Quick Update

Well, it was a bit of a rough night but Eric and I were both here so one of us slept while the other tried to console Titus for a couple hours, then we'd switch. The little man is sleeping now and all three of us are pretty exhausted but the doctor came in this morning with good news, Titus can move out of the PICU and onto the regular pediatric floor. As soon as he wakes up we're going to scoot over there and then see how the day goes. Doctor stopped all heavy pain meds so we're down to Tylenol and Motrin. If he has to take those consistently all day we'll stay in the pediatric unit tonight. If we can cut back a bit and the pain seems to be subsiding we may get to go home tonight. Thanks again for all the prayers! The constant support is greatly appreciated and doesn't go unnoticed. I'll post again tonight. Happy Tuesday!

My Little Trooper

Well my little man is back in the ICU. We came to St. Luke's this morning to hopefully get Titus on track for normal growth and development. After months of specialist visit after specialist visit, Dr. Beck was finally able to pinpoint the main problems, all of which were in his throat and nose. 

(For more detailed info scroll down to the post right below this one)

After

Before

A major part of today's procedure was to open up Titus pharynx as it was abnormally small. To the right is a before and after picture. Can. You. Believe. It?! Look at how tiny that hole was before the surgery today. No wonder the kid sounds so raspy, it's a wonder he was even able to breath.

The surgery went very well and was surprisingly quick. The recovery on the other hand has been a bit of an uphill climb. He was in recovery for about 3 hours longer than expected due to the fact that he was gradually sounding worse and worse and we weren't able to get his breathing under control for a while. His oxygen saturation should be at 90% at the lowest and his was dipping right around 87%. Titus was scheduled to have one oxygen treatment and ended up having one every hour for four hours. Naturally the staff wasn't comfortable sending him anywhere but the Pediatric Intensive Care unit for the night.
So here we are. Titus is doing ok. I can tell he is very uncomfortable and in a bit of pain, but they are staying on top of his meds and those are thankfully relieving him , even if only briefly, and he is usually able to fall asleep for 20 to 30 minutes at a time. It took him quite a while to get up the energy to eat but he seems to be eating normally now and is keeping it all down. He goes in spurts, he'll sound a little better then a little worse. He'll seem comfortable then have a coughing spell but overall he is much improved since recovery this morning. We'll be here tonight and all day tomorrow and may even have to stay tomorrow night but we will see. Even though it's scary and hard being back in the intensive care unit, I know its the best place for Titus to be. He's a trooper and such a brave little boy. Thanks for all the love and prayers! I'll continue to keep you updated.

A Bit of Doctor Talk, If I May

I would like to just start out by saying I know very little about the anatomy of the throat and ears so I may not say everything the way I should and I might not make complete sense in my explanations but I have gathered a lot of information from Google and compiled it with what the doctor said this morning and the paperwork I was sent home with and came up with the following.

After months of questions, multiple specialists, too many appointments to count, and test after test after test I think we've finally had a breakthrough. This morning I took Titus to see Dr. Beck, a nose, ear and throat specialist and after a very informational three hour appointment, I left feeling very overwhelmed. She put a scope down his throat to take a look around and found that the opening in his pharynx is abnormally and alarmingly smaller than it ought to be. She said she was surprised that he was even able to breath let alone eat and swallow.

'The pharynx is the part of the throat situated immediately below the mouth and nasal cavity and above the esophagus and larynx. The pharynx is part of the digestive system and also the respiratory system; it is also important in vocalization.' So says wikipedia (I forgot how to site my sources....obviously!)

Dr. Beck also said that he has stridor (noisy breathing), which 'can be caused by any process that causes airway narrowing. In the infant, stridor usually indicates a congenital disorder (problem that you child is born with).' This obviously goes hand in hand with the narrow opening in his pharynx.

Another issue we addressed at the appointment was the fluid in his ears, behind his ear drums. Doctor said that the fluid is causing him to hear things as though he is under water and is probably the cause for delay in speech and babbling in general. She seemed far more worried about the left ear than the right, which I'm pretty sure is the ear that almost failed the hearing screening in the NICU.

The solution to both: surgery. This Monday. It will be done at the St. Luke's downtown early in the morning. He will of course be sedated and he will spend the day there as well as Monday night and possibly most of the day on Tuesday.

