Cardiology appt.

Kindergarten School Picture :)

Miss Maddie had a her cardiology appt. last week in Seattle. Bryan, our niece Savanna, Maddie and I made the quick trip over and back. Savanna and her youth group sewed blankets for the cardiac babies so she came along to deliver those and see what her cuz does at her appointments.

Maddie has become such a cardiac patient pro, laying quietly for 45 minutes during her echo so the tech can get pictures of her heart, being helpful putting on and taking off the EKG stickers and leads, and holding very still during her blood pressure and sat checks. It wasn't always this way, between ages 9mo-3, I felt like I was at a circus, trying to keep her attention, keeping her still and helping to keep her calm and distracted during these tests and procedures. Makes me tired and sweaty just thinking about the antics I'd do!

Our girl is still growing like a weed! Never in a million years would I have guessed she'd be in the 90th percentile for growth. She is a healthy girl, our prayers have been answered. Her sats were 92% and blood pressure 90/65...both great for her. Dr. Chun reviewed her past echos to compare a new finding, which we're still unsure whether this is a "fake-out" on the pictures or if its really there. Her echo pics were very clear which was a bonus. It appears that Maddie's developed a couple of "jets" at the base of the tube and her IVC. He reassured us that scar tissue is holding everything in place and is guessing that a couple of the sutures which connects the shunt could be loosened and blood is able to leak or shoot out in those areas instead of flowing up the tube to her lungs. I actually noticed it during the echo...alarming to see but more so to hear about.

Dr. C has always laid it all out there for us, never holding anything back. I appreciate his honesty and willingness to share the "not-so-good" stuff about her heart but it takes me a bit to process it and after an email to him with more questions and a week and a half has passed by, I'm ready to post about it. He also said the pressures are up in her Fontan side, doubling from her echo in May (went from a 3-4 to a 8-9). From the echo, her PA's look great, she's still dependent on her fenestration, so why the pressure increase? Who knows...my theory is her extremely fast growth has pulled them loose, but that's just my theory. We don't know why or the specifics of this, further testing is needed. I pray its just a false alarm on the echo. As of now, her Fontan continues to function well and we'll focus on that. He mentioned a cath or cardiac MRI in the future would be our best bet in investigating this. So we're still on a 6 month pass. Dr. C wants to keep watching this and reiterated that if we see any changes in her (lower sats, activity level, her color) to call right away and he'd work her in to be seen.

I continue to learn so much through this journey. Fear creeps in often and I find myself praying more lately for comfort and protection over Maddie's heart. I'm so thankful she's done so well, but there are days that I'm waiting for the other shoe to drop...and this is no way to live. I am not a good mother or wife when I'm in this mindset. I'm distracted, short-tempered and negative. So when I find myself in this mood and way of thinking, I choose to be grateful and to trust in Him. I try to focus on "right now" instead of borrowing trouble and worrying about something I have no control over. I do have control over how I handle this and what I consume my mind with. Most importantly, I want Maddie to have an example of strength and reliance on His promises. She lives with this and I pray she can live courageously and with trust in the One who made her this way. 

"Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand." - Isaiah 41:10

Fontanniversary

1 year ago after her Fontan surgery, in the Cardiac ICU

Today, playing in the mud at home

Besides having a busy day with preschool pool parties and watching big brother at his Kindergarten program tonight, Maddie and I spent some time talking about this time last year. I shared with her pictures from the hospital. She was very quiet...looking at every detail in the pictures, asking such sweet and innocent questions and trying to take it all in. I asked her if she remembers and all she would reply was: "I don't know."

To her, today was like any other. She doesn't remember this day like I do. I thank God for this. Today marks a new beginning...our daughter was given the chance to be healthy, pink, and given the opportunity to live such a normal life by completing the final stage of her heart surgeries. We wore pink bracelets during that time that said, Maddie is My Heart Hero. And that she is. Today is an emotional one as it marks the day that we made it to the finish line.

I can't help but think about all of the people who have made today possible. Thank you to her awesome medical team and especially to our family for helping us get to this point. It's taken a village. What a journey these past 4 years have been but such rewarding ones. Maddie Grace, you've taught and inspired and you always keep me looking up. Happy heart day sweet girl.

