HOPE

Hope is the companion of power, and mother of success; for who so hopes strongly has within him the gift of miracles. ~Samuel Smiles

I was getting Hatcher settled in bed tonight, got his cords out and went over to the sink to get his sippy cup. When I turned around he had put his own leads on and even in the right spots! You always make me laugh my little man!
Rachel we are so happy you got to go home today! We wish only the best for you and know we will always be friends! Getting to know you and your family has been such a blessing!

The only sad thing about pet therapy is when it is over!

This is Joey. Hatcher spent the entire time with this dog. Feed him treats and he even got to take him on a walk. He was so proud of himself and couldn't get enough of him.

I love how this shows Hatcher's big bald spot from his bed soar, too cute!

How sweet is this? I will have to get this picture to Joeys owner!

When I put Hatcher to bed tonight I was overwhelmed with such an intense love I can hardly describe it. The plan is to head to the apartment tomorrow and be there for a week or 2 ... I know I shouldn't have even said it, but this time I really feel like it is time to go. We got all the instructions for at home today which took up the entire day ... and yes, I am overwhelmed! In a good way. I would much rather be at home doing this all day than in the hospital. First we got set up with the vest system that we will use at home. Then meds, labs, ekg, echo, x-ray and don't forget all those breathing treatments! We also meet with the in-home pharmacy and learned how to mix all of Hatcher's meds .... namely the tPA. The tPA is only good for 8 hours at a time, so it will be a full time job constituting it everyday. I watched first, then had to do it ... I did OK, but think it will take me a while to get the hang of things and using the needles. We also got the nebulizer and sat monitor for home along with oxygen. Tomorrow we will have some more instruction on the other at home neb meds. We have been doing this in the hospital for a month now, so I feel somewhat prepared, it will just be getting used to the new equipment. We know that this is serious and right now Hatcher has to have the tPA 4 times a day in order to keep his airway clear. I wish there was more options for him but if we get more time, even if we can't go anywhere, that is all we can ask for. Because tPA has only been used a few times for plastic bronchitis the side effects are really unknown and we are not sure how long he will be able to stay on this 4 times daily regimen. Things that have been discussed if he continues to have problems are to take down the fontan and go back to glen physiology which is not a guarantee that the plastic will go away, and then what in a few years? The other is a transplant which also has no guarantees that it will cure the plastic bronchitis, so it definitely feels right to just give it some more time. The plan is to take him home on the tPA and pray that it keeps the cast away or at least mobilized! My hopes are that somehow his body will be able to learn to adapt and live with it. Hatcher's airway is smaller than the size of a straw so you can imagine how easily one of these casts could block it. I hate watching him struggle for breath getting them out. With that being said, I have never seen him more full of life. What a trooper he has been through all of this and some how seems to understand that this is just what he has to do. It's bitter sweet tonight tucking him in. Every night I have been able to have the sweetest talks with him. Just the two of us. When we are in the hospital the world stops and only the things that matter take up our time. The baby next to us has been crying ever since we got into bed. Hatcher was so worried about him and asked, "Mom, are they poking him?" I told him that he was probably just tired and wanted his mom. "Or he has a bad heart like me." I told him that was true, a bad heart can make you cry and we should add him in our prayers tonight. These tender moments are ones I hope I never forget. I pray that we will walk out those doors tomorrow and that we will live each moment better than the one before. To end my post tonight I want to thank all of our family and friends and even those who have adopted us over the past few months. The outpouring of support from so many has been a complete blessing. It seems like every time we face a road block or stress, the mail comes with an unexpected check, gift card, uplifting note, goodies, phone call and most of all love. There has been so many times our prayers have been answered through the kindness of others. I have not gotten the chance to sit down and write thank yous yet, so until then .... THANK YOU all for helping us through this journey. I have so much faith and hope and know that it is because so many are lifting us, we can feel it daily.

Home on the Range

The other day Hatcher said, "Mom, I miss our old house." Thinking he was talking about our house we sold I asked why. "I miss that barn in my room." Realizing he was talking about his new room I told him that when he got better we would get to go back to his cowboy room. I guess he thinks we live at the hospital now. His favorite song is Home on the Range ... hoping we would be heading back to Idaho soon my sister put the song on our blog. When I pulled it up tonight I couldn't help but get a little emotional wishing we had made it out of here with Hatcher and Idaho was only a few weeks away. So tonight as I watch him sleep I will think of that home on the range and hope that I will get to make lots of memories there with my little cowboy!

