll it took on her was probably as difficult or more so than the surgery itself. She had no control over anything, was constantly "bugged" by nurses & docs and she had no say in any of it. At 3, she can't verbalize what she just went through and how she feels both physically and emotionally. I've never seen her be this frustrated and angry before, both with herself and with all of us. It's just going to take some time. When we do get smiles from her, we see our Maddie and does it ever melt our hearts. Just over the past couple of days, I've seen improvement. It's just going to take time and being home is the best place for her. I appreciate the doctors recognizing this too...as long as the child is stable and making some progress, they don't hesitate to discharge them home.

As I wheeled Maddie out of the hospital Wednesday afternoon, I couldn't help but cry. It was bittersweet. We are so very grateful for Seattle Children's; the doctors, nurses and all of the Cardiac staff there...our daughter is here and thriving because of them. Our outcome could be so different, and I'm eternally grateful to them, especially to this man...her surgeon, Dr. McMullan. He is an outstanding surgeon as well as an amazing person. We love him and thank God that Dr. McMullan was given the talent and ability to mend broken hearts.
waiting patiently to get discharged on Wednesday...she would NOT get back in her bed and insisted on clothes and shoes. Thankfully Derek, Carly & Kate brought over some new sparkly flip-flops for her! They also helped load all of the bags from the room and it was a big job. Thanks guys!
No more staring at this!!! The nurses use these white boards in each patients room and erase the goals as the child passes them.
Good-bye Seattle Children's Hospital!

Update: Day 9 HOME!

WE ARE HOME!!! Discharged today around 3 pm and home by 7 pm! You guessed it, she did (some of) the deed and her echo, x-ray and EKG all checked out fine! It's so great to be here, all 5 of us together again in our home. I will update more tomorrow, too tired to post much tonight. We're home after only 9 days in the hospital. Seattle Children's is a wonderful place but now the real healing can begin.
We are so blessed and very grateful to God.