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.

In 1 week...

Maddie will be the patient and we'll be sitting in a waiting room, anxiously awaiting on news to how her surgery is going. I can't believe it's already here. I shouldn't be shocked, we've known this day would come (God willing) since finding out about her heart on January 8, 2008. The third surgery seemed decades away at the time, really over the past couple of years it's seemed so distant, due to the fact that we just looked enough ahead to prepare for the next procedure, next appointment, and tried keeping her healthy & gaining enough weight. We've taken this journey a day at a time and now she's ready. Her Fontan surgery is scheduled for early next Tuesday morning, May 24th.

I've been trying to keep really busy...doing odd-ball things like drawer organizing, making cute hospital gear for her (which my mom gladly took over because of my lack of concentration), changing the look of our blog, and planting more flowers than I'd intended to this spring. I've had a difficult time sleeping, due to worry and stress but also to the fact that Miss Maddie has had some rough nights to. She's been waking up crying & wanting mommy. I oblige every time because frankly, in a week, she'll be in a lot of pain and discomfort. If I can comfort her and love on her every night by crawling into bed with her or bringing her into our bed, I will. I've been looking at it as practice for the hospital and practice for my patience! So much for our theory of not letting our kiddos sleep with us! It's a habit I'm willing to break with her and we're getting really good at sharing a bed since I'm sure that's where I will be for the next couple of weeks...squished in a single patient bed with an understandably cranky 3 year old.

But how do you prepare? Of course, prayer fills much of my time. Throughout my day I find myself asking Him my many questions, pleas and asking for help through this. And my top concern and prayer, of course, is for Maddie. How is she going to do with all of this? Will she trust us again? Can we reason with her? Will she allow the doctors and nurses to help her without a fight? Will the Fontan work for Maddie? What if, what if, what if? And then I've realized that I am taking on too much here. This is out of my hands and my control, so again, I find myself asking Him to take my worry and my fears. I ask for the Lord's help and I continually ask for Him to take this. And so far, it's working. Today I got up feeling really refreshed and actually excited to get this over with. It's inevitable, we might as well just enjoy these days before hospital life and keep our lives as normal as possible. And thanks to our 3 children, I stay busy. This is what I will miss most while in the hospital. The mundane, ordinary things while at home with kids...cleaning up after them, attaching lego guys arms, laundry, helping them find toys, changing panties from accidents, making meals, and playing outside. Normal things are keeping me sane right now.

Maddie knows what's up with all of this, though we've tried to spare the details until just a day or two before the surgery. Unfortunately, she worries like me so I try to avoid telling her too early...why make her anxious any longer than she needs to be? She's always known her heart needs fixed again, she's seen several pictures of herself in the hospital during prior surgeries and procedures, and she's seen several of our "heart friends" pictures on the computer during their recent Fontans. She knows she has to go back to the hospital but doesn't know when. She just randomly brings up that she doesn't want any owies or pokes and she doesn't want to see the hospital or doctors. That's a tough one. I've just tried to explain that in order for her to feel better and not "tidered" anymore, run faster, and play like her cousins, she has to have her heart fixed and there will be a few owies but she'll also get to chose little toys from a treasure box we've made for being brave, and she'll get visits from everyone she loves while in the hospital. I've told her about the hospital's playroom and playground and she'll get to go on lots of wagon rides. This seems to suffice for now. This is the great thing about being 3.

I have a couple of books that we're reading this week as well as packet that Children's sent us with pictures of the hospital, familiar faces she may see, and it talks about having surgery. Child Life also sent us 3 packages filled with fabric dolls dressed in adorable hospital gowns, surgical masks, hair nets, gloves, syringes, bandages, tubing, gas masks, and medicine cups to play with. On Mother's Day, I broke all of that out and the big brothers had our basement rec room turned into quite the O.R and cardiac clinic. She enjoyed taking vitals on her baby dolls, putting on band aids, checking for fevers, putting them "asleep" with the gas masks, and listening to their hearts. It was therapeutic and really a wonderful afternoon. Having Jace and Cade play this with her made it much more fun. It's really been a normal part of her life as well as theirs, they were pros and I enjoyed sitting on the stairs listening to them. Though it's not typical that kid's this age know how to take blood pressure, stick on EKG stickers or tie a band on a dolly's arm for a blood draw, they've embraced this part of their lives. I'm so proud of them for this.

a catch-up post!

