Easter

Happy Easter
This is one of our favorite Drs ... Rebeca we will miss you and look forward to seeing you Thursday. You have been a tremendous blessing to our family and we can not thank you enough for being such a great advocate of Hatcher's. Not only are you so talented in what you do, but are a wonderful person. Thank you for being part of our journey.

It has been a few days since I last posted .... so I thought tonight I would catch up. A quick overview ... Friday Hatcher went to the OR where they were able to pull out a huge cast from his right lung. It was huge and hard to believe he has even been able to breath with that thing in him. It was a fast procedure ... about 4 minutes to take it out, but because Hatcher is Hatcher they had a hard time trying to stabilize him and it ended up being about 3 hours. We are back in the CVICU and are doing a new treatment called TPA through a nebulizer in hopes of helping with the plastic bronchitis. It is so much for him. I feel so bad putting him through all of this. The treatments are every 3 hours and it feels like just when we are done with one it is time for another. He gets a mask sealed to his face and a tent over him. We all mask up for the treatments and it even makes my lungs irritated. Just having the RT guy walk in makes him scream, "I don't want a treatment." His phrase for the past few days is, "I wanna be done!" It is so rare to see plastic bronchitis and it has been hard having so many unknowns. He will go again to the OR tomorrow because his right lung once again appears to be compromised. On a better note I am so thankful that it is Easter... the bunny did find us, but more importantly what a wonderful hope the celebration of Easter brings. Our faith remains strong, thank goodness for unwavering faith, it is what we live on everyday. Hatcher just finished his 12am treatment and is asleep. I have been curling up on the end of his bed and he loves to put his feet on my face. I will gently move them but within minutes they are right back on. Oh my silly little boy, we love you!

Grandma Wheatley ... We are praying for you and a fast recovery! Hatcher and I prayed for you tonight and I told him you were in the hospital too. He said, "oh, that's too bad hu." That is too bad grandma, but know that we are thinking of you and love you to pieces!

Hard Day

A special visit form some Easte Bunnies!
These dogs are amazing in connecting with children, so gentel and loving.

This was so sweet they way this dog just let Hatcher look at him.

Yesterday was a hard day for Hatcher. It started out with a very unsuccessful blood draw with lots of tears from Hatcher and mom. When it was all said and done he was so sweaty and so were Randy and I. Then the normal checks ... x-ray and the vest with the nebulizer treatments that are now up to four times a day. The vest is often used in CF patients, but they are hoping it will help Hatcher and his plastic bronchitis. Yesterday he coughed up two cast and he had one this morning early around 1 am. It breaks my heart to see him struggle to get those out. We are hoping that today we will be able to make a plan... still not sure what the best approach is. It is scary to see our happy little Hatcher turn into a very sick little boy so quickly. Once the cast is coughed up he feels so much better almost instantly and his saturation levels go right back up. We feel at peace with all that he is up against and know that the Lord will take care of him. Last night was a long night. It was all I could do not to cry ... Hatcher must have asked to go home more than 100 times. He kept saying "I just want my cowboy bed mom, I wanna go home." He has been asking for Jaxyn too and says, "Jaxyn I need you." Last night before bed pet therapy came and after a rough day it was so good to see that smile back. We appreciate all the volunteers that come so faithfully to play the guitar, put on preschool, bring their pets, it makes hard days easier.

One Month!

The final diagnosis of Plastic Bronchitis was confirmed Monday. We feel blessed to be at a hospital that really works as a team to figure out what the best approach will be. They brought in other Dr's from different hospitals to help in trying to decide what to do. It is rare and complex so finding the best solution is going to take some work. It will be a bit of a waiting game to determine what we are going to do but there has been talk of going to the cath lab to check heart pressures, the possibility of a transplant, going home and living it out, and others I'm sure we haven't even heard yet. Although a little overwhelmed and not what we were wanting to hear, we know that the Lord will watch over us and ultimately the best decision for Hatcher will be made. If anything we feel so blessed to have so much support and encouragement from all of our family, friends, and even complete strangers ... it keeps us going. Special thanks to all of the doctors and nurses, Hatcher has some amazing people on his team! I'm starting to feel a little greedy with these miracles, but another one would sure come in handy!

