Friday, May 25, 2012

A Long Hard Road...

It has been 3months and three days since our last update post on Jordan and A LOT has happened in these past months. So let's start where we left off...

After the last post doctors told us that it was time to take our baby home. We were VERY nervous about this and went though all the training procedures to make sure we were ready to bring our little bundle home. On March 9th around 7pm we brought Jordan home for the first time. His Dad and I were very scared, even cried of frustration a little. But when the sun rose on the next day we began our new life and new routine as a full loving family. Big brother Brian (Bj) enjoyed having his little brother home. They played until they got sleepy.

Watching TV

Playing w/ his blocks

Watching Bj and not wanting to hold his head up

After bath and lotion massage...KNOCKED OUT!!!

He REALLY didn't want to hold his head up so we thought to improvise....I don't know why we didn't just put his brother's neck support thingy on him, but it worked

Sooooo, this last picture was the last one I took before all hell broke about 10:30am, Jordan's nurse noticed that he was a little agitated and would not rest easy like he normally would. He also started to retract (breathing really hard). We instantly called 911 and was rushed to the hospital. Jordan was placed back on the breathing machine. He was diagnosed with pneumonia.

At first it seemed as if he was doing okay while fighting the sickness, but then everything turned for the worst in mid-April we got a phone call at 11pm saying we needed to get to the hospital ASAP. When we arrived, the staff was working so hard on Jordan. It turns out that the pneumonia got so bad that it made his left lung collapse and with his heart condition this was not good. He could not keep his SATS up without RT giving him oxygen. Doctors and nurses worked on him for four hours before he became stable. Through God's grace Jordan defeated all odds and came through but not without a big setback...because of the lung collapsing, it caused a lot of  fluid to build up in his lung and there is also a great amount of scar tissue from previous procedures that made it difficult to get to the fluid so that it could be drained. Dr. Goldberg did what he could by Jordan's bedside to get as much fluid as he could out and what little he did helped. But Jordan is still damaged greatly. He then received a trach, which helped him at first but is not doing as great of a job that we intended. Due to this rigorous incident, Jordan is not a candidate for Step 2 of his heart procedures which is known as the Glenn. In order to receive this surgery, Jordan has to have "normal" working lungs and that's not where we are at this point. Hopefully his little body can heal his lungs and go down in pressure in time when his body and heart are ready for that change. As of right now, doctors are stuck and do not know what his future will be. If he stays the way he is currently, then he will not survive.

CV moved him to a step down floor called IMCU where he receives the best care to get him stable and ready to come home. I can say he has been all smiles since he has moved. The staff is great and very loving of him. We know that God has the last say on what will or will not be for Jordan...Let us hold on to that hope that we have for him and pray that he can show get through this battle...We love our little heart warrior...J-Man!!!

Here are current pictures an a special video of our precious baby boy...

Tuesday, February 21, 2012

Surprise, Surprise....

Well, we have had a lot going on since Valentine's Day...Okay Valentines day was fun. Jordan got his first Valentine's from a wonderful church group (who I will be sure to thank and mention as soon as I find out who they are). Due to his central and artery lines being in on this day he could not put on any clothes. So we got some red socks. Jordan LOVED them!!! He even practiced lifting his foot to see the bright color.

His first Valentine's Day Cards...Aaaw!
Window Decoration

Jordan and his RED sock
Hospital Door  Decorations

Jordan lifting his foot to see it

Brian Jr.'s V-day card to the family

The inside of Bj's card

In other news, the second esophagram was completed Monday (2/20/12) at 1:15pm. Results were GREAT!!! His small opening showed that it was healing, so Dr. Huang said that she would let him start feeding by mouth this week. She even stated that during the beginning of the test, he was to swallow the meds that is needed to see down the esophagus and he got most of it down. So that was good to know. It seems as if he is the most happiest child ever. He loves to play and smile. He is basically SPOILED...what are we going to do, LOL! He has a right to be though. Jordan just amazes us everyday. It's such a highlight in me and his father's day to see him do the simplest things that most would take for granted. He makes us laugh so much.
Leg DOWN!!!

Leg UP!!!
Our baby is doing great. He is currently off ALL IV's and oxygen. He is reaching and playing with his toys. He is also starting to sit up with head control and loves to swing (thank goodness).  Continue to pray for our little HEART WARRIOR as he continues UP his river of recovery.

Oh yea, check out our little man with no tubes!!!

Grown Man Sleeping

Words can't be defined by this look, LOL!