Goodbye

Saying Goodbye to the CPAP!!!  We hope to never see you again! 

I am so proud of how you handled wearing this thing for over a year Carter.  It is amazing how easy going you were about it, and how you would keep it on at night.  You rock my little man!!!!

Results are In

All the test results are in for little Carter.  I have been having people calling wanting to know all the findings, so here it is for you all.  Do you like the bad news or the good news first?  I prefer the bad stuff first, so here we go:

CT (head)

- Right side of jaw smaller than left (No new news here, we knew that)

- Small chin (didn't need a fancy test for that)

- Open airway

- Adenoids are HUGE (have to have them removed)

CT (Chest with Contrast):  add on test after findings from scope

- Accessory bronchi going to right lung

- Have to make appointment with General Surgeon to discuss what this will mean for Carter

- My interpretation: Carter is just more special than we ever thought 

MRI

- Chiari 1 Malformation

- Flow of spinal fluid is being interrupted

- Have to make appointment with Neurosurgery to discuss what this will mean

- If you don't know what this is, Google will do wonders for you

Echo

- Perfect :)

- See, I told you there was good news!

Sleep Study 

- Apnea: 0.8 (That would be like nothing!)

- Lowest oxygen dropped was 83% for just a second

- Snoring noted (which could clear up once adenoids are removed)

- No longer needs to wear CPAP

- Best news was have had in a long time!

So there you have it.  When we scheduled Carter for all these studies, I was thinking we were just going to get information on how to improve his breathing at night.  I had this thought in the back of my head that we could find out something else unwanted, but that was all it was, just a thought.  So now that we have the information, we get to try and figure it all out.  

I love you dear Carter.  We will figure all this out, and hopefully it will just be a memory soon enough.  You are tougher than any person I know, and I know you will handle this like the champ you are.   

Testing

Carter had a busy week in Detroit.  Here is the schedule that he endured like it was no thing: 

Monday: Echocardiogram, 5 hour break in the hospital, Sleep Study

Tuesday: Direct Laryngo Bronchoscopy, CT Head, CT Chest, MRI Head

And, he was AMAZING through out the whole thing!  Anesthesia was amazing at the hospital, and made me realize that I only want Carter to be put under at a children's hospital from here on out.  I was so proud watching Carter walk into the OR in his little outfit, with about 15 people trailing behind him.  He was really brave, and I could not have asked for a better kid.  And, Carter slept like a champ during the sleep study.  Plus, he let me curl up next to him the whole night so I didn't have to try and sleep in the horrid recliner they had for me!  I am so blessed to have this little man in my life.  Hopefully the results will be in soon, and we can get some answers on how to help Carter out!

Brave Boy Again!

Carter and I had to head into Flint (AKA Most Dangerous City in America) at 4:45 this morning to the hospital.  He had to have dental work done under anesthesia.  This is the first time that Carter had a procedure done at a non-children's hospital and it made me nervous!  He had to have caps put on and cavities filled.  Due to his small airway, they could not do it in the office.  So, it was off to the hospital.  Any time Carter has to have general anesthesia, it is a big deal.  When I got there, they sent in a CRNA to do the case.  WRONG!  I had to explain to her very nicely that Carter was very hard to intubate, and only an anesthesiologist confident working with children and small airways would be working on my son.  So the sent in the angry anesthesiologist.  Really, have you ever met a mean anesthesiologist?  Apparently they have some in Michigan.  

When it came time to wheel Carter back to the OR, they informed me that the anesthesiologist said I could no longer come back there with him.  Oh, they were messing with the wrong Mommy here!  They said because of his airway, they were not going to be able to gas him before they placed the IV.  So, they did not want me back there because they thought I could not handle watching my son get an IV.  Yeah, they might be right, I HATE watching my son get an IV, but there was no way I was going to make him go through that by himself.  After arguing back and forth for a few minutes, they finally gave into me.  And I will be darned if that anesthesiologist had to poke my baby TWICE!!!  Gosh, it was hard watching Carter go through that, but I saved my tears for when I got out of the room.  There was no way I was going to let that mean Doctor think I was a wimp.  

As far as surgery went, Carter did great.  He has a couple of caps and some fillings, and freshly cleaned teeth now.  Once again Carter you were AMAZING!  I was so proud of you for your bravery and how strong you were.  I love you sweet angel!  And, thank you for your amazing snuggles after surgery!  I know it was the drugs making you curl up on my lap for so long, but I still loved it!       

He LOVED the socks!

Deep breath Riley.

All Done!!!

Let's get out of here Mom!

Jello and Movies all day long!

Fairy Dust

Not long after we moved to Michigan, Carter came down with a tooth ache.  One morning, he woke up with a swollen cheek, the size of a golf ball!  After going to a few different dentist to find one that we actually liked, it was decided that we need to have the tooth pulled.  Because of Carter's small airway, it was not safe to sedate him in the office, so we had to schedule him to have the tooth pulled in the OR.  Surgery is booked out until September though, so that was just not going to work for us.  After putting it off for a few weeks, I decided that Carter was in too much pain to wait until September.  So, we rushed down to Flint, to have the tooth pulled out in the office.  He had no sedation, so he is forever afraid of the dentist now.  The whole situation was horrible, and I am hoping we will never have to do it again.  