Cardiology appointment, check!

This week is going to be a crazy one and to kick it off, we drove over the pass this morning for Maddie's Cardiology and Nephrology appointments at Children's. It was a looooong day but well worth it. Getting good news never gets old. Her check-up proved what we've been seeing from her, great results and a growing girl!

Maddie has officially 'graduated' from Nephrology...no need to see her as her kidneys have grown well and are finally similar in size! She doesn't appear to have the reflux as she has shown no symptoms and from her renal ultrasound, they don't see any signs/damage from this. She weighed 42 lbs. and is 42 inches tall (80th percentile).

As for her heart, she's finally hit the 90's with her O2 sats, working her way up from 84-88% since surgery. She actually satted 92% in the clinic today! Whoo-hoo! Her echo showed really nice heart function but also two collaterals...crazy enough, these collateral vessels Dr. Chun believes are helping her out this time around. One is off of her aorta (we knew this one was there from her cath last February) and the other lies on the backside of her heart. They don't seem to be bothering her too much, so we won't be intervening until they cause problems. To see them on echo does mean they are getting some substantial blood flow though, in the past, her collaterals weren't large enough to see on echo. Her pulmonary arteries (always have been on the small side) looked fantastic! They've grown!!! As far as her fenestration, (the small hole that is in the conduit) it's still open and she's still depending on it. I was crossing my fingers that it had closed on its own (higher sats) and she wasn't needing it anymore but Maddie just needs that extra "pop-off" to help relieve pressures in her heart. I'm glad shes's getting a bit of a break with having the fenestrated Fontan but we also talked that it would be nice to close it someday. Having it open poses a higher risk for stroke from a blood clot. She would also gain a few more points in her sats with it closed.

And guess who's Fontanniversary is this Thursday? It will be ONE YEAR on the 24th since our sweetheart's last, and hopefully final heart surgery. Wow. I feel beyond blessed and watching this girl thrive is a daily reminder of God's goodness and grace.

cardiology check-up

Maddie's 6 month Fontan follow-up was Monday in Seattle. She had a full work up at the hospital and everything looks great! Dr. Chun was very pleased with her echo, he was able to see her PA's and the Fontan site, thanks to clear pictures and a very cooperative little girl. It's usually difficult getting clear shots of her PA's, due to the scar tissue from past surgeries. Her fenestration (hole created in the conduit) is still there and she seems to be very dependent on that so no hurry on getting it closed anytime soon. Dr. Chun feels like we should address it though in the next year, in which she'll need to have another heart catheterization in order to close it. Her 02 sats were 85-88% which is where he believes they have leveled out at. We had hoped she'd end up more in the 90's but with her anatomy and likelihood of forming collateral vessels, her sats are on the low side for a post-Fontan kid. Fortunately, it doesn't seem to bother her a bit and since she's as high as she's ever been oxygen wise, her body is loving it! Maddie has had more activity, color and just overall better health since her surgery so we'll take the upper 80's and not complain :) She weighed 39 lbs. and was 40 inches in height--yes, she's grown a bunch since her surgery too. I can't believe she's in the 80th percentile for growth! Miss Maddie doesn't need to be seen again for 6 months, unless something comes up. When I stop and think of all she's been through this year, it's truly amazing and reminds me of how remarkable that little heart of hers is.

this little turkey...

likes to sleep all day and wake up every 2-3 hours at night. Yes, we're still on that newborn-type schedule. I don't know if you can predict "personality" at 1 month old, but this guy knows what he wants, when he wants it. There is no "talking him out of it" and he can be impatient and fussy or super sweet and cuddly!

We had a really relaxing Thanksgiving at Grandma and Papa's...enjoying family, good visits and of course, lots of food!
these 3 cousins have become quite the trio--they are much louder than I ever remember the little boys. They sure know how to have some fun! And, no, we did not coordinate their outfits, turned out so cute though!
Our cutie pie Sam was one month old last week!
And big sister was 6 months post-op from her Fontan surgery on Thanksgiving day. So, so grateful that a half-year later, we're here. I'm thankful for this...and so much more.

