Back Again

Well, we were sent back to Doernbecher via Air Life last night. I had a weird feeling yesterday morning that I just needed to come home from work to be with Christian. When I got home, he was very lethargic and just not himself, so I called his cardiologists in Portland. We were told to go ahead and get checked out by his pediatrician at home in Bend. When we got there, it was determined quite quickly that something was very wrong... a few hours later, heart failure was confirmed and we were on our was to the airport. Christian had his first flight in a fixed wing plane last night... and it was horrible! The weather was windy and rainy and the turbulence was insane! We (me and Christian) caught air several times... and banged around A LOT! But we landed safely and then took a ground ambulance to OHSU/Doernbecher. They were very quick to put him on a diuretic in an attempt to rid his body of the large amount of fluid in his chest. He had collected so much that that his heart couldn't take the pressure and his lungs were collapsing.

He is doing better this morning, but it is looking like we will be here through the weekend. The doctors are trying their best to just use drugs to get rid of the fluid  as opposed putting drain tubes in his chest again. Please pray that he will pull through with the IV meds! Chest tubes mean a much longer stay... again.

I will try to keep you all posted and up to date.

Thanks so much for all of the prayers.

We... Are... HOME!!!!

After a long and tiring morning of procedures, medications, pharmacy visits, doctor visits, x-rays and packing, WE ARE HOME! He still has along recovery ahead of him. He had to be sedated this morning to place a picc line which is just a bigger and better and longer lasting IV. He will be on IV medications for ten more days.

the drive was very long and tiring, but we made it in one piece, got settled in. He got his first REAL bath in two weeks... The poor guy had been cleaned with bed baths. He feels and smells better. He is walking around a tiny bit on his own, but still needs help up from a laying or sitting position.

Thank you ALL again, so very much for everything! I will continue to update on his continued recovery.

Also, if you'd like a Christmas card, please send me your address. I will also upload pictures tomorrow!

A Little Midnight News

I spent a portion of today out of the hospital trying to regain my sanity. I figured a trip to the Japanese gardens would be just what I needed to lift my spirits. It was beautiful and very calming. I had found out early this morning that my favorite author would be doing a book signing just 8 miles away from the hospital! What a great day! But little did I know, things were about to get better! 

We might get to go home tomorrow!!!!!

Yes! As long as Christian's chest x-rays are clear tomorrow, they are going to let us go home! He is still in the hated junctional rhythm, but that can be monitored at home and if need be, we will come back to Portland for the pacemaker... but we are holding out hope that his heart will kick back in gear full time here soon! So really, thank you to everyone who has been thinking of us and praying so hard. We are being handed miracles every day! I will update as soon as I know anything more about ditching this place!

I got to hold my Bug! This was our first cuddle session in weeks! 

(Yes, he is crying, but the nurse had just made him take medicine) 

Surprise!

Picture first!

Chest Tubes Are Out!

Just a little bit of information so far today. His chest tubes were not draining any fluid, so they removed them both! Yay! Just wanted to share that with everyone! Keep up the prayers... they are working! 

Limbo

So, we thought that we were heading somewhat the right direction... but it turns out that Christian's heart is just not ready to work all of the way. A cardiologist came in this morning and told us that he is still mostly pumping a junctional rhythm pattern... which looks like this:

After every QRS wave is only the T wave. The QRS wave is the high, pointed spike, the T wave is the little hump that follows. Before every QRS is supposed to be a P wave, similar to the T wave. Normal rhythms look like this:

Small P wave, the QRS spike, then the T wave and start over... Unless you're Christian.

So, they are keeping a very close eye on him and have started discussing more, the option of a pacemaker being implanted permanently. Please send HUGE prayers his way as this would mean yet another open-heart surgery and Christmas and possibly New Years in the hospital away from home.

Other than that news, the chest tubes are still in, but producing less and less fluid every day. Christian's attitude and outlook are getting brighter as each day passes. He smiles more, makes jokes and is actually playing his IPOD again! To anyone who truly knows him, you know he is glued to that thing!

So, we are still here and trying so hard to get him well enough to go home. It is proving quite the difficult task. He has also started to actually feel homesick and will start crying saying he wants to go home. My heart brakes knowing how badly he misses feeling normal. I am going to venture out tomorrow and find a yoga studio so that I can get a little stress relief and work on making myself feel as close to normal as possible. Please keep us in your thoughts, but mostly pray for Christian's peace of mind and quick recovery.