SMILE

Getting ready to take a bath and go swimming ... so great to have a tub in our room to splash in. Hatcher was fully potty trained going into this surgery, but look who has decided diapers are much easier!
The Standford baseball team came to visit and play with the kids. They gave the kids signed baseball hats and helped to make the night fun.

An astronaut visited from NASA and the kids made rockets and got to meet Camilla, a rubber chicken who has gone on many missions to space.

Jaxyn and Hatcher have made a best friend .... Rachel you have made our days brighter and smiles bigger. You are sweetness and we feel blessed to get to be your friend!

I am so grateful for the roof top terrace. The kids are able to go up, have ice cream and make a secret fort in the landscaping. I cherish these normal kid times they get to have!

Ms. Katy we love you! What an amazing teacher and friend yo have been to our little Jaxyn!

USA baseball spoiled Hatcher with all kinds of treasures! Love the #10 Hatcher jersey, it's perfect for the name sake! I had to laugh because the kids have had so much fun with the box and popcorn it came in. Jaxyn will hide little toys in it and Hathcer tries to find them all, then he does it for her. I love that the box was just as cool as the jersey to Hatcher and he is making sure it does not get thrown away!

I wish I was reporting that we had made it out of the hospital and to the apartment .... but it looks like we will be here at least another 2 weeks! Early Thursday morning Hatcher started coughing and sats dropping ... I was sick to my stomach knowing that he was probably working on another cast. I could tell his energy was gone and that he did not feel good. Sure enough during a respiratory treatment at around 1 am he coughed up a piece of the plastic bronchitis, and another that afternoon. Ahhhhhh! He had to go back on oxygen and we put his NG tube back in because he was having a hard time taking all his meds by mouth. He went back up on all his respiratory and vest treatments. A huge step back, but he seems to be responding. He is off oxygen today, sats back up and he is feeling much better. I have to say I have been a little discouraged, so all I am trying to do is smile through it! Jaxyn has been going to the hospital school and really enjoying it. When we told her that we would have to stay longer she said, "Oh mom, that's not bad. One of my friends at school has been here 2 years!" So tonight I feel blessed. Blessed to have our own room, happy moments with Hatcher, new friends, amazing nurses, sunshine, outside play areas, Tpa, chocolate chip cookies from Hatcher's lunch tray, and most of all the tender mercies the Lord continually pours upon us. We found out this afternoon that the insurance finally approved the Tpa for at home use! Because it is not FDA approved for what Hatcher needs it for and is currently considered experimenta,l it was a little tricky and had me feeling a bit stressed. Thank goodness for all the experts who have helped us get things approved. So here is to more time at Lucile Packard ... SMILE!

SEE YOU CVICU!

A fun surprise came in the mail from the Swain family. Hatcher loves the tractor you can take apart and even slept with it last night! Jaxyn also loved the cowgirl earrings! We can't thank you enough for your kindness!

All packed up and heading out of the CVICU .... here we come 3 West!

Hatcher got his NG tube out (nose hose) ... I couldn't stop kissing his cheeks all night! What a handsome face! The only bad part has been getting him to take all his meds by mouth ... yuck!

This is how Hatcher has been walking around the CVICU ... all cowboyed up and feeling more like Hatcher!

Fun treats from the Stuarts!

Jamie and Lamar, I think you thought of everything! We had a chips and salsa party and ate dads treats!

This is what I am so grateful for ... friends that the Lord has placed right in our path! Jamie and Lamar we loved you in Idaho when we were neighbors and now in California! What a wonderful visit we had and can't thank you enough for all of the thoughtful treasures you brought us. They were all absolutely perfect. Love you so much!