Hatcher has been so lovey dovey ... kissin and hugin on Randy and I all day. I love it and can't seem to get enough!
Out of all the fun toys in the playroom Hatcher always goes to the barn and horses ... imagine that!

This is Hatcher's new bull ridding vest. He thought it was cool and even had an arm in the air till it was turned on and shook him for 30 minutes! What a good sport you have been through all of this!

Dyeing Easter eggs in the toy room!

I haven't even been able to think about getting out thank yous .... so for now this is a huge thank you for all who have sent goodies, notes, helped out with Jaxyn and been so wonderful to us. It sure makes the day brighter to know so many care!

I just had to post this! This is a picture of Hatcher's cast .... amazing .... icky ... very sci-fi! Here's to plastic bronchitis!

SUNNY DAY!

I think he might have a future on the Stanford golf team. We probably played the equivalent to an entire course today!

I planned a fun little early Easter egg hunt out in the court yard. Hatcher was so bugged that I wanted to take his picture and interrupt his hunt.

My mom got him a little monster making book. We have had fun with it. I asked him what kind of monster he wanted to make..."a cowboy monster." What a surprise.

The sun was out and it was a beautiful day! Hatcher is feeling so much better and is off of IICU status, so that means more playing and he doesn't have to have a nurse escort. They did tell us this weekend that they are 99% sure he has plastic bronchitis. Tomorrow we will have all the final results and make a plan. I am so grateful for days like today. He golfed, feed the birds, went on an Easter egg hunt, tried to do some jumping, blew bubbles, and gave us lots of loves! He has to be on the monitors a certain amount of time, so we would come back to the room and hook him back up. As soon as we did he would say, "OK guys, lets get outa here." Hatcher we hope we are outa here really soon bud!

Sweet Hatcher

Hatcher just woke up, it's about 11 pm and he had to get an NG feed started. He asked for a drink so sweetly and I tucked him in again with his puppy blanket. I tickled his head for a minute, kissed his nose and asked him if he needed anything. "yep, just watch me sleep." Oh how I am in love with this little boy! I went home to shower and do some laundry this morning. I had about 20 min till I needed to put the clothes in the dryer so I thought I would do some stretches and deep breathing. The next thing I knew was that is was 3pm! I never can go to sleep like that, let alone on the carpet, but I guess I'm exhausted! Randy is so good to be so involved and didn't even miss me. Hatcher had a good day, was able to ween down his oxygen and if you can believe it he has been on room air since 12:30pm! His sats have been good, running about 94 all day! I feel better about things today. Yesterday was overwhelming learning about plastic bronchitis. This is what they think he has. The final diagnosis won't come back till Monday from the lab, but the team is confident that is most likely what it is. It is not contagious and there is no cure for it. It is very rare but sometimes can happen after the fontan. We will just have to learn to manage it. We are learning how to use a nebulizer with 4 different medications he needs daily 2 times. There are cases that ultimately lead to respiratory failure but there are some that seem to pop up and then go away. Having both hypo plastic left heart syndrome and plastic bronchitis is almost too much for me to even think about. You can't even make up stuff like this! The plastic bronchitis forms in the bronchial and Hatcher's looked very string cheese like. It is not detectable on an x-ray and is hard to get out. Randy keeps telling me, just wait till Monday... it's out of our hands. I am grateful for his positve attitude. I cried tonight watching him have to do so many things a 3 year old or anyone should have to endure. One of my best friends Kenz, her sister Sadie (we actually went to Ricks together) has a little fighter of her own. I was on her blog and came across this conference talk below. I think she may have posted that just for me, thank you Sadie, it brought so much peace today. I do have to say that when Hatcher came back from the cath lab and was coming out of sedation he looked up and said, "hey guys, come down here." Randy and I both looked at each other comforted by the fact that he has angels watching over him. Hatcher, I pray that dad and I will be able to make the best decisions for you and that your team of doctors will know what to do. I'm so grateful for everyday I have with you even if its in your hospital bed snuggling because you don't feel good. I love the smell of your hair, the way you go ahhh after a drink of pop, that you hate wearing diapers in the hospital, that we get to keel by your bed at night and hold hands in prayer, that you miss Jaxyn, and that no matter what question a doctor or nurse asks you the answer is always no. I love you, sweet dreams.

