I am not am MD.....but....I am thankful to God for the MD's.....but I am an M.O.M
You also may know I document......EVERYTHING!!!!
Please visit Joe's store and check out the designs I have created...If you are someone or know someone with a sick child or medically challenged child you probally also know a MOM or are a MOM that would really appreciate this shirt or other products......
http://www.zazzle.com/jhaustin/gifts?cg=196692342134902564\
HAPPY 15th Birthday to Tyler ....... What a huge blessing to US ALL!!!!!
I am so proud of him.......
Below is really just a PICTURE journal of some recent times here at the resort..with a brief update....May you ALL Remember that Jesus is the reason we celebrate this Season....
ALL God wants for Christmas is YOU!!!! and it is HIS Birthday after all:)
AVERY is showing you the sign that was made for his BIG brother Tyler....
Just smiley
Haaaaa ....that was so funny mom
Why don't you just let me change the Vent settings myself mom...Please????
Music time
Avery is saying "Happy Birthday Tyler....
The fabulous Four together ...again!!
Mom and her Birthday boy
Me being me
Hey there everyone...how are you today??
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Mr.Blue eyes!!!
Who's a Happy boy???
As I was saying mom......you can see all my teeth if you just look right here:)
Avery has an extra chin going on
The OLDEST and The YOUNGEST!!!!
- I am somewhat happy to say that my suspicions have been correct about Avery's GI tract....
- Avery's de-sats have correlated with his GI pain and.... since NOT giving him anything in his G-tube and only venting him ...his de-sats and turning blue have been significantly decreased;from 20-30- episodes a day to maybe 