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.

Owen's Journey Continues

Owen has been recovering nicely over the past week.  Monday was a big day for him as he got to eat for the first time in seven weeks.  Melissa fed him yogurt and he was in heaven!  About two hours later it came back up.  On Tuesday I fed him a half container of yogurt and he did great.  We think on Monday he ate too much and his stomach was not ready for it.  Today he ate another half container of baby food and seems to be doing fine.  He gets so excited now when dinner time comes.

The feeding tube is still in but it is much better in the stomach that it was in the nose.  Today Melissa took him off the tube for a few hours in the afternoon and he was so happy to be free.  He worked his way around the house and had a ball.  He is ready to be done with the equipment.

Owen will be going back for a third surgery on March 15.  They will stretch the esophagus and apply more glue to the hole.  This will also allow the surgeon to evaluate the hole.  It should be an out-patient surgery and he will be home that night.

Iris has been sick for a few days.  Melissa took her to the after hours clinic as she was really miserable last night.  They told us she did not have the flu or strep throat and gave her some Tylenol.  She seems to be a little better today but still not up to 100%.  Hopefully tomorrow she will be back to her normal self.

Owen has been coughing a little and we are praying he does not get what Iris has.  So far she is the only one who is sick.

Owen Is Recovering

Owen is recovering in ICU tonight but should be heading home tomorrow.  The ICU seems to be precautionary since they were in his airway a lot today.  We are happy with our change to KU Med and at the end of a long day we are glad we made the switch.

The plan today was to move the tube from the nose to the stomach.  A port in the stomach will keep Owen from pulling it out and will be more comforatable for him.  Another plus is that the tube in the nose can increase his issues with reflux - why put it there to start with?  So the surgeon informed us that a GI doctor would help place the port and check things out from a GI viewpoint.  Good plan!  About 30 minutes into the surgery the GI doctor came out and told us he found a major restriction in his esophagus and wanted permission to put a balloon in there and stretch/open it up.  He told us this was a huge problem and could have been causing a lot of issues with reflux.  This would also explain why Owen could not eat solid foods without gagging them up after a few bites.  The food would basically just sit on this restriction and could not pass down.  We obviously approved opening this up.

About thrity minutes later the GI doctor came back out and explained what he had done.  The good news is they found it and will start correcting it.  The bad news is Owen will have to go back in three weeks and have the esophagus stretched again.  This will have to be done several times which requires Owen being put under each time.  The other down side was that the GI doctor told us they had not done anything to the fistual (hole) and would re-evaluate in three weeks when they stretch the esophagus again.  Melissa and I were instantly bummed out.  We sat there for about an hour wondering why they did not address the hole while they were in there.  This thing is never going to end!!!

The surgeon finally came for the consultation with us and informed us he did address the hole.  The GI doctor had left when his part was done and did not realize the surgeon was not done working.  He addressed the hole by applying a "glue" to the opening.  Again, this is a 50/50 if it works but he was able to access the hole and get the glue where it needed to be.  There were some other details he explained but overall he was pleased with what he was able to accomplish today.

The surgeon was very pleased that they found the restriction in the esophagus.  He feels this was probably causing most of Owen's issues, more so than the hole.  He will "glue" the hole again in three weeks when the esophagus is stretched.  The surgeon thinks we can try giving Owen some soft food (yogart, baby food) via the mouth sometime next week when his throat is not sore from the procedure.  Owen will be so excited to put food in his mouth, even if it is just a little bit.  With the esophagus opened up he thinks Owen will be much improved.  How in the world was the restriction in the esophagus not seen at the other hospital?  Well probably because Owen never saw a GI doctor during any visits or stays!

Melissa and I are very happy with out decision to move Owen to KU Med.  Owen still has a long way to go but we really feel he is going in the right direction now.  Speaking to the surgeon it sounds like we will continue to try the glue as long as we are in there stretching the esophagus.  If the hole does not close using the glue and we finish stretching the esophagus he thinks it will be time to open Owen up and surgically close the hole.  Hopefully the glue works and the hole closes in the next few weeks.

On a side note, Owen is such a handsome little man and he is getting so much attention at KU Med.  Doctors, nurses, strangers stopping us to tell us how cute he is.  He even got a "he is the cutest little boy I have ever seen" from a complete stranger.  He also had nurses coming in who were not assigned to him and said they heard he was beautiful and had to see him.

Please pray for Melissa.  The ICU is not the best place for parents to have to stay.  The room does not have its own bathroom or bed for the parent.  There is a chair that folds out.  I hope she gets some sleep.