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

Update: Day 4

This is only post-op day 3 (I started counting the days after her surgery day) but it feels like day 13. Time in a hospital is so bizarre. Maddie's had a pretty good day today. Here's the low-down: she's still putting out lots of fluid from her chest tubes, especially her right pleural chest tube. LOTS from this one. She's not getting any of them pulled yet since the output is staying the same or more each day. She did get the dressings changed around them but insisted on "pink" tape so the nurse decorated the clear bandages with stickers for our girl.

Her chest x-ray this morning showed more fluid accumulation in her lungs so they sent us back down to ultrasound to try to differentiate what type of fluid it is and whether her right diaphragm was working. Thank goodness, it looks like the diaphragm is not damaged from surgery but the bottom of her right lung is just collapsed. They're adding another diuretic now and pushing us to get her moving even more. We've been advised that we can't push her enough. Cruel but I guess it's true. The ultrasound was very painful for her since they wand right under her chest tube sites...digging and pushing. Ouch. Her pain meds were starting to wear off so she was unhappy but couldn't cry since it hurt so bad. She just pants with her breathing, red, sweaty face and eyes so wide with pain. It's hard to watch her go through so much and it's so not fair. But when you spend enough time in a Children's Hospital or even Ronald McDonald House, you see that your child's illness is a "piece of cake" compared to some. It can be depressing seeing so many sick children.

Shortly after getting back, getting her pain meds in and resting a moment, we got her up and walking! She cruised!!! I was waiting for a very wobbly, unsteady girl but not this one. I think she thought of it as a way to bust this joint, even with tubes, wires and an oxygen cord. Bless her heart. She walked about 15 yards her first time. She also took a walk this afternoon, which she wasn't so eager about. We made her stand for awhile too and she was so mad. We really had to make her do it. But the doctors keep telling us that this is what she needs and will help with the collapsed lung as well as her chest tube drainage. This is when being the mom is not easy...luckily I have a dang good partner to tag team this, Bryan's awesome with Maddie. She's been sleeping for a couple of hours now and unfortunately, we have to wake her up for her drugs. We don't want her pain to get out of control. Tomorrow we'll deal with her tangled, matted hair :)

We had our prenatal echo for baby #4...everything heart-wise appears well at 16 weeks 6 days! Baby is a wiggly one and seeing that four chambered heart couldn't have brought me more joy. Loved getting to chat with old faces too, even though those faces were the ones who broke the news on Maddie's precious heart, they do hold a special place in my heart. Mike & Lesa brought up the boys this evening...so nice to see them and Maddie's loved all of the attention from everyone! Thanks for the yummy homemade chicken noodle soup from grandma and for the precious cards from Jace's 1st grade classmates! We loved spending our evening with Mike, Lesa, Savanna and Boo and watching Miss Maddie cruise around with her shopping cart! She made some serious laps around the floor this evening!

explaining the Fontan

Thanks to my friend Jesse who posted this on her blog...it is a great, simple explanation for the surgical repair Maddie's had to endure.

"Dr. Francois Fontan first performed the Fontan procedure in 1971 on children with tricuspid atresia, or lack of a tricuspid valve. Fontan redirects venous blood from the right atrium to the pulmonary arteries, without pumping it from the lungs to the heart.

The Fontan Procedure is a palliative surgery; in other words, it doesn’t focus on curing the disease, rather, it reduces the symptoms and severity of it, resulting in an improved quality of life for the patient. It’s generally performed on children with complex congenital heart defects. Specifically, it’s used when a child only has one effective ventricle.

The Fontan is typically done as a two-stage repair. The first stage is referred to as a Bidirectional Glen procedure, or Hemi-Fontan. In this stage, oxygen-poor blood is redirected from the upper part of the body to the lungs. The pulmonary arteries are disconnected from their blood supply and the superior vena cava is removed from the heart and directed into the pulmonary arteries. The inferior vena cava transports blood from the lower body and remains connected to the heart. This redirection allows the single ventricle of the heart to do much less work. The second stage is known as Fontan completion, and it also redirects blood from the inferior vena cava to the lungs.

Although there are many different types of Fontan operations, they all serve a common purpose: to cause one effective ventricle to pump oxygen-rich blood to the aorta and into the body.