Elder Kent F. Richards

SPEED BUMP!

This is for all of you Sehome Baseball players! I had Hatcher doing a little Sehome spell out...Give me a S-E-H-O-M-E, what's that spell, Sehome, who's gonna win, SEHOME! Keep believing guys and know that Hatcher is your #1 fan!

Passing the time with dad shooting hoops!

Now in isolation Hatcher has a new gun, syringes filled with water, he loves to shoot them!

Dr. Wright has to be one of the best Dr's around, thanks for fighting for our little boy! We love and appreciate all you have done for our family!

Hatcher flirting with the Stanford synchronised swimmers!

Hatcher won pirate eye patches playing BINGO! So happy LPCH has so many fun distractions!

10 am preschool, I love that all the kids are in their PJ's and so easy to please!

Another echo!

I think I spoke too soon! Last night Hatcher really struggled. He had a coughing spell that made his saturation levels drop. He was uncomfortable all night and had drs and nurses in his room most of the time. We are grateful they were so on top of things. My stomach sank when our nurse told us to prepare to move back down to CVICU! Randy came right over when I called to tell him what what was happening, and today we both were exhausted. He ended up on IICU status, which is intermediate, so that was a relief. He went through a bunch of test this morning with blood work, nose swab, new IV, and they sent off a sample that he coughed up. It seriously looked like a salamander, it was huge and nasty. There are a few possibilities of what it may be, one of which is very serious. I pray that he will not have another health issue to deal with, but we know it's out of our hands. He was put in isolation in case it is a viral infection (they don't think it is but wanted to be safe) which made for a long day with a 3 year old. He slept most of the morning and was so sweet this afternoon and evening. We played games, skyped sis, pops, grams, and they even held Brownie up to the screen so he could see his dog! We are disappointed but are trying to stay positive. He went from looking and acting like my Hatcher, to a very sick little boy again, and now tonight looking much better again! Here is to another bump in the road!

THE COWBOY IS BACK!

It is amazing how fast the human body heals, we can't believe how good his chest looks!

I tease that people are going to ask what happened to his head and he will say, "I had open heart surgery." Dang that c-pap mark!

Look out, this cowboy is ready to fight again! He loves his BOB balloon!

He is just so much happier!

Hatcher's PJ's say, "Chicks dig scars"

Story time to help the day go by! One of our favorite people Lupe!

I can't even tell you how grateful I am for a place to sleep by my baby at night!

Hatcher had the best nights sleep last night since this whole crazy thing began! He only woke up a few times and was easy to comfort and get back to sleep. Every time he asked for a drink, he would say, "oh, thank you momma." My little man is coming back! This morning Randy and I gave him his first real bath in the tub in his room. He even brought in a toy to play with. They are telling us that we will be able to go to the apartment soon! He will have to stay local and do follow ups here at LPCH, but anything sounds better than another night in the hospital! I would come everyday if it meant we could get out of here! Sounds like he will have to go home with oxygen, NG tube and plenty of medications, bring it on, no biggy! His lungs and sodium levels still keep us on our toes. This morning he had his daily x-ray, echo, and blood work. We continue to feel so blessed as we watch his progress and want to thank everyone for all of the support, love and prayers! We are so happy to have our little cowbly back!

Happy 8th Birthday Sis!

My sweet Jaxyn, where has the time gone? You are 8 today and Dad and I can't hardly believe it. It has been so hard for me to be away from you. You are my side kick, cook, artist, dancer, rodeo star, comedian, sassafras, gymnast, determined, football player, big sister (OK, more like a 2nd mom), and these are just a few words to describe you right now. We are so proud of you and can't wait till we are all together again. You make me laugh everyday. You are sunshine to our family. I know you will always remember this birthday, big eight and getting baptised, but also that you put your brother first and have been such a trooper. After Hatcher had been on ecmo a few days you told me and dad in the car, " I wish the second coming would just happen so Hatcher could just touch Jesus robe and be healed." Never lose that faith, it is what makes you so strong. We love you, Happy Birthday SIS!