It was a big day yesterday! Hatcher moved out of the CVICU and upstairs to 3 West. In fact he walked right out in his froggy rain boots. Not too many kids leave that way! He is doing so great and has his happy little personality back. We feel so grateful that all the respiratory treatments are working. The plan is for an uneventful week on the floor and to the apartment Friday! I almost hate to say it ... don't want to jinx anything. Then we will have to stay local for follow up and monitoring for an additional 2 weeks. So we are all crossing our fingers that in another 3 weeks we will be headed back to Idaho ... so excited we can almost taste home! Both Randy and I feel so blessed to have more time with Hatcher. Watching Jaxyn and Hatcher interact everyday has been so touching, she really treats him like a king! I have been a little concerned about the long term affects of the tPA, but am happy it is buying us time! I wish Hatcher never had to endure all of the pain, but also would not trade the experiences we have had here for anything. The kindness that has been shown to us by so many and the tender mercies we have felt have touched our hearts and souls forever!

GOOD NEWS!

All of the Respiratory treatments are paying off ... clear lungs!
One of Hatcher's favorite night RT's Dennis ... we will miss you and good luck with your new endeavors!

I feel like this is what we are always doing ... treatments!

After Hatcher's CT his dinner tray came and he was so happy to see a hot dog!

Jerry ... look out for that rope!

Fun with Rachel!

Jaxyn and Zelee, so fun to have new friends ... her little sister just had her fontan too!

Thanks Erica and family for the fun box! You couldn't have picked better stuff. Entertaining a 3 year old all day in the hospital is a full time job! We love Uno Moo ... a new favorite!

And the results are ..... TERRIFIC! Hatcher's CT results came back clear! It was some much needed good news. Hatcher has been having nightmares and crying in his sleep saying, "Please don't hurt me," and "I don't want to wear a mask." It really has been breaking my heart and the night before the CT I kept thinking what are we doing to this poor little guy. So to hear there were no casts and it did not appear that there was any severe lung damage was just what I needed to hear! We feel so blessed and once again feel like we are back in the game! All of the vest, tPA and 3 other nebulizer treatments are working. Our goal now is to ween down treatments. Hatcher will have to continue tPA even once we are at home, but we are so grateful for extra time with him. I guess my full time job will be tPA administer and nurse! His future is still unknown but we are celebrating today and the joy we feel getting more time with our little cowboy - a big ye-ha!

waiting for CT ...

Thanks Skeeter, Erin, Brayden and Alx ... Hatcher loved the goodies! Also Kristen and family for the yummy treats and treasures and so many others who have sent boxes, cards and notes ... we feel so lucky and loved!
Amy ... Hatcher calls her Kootie Patootie.

Being silly with Grandma Lori.

Today we are passing time waiting to go down for a CT scan. The bad thing about these procedures is the fasting Hatcher has to do. So hard for a three year old to understand why he can't eat or drink! I'm just not a big fan of the waiting, feels like that's all we do! So happy he is having fun with grandma and dad and doing lots of roping....thanks Brayden and Alx, it's been so much fun seeing our little cowboy with rope in hand!

A special note

I have been wanting to sit down and write this for over a week now. We first meet Lisa, Shawn and baby Ethan weeks ago. They were one of those couples who were so sweet and always seemed to try to find the good in the situation. You become connected with families and here in the CV world become each others support system. It's refreshing to have others to lean on who know exactly what you are feeling. I can remember asking Lisa how old Ethan was the first time we meet and she told me 11 months, almost 1! How every mom looks forward to those mile stones, the first tooth, first steps and first birthday. So when we heard little Ethan had taken a turn for the worst another mom and I were able to escape and get balloons, a birthday cake, food, and surprise Ethan with his first un-birthday party. It was emotional as I watched the tears pour freely as we sang happy birthday. I'm sure it meant a lot to them, but I think it meant more to me. For a moment that day I forgot about how bad things were with Hatcher and his diagnosis of plastic bronchitis and only wanted to lighten their burden. Late that night little Ethan passed. As I went out of Hatcher's room I instantly knew what had happened. Lisa and Shawn, I am sure that night was incredibly hard for you but we wanted to thank you for sharing it with us. I will never forget kissing sweet Ethan on the head, tears in my eyes asking him to help Hatcher now. He looked so free from everything. Cozy in a blanket just as a baby should be. Lisa your strength that night is something I will never forget. There was a beautiful feeling in the room, you had done all you could do. I have thought in depth about life and death and when I went back to Hatcher's room that night I cried and cried. I felt the heart ache, but more than that I felt peace. You have forever touched my heart little Ethan, I know you will make one amazing angel! Lisa and Shawn, Canada is far but you will always remain in our hearts. Thank you for letting us be part of your journey, we love you.