Patients who undergo Fontan surgery require life-long management to address any problems that may occur, such as heart rhythm issues, a weakened ventricle, or blockages and/or narrowing in the Fontan circulation. In many cases, children who undergo these procedures will require some form of Fontan revision surgery later in life.

It’s difficult to predict exact outcomes for Fontan children—in some cases patients will be able to participate in sports and vigorous activity; however, others may be severely limited in terms of exercise. Because this procedure is still relatively new, there are still many questions as to how well single ventricle heart/Fontan patients will fare as they enter their 30s and 40s, which is why ongoing monitoring is so crucial."

Update: Day 3

The main focus of the past 24 hours has been getting the "right" coctail for pain control. She just went off the morphine drip iv she'd been on since surgery and pain is being managed with Toradol, Tylenol with Codeine, and Oxycodone now. We still have the backup of morphine boluses if needed. So far, this is working :)

Her spirits are up today due to the fact that her pain is being managed better as well as she's been eating and drinking some. She's taking Miralax (hopefully she'll be able to poop soon) and Redenidene (for tummy troubles). She's down to 2 liters of oxygen and is satting 85. She had labs this morning and did not enjoy that poke but they are so good here. Children's staff is helpful and awesome. The major achievement today has been getting her moving and not just confined to bed- at 6 am we had to take her down for a chest x-ray and since she has 3 chest tubes, oxygen and a medicine tree, it took 4 of us to wheel her down there in a wagon. Her x-ray showed a pleural effusion in her right pleural space but the team felt it's small enough that the Lasix she's on should take care of it or her body will just absorb it. The movement from all of this action also caused her to dump 120 mls just from that right chest tube. This is a ton! We've learned that her drainage is moderate, some kids put out a lot more and some are less at this point in recovery. We'll take the average chest drainage output. She still has all 3 chest tubes in but lost her morphine drip thru iv late this afternoon. This is great since she's been showing some side-effects from the morphine- ITCHING. Luckily daddy took on the duty of itching her, she looks like a little pup, stretching out, moving her arms with eyes rolled back. He's even sang his own rendition to her while he does this itch therapy--"itchy itchy spider." She took some Benadryl for this, hopefully it will help.

Even though Maddie has done amazingly well just 48 hours post-op, this has not been easy at all. It sounds all great moving out of the CICU but was difficult for her. Until later today, she has been so miserable, sad, depressed and irritable. Nothing made her happy and she was so uncomfortable. Luckily, with this combination of pain meds, she's perking back up. I've taken the brunt of her frustrations. As most of you know, Maddie is a mommy's girl. She and I are very close so I guess it's natural she'd take it out on me. I'll take it if it helps her get better. She's yelled at me a few times to leave her alone, she's told me I'm hurting her and to stop it, and today she shared with Nany while I went to take a nap that "my mommy is so mean to me". Yes, I've been teary over this. It's hard not to have my happy, chatty Maddie. I've hated seeing her this sad and in this much discomfort. I've gotten plenty of scowls and glares. She does let me cuddle with her, kiss her and hold her hand though. Just so happens that I am the one to explain to her what the nurse is asking, gives the directions/medicine or helps hold her for it.

At rounds today, the team explained that in order for these kids to have a smooth post-Fontan recovery, they need to be pushed. They told us she needed to get out of bed today and sit in a chair, sit up in her bed as much as possible to help move the fluid around and out. This also helps them with expanding their lungs and breathing more deep, which in turn helps with the new Fontan circulation. We've listened to their orders and Maddie's been moving, sitting up and responding to these demands quite well. I'm so happy for this. She tries to move herself for comfort, has sat up on her own in bed without any support to grab things and even scoots herself back up when she starts sliding down the bed. We're so proud of her. This should help in her recovery. We also asked if she's unordinary for a 1 day CICU stay post-op and no, this is not uncommon. This is how Seattle Children's prefers to do their fontan and is the goal: get them extubated before leaving the OR and onto the floor as soon as they don't need that life/death care that only the CICU can provide. Once they lose certain meds and lines in the CICU, they push them out. That is what happened to Maddie...she's always been quick at these things, it shouldn't have surprised me. She is such a trooper and tough little girl.

