Another Update and Pictures

Owen is still not back to his old self but seems to be a little better today.  Last night he slept much better but sounds rough.  We are not sure if the cold he has is the problem or if he has stuff in his lungs again like the video showed.  Tonight he went right to sleep so hopefully he will get some good rest tonight (along with Mon and Dad).

He is scheduled to see the ENT doctor on Friday morning.  They want to see him prior to his procedure next week.  The ENT doctor will be in the operating room with the surgeon and GI doctor.  Hopefully more is better in the operating room???

Elliot started soccer practice tonight and  first game is on Saturday.  No need for practice, lets just get right to it.

We have been posting without pictures and unfortunately the topic has been about Owen's struggles.  So below are are great photos of the kids and cousins which puts a smile on our faces.\

Quick Update

Owen is home tonight and we are anxiously waiting to see how he does tonight.  When checking the hole today they were able to see pneumonia but he did not have a fever so they let him come home.  Doctor told us to monitor his temperature and if it gets to 101 then bring him back and they will admit him.  So far so good.

It is very obvious he does not feel well today.  After dinner his temp was about 99 and we figured he would work it up until about 3am so it would be convenient. 

Last night was horrible for Owen and it was hard to lay there and listen to him without taking him to ER.  However, when Melissa arrived at KU Med this morning Owen did not cough or act like anything was wrong.  I think the staff thought Melissa was "one of those moms".

So we wait and pray that tonight Owen sleeps well and gets back to his normal.  The doctor did say that there is a chance it is not pneumonia and what the video showed is just the "stuff" he was hacking up and vomiting that went back down into his lungs.  Hopefully this is the case.

Owen is scheduled to have another procedure on April 5 to stretch the esophagus and patch the hole again.  Melissa begged to skip the patching and do the full operation to close the hole.  The doctor did not agree and we will try again.  Frustrating...................  In addition he told us the full surgery is not 100% and could have to be repeated.  I guess since Owen is two years old the body may not "heal" like we want it to.  The full surgery is a major surgery and they would like to exhaust the patching and make sure the esophagus is dilated and staying open.

We have been talking tonight about what if nothing works?  We can not imagine Owen having to live like this for his entire life. 

Just When We Thought Things Were Getting Better

Owen has been doing so well and loves being off the feeding tube for several hours each day.  He is thriving when he is off the tube and is turning into a walking machine!  He also obviously loves getting to eat from a spoon.

But, last night he had a rough time with coughing and other signs of something bad.  We were up most of the night as he did not go very long between bouts with without coughing and crying.  About 2:30am we decided he probably has pneumonia again?

He was schedule for a 8:00am video swallow this morning to see if the hole is closed or not.  So we decided to wait and just go to that appointment and see what they say.

Melissa just texted me:  "He still has the hole and he also has pneumonia".  They are now waiting to see his doctor and find out what the plan will be now.

I will update as soon as I hear something.  Please pray for this little guy as he has been through so much already.  We were feeling so positive with his recovery and he seems to be so excited to finally be getting better.  But last night was tough hearing him struggling and knowing he would probably be going back into the hospital.

Update From Yesterday

Owen went in for his procedure yesterday morning and was home shortly after noon.  He was kicked out of the recovery room for being to loud!  He was mad and was letting everyone know it.  Melissa said every nurse, every doctor, or anyone else who was in the hospital came by to try and calm him down.  They offered holding, walking, food, drink, toys, you name it they offered it.  Finally they politely told Melissa it was ok to to get him dressed and leave.  When I picked them up he was fine and you would never have known he was put under just a few hours ago.  He is a tough little dude.

The positive is his esophagus was only closed about 50% (instead of the expected 75%?) so the doctor was pleased with that.  The esophagus was stretched and they suggested we keep feeding him some soft foods and maybe try some liquids.  Amazingly Owen ate yogurt for dinner and had no issues. 

The not so positive news is that they were not able to get to the hole as his trachea was swollen and they could not get to it.  Not sure why it is swollen.  Surgeon did say "the hole looked different" from the esophagus side.  He clarified this does not mean it is closed but only that it looks different.  The next time they go in to stretch the esophagus he is going to include ENT doctor to take a look in there.

The plan is to do a swallow test to see if it is still leaking.  This will be done in about two weeks.  Hopefully we get good news.

Owen is doing so much better.  He is really trying to get mobile and wants to chase his brother, sisters, and neighbor kids.  It is spring break and there is about a dozen kids running through the house and yard all day long.  As I said earlier, Owen is a tough dude.

Keep the prayers coming and hopefully we are making progress.

Surgery #3 Tomorrow

Owen is going in tomorrow for surgery #3 tomorrow.  He will have his esophagus stretched and more glue put in the hole.  Hopefully they will find the hole does not need glue and it is closed.  We are ready for some good news.

Owen has been doing great since his last precedure.  We all like the tube in his stomach (instead of his nose).  We have been feeding Owen some baby food twice each day and he loves it!  He gets so excited when breakfast and dinner time comes.  Since we have been feeding him some baby food we have been taking him off the tube for a few hours each afternoon.  He also loves this!  He gets so much more mobile and really tries to move about the house (or outside since the weather has been beautiful this week).

With the great weather this week he has been outside getting to know all the neighbor kids.  We have been walking him up and down the street in the wagon and that is another thing he really likes.

We have determined he is a music lover.  So often he will start trying to snap his fingers and clap when music comes on.

We will update the blog as soon as we know something tomorrow.