We still have to go to the OR to have some cavities filled and get his teeth cleaned.  We are on a wait list for that, so hopefully we can get that done soon.  

The only positive thing to come out of this situation was that the Tooth Fairy got to visit our house.  Carter was super excited to put his tooth under his pillow, and could not wait to see what was left for him in the morning.  When he saw the money, his response was "Thanks Mommy." :)

I am once again beyond proud of you little man!  You are a trooper, and continue to prove to me how amazing of a little boy you are!  

Why?

Why did Pierre Robin ever have to be known to my family?  Really, I hate it!  You know how people talk about what a blessing some diseases or accidents have been to them?  Well, I really have found no blessings in PRS.  Trust me, I have tried to see the good.  My son struggled through hell, pain, and torture this past October and November in hopes that he would come out of it all breathing like a champ.  And the results... Worse than before the Mandibular Distraction.  Dr. Muntz called and said this last sleep study we just did was worse than the one in September.  Is that even possible?????  Carter had an average of 109 "episodes" (where he stops breathing) in one hour.  That's 2 per minute people!!  Dr. Muntz said even if it was half that, say 50 episodes, it would still be a bad sleep study.
Game plan: to do a scope in the office to see if we can see any other obstructions and to make sure his palate is working the way it should be.  No, this appointment is not set up yet (adding that for Mema and Aunt Nanna).  Hopefully super soon, seeing that Tim is going to be leaving in a week...  And, we will go from there.  Some possibilities after that would be an at home pulse ox study or a CPAP.
Needless to say our house tonight has been full of many tears, many hugs for our little man, and no "No's" for him.  I am so angry he had to go through the Mandibular Distraction for nothing, nothing at all.  My sweet boy will forever have the scars on his face to remind him and us of that terrible time that now continues to only get worse.  Please pray for my sweet angel.  

Even this outside our front door could not make us feel better.

Just When

TUBBY

Just when things were looking so good for Carter, our world came crashing down on us. Last night I noticed a hole in his palate. We knew this was a possibility after surgery, but really, can we not get a break with this little guy? He seems to always fall on the crappy side of the statistics. Tonight he had dinner coming out of his nose. I lost it. He has been through so much, it is just not fair. So, as of now we wait and hope that it will close up on it's own by our Dr's appointment the first week of January. If it does not close up on it's own, then it is back to surgery. Another time giving my son away to anesthesia, another hospital stay, another horrible recovery with my little man in pain... So if you need anything to wish for this Holiday Season, can I ask that you wish for Carter to heal that hole himself?

Carter is out of surgery and we are up on the floor. Just working on keeping him breathing well and controlling his pain. It might be a long night.

Repair

Carter is in surgery right now. He did wonderful again going back with the anesthesiologist. Right before the surgery, I asked Dr. Muntz to clean out his ears for me. It was a good idea, because when he did it, a lot of fluid came out of both ears. So, they are also going to put in tubes along with taking out the distraction pins, and repairing the palate. He is our little trooper, and we are super proud of him!!!

Another One

Carter is scheduled yet again for surgery on December 2. He will have the distraction device removed (Yeaaaa), and he will also have his palate repaired. I am so excited to get that stuff off his face and to be able to cuddle in his neck again!! The surgery will be 2 hours long about, and we will hopefully be able to leave the hospital the next day. Dr. Muntz told us to plan on a few days in the hospital just in case it takes a while to get his eating up to par. I can honesty say I am tired of my baby boy being in pain and having to go through all this. I know it is the best to have all this done at once. That way we only have to go under once, but I am not ready just yet. I feel bad for little Carter and just want to give him a break. Oh well, soon all this will be over. Mom and Dad leave on the day of surgery and I am trying to talk them into staying for a few more weeks. What's a couple more days??? Carter will have to be in arm restraints for about 2 weeks, so I am really not looking forward that that!!!! So, keep my little man in your prayers, he needs them!!!!!

Consolidation

On Tuesday the 27th, Carter went in to have his Consolidation bars put on. We had to stop distracting his jaw on Saturday due to the extreme amount of pain he was in. We did not know what was going on, but we could no longer let him suffer like that. It was a sad realization, because we did not get the jaw pulled out as much as it needed to be. And also the right side of his jaw needed to come out more, and we were not able to do that. So, the surgery did not go as we had hoped, but we gave it our best shot. Our main goal was to improve his breathing, and that was accomplished. For the future, he will need lots of orthodontic work, and possible the Mandibular Distraction again.