We have been able to chat with the boys each day and Carly helped set us up on google video so we could talk/see them live on the computer. The boys talked to Maddie this morning but she wasn't feeling so hot at the time and just sat staring at the computer, tears welled up with a very sad expression. She asks about the boys and is definitely missing them. Of course they're having a blast staying with the Busters and Pa & Grandma Allred. Jace had his first baseball game of the season tonight and Aunt Lesa videoed him and sent it through our cell phones to watch his hit. That was so nice for us. Cade got to spend some time with cousin Randi at Grandma's today which was what he's needed. With Maddie being on "house arrest" this past month, poor Caden was too. Preschool was over and we minimized his contact with kids since I was paranoid of her getting sick before surgery. Jace's teacher sent us a wonderful email last night about how they'd been sharing character traits in his 1st grade class and Jace shared that Maddie is his hero, her best trait is her "sweetness". He shared with his classmates about his baby sister and was so cute about it. He even shared that Maddie doesn't even have to use the toilet in the hospital....her pee just goes in a tube. He was pretty impressed with that foley catheter I guess. So funny. We're looking forward to seeing them tomorrow. I know that it will be great for her!
Sitting up in bed today- this was major progress!
the three chest tubes...draining the space around the heart and lungs is an important part of the healing progress after the Fontan. One IV left, incision looks good, and leads to monitor heart rate, O2 level and respiratory rate
each chest tube drains into one of these boxes. The color has changed from dark & bloody to a more yellow, clearer fluid which is a good sign of healing after surgery. The drainage is calculated throughout the day.
Sitting in a chair on Nany's lap!!! Mom brought over some of Maddie's books and read them to her...she loved it and perked right up. Mom has been a wonderful help here--running to grab stuff for us, doing laundry, sitting with Maddie while we go take a nap or eat, spoon feeding Maddie (she only likes Nany's style on this one) and grabbing coffees and snacks. We've been laughing that she's our personal assistant. It truly take a team of people to do this, especially right after surgery and moving to the floor. Tomorrow she'll be here while Bry and I head over for our prenatal echo for the baby. I'm 16 weeks along and look forward to getting this over with, it will be with Dr. Meg Vernon, same doctor who diagnosed her! We love Meg.

eating supper tonight- her favorite, noodles!

Update: Day 2

Wow, a lot has transpired over the past 24 hours. A day ago, Maddie was coming out of the OR and we were getting ready to see her. Today...get ready...she's been moved to the floor. Yes, I know. We're shocked too. Happy but we were not ready for this. But today has not been an easy day by any means. She's miserable--she has cried, fussed, coughed, wrenched in pain and begged for help. It's sad to watch and been a real balancing act on her pain meds. But she reached the criteria for moving out of the CICU by noon today and they needed the bedspace. The transfer process took about 2 hours.

So I'll back up, yesterday evening went pretty smooth. My mom stayed with her while Bryan and I went to dinner and she actually smiled once when we were gone. The smile came when my mom and our great nurse, Sherry told her that her heart was fixed. Bryan pulled the night shift last night from midnight-6am. I had a great nights sleep, which now I admit, I needed. He hung out with us a bit this morning, then went back to sleep at the RMH around 10. During the night, she did fine. Slept off and on like she had all day (hour asleep then slight wake-up and doze back off.) He said she did get pretty worked up when they came to do her chest x-ray though. The nurse we had, Jess, taught her a deep breathing technique since her sats really dip when she's upset (into the 60's) and she has been using her "closed mouth, into the nose breathing" technique since. She's a smart little thing and responding well to our requests. She's hated her nasal cannula but still needs it. She's on 3 liters of O2 and satting mid 80's on this. Right now, she's finally sleeping and her sats are actually 91 right now! Have never seen this and brings me to tears, even though she's on high flow oxygen.

