Our ENT Visit

Yesterday we met with Dr. Reddy...which we thought was going to be a consultation prior to surgery...from what was said at Riley we were under the assumption that the obstruction was due to the tonsils and adenoids...Well, this appointment was for us to find out what exactly was causing the obstruction.  Dr. Reddy scoped Nicolas and said that his tonsils and adenoids are small and that his airways are open.  The obstruction is due to a Pharyngeal collapse (floppy airways).  This happens twice an hour.  He does not recommend any surgery to remove anything because that wouldn't rid Nicolas of an obstruction.  He will continue use of oxygen because at this time the oxygen is helping but if Nicolas continues to have a difficult time breathing, seems uncomfortable or gets worse he will need a trach.   A trach will remove the obstruction and his breathing will be quiet and less labored.  We would still have to suction secretions.   I'll let you know more about a trach once I learn more about it.

Due to what we now know, we have many questions for our doctors at Riley.  We meet with developmental peds at the end of May...hopefully they'll have some answers.  This is not what we expected to hear from the ENT...  Good news would have been "lets remove the tonsils and adenoids" ...this, we are not sure what to think... It's a new symptom and that has us extremely concerned...especially since his sleep study in August (6 months old) came back normal and our latest sleep study didn't.

Thank you for your continued support and prayers.  

We need them!

Felisa

A few Nicolas Updates...

We found out from Riley on Monday about the sleep study results.  Nicolas does have an obstruction that lasts about 18 seconds.  Dr. Kilani said that we now need to see an ENT to have his tonsils and adenoids removed.  We are hoping to see Dr. Reddy here in Fort Wayne but Dr. Kilani wants to make sure he feels comfortable working with Nicolas.  If he doesn't then the procedure will be done at Riley.  After the surgery Nicolas will stay in the PICU until he has recovered.  Swelling of the throat after this surgery can cause many difficulties for little Nicolas so they want to keep an eye on him.  At that time they will also begin weening him off the oxygen.  That is when we will start to have a better understanding about Nicolas and his need for oxygen.  

As for his teeth...

Last Monday Nicolas' other bottom tooth fell out.  This time it wasn't traumatic for him at all.  I think he probably loosened it when he lost his first tooth.  With the constant pressure being applied to the tooth from him clamping his jaw...it just worked its way out!  He didn't even cry.  Jake and I are actually relieved about the tooth because now he can't do any more damage to his poor little tongue.

Thank you for your continued love, support and prayers!

Much love,

Felisa 

Nicolas and What We Learned from Dr. Walsh

All our doctors at Riley have been wonderful but Dr. Walsh just might be my favorite.  He was very patient and listened to all our concerns and while being extremely compassionate answered the things we wanted to know but not necessarily hear.  Jake and I knew going into this meeting that at this point there isn't going to be a miracle drug and that the cause (if any) isn't going to bring all good news.  On Tuesday someone finally gave us some answers and while not definitive they give us a place to start.  We will continue to hope and dream for more.  

Dr. Walsh said that the longer we go without knowing the cause the more likely it is that we won't ever know...and at this he felt that there is a 20-30% chance of us knowing the cause.  On the plus side, he said that regardless...treatment wouldn't change.  So we know that we are doing everything we can for Nicolas.  Dr. Walsh feels that this is a genetic issue.  He ordered blood work to test 3 different genetic possibilities (none of which are degenerative).  The results will take 4-6 weeks to get back.  

As for Nicolas' development.  Dr. Walsh said statistically speaking Nicolas is not likely to walk or have full use of his arms...AND that he may develop some head control, social smiling, social sounds, and tracking.  Due to the severity of his delays along with the infantile spasms children similar to Nicolas have a 80-90% mortalilty rate by the age of 10.  Most of this is due to illness and their inability to fight it.