Independence

Today has a new meaning for me...not only are we celebrating our country's freedom but our baby is not a baby anymore. She has found her independence and Maddie's quite quickly turned into a kid. I can honestly say we've seen this transformation happen in the past couple of weeks since her surgery. Maybe it's because I've let down my guard with her, letting her play like a typical 3 year old, or maybe it's because she doesn't feel as lousy and tired from the lack of oxygen her body was so used to getting by on. I assume it's the latter. But watching her par-take in the fireworks we had last night for Nany's birthday party defined independence. She played hard with her brothers and cousins, running and carrying on with her precious half-heart like she has a whole one. She kept up.

I found myself taking big sighs of relief watching her. She's as healthy as she's ever been and it will only be 6 weeks tomorrow since her heart and little body endured surgery. The fontan has done wonders for her and for our family. I'm a fontan fan. Simply put, Maddie is more liberated and it's a joy to witness. I'm so glad we have a baby coming this fall though...I've turned around and this little girl is quickly growing-up. Her heart is happy and so is ours.

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.

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.

Update: Day 8

Still in the rough patch--no puking today but no poop either which = pain, even after treatments of Miralax (which she's been getting for 4 days now), a suppository and Biscycodal again, and another pill this evening called Lactulos which is supposed to work like magic. So far, nothing. She hasn't had any energy today and has refused to walk. We forced her this afternoon and walked down to the bath tub for a bath. Boy did she need that. Unfortunately, still can't get the rats nest out of her hair. I accidentally pulled out her IV so she really needs to drink and eat to keep hydrated now. After all of the push for one, go figure, I mess up and pull it out.

The best part of today was getting her 2 remaining chest tubes out. They haven't drained for a couple of days now so they were pulled. We have also made the wean from the oxygen, she's satting in the low-mid 80's on room air. We're hoping that once she's healed up, her collaterals quit forming and "die off" with her new blood flow, she'll sat closer to 90%. We may not see this though for a few months. Since she has a fenestrated Fontan, she still has some mixing of blue/red blood as it creates a "pop off" for her heart, relieving pressure and allowing her heart not to work as hard when it's stressed (like if she's sick, with exercise, crying hard, etc.) There is an alternate route blood flow can take to the lungs but this blood isn't oxygenated so it mixes with the oxygen rich blood from the lungs.

So she has no wires, cords or tubes hanging from her anymore! If she felt better, I think she'd care. We were much happier than she was about it all. The plan is to get her eating and drinking again but we don't think this will happen until she goes. I looked at her stomach x-ray and it's built up way up into her belly, just under her diaphragm. She's only on Tylenol now (Oxycodone will just make the constipation worse) so the pain from this has to be unbearable. Plus she only had open heart surgery 1 week ago. Cruel.

She had two chest x-rays today and we haven't heard anything so must be ok. Now just waiting for tomorrow, the talk is discharge in the next day or two depending on her bathroom issue and pain control, as well as how all of her tests/exams go. She's so done with this...when asked if she's in pain, she always says no, just so they don't bug her. The chest tube removal was a bit dramatic, even with getting some IV Versed. She was so silly right before the procedure so we had a few minutes of our happy girl. Thank goodness we have our same day/night nurses, the consistency of care has really helped in her recovery and keeping our sanity. I have so much respect for these nurses...12 hours shifts and complete care for the children and their families. They never sit down or get a break. What a wonderful, demanding profession and we've been so lucky to have the most talented ones here.

I don't know how people do hospital life for months at at time. Our neighbor has been here 9 months with their heart baby. Even with difficult times, we are so fortunate to have had a fairly smooth recovery with all of Maddie's surgeries. Please keep our girl in your prayers, this isn't getting any easier for her and she just needs some relief and comfort from it all. HOME is the only remedy for this.