Mother's Day

This is why I love being a mom ... Hatcher, Jax and Randy, you always make me laugh!
The weather has been so nice, but it has turned a little cold the past few days. This is Hatcher in my hat getting ready to go outside to the CVICU patio, so glad he has that, makes the day much better.

One of my dad's best friends came in to town to watch his son who plays for the Huskies. It was so wonderful to have some visitors, what a great guy you are Jim. Thanks for coming to see us, it meant so much! Randy and Jaxyn got to sit with them at the Standford / Washington baseball game and had a blast.

Hatcher got a special visit from Nissen Osterneck ... professional suffer and ultimate fighter. Brought hats, shirts and a signed poster that is now on Hatcher wall.


Randy and Hatcher love to watch ultimate fighting together and Randy told Hatcher that this was one of the guys they watch. This picture is Hatcher showing Nissen how he fights his dad ... what a cool guy Nissen, you have fans for life!

Hatcher hates his "shaky vest" treatments and inhaled TPA along with other drugs every 4 hrs. He was promised chocolate pudding if he was a big boy and was good for his treatment ... the next time he was offered the same reward he said, " no thanks, lets just not do the treatment."

So fun to get a packages, thanks Auntie for the Superman PJ's and treats. To everyone who has sent us things to brighten our days a huge thank you ... we couldn't do it without you all!

I have had so many thoughts today. Ever since I was a little girl I have always wanted to be a mom. I can remember begging my parents to have more kids. I often pretended my younger cousins Tyler, Mica, Shane, Kai, Cam, Cody, were my younger siblings and loved it when they would sit with us at church. I could just imagine how fun it would be to have a baby and be a mom. Although I realize there is a lot more to it now, I I feel like the luckiest mom in the world. I feel like I have been given a gift ... one that I would never have known had Hatcher not come to our family. Each day that he is here I am reminded that someone else is in charge and we can only make the best of each and every day. This surgery I have come to really know the sick child world that exists. The hug from another mom who just let their 9 year old go, in the OR so he could be a complete organ donor. The pain of another as I watched her walk her pink bundle out of the CVICU and down to the morgue. The love of a family we only knew for a few weeks but felt so connected with ... kissing sweet Ethan goodbye is something I will never forget. It is the grace of a mother that I am so thankful for tonight. My mom is here and she sat with Hatcher so Randy, Jax and I could go out to dinner. She was happy to do it ... isn't that what mom's do, take care of us even if it's their day, thanks mom for doing that for us, it was a much needed break! Jaxyn and Hatcher I hope you know that I feel blessed to be your mom, and for the record I think you are the best kids ever, I love you!

CINCO DE MAYO

Taking a walk with dad and his stick
Jaxyn was able to enjoy the Cinco De Mayo activities upstairs and brought Hatcher a sombrero!

Still lovin on nurse Amy.

This is Adam, our favorite respiratory guy ... makes TPA time fun! Thanks Adam for bringing laughter to our day!

Thanks Barlow bunch for the cowboy cowgirl mickey! They kids have had so much fun with them!

So good to have grandma Lori here.

How awesome is this? Jeff sits outside Hatcher's room and plays and sings with his guitar ... so cool!

One good thing ... no bronch or CT this week! They decided as a team that Hatcher has been doing so well they wanted to just leave him so he could continue to regain his strength. They still need to be done, but we are hoping he will be able to wait until next week. I love seeing his personality come back as he has been saying funny things and teasing his nurses. We pray that things will be clear to us as to what to do. Because plastic bronchitis is so rare there is no clear one thing to do. It has been hard to, "just wait and take it day by day." We have had such a good week that Randy and I both feel so blessed that if we can get Hatcher home and have good days like the past few we will take it. It may be a day, a week, a month, a year, (and of course I'm hopin for a lot more) but we are ready to live it up and enjoy everyday we have with him. My wheels are spinning as to the fun things we will do when we get home. Like fort building, eating cookie dough for breakfast, and lots of snuggling!