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!

Saturday update

 This pair of jeans will never be the same after last night/today…I’m pretty sure they were vomited on about every 3 hours for the past 29 hours. I’m thinking that a trip to Gap outlet for a new pair will need to be in my future soon!

But, aside from being extremely nauseous, Kai had quite an uneventful day, medically speaking anyway. After having his lung drained of fluid, his oxygen levels have been relatively stable. In fact, everyone here can’t get over how well the surgery has worked and how much blood is now able to get to his lung to be oxygenated. With oxygen levels consistently in the 70s before, we were so used to seeing him always at least “dusky” that we are constantly amazed at how pink his skin, lips, and fingernails are now that his O2 saturation levels are in the 90s! 

I know he has a long road ahead of him, but as he continues to recover from surgery I’m excited that he will finally feel well. (Although, I have to admit that I’m a little nervous about how much energy he is going to have now that his little heart is repaired!)

Kai did get to have a few tubes removed today…his mediastinal chest tube and his pacing wires. His m.s. chest tube was no longer needed for drainage of blood and fluid from around his heart. He was not excited to have the tube removed…or, more likely, to have stitches…but we’re hopeful that being down to only a couple chest tubes will make moving around a bit easier.  After that came out we tried taking him down to the playroom for a while…the look on his face tells what he thought of that!

Despite the fact that he was less than thrilled to be moved from his room, we are so excited that he was even able to get up and be moved, since this is what he looked like yet on Thursday morning... 

We appreciate all of your thoughts and prayers through all of this!

Friday update

Here is an update that my mom shared on Facebook late last night:

Thanks so much for all the continued prayers for Kai. It has been a roller coaster of a week. Tuesday night and yesterday were rough. Just when you think he has turned the corner another crisis starts. I think he likes to keep everyone on their toes. His oxygen dropped in the 60's at one point and was very lethargic. We are blessed that he has a great medical team working for him and we continue to pray for answers and healing.

After going downhill yesterday afternoon/last night, he has made progress today (Friday). During the night, the staff here drained fluid from his lung to help with breathing. This has helped greatly with keeping his oxygen levels up. Since his heart and lung function was doing well this morning, he was able to get out of the bed for a short while. We got to carry him down to the playroom for a while, where he loved just sitting and watching Sam play with Matchbox cars. That movement took a lot of of his little body, so he's exhausted and nauseous, which is to be expected. He's also a bit crabby, so I'm glad that he's finally taking a nap!

This mama's heart just needs him to continue getting better...and no more setbacks!

So, hopefully I'll have some more good progress to report in the next few days! 

Finally...an update

When we arrived at U of M early Monday morning I was sure that I'd be able to give daily updates of Kai's progress. I figured that there would be a lot of "down time" and waiting that blogging would be no problem at all. It turns out that 2 year olds and open heart surgery are pretty busy and time consuming!

As many of you are already aware, Kai came out of surgery and into the PTCU (Pediatric Thoracic Cardiac Unit---the cardiac ICU) Monday night. All things considered, he did really well. The surgery appears to be successful---that blood is now able to get to the lung and become oxygenated! With missing anatomy and valves on the right side of his heart, this was a struggle before; so we're so thankful to see oxygen saturation levels that are no longer in the 70s!

Yesterday afternoon those oxygen levels began to drop. We had a small emergency---and found out that the doctors and nurses here can move very fast! Of course, as soon as I posted on Facebook that he was stable and his levels were coming back up where the doctors were comfortable with, they began to drop again. The surgeon came in a few minutes ago and said that this is something we'll be keeping a close eye on today. Another thing that we're watching closely are fluid levels. Kai has quite a bit of fluid around his heart and lung. He has almost 5 pounds of extra fluid in his little body right now. This is diminishing his lung function right now.  It also sounds like the catheter that he had taken out yesterday will be going back in sometime this morning. I have a feeling that he is not going to be happy about that! Actually, he hasn't been happy about anything lately. I can't really say I blame him, but last night was ROUGH ---a lot of screaming, thrashing around, etc. He definitely has a lot of "fight" in that little body!

I will do my best to give an update later today or tomorrow morning! Thanks for all of the prayers, emails, messages, etc! We definitely appreciate all of the support that Kai and our family has!

New Date

Just a really quick update...Kai's surgery will now be on Monday morning. It's difficult emotionally to now prepare for a new date, but we understand that it's what's best. So, look for more updates next week!