Doctor will be preforming a myringotomy with tubes, which is 'a surgical procedure that makes a small hole in the eardrum through which fluid can be removed from the middle ear. A tube is inserted in the hole, allowing air into the middle ear. This prevents fluid from building up again.' This is seemingly simple, should only take 8 - 10 minutes. Titus may be uncomfortable or even frustrated after the procedure due to the change in middle ear pressure and also the increase in hearing but he should adjust pretty quickly and will be able to hear normally immediately after. 

Doctor will also be preforming a direct laryngoscopy bronchoscopy. She said she will be using a rigid and fiberoptic scope to pass through the mouth and down the throat, at which point she will use a laser to make the opening in the pharynx a bit wider. Then she will pass through the vocal cords. She will be able to see the entire anatomy from there and will be able to assess the right and left lung and will sample secretions and send them off to pathology to evaluate for aspiration and reflux. 

This procedure is much more invasive. Titus will have about a 4 to 6 week recovery time. For the past year he has learned how to swallow and breath in a way that is completely abnormal so the weeks after surgery will be all about learning those things all over again. They will monitor him, specifically his breathing, for at least 24 hours after he gets out of surgery and will keep him longer if things don't seem to be going as smoothly as they would like. We'll be home by Tuesday night, fully loaded with reflex medication, antibiotics, and a nebulizer.

I also forgot to mention that Titus' adenoid is much too big causing it to be very difficult for him to breath through his nose due to excessive mucus production. Doctor will be removing that as well by performing an adenoidectomy. Most of the time the tonsils would be removed at the same time and even though his are slightly bigger than doctor would like them to be she has decided it it best to keep them in there for now because they don't seem to be causing Titus any discomfort or problems.
(The adenoid is highlighted in green.)

The next couple of weeks will hold their challenges but they will also be so rewarding. My sweet boy will be able to hear clearly, he will learn to eat and breath properly and instead of using up extra calories with those two tasks he will be able to put so much more of his energy into growing and learning! He has an occupational, physical, and speech therapist coming out every Friday for the next couple of months to help him learn how to sit, crawl, walk, and talk and I am just thrilled to see everything that Mr. Titus is capable of without his current restraints.

Well, I know that's a lot of information and is a bit much to digest, trust me, it's taken me all day to wrap my head around it and I still feel like I'm missing pieces. If you have questions, feel free to ask! I'll keep you updated while we're in the hospital and after. I'm so proud of my little trooper...after months of poking and prodding and we can finally see the light at the end of the tunnel. Until next time, happy blogging! 

A Night Out With The Fam

For Christmas this year mom and Mark got all us kids tickets to go see the Idaho Steelheads, VIP style! Mom, Mark, Ethan, Cole, Joey, Garrett, and I all met up last night around 5:30 for a fun filled night at the restaurant section of the CenturyLink arena. The food and drinks were unlimited and oh so good and the company was even better. We got a table right at the edge of the balcony so we all had a front row seat. The Steelheads lost 3 to 4 but I honestly think we watched maybe 20 minutes of the game throughout the night. The boys were paying more attention I think but us girls just gabbed and gabbed all night; work, clothes, future plans all floating around in our heads and confirmed by each other's encouraging nods and positive feedback. I am so blessed to have such a wonderful mother and sister that have always and will always support me. It makes me so happy to know that the three of us are truly best friends and that we have created a bond that would be impossible to break. 

Thanks for the fun night mom and Mark! I think it's exactly what everyone needed and it couldn't have been more fun!

Revamp

I am happy to say that I finally have the internet. After months of holding out, four to be exact, I decided it was time to join the 'real world.' So I cracked, I have a cute little box with green glowing lights that reminds me on a daily basis that I am officially 'connected.' I do have to say though that since I am spending more time on the internet I have been spending less time watching TV which is always a good thing. 

I also got a new laptop this month and when I signed onto my blog for the first time in almost six months and was able to look at it on a full screen I almost cried! Unfortunately most my picture got deleted when I was redoing my photobucket account and it's just making the whole thing look very sad. So I'm going to clean this thing up; get it looking all pretty and presentable again and hopefully start posting on a more regular basis. I'm also looking forward to reading all YOUR blogs since I haven't had the time or resources to do so in quite a while. Thank you for the constant support and I hope all is well with everyone. Happy blogging!

Happy Birthday To You

I can't believe I have been blessed with this little life for a year now. Titus, you mean everything to me. I love you more than words could ever say and I'm so excited I get to spend the rest of my life being your momma. Happy Birthday my sweet, sweet boy!!


The Big Surprise
http://bassettmommy.blogspot.com/2012/01/big-surprise.html
Life in the NICU
http://bassettmommy.blogspot.com/2012/02/life-in-nicu.html