We had to go into the OR to have the consolidation bars put on due to the amount of pain Little Carter was in. It is always hard to give your baby up when you know they are going to put him to sleep. I am not sure I will ever get used to it. While they were in there, they were able to find out that the top pin on the right side had pulled through the bone. That is why he was in so much pain. I could only imagine how bad that had to hurt. It just breaks my heart thinking about it. He now seems to be doing much better, and we have gotten lots of smiles out of him finally. The consolidation bars will probably stay on for about 6 weeks, and then we will finally be able to get in his neck again and give him kisses!!!!

Tim is finally feeling better after surviving the flu. He however has passed it on the Carter and Me. I did get Carter started on Tamiflu, so hopefully that helps him through this. Seriously, he has been through enough this month!!!

The pictures are just before surgery. Sorry no pictures of his New Bling yet, I will try to get on that tomorrow.

Distration

Carter has been doing so well since he has gotten home. Last night he slept in his bed, on his back, and we could hardly hear him breathing!!! It was so amazing!!!! It just makes us so happy to see his chest rise like a real person, in no distress at all. We are so happy with the progress he has made. It truly has been such a blessing to see him no longer in distress.

We went to his first Dr. appointment today. Dr. Muntz distracted him to the side so we had more room to move forward with his jaw. It is really neat how the distraction process itself seems not to hurt him. The resident was very excited to see Carter and said Carter was his favorite patient. It was cute. We are going back on Monday for some more distractions.

So, all in all Carter is doing amazing, he is off the pain meds and making great strides towards breathing like a champ. Go Carter Go!!!!

Home

We got to finally go home on Saturday. It was so great to finally walk out of the hospital with our little man after 5 days there.

Day 4

Today was the best day yet! Carter got some OK sleep last night, and woke up ready for a nap again. We did his first distraction this morning for the first time, and again tonight. He handled it really well, and it is easy to do. Mom and Dad came again today, while Tim and I took a walk outside. Carter ate 16 ounces today, and is working on another bottle right now. He is looking so much better. We are just using the Lortab now for pain. If all goes well tonight, we should be heading home tomorrow!!! We can not wait, especially since we now have a noisy roommate!

Improving

These past few hours, we have noticed a big improvement in Carter. He is smiling, laughing, and giving fives. He took a couple of good naps in my arms today, and got to take a sponge bath. He also received a nice surprise delivered to our door. Uncle Jason and Aunt Steffany had a dog and balloon delivered to him. He is in love with both. His favorite color is red, so the Elmo balloon was just prefect. And the dog, Tim and I have named Scrappy. Once you meet Scrappy, you will understand. We are not sure how Kenai will get along with Scrappy... But Carter loves him!!
Happy Birthday Grandpa. Sorry we could not see you today, but Carter ate some Ice Cream to celebrate.

Day 3

Last night was a rough one. Carter seemed to be in a lot of pain, and was not able to go to sleep until 3:30 AM. They came in to draw blood at 6:00, so his sleep was short lived. He is now asleep again, with a lot of pain meds on board. Hopefully he will be able to get some rest today. The doctors will be coming back at some point today to remove his drains and the distraction starts tomorrow. Oh the fun never ends.
The sleeping accommodation at the hospital suck, but their complimentary breakfast cart rocks. Tim found a couch in the middle of the hall last night to sleep on. I slept on a tiny pull out chair. Dr.Muntz said if we were comfortable with the distraction, then we could possible go home on Saturday. Lets hope for that!!!

The IV that they had started in surgery infiltrated tonight. They had to start a new one, that they thankfully got on the first try. It was horrible for both Carter and Me (Tim somehow planned to be down getting dinner at the time...). Carter is now finally resting peacefully in his own bed. Let hope this last all night. He ate about 6 ounces today.

Day 2

Carter slept well last night, only woke up about 3-4 times. We are keeping him nice and up on his pain meds so we don't have to play catch up later. He is seeming to be in quite a bit of distress at this time, and wont sleep. We got out of the ICU this afternoon and are now on the Med/Surg floor. Mom and Dad came up for a visit and babysat for us while we took a walk outside. Well, Mom babysat, and Dad, as you can see in the pictures took a nap. Let hope for lots of sleep tonight for Carter and to a better day tomorrow!
Carter's new name: Chipmunk.
These are all the pictures we have taken today. I don't have the energy to sort through them and just post the best, so you get them all. Enjoy.

Out of Sugery

We finally got to see Carter around 4pm. He is in the ICU for the night and doing well. There were no complications with surgery. We are so glad to be done with the surgery itself. Carter is still a bit drowsy, but such a love. The nurses said he just tried to climb out of the bed right when he woke up. Everyone is of course in love with him. We are so proud of him and cant wait for him to start feeling better. Hopefully tomorrow morning we will be able to go to the floor where the room will be a little more private. We are also looking foward to feeding him in the morning. It looks like we will be here until Sunday or Monday. Keep him in your prayers, he needs them!! Warning to Uncle Jason: Pictures may be too graphic for your stomach and heart, I am warning you!