Easter 2011 Maddie & Jilly had fun playing with colored bubbles at Grandpa & Grandma Allred's Easter dinner
Kylie & Maddie at Nany & Ba's Easter dinner, we had on Good Friday this year

The annual Mardon Easter Egg hunt: cousins Kylie, Jett, Cade, Jace & Maddie

And now onto the kids...make sure to read the bottom of this post for some exciting news!
JACE:
He's our busy 1st grader. Finished basketball in February, what a fun season with lots of friends and my coach from high school spear-headed a bunch of 1st grade boys. It was so fun to watch, those boys really showed some improvement over the season. His claim to fame lately has been his joke telling ability...he performed (quite well for that matter) at the school's talent show in February, telling a few jokes to a crowd of 700! He moved onto soccer and we watched his games from our car since our weather this spring has been so crummy! Soon, he'll be playing baseball, which is his favorite sport. He's doing well in school, latest report card had us grinning from ear to ear and he earned himself a book at the book fair for his hard work, choosing "Predator Showdown". He and Cade have loved looking at that book, trying to figure out which animal claims victory over another. They sleep together every night, not in their own beds which are in the same room, but in our guest room. I like it so I don't mind; it won't be long that they'll want to share the same bed. Someday they'll use their cute bedroom. They'd rather sleep in the mix-n-match, undecorated, spare bedroom. Jace is a great big brother, constantly coming up with games and things to play for he and Cade, always including little sis in the mix, even if she's not up to par with what they're playing. He and Caden loved going down to the ranch for branding this year, they even got to ride a couple of calves. He's growing up too quickly!CADEN:
Just finished preschool! He's officially graduated and registered for Kindergarten this fall. I loved teaching Cade in preschool this year. He is a very bright boy and quite the perfectionist. Artsy too. He's constantly drawing pictures, using up stacks of sticky notes while sticking them all over the house. Cade is our kid that never says "I'm bored." He finds things to do, makes plenty of messes, and is so creative in his play. Being the middle child, he plays great with kids but unusually well on his own too. He plays on his terms, so I'm sure that's why he's quite good at self-play. We've been so impressed with how much he loves and cares for Maddie. He talks to her in the sweetest tone, getting her toys, tries to lift her onto her swing outside, helps carry her up the stairs. She's a lucky girl to have Cade as a playmate and protector these days, boy is she going to miss him when he's off to school this fall. He's enjoyed riding a few times this year, only on his favorite horse, "Sparky Boy". We enjoyed a fun spring break horse back riding excursion with Derek & Carly's family on the ranch. Cade was a pro. Oh, and I must mention how tough he is...just had his shots for Kindergarten, 4 of them in all and he didn't cry, not even one tear. Also had two warts frozen off recently and never even blinked. Yes, he's our superboy and determined to be the tough guy.
MADDIE:
Prefers to not be called "Maddie Moomer" anymore. She corrects us if we say this by saying, "my name isn't Moomer, it's Maddie Grace Allred!" She's really a talker, loves watching herself in the reflection of the oven or dryer, chatting up a storm as she brushes her hair from her face and smiles. She loves to help me...especially with dishes. Water, bubbles anyone? I'm yet to master how to incorporate her help, while still getting my chores done and without the watery mess. She loves packing around a stuffed animal or baby, rocking them in her rocking chair, patting and singing to them. She discovered that her baby doll's eyes open and close, and whoa, "Molly her baby" took a lot of naps yesterday. Maddie loves to take baths, has constantly had rashes this winter; her recent rash was ring worm, which we have no idea where she got it from. She and Caden are just getting over a lovely case of pink eye too. Her nose has been runny most of the winter/spring and she's been on a couple of rounds of antibiotics from ear infections this late winter. She's currently healthy (knock on wood) and on "house arrest" now, not venturing out in public or in any groups of people for that matter, so we're keeping busy at home with projects and play. We need to keep her healthy for surgery. She and I were recently baptized at our church, First Presbyterian, the week after Easter. It was such a wonderful evening and having this sacred experience with her will always be a special memory for me. She was precious and my heart was so full.
and our big news is...WE'RE EXPECTING!!! I'm 14 weeks along and baby is due Nov. 6th, though with the c-section, looks like sometime around Halloween. We're all very excited!