 Playing with the Air Life Helicopter 

Another smile!

The Weekend Already?

Not only have I lost track of days here at Doernbecher, but I have lost my mind. I actually had to ask how old I was... yes, really... Apparently I am actually 24, not 23. I think I need sleep. Today was yet another slow day. The only thing removed from my little man was one IV. Chest tubes are still leaking enough fluid to keep them from coming out. Baby steps and I need to be patient.

Christian did have a fun day though. He started it out by going for a walk and was met by 5 guide dogs. he didn't want to pet them all, but as part of his physical therapy, he made the circle and pet all of them. Then, when we made it back to the room, he was visited by real race car drivers who brought him a remote control race car and a photo of them driving their car! He was SO excited!

A great person has decided to put on a comedy show in Christian's honor to help with bills and other expenses that have accumulated over his hospital stay. We would love for all of our friends and family to join us for a night of much needed laughter and fun December 23rd in Bend... Here is a link to the rough draft poster...  http://www.facebook.com/photo.php?fbid=10150600478032846&set=p.10150600478032846&type=1&theater


I hope to see all of you there, and we will update again tomorrow! Also, I have started writing a Christmas letter, so please send me your address so that I can put one in the mail for you! nruwaldt@yahoo.com

Nicole and Christian

 Not too sure about the puppy...

 He liked the more calm full grown dog Leif 

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!

A Few Changes

Not too much has happened since the last post, but what little did happen was very important and great. They have decreased his sedation in an attempt to push him towards breathing on his own. He is now doing about half of the work! He has also continued to open his eyes every now and then to see if I am still there. When he sees me, he squeezes my hand and closes his eyes again. His blood pressure is finally stabilized and they are going to put him on a diuretic to help flush some of the fluid build up he has. He is still preferring it to be quiet and does not want cartoons yet. He didn't even want to look at his Ninja Turtles, which was shocking! We have also been told that they actually plan on keeping him in the ICU for about 4 more days... ugh! Oh well though... He is getting such great care here. Here are a few new pictures from today.

 Trying to catch some sleep.

 Sweet little face

 The tubes...

 Holding mommy's hand

 Just some of his medications

His new blanket

The Morning After

I was able to sleep a little bit last night... it is amazing how one can sleep through all of the bells, whistles, alarms, buzzers and people constantly walking in and out. Christian has a nurse with him 24/7, which really is comforting. He has opened his eyes a few times and he tries to mouth, "Mommy" over his breathing tube. It really is heartbreaking. Even though his is very sedated and "asleep", he is able to answer yes or no questions... which is cool and sad at the same time. I did ask him if he felt and owies and shook his head no. I asked if he was okay and he shook his head yes. Then I asked if he wanted his cartoons on and he said no... which is weird!

There have been very few changes in his condition over night. They had been talking about trying to extubate him today, but Dr. Langly just told us that it probably won't happen today... he is still relying too much on the machine. His blood pressures have dropped and they are adding albumin to his blood through transfusion right now. They are keeping his body temperature very low to try and keep his metabolism slow... which is hard as a mom because all I want to do is cover him up with a blanket.

His appearance is the same, so I won't add more pictures just yet. he is still very swollen, pale and just laying there, They did have to restrain his hands because in the moments where he tries to wake up, he reaches for his chest tubes. I just sit there and quietly hold his hand. He knows I am there and that comforts me.

If and when there are any changes or I have a new picture, I will update. Thank you all SO much for all of the love... we truly feel it all!

Finally!

We finally get to be with Christian! He looks so swollen and pale. He has needed three blood transfusions and one plasma transfusion so far... also, his heart is not creating a "P" wave, so his external pacemaker is turned on and is doing the work for now. He is also intubated and they are letting the machine do his breathing as well. They are hoping to to extubate tomorrow. Here are a few pictures of my little trooper...

 Sweet baby... very swollen, but here with us, which is a blessing.

 All of his medications and machines... except the ones that are lining the floor.

 A close up of his little face.

 Thank you to whoever donated the blood that is saving my son's life.

 His incision looks amazing!

 Blood and plasma transfusion.

His special heart guardian angel.