Late morning she had her IJ line removed from her neck, her ART line in her left hand (yay, she can suck her thumb now), pacer wires removed, and her foley catheter (for urine) removed. The first three of the "de-lining" procedures took suture removal and luckily she was loopy enough but it still was very uncomfortable and her anxiety level was definitely increased. Lots of tears, holding of breath, monitors beeping and she was just pissed off. It's hard for her to understand "why" these things have to be done. Luckily, we had our favorite CICU nurse, Anne, who took care of Maddie her first week of life here at Children's. It's so nice having this continuity of care. We love Anne. But she's had a few tough moments besides this- chocked on her milk/pediasure this morning and now she's leary of drinking again. She did eat a whole popsicle, a couple of bites of pudding and 4 bites of mac & cheese for lunch. We haven't gotten her up yet but they'd like her to do that soon, so maybe tonight we'll get to hold her. She did rip off her nasal cannula (which she's hating) and it caused a pretty icky bloody nose and lots of coughing. RT added a bit of humidifying O's to her as well. After my idea of changing it to a smaller cannula, she's been more content with it and without that oxygen, her sats stink. We're hoping with healing, they will keep coming up and we can start the wean off the oxygen. She's draining a moderate amount from her 3 chest tubes, 483 cc as of 6am this morning. Currently she's sleeping peacefully and even sucks her thumb now and then. It's good that she's resting and I think I'll do the same. Thanks for the prayers, they're WORKING and please keep them coming. God is so GREAT!!!

Fontan Surgery Update: Day 1

Update #6 8:30pm:

She's doing remarkable. I'm completely amazed and crossing my fingers with her recovery so far. She's in and out of sleep, cries out a silent, whimpering cry here and there, opens her eyes for brief moments with tears, and her first whispers to us were "I am hurting"...she's been great at communicating. When we first got in here to see her, we were talking to her and rubbing her head and I said, "Maddie you are such a big girl, we're so proud of you" and she nodded her head. Brought us both to tears. From the medical standpoint, she's on drips of: Milrinone (for helping her heart squeeze & dilates vessels), Dopamine (blood pressure med and was just turned off!), Morphine (a drip for pain as well as a few boluses throughout today when she's told us she's in pain), maintenance fluid, platelets (her blood needs some help after draining through chest tubes and from surgery trauma), ffp (fresh frozen platelets to help clot), as well as calcium chloride (helps with her blood too, replenishing what she's lost). She has three IV's- IJ in her jugular, atrial in her left wrist (which is sad because she sucks her left thumb and it's boarded up) and another IV in her right arm. There are three drain tubes, the central one is good sized but the left and right sided ones are smaller and pliable, since these are the tubes usually left in for drainage for a while. Her drainage is good, she's drained an average amount but the color is starting to change from bloody to a clearer color which is a good sign. Dr. McMullan was very pleased with how her surgery went. She was on the heart/lung by-pass machine for a total of 88 minutes and cross-clamped (her heart was completely stopped and she was cooled to a hypothermic state) for 14 minutes so that was great. He was able to put in an 18mm conduit (which is like the size of my pointer finger) and she has a fenestrated Fontan so her sats may stay in the upper 80's-low 90's. As I'm typing this, she's satting 84% on 2 liters of O2 from a nasal cannula. HR is 104 and blood pressure is 88/54. Throughout the afternoon, she's had a few "sponge sticks" of water and we tried a popcicle but she only licked it a couple of times and was shot. She's just really wiped out but we're so glad she's resting and not fighting this. Knock on wood.

McMullan said that when he began to clear everything out of the way of where he needed to get to on her heart, the AVM collaterals she has looked like Medusa, which made us laugh a little. He even added, "No really, her heart looks like it's sporting dreadlocks." Crazy to think that her little heart has tried so hard at creating a solution to her low oxygen levels and getting blood to her body in other routes. It didn't really like the Glenn flow. These vessels are pesky (she has some coils in some already) and he did have to remove/ligate some of them in order to operate. We're hoping that with her new circulation and blood flow, they will quit developing. Having higher sats after this surgery should help too. He did mention that her pulmonary artery is still narrowed and he tried to attach the gortex shunt in this narrowing area to promote more blood flow and growth to the artery. But overall, he was very pleased and she tolerated everything really well. She had a time bringing her blood pressure up but not anything too alarming. She also ran a little fever post-op but that has resolved itself so far. Her numbers look really good and we couldn't be happier. We're so thankful for the outcome so far and know in our hearts that the many prayers said in her behalf must have something to do with this. Thank you for all of your love, faith and support!