Day 21

Special thanks to Heather and the Fisher family for letting us be a part of HUGS! Hatcher was able to give a bunch of these, definitely a highlight of the trip! I know the reason Heather and I became friends was not by chance. We have felt so much strength and I'm afraid Hatcher has made Jason work overtime this go around! Thank you Fisher family for lending us your favorite uncle to watch over Hatcher, he was an amazing man and continues to be. I can't help but think all the kids who got hugs also got a guardian angel. We love you Heather and look forward to continuing Jason's memory.

I knew he must be feeling better when he asked for his chaps and cowboy hat last night!

We were trying to get Hatcher to play trains, all he wanted to do was scratch!

I'm not sure who liked this outdoor time better, Hatcher or Randy!

This is Alex, the first nurse I have seen Hatcher smile at! Wagon rides, wagon rides and more wagon rides! Even at 3 and 4 this morning, fun for mom!

Nichole and Jaxyn got him this little horse before they left. I saw it in the car yesterday and it has been a hit. He named it spot and it goes on all wagon rides and walks!

This is Hatcher's 21st day in the hospital and I can hardly believe all of the things this little man has gone through! He got the rest of his stitches out and he is definitely getting his strength back because it took 3 of us to hold him down and 1 to take out the stitches! He is just on oxygen and the NG tube to put his medications through! The hardest thing is trying to get a 3 year old not to scratch all the things that are oh so scratchy!

Hatcher loved pet therapy and guess who cried when the dog left? I think Randy and I have spent just about as much time in the bed as Hatcher!

Good night, sleep tight, don't let the bed sores bite!

They figure this happened because of the length of the surgery, ouch!

Hatcher has collected lots of beads this trip, too many for my liking!

Hatcher continues to get stronger and stronger! He is grumpy most of the time, so when he smiles it just melts my heart! He has a little Nerf shooter and has been shooting it at the nurses and Dr's when they come in his room. He thinks it is so funny and pumps his arm and says, "yes" after he gets one of them. I love seeing his personality come back once in a while! Over all we have had a much better last 2 days and he slept for a few hours at a time last night! He still continues to have some withdrawal issues, but they are getting better each day. His x-ray this morning showed more improvement with his lungs, and his echo yesterday showed his heart function was good. His pic line came out yesterday, and he is now getting all meds through his NG tube. It's really amazing to think how far he has come!

Another one of our heart friends passed away yesterday, we are thinking of you and pray for peace. I feel like I was a fly on the wall watching as you fought for your baby with so much courage. We are grateful for all of the wonderful people we have meet, you have truly touched our lives.

Keep on Keepin on!

With dad in the toy room! This rice table was so much fun, I'm sure this is where he will be sending lots of time!

Walking to the play room.

Feeding the birds out on the ICU terrace.

Yum, he actually had a few bites of grilled cheese and a chocolate chip cookies!

Once again Hatcher has had an amazing day with lots of progress. It has been heart breaking seeing him in pain and so weak, but he just keeps on keepin on. Early this morning he once again threw-up, this kills me, it looks like it hurts so bad! After a 4 am x-ray we learned that the right upper lob in his lung had collapsed, ugh.... but they got him right back on high flow, did a bunch of RT and sure enough it looked better within a few hours. He also had to have his NG tube relocated, it was doing a full loop in his tummy. They had talked about moving us up to 3 west, but because of the lung they thought they better keep him in ICU ... until another baby was life flighted in emergently and they needed a bed. Hatcher having had a great day we felt ready to take the next step. It has been wonderful, we have our own room and it even has a place for me to get some sleep by him tonight! He had lunch out on the ICU terrace this afternoon and even feed the birds some bird seed. It's the most I've seen him smile since this all started. He also did some walking. I have to laugh because when I'm in charge we take one or two steps then get in the wagon. I went to shower this morning and when I came back they were telling me Randy had him doing a lap around the ICU unit! I guess its that cowboy in him that's makin him get back on the bull! He did walk to the play room with lots of help and mustered up enough energy to last about 20 min playing! So good to see him doing little boy stuff again. I have to pinch myself as he continues to amaze all of us, making giant leaps, way to go Hatcher!

A special thanks and good bye to my mom who has been here over 3 weeks! We sure love and appreciate all you have done to help us get through this journey. It was hard to see her go. Also thanks to Randy's parents for coming and helping so much as well, I hope Jaxyn will keep behaving herself back home! We are overwhelmed by all of the support we have gotten, it truly has lifted us and keeps us positive.