As for the muscle biopsy, he recommends that we wait until Nicolas is 2 years old.  Waiting until he is two allows them to get a better muscle sample.  Even though we wait, knowing whether he does or doesn't have a muscle disease wouldn't change his current treatment or their opinion of his possible outcomes.

What we asked for was statistics and thats what we got.  It is important for us to remember that this is not the final say for Nicolas...it gives us guidance for our prayers.  God is mighty and powerful and with us always.  Only time will tell what is in store for Nicolas.  BUT his life is precious and it will be wonderful.

We will hold him, kiss him, and tell him each and everyday just how precious he is...and thank God for this precious gift He has given us that has blessed us in so many ways.  Thank you for your support and prayers.  He does hear us and He knows our hearts!

As said in Gratitude by Nichole Nordeman....

Oh, the differences that often are between 

What we want and what we really need 

So grant us peace, Jesus, grant us peace 

Move our hearts to hear a single beat 

Between alibis and enemies tonight 

Or maybe not, not today 

Peace might be another world away 

And if that's the case . . . 

We'll give thanks to You 

With gratitude 

For lessons learned in how to trust in You 

That we are blessed beyond what we could ever dream 

In abundance or in need 

And if You never grant us peace 

But Jesus, would You please . . .

Riley Appointment Cancelled

Today we were supposed to go to Riley to see Dr. Kilani about our sleep study results, but they had to cancel it because they don't have the results yet.  They are going to try to fit us in sometime next week.  

Just wanted to let you know!

Thanks,

Felisa

The Tooth Fairy Came Early...

At 11:00 last night I took Nicolas back to bed and I noticed the tooth was practically out.  When I touched it with the end of the pacifier and it fell out.  I cried.  All day long I watched him go through so much pain that ended with him losing a tooth.  I just wanted the day to be over.  

This morning, at the Dentist, we found out that the rest of his teeth are fine, his tongue looks good and shows no sign of infection, and if this should happen again, we can call our new dentist any time and he will come in to help us so that Nicolas does not need to go through anything this traumatic again.  He did say his tongue is pretty beat up and if he continues to bite it than he will remove the other bottom tooth (in a much less painful way).  

Today was much better.  He is getting some much needed rest.  He is relaxed and comfortable.  

Thank Heaven!

Thursday night (4 p.m.) we leave for Indy for the sleep study.  I am going to my friend Renee's house for dinner before we go to the Clarion North location at 8 p.m. (...my friend Sara will be there too...)  They said Nicolas will be done between 5 and 6 in the morning...Jake is flying into Indy late Thursday night and has a meeting Friday morning with his boss.  So after Nicolas and I get cleaned up, we'll go pick Jake up and drive home together.  We won't have the results until Monday.

Please continue to pray for little Nicolas!

Much love,

Felisa

Nicolas' Poor Little Teeth...

Lately Nicolas has been clamping his jaw so tight that you can hear his teeth grind.  Today when he did it during therapy, we saw a little blood...so I pried his little lips apart to see if he was biting his tongue.  He wasn't but his top teeth cut into his gums in front of the lower teeth.  After that, it got worse.  He proceeded to get upset to where he has loosened a tooth on bottom.  One bottom tooth is hanging in front and the other in back of his top teeth.  Every time he gets upset he clamps down biting and cuts the area between his two bottom teeth.  We are trying to keeping a pacifier in his mouth to help prevent further injury.  I'm very heart broken and feel helpless...but I called Riley and they're trying to help us.  They have upped his Valium (to try and relax him), I am going to give him Tylenol, and we have an appointment tomorrow at 9:20 to see a Pediatric Dentist here in town.  If you have been following this you know he has ALWAYS clamped his jaw...nothing is getting in there!  We have constantly asked the Doctors what can we do to relax his jaw...and at this point they're are doing everything they can.  When he is older they can Botox the muscle...but not until he is 2!  So we keep waiting!  It is so frustrating...   I'll let you know what we find out tomorrow.  Please keep Nicolas in your prayers tonight...It is so heartbreaking to watch.