Happy birthday!

I was going to send an update after Kai's appointment in Ann Arbor on Wednesday, but time just got away from me. Between doctor appointments and both boys' birthdays this week, it has felt like there has not been a minute of down time. Now that things feel like they're finally settling down, I'll give some details...but, I'm actually going to  share some pics of our birthday celebrations first!

Celebrating birthdays is always momentous, but this year was exceptional. We got to celebrate with this big guy for the first time! He quickly realized that birthdays are a pretty good deal. Cake, presents, attention ---he loved it all! 

It did our hearts good to have him home this year to celebrate. There aren't words that can truly express how much he has blessed our family. But, while that's so true, there was a wide range of emotions involved. Our minds can't help but question what his birth parents must be thinking, feeling, and experiencing. I'm sure they wonder where he is and what is looks like and what enjoys doing.  We grieve for them that they will never have the chance of knowing.

   A child born to another woman calls me mom. The depth of the tragedy and the magnitude of the                                              privilege are not lost on me." - Jody Landers

These "big days" remind us how honored we are to have him in our family and experience life with him ---even when he's spinning in circles while trying to put on pajamas after devouring birthday cake!

Happy birthday Sam and Kai. We love you to the moon and back!

On a totally different note...

 I just want to put in plug for the upcoming Magical Wishes 5K. For those of you who love to run or walk, this is a fundraiser for Make-A-Wish, a fabulous organization that grants  "the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy."  As a Wish family, we would love to see the streets of Hamilton packed with runners and walkers supporting Make-A-Wish! For more details, visit the race website:

https://www.facebook.com/events/1085236348168972/

If participating in the 5K is not for you, we'd love for you to consider sponsoring us (Chris and Jen). We are running on behalf of Mended Little Hearts of West Michigan. MLH provides resources and support networks for families dealing with congenital heart defects. Sponsoring is easy; just go to http://www.mlhmi.org/MLH_Runner_Sponsor.php and fill out the sponsorship form. Look for Kai's name under the "Select Your MLH Runner" tab. 

We appreciate your support!

Tomorrow

Tomorrow, we will be heading back to Ann Arbor with Kai. 

Last week Kai became cyanosed intermittently. Turning blue is a sign of low oxygen saturation levels. Naturally, since his surgery was aimed at reconstructing the right side of his heart so that blood could become oxygenated, blue was definitely not what Chris and I planned on seeing. We didn't think that low oxygen sats were really even a possibility anymore.

The doctors didn't think so either. In fact, as his primary cardiologist put it, " there is nowhere in his heart for blue blood to shunt to the systemic side anymore." 

So, we'll head back to our "home away from home" tomorrow and see if Kai's team can figure a few things out. On a positive note, he had chest x-rays done to rule out a return of the pleural effusion (excess fluid around the lung), which came back normal. This is a big deal because, if it had returned, those nasty chest tubes would have needed to go back in. So, at least no chest tubes tomorrow! 

Chest tubes or no chest tubes, he is thoroughly sick of all things medical. Terrified, actually. This afternoon we headed over to my grandparents' house; as soon as we walked through the door, Kai began sobbing. The last time he saw them was when they came to visit at Mott...he thought they were going to "bring me back a hospital." See what I mean?! He's convinced that everything and everyone is meant to inflict pain upon him.  I hate for him to have to endure more needles and machines and hospitals. 

On a totally different note, the beginning of July is bringing a lot of new and exciting adventures for our family.  We got to celebrate the 4th of July for the first time as a family of 4...Kai's first as a U.S. citizen! Fireworks and sparklers were a great distraction from medication and doctor appointments.

We also get to celebrate BOTH boys' birthdays later this week! Last year we got to send a present to the orphanage for Kai; I have a feeling that it is going to be much more enjoyable to get to celebrate it with him :) I'll be sure to post pictures this weekend!

We're Home

Really, let's be honest, the title of this post says it all...we're home! Actually, we got home late last night, but after a long day of waiting for test results, I was simply too tired to post!

Kai's chest tubes came out on Thursday morning and he is definitely a new man with these out!

He continues to be in quite a bit of pain, but it's good to see him wanting to get up and move around on his own. The first thing he wanted after getting his chest tubes was for Music Therapy to come and sing with him. I think they were impressed with his singing. It was loud.Very loud. They did admit that they've never had a patient sing that loudly before. So, the entire 11th floor got to hear him sing (or scream, depending on how you look at it) Jesus Loves Me! After his rendition, the nurses on the floor gave him a standing ovation in the hallway--which, you can imagine, he loved!

He also wanted to be up and moving to play in the playroom.

Although he had a lot of fun on Thursday and Friday, it's good to be home to sleep in our own beds and be back on more of a regular schedule. Kai was especially excited to see Ellie. The poor dog is a saint; he's been pestering her since the moment we walked through the door!

We are SO thankful for Kai's team of doctors, surgeons, nurse practitioner, nurses, and social worker. Through all of this (really, since Kai has been home from China with us), we have been so impressed with how knowledgeable, helpful, and caring they all are. I can say that they are not just a great medical staff, but great friends as well. So, it was hard to leave them last night. Really hard. But, we get to head back in a week to see them all again!

Thank you, too, for all of your support for our family as we continue on this journey!

Not today

After some minor complications yesterday, we figured that Kai's chest tubes would not be coming out this morning. Unfortunately, we were right. We should have know that it seemed too good to be true!

