Week One From Surgery

Today marks one week from his surgery AAAAAANNNNDDDD we are headed out of the ICU! It is nearly ten pm, but they have cleared him health-wise and a room is now open and ready for us! We will be in our new diggs within the hour! We are so excited, yet sad because we have really grown to love our regular nurses. But this transition means home for us in a few days!

Today was a pretty low key day. Christian is eating like crazy again and is starting to get some of his personality back. I am still not able to hold him as he still has two chest tubes... but those might be gone tomorrow! He went for quite the walk today and has been asking to sit up as opposed to being forced to. Getting stronger every day! I am scheduled to be back at work the 15th, so I am hoping to be home by the 14th!

He is already asking if we can bake cookies when we get home, if he can play with friends and have our Mommy/Christian dates like we usually do. I have been able to get him to smile and even caught one on camera... the poor kiddo looks sick and so dehydrated... but still very cute.

 Getting his java on!

 Not super keen on walking and sitting

 But walking anyway!

 Relaxing in the wagon

 First post-op popsicle

And the smile! He is slowly coming back to us!

Thursday...

Well, today marked one week here at Doernbecher Children's Hospital... We are hoping we are more than halfway to getting to go home. The cardiologist just came in and told us that we might be able to move to the recovery floor tomorrow! (But we have heard this before, many times)

Not many changes today. They ended up placing him back on the pacer last night, but it was unplugged again this morning and he is doing well again. Some blood work was done and yes, he does have bacteria in his blood somewhere, but they have started him on antibiotics and he is showing zero signs of bad infection. The line in his neck was also removed... mostly because that was discovered to be the source of infection.

Little by little, day by day, lines are removed, progress is made and we are taking baby steps towards going home. We miss everyone back home so much. He talks about wanting to play with our neighbor Sam and with his kitty. He misses his bed and his baths at night. I just miss being able to hold him. I am able to lay next to him in bed, but still not able to actually hold him.

Cross your fingers that we can be home within a few days!

Christian doing his physical therapy... bowling in the hallway of the ICU!

Sitting up in bed!

Wednesday, Pearl Harbor Day

We began today with turning off Christian's pacemaker! It is still connected to his heart in case his heart tires out again, but right now, his heart is doing all of the work! It isn't a perfect rhythm, but it will do for now. He is more vocal as long as there are no nurses or doctors around to hear him. He actually smiled when I asked him to early this morning. As far as nurses and doctors go, as soon as they are within eye sight, he goes stone cold... won't look at them and won't talk to them.

Physical therapy came again to day and got him out of bed. he was able to take a few steps and went for a wagon ride. Then he sat in a wheel chair for a while and played some video games. he ended up falling asleep in the wheelchair.

The other big even today was a bath! He needed it soooo badly. But the kiddo looks (and smells) so much better. With all of the diuretics that he is getting to move the fluid out, his eyes have started to get that 'sunk in' look and he is actually looking like a sick baby. Poor guy.

Once again, we are hoping to move to the upper recovery floor tomorrow, but we have been hearing that since he came out of surgery. So, I decided to put up the Christmas decorations that the McCool's sent over. Thank you guys so very much... it is very festive in here and our room is drawing a lot of attention!

Thank you to everyone who has been sending emails, comments, gifts and well wishes. They are all very appreciated!

Please remember to take a moment to silently acknowledge those lives lost at pearl harbor 70 years ago and the countless others sacrificed throughout WWII.

 Christian's wagon posse 

 Not too happy

 The look he has been giving anyone in scrubs or that makes him move

 Playing some Crash Bandicoot

 Fell asleep in his chair

 Extremely unhappy about bath time!

 Our room doors (thank you Jamie!)

 The window at the end of his bed. He LOVES it!

Tuesday Evening

Sorry it took all day for me to post, but we had a very big day. We started out with the removal of his atrial monitor line that sat in his atrium and threaded out of his chest. Then he ate a few bites of soup, macaroni and chicken strip followed by a few sips of soda. After that, he needed his oral meds...and he threw up EVERYWHERE! So, we decided that it was a good time for physical therapy to come in and get him up for a bit so we could do a bed change.