Aunt Lesa & Grandma Allred went back home today...and daddy drove back over late last night

this is how she's been all day

Jessica, our sweet, caring night nurse

Update: Day 7

What a day...we knew we'd have bumps in the road, this day was a big one and probably our toughest one yet. Maddie started acting "off" last night with being clammy, sweaty and also irritable. She did not eat or drink well yesterday or even the day before. I was concerned with her increased heart rate through the evening and last night but reassured that it wasn't a rhythm thing. This morning as I woke her up for her 5am chest x-ray, she was sweaty, clammy and her eyes looked awful. By 9am, it was evident she looking dehydrated.

I expressed my concern to the charge nurse and she agreed but when she had the Nurse Practitioner come in, she didn't conquer with the rest of us. By this time, Maddie had thrown up her meds (diuretics and pain meds) and was looking just horrible. We had to add an extra oxygen mask to her to get her sats up and she had absolutely no color. We have known she's backed up so it was a combination of the constipation pain as well as being on the dry side with no pain meds on board. To sum it up, she's vomitted and dry-heaved a few episodes today (anytime meds or food hit her stomach) and she was so lethargic, eyes sunken in and dark, and just not herself AT ALL. Her blood pressure was low, heart rate was high and keeping her sats stable was challenging at times. She never could get out of bed today, when we tried...she had a desatting/vomitting episode so we had to get right back to bed. Maddie was completely shot and just needed rest. After getting another suppository and an oral med to help with the constipation, she went a little bit. There is still more though and she's got a big job to do. Also needs to start eating and drinking again as well as managing her pain with just Tylenol and Ibuprofin, since the Oxycodone is only going to make trying to go to the bathroom worse.

So....12 hours later, an x-ray to confirm that yes, her stomach is backed up with stool and causing much pain as well as YES, she's dehydrated, an IV was finally put back in and started with maintenance fluid and some pain meds. With the Fontan, the docs try to keep kids fluid negative and on the dry side and unfortunately, Maddie got a little too dry as well as the pain from constipation. At one point, the NP had talked about putting in an NG for nutrition- I was not happy about this since I KNOW she for sure wouldn't keep anything down with that tickling her throat and the spiral down would just continue to accelerate.

The nurses have been so awesome, listening to my concerns and advocating for Maddie. She has only showed them she's a tough, go-getter so for everyone to see her this way today was just a big shock and a set back. She was a completely different kid and it was a very hard day in her recovery. Luckily Grandma Allred and Aunt Lesa were here with us, it would have been really tough to be alone and having to see her this way. The only perk is I'm not the enemy anymore. Hoping for a better day tomorrow and praying for poop!

Update: Day 6

Today was a busy day of visitors. We enjoyed seeing everyone and Maddie's one spoiled little girl with all of the cute presents she's been given. Thank you everyone! First Aunt Kerry and girls stopped back by just to check on us and touch base before they headed back home. As they were leaving, the Maxwell family came. Maddie loved seeing her best heart buddy Teagie and watching the new Tinkerbell movie with her for a bit. Right as the Maxwell's were gathering up their kiddos, Grandma Allred, Aunt Danyel, Randi and Jill arrived! By this time, Miss Maddie was pretty shot. She cuddled right up into Grandma's lap and took a nice snooze. Danyel took some cute pictures of Jilly and Maddie but I can't get them off of my phone to post. Now Aunt Lesa and Grandma Allred are staying here to pinch-hit hospital life and get bossed around by me. My mom had went home yesterday. I don't know how people do this without the support of family. We never even have to ask...it seems everyone's willing and ready to help out where needed.We're so blessed with family.
So then the boys left with Daddy. This was a very sad time for me. I already really miss them and looking at this picture just makes me cry. Later this evening, Maddie asked where Daddy was and that she wants him here. I do too- we make a hell of a team but he needed to get back to work on the farm and get things squared away before coming back over again.
Tuckered out after all of her company and from cruising around the floor with her stroller and baby doll Molly. She and I spent some time roaming the halls this afternoon.
We dealt with some pain issues as well as this on-going constipation. She's yet to do the deed so our nurse gave her a suppository to help this out. Still nothing. Right before bed, she was clammy and very uncomfortable. She's not eating or drinking as well either, I don't blame her. This is no fun.