It sounds more likely that, if all goes well, the tubes will be able to come out at the end of the week. We'll just take things day-by-day and see what happens! 

Thanks for all of your continued prayers and support. 

heading home...maybe

A few hours ago Chris and I met with the doctors and nurse practitioners on Kai's team...they are so impressed with how he has been doing lately. The drainage in his chest tubes has decreased significantly in the past 3 days. That is music to our ears! Why? Because that means we are looking at the possibility of getting those pesky chest tubes taken out!

A few people have asked us what chest tubes are exactly. For those of you unfamiliar with what chest tubes are, they are tubes placed in the pleural space (the area between the lung and chest wall). A small incision is made under a rib into the area between the lung and its lining, where the tube will be placed. The tubes are then hooked up to a suction device to drain fluid and blood. Kai also had a mediastinal chest tube which has already been removed. Feel free to scroll past the picture, if you're not interested in looking at it!

Right now, Kai is scheduled to be sedated tomorrow morning and then have these removed around 10:00 am. Aside from being much more comfortable, removing the chest tubes means that we are one step closer to being able to go home! If all goes as planned, Kai will be able to head home this week! 

Here's how he feels about that (please disregard his hair!)...

Of course, he has to keep us on our toes, so shortly after the decision was made to take these out, he began vomiting..all over...and "dumped" a significant amount of fluid from his chest tube. He just had bloodwork done. I'm not posting the picture I took of him afterward, but you can be sure that he does not look at happy as the one above and he's definitely not giving a "thumbs up"! 

We are all hopeful that this won't change the current plan. As much as we love everyone here, we are all ready to be at home. And get some sleep. We're all ready to get some sleep. Please pray that all goes according to plan and his testing over the next couple of days is favorable so that we can look forward to discharge this week!

Father's Day

First of all, we just want to say "Happy Father's Day"!

I'm sure that being at the hospital did not make for the most exciting Father's Day that Chris has ever had. However, we did take him out for a special lunch in the cafeteria. To show him how much we love him, we went to the big cafeteria in the main hospital. What a lucky guy!

Really, we did have a great day, though. Kai's pain was well managed and he has been out and about today. He got to play in the playroom (I think he could play with the rice table for hours!), "walk" in the hallway, look out the telescope, and even head outside for a while. Fortunately, Kai has a patient and loving big brother who accompanied him on all of his adventures today. Sam is becoming very accomplished at maneuvering the IV pole and moving chest tubes! 

The only thing that we weren't planning on today was the removal of Kai's internal jugular line/central line. This, of course, is the IV line that was placed in the jugular vein in his neck. It needed to come out because of infection concerns. It was not a pretty process getting this out! He cried so hard that he eventually fell asleep...in the stroller, of course, since he refuses to sit in the hospital bed. 

I really think that he'll feel so much better not having these lines in his neck, but it does mean that he'll need to have meds given and blood taken differently from now on. As you can imagine, he's not really a fan of pokes, so this could get interesting!

On a totally different note...it's amazing how close to the doctors and nurses and child life specialists we've become through this journey. We're not necessarily surprised by this, since we are surrounded by incredibly knowledgeable, talented, and loving people. But, we have also become close to other kiddos here. We have two of the sweetest, cutest babies on either side of Kai's room! Sam and Kai have grown to love them so much...I think especially so because, unfortunately, neither one has family or support systems here to be with them at the hospital. To show the babes how much they are loved, Sam asked if he could be brought to the store to purchase toys for them...with his own money! How could we say no to that?!?

Here is what he came up with:

We are so proud of his big heart for these kiddos here! 

Shortly after we received Kai's referral and were starting to research, learn about, and plan for his health needs, we had someone ask us if we felt it was selfish to adopt a child with such significant health concerns; that it was not fair to Sam to put him through all of this. Yes, it is certainly hard to be a six years old and be at the hospital watching a sibling go through surgeries and treatments. But, it also teaches important life lessons. Sam has certainly shown that he is learning empathy and compassion and patience. We are so proud of how he is working on caring for others!

Rough Days

The last couple of days have been a little bit rough for Kai. He's dealing with some pressure issues in his heart. The left side of his heart still thinks that it needs to be working overtime! He is getting some treatment to attempt to relax the blood vessels in his left ventricle so it doesn't continue to work so hard. 

Since he's had a difficult couple of days, we thought we'd post some of the "fun" things that he's experienced...just to take our minds of how miserable he feels right now!

Meredith from Music Therapy has come down to sing to him a few times, which he LOVES. We are so thankful for all of the programs that they offer here!

Kai loved having Ms. Angel come to visit. We even got to see some of his silliness come out!

Kai got to get out of his room and head to Child Life to paint. It took 2 days for all of the paint to dry, but he is very proud of his multi-colored wooden elephant.

Tanya is Kai's favorite nurse. She is AMAZING! 

Our Make-A-Wish volunteers sent Kai a teddy bear. He loves it! Thank you Sue & Trista (and the entire Kimber family)!

He doesn't necessarily look thrilled in the pic, but he was excited to get outside! The courtyard here has tons of animals...he enjoys watching the chipmunks and rabbits!

PAWS was here yesterday. Unfortunately, Kai thought he was extremely scary...so no picture with him! Now that I see the picture, Sam doesn't seem to be impressed by him either! Chris and I had fun, though!

We appreciate all of your prayers and support during this journey. We're hoping for a better day today and progress to update you all on soon!