It was a process to get him up and he was not very excited about it, but once he was up, he enjoyed sitting for a bit. Then it was time to get back in bed and get another tube removed! The giant tube coming from the middle of his chest was removed! Yay! Shortly after that, the arterial line in his wrist was removed as well. What a busy day he had. He is now resting comfortably in bed and sleeping for the first long period of time today.

They are going to run some more blood tests and a urine screen. His last blood draw came back with a high white cell blood count indicating possible infection. Cross your fingers that all will come back normal. He is finally losing more of the fluid that has built up in his tiny body. His pacemaker is now only doing half of the work for him. That was such great news to hear. Please keep praying that his heart continues to get stronger.

Thank you all again so much for checking in. I will be sure to keep you posted, just keep checking in!

 He was NOT a fan of the pink pajamas they picked out... neither was I. 

 Sitting up! 

 And he's in the chair!

 So many tubes still :(

 A big thumbs up for this milestone!

 Return of the faux hawk!

 We made the one-armed, barefoot, pig nosed safari bandit!

The scowl that he has been giving all of his nurses, doctors and specialists. So charming. 

The Monday Blues

Christian's pain levels really went up throughout the night. He is very tired, sore and continues to drain copious amounts of fluid from his chest. His heart is still completely relying on the pacemaker. The doctors said that if he is still needing it next week, that we might be looking at needing a permanent pacemaker placed... ugh! But, they said to not worry about that right now and just focus of getting his feeling better. His liver is very swollen as well, but again, very common after this big of a surgery.

We had a wonderful guest come today and play the harp for a while. It was so beautiful and very calming. Christian's face went from a grimace to a relaxed and restful expression as he slept and she played. So, thank you to the Children's Cancer Association for visiting Doernbecher and sharing your beautiful music.

The plan for today is to just get his pain under control and then maybe work with physical therapy to get him mobile again... Not going to lie... I am not excited about that. he is in NO mood to be moved AT ALL... he has made that very clear.

So please, keep praying! They are being answered little by little. He is still very sick, but he is a strong willed and very determined little guy!

Love to you all,
Team Ruwaldt (the nurses gave us that name)

 Drinking his much desired soda!

 Just some of his bed buddies!

 The tangled mess of wires and tubes hiding behind the bed!

 Sleeping angel. 

 Goose bumps.

 His E.T. finger. 

 My point of view. 

 The harp music. 

Listening to the music. 

Tucked In For The Night

We have had a very slow but productive day. It started with the removal of the breathing tube. He did so great with that and started talking immediately. He ended up gathering a bit of fluid in his lungs, but they suctioned that out and he has been doing great. He got to drink his soda and drank some water as well. He woke up at one point and asked if I would snuggle him... Of course I would! The nurses scooted him over and let me cuddle up!

He was just getting ready for bed when he said he needed to poop... for anyone who has had major surgery, you know that you can't leave the hospital without doing that! So, we were glad to get that portion out of the way.  He is now asleep and resting very comfortably.

Getting to cuddle my baby!

Drum Roll Please..........

The breathing tube is OUT!!!!

Christian spent most of the night unplugging his ventilator... He discovered that if he turned his head fast enough and far enough, it would disconnect the tubing , and nurses would come running because the machine would alarm like crazy! What a trouble maker! So, because of his persistence and desire to breath on his own, the tube was removed! Yay! The very first thing he said was, "I'm thirsty of soda." He never says 'for' anything, it's always 'of'. He has to wait until 1, but then he can have his soda! His heart is still needing the pacemaker, but it has been picking up a few of the "P" waves on it's own... so all is getting better. He is more awake and and talking... even saying please and thank you. The nurses just love how polite he is. Thank you all again so much and please continue to pray for forward progress. I love you all!