We did make some progress today--she got her left chest tube removed! Yay! It was always the one with the least amount of drainage so it's gone now, 2 more to go. Painful procedure though for her... the draining in the other two has really decreased so we pray they are getting to close to being pulled too. Her middle chest tube is all clogged with thick fibrous tissue (yucky looking) and has stopped draining. Hopefully it isn't causing a back up in there...she's no showing any other signs of this so I'm praying this one gets pulled tomorrow. The chest x-ray in the morning will be the tell all on the chest tube drama.

Maddie's least favorite thing to do now is take her meds. Throughout the day, she has pain meds every 5 hours now (2 syringes) and morning and afternoon she takes 2 diuretics, so this equates to 12 syringes of meds a day. She was a lucky girl before surgery because she was only on a baby asprin a day for medications...so she's not keen on the meds. We're trying lots of tricks, even pink bubblegum ice cream to wash it down with tonights meds. She needs something to control...unfortunately, she really needs to take the meds too. Wished she'd think of something else to fight us on, five hours rolls around way too frequently around here.
The little boys spruced up her hospital room today- hanging up posters and coloring/drawing pictures for her. This is our space. We lost our neighbor too, so I'm ready for bed in a quiet room tonight!
The goals before coming home are this: she needs to eat & drink more, needs to go #2, needs to have minimal to no chest tube drainage before pulling the other 2 chest tubes, needs to keep her sats up on room air. It's do-able.

Update: Day 5

"Turbo" is the nickname Miss Maddie has earned around here. The girl is a go-getter with her walking, as long as we have her up and about with the right combination of pain meds. She had a rough day off and on with pain today and slept more than she has in a couple of days. Her drainage over night was high, especially her right chest tube but today the numbers are improving. The total for today's output was substantially less than previous days, although her chest x-ray hadn't shown much change. She is peeing more and this has really helped get the fluid off and ultimately, getting her up and moving has probably helped the most. She lost her last IV today since the Toradol is only given 3 days post-op. She doesn't need Prevacid anymore either so no need to keep that line in, all the meds she's getting right now are taken oral.

My mom stayed the night with Maddie so Bryan and I could go back and be with the boys at the RMH. Maddie had a great night and we got some great rest...don't know how much Nany got though :) This morning we tried conquering the rat's nest in her hair and made some progress but after her crying and eventually throwing up, I decided it probably wasn't worth it. She was in need of some pain meds at the moment too which didn't help. Our nurse, Stacy, french braided the matted mass right into her braids! We have loved our nurses here on the floor, luckily getting the same ones day and night for a few days now. Jessica is our night nurse and so sweet too, they both are very good with Maddie and can get her to do things that I can't. It's a real team effort around here! They are awesome to work with, always making sure we're set with what we need and making sure their princess patient is in good shape.

Aunt Kerry, Cindy and Kaylee came to see us today and help out. It was fun having them, they got to experience "Turbo's" crazy walking, helped hold drain tubes and oxygen cords, and we all enjoyed a fun time in the playroom downstairs. Maddie loved painting and playing with the bubbles while we were there. It will be a fun place to visit daily and change of scenery. Kerry also finished up some of our laundry, took the boys swimming this afternoon and even brought us pizza for dinner. It's been nice having family come visit and it lifts all of our spirits.

The best part of the weekend has been having the boys here. They have been so great for Maddie in her recovery...perking her right up and giving her a sense of home by being here. It's a challenge for her too, which is good. They love her so much and watching them grow through this experience will be one of the most rewarding parts of being their mom. I'm so amazed by Jace and Caden, their empathy, understanding and love for their baby sister.
After her detangling, cleaning up and pain meds
Pink toes! Haven't noticed her nail beds so much but the ends of her toes and fingers are so much pinker, as well as the bottoms of her feet! She often is rubbing the tips of her fingers together...I wonder if they feel differently with the higher sats and perfusion???Maddie with our favorite day nurse, Stacy. Maddie sees the same Pediatrician that Stacy grew up with, Dr. Milnes! She's pretty, funny and has such a kind voice...she and Maddie are good pals.
Our entourage heading to the hospital playroom. It's a long ways and required some wheels.
Painting was her favorite past time today