Update #5 4:05: We've been at Maddie's bedside for a couple of hours now. She did really well & came out of the OR extubated! Now just sleeping with times of waking up- will update more in a bit. I'm needed a lot by her now.
Update #4 12:25: she's off by-pass & doing well. Waiting to meet w/ Dr. McMullan, her surgeon.
Update #3 11:20: We never were paged but got antsy and went to ask the ICU desk if they had any updates for us. She was put on by-pass at 11:00 and surgery was going well. Still a few more hours to go but we're about half way through. Passing time with everyone here is great, lots of fun conversation.


Update #2 9:00: We were paged that they were starting the surgery and she was doing great. Waiting for another update. We have lots of family here (Grandpa & Grandma Allred, Ba & Nany, Uncle Mike, Aunt Lesa, cousins Savanna & Braydon, Uncle Ryan & Aunt Jessica, Trent and Susie (Teagie's mom and dad!) and our Pastor, Eric Frey came up too.
Update #1: We got up bright and early, had Maddie here at 6:00am and went back with her to the "zones" at 6:45. She was sleepy still and happy to get a stuffed animal Seahawk dog at admission. Versed worked well and they allowed me to walk her back at 7:30am and be with her while they put her under with the scented strawberry gas. The OR was amazing... so was our girl.

Pre-Op & a ROYAL send off for the princess!

Today was a very long day of pre-op appointments and Maddie did spectacular which makes tomorrow even a bit more sad for me, she was so trusting and sweet through all of her exams, pokes, prodding and visits with medical staff. She had a chest x-ray, EKG, vitals, sats were 76% and weight was 15.1 kilos. The weight was a big "whoo-hoo" and major goal achieved before this surgery. We had prescriptions to pick up and lots of odds and ends to take care of. We did get into the Ronald McDonald House today, which is great since it's so close to the hospital and accommodating to families. We're at House A, which is the same one we stayed in during her Glenn surgery. Maddie is still scheduled for the 1st case tomorrow morning. We need to be at the hospital at 6am and her surgery should begin at 7:30 am. I plan to update the blog if computer issues don't interfere (been having those these past couple of days).

Though I've had moments of sadness and guilt of having to put her through all of this, we're doing pretty good. We have our family here and we're so amazed by all of the incredible support we're getting from home, friends, and more family. Thanks to everyone for the wonderful facebook messages, emails, blog comments and posts, voice mails, texts, cards and gifts we've received. Knowing how much everyone cares about Maddie is such a huge blessing. And even more so, we're so thankful for the prayers on her behalf as well as for our entire family. We know the power of prayer. Thank you, thank you, thank you. This brings us more strength than you know.

After leaving home Sunday with our kids, we spent the afternoon at the zoo then went swimming at the hotel's pool. Ordering pizza in is always a hit since we don't have this luxury in our little home town. And speaking of that lil' country town... what a send-off my sweet friends put together back in Royal! It was a surprise and these pictures speak volumes of the love we felt from all of you. I was a teary mess. Maddie is such a lucky little girl. Thank you to our dear friends and families for lining our road, sending off 50 pink & red balloons and making those cute banners and signs for her. It was a parade fit for a princess! We are incredibly grateful for all of the kindness shown to our family. Ok, so now onto the pictures... thanks Jens for the great pictures and my mom took a couple of these too.


Shelli & Courtney, the 'masterminds' behind this covert operation! Way to go girls, we LOVED it and what a wonderful way to leave our beloved home town.

pictures!

My wonderful friend Michele came out on Thursday to take the kid's pictures. She's a very talented, sweet and supportive friend, and visiting with her was just what I needed that evening. Watching the boys and Maddie play around and pose was good for the soul too. I love these pictures...she caught their personalities and expressions just beautifully! These are our three to a 't'...

We're heading out to Seattle today. Tomorrow is a packed day at the hospital for pre-op appointments. Maddie's actually excited about going to the hospital now, after knowing she'll get to pick toys out of her treasure tote and that she'll get lots of popcicles after her surgery. I'm happy that popcicles and dollar store toys console her of what's to come at the moment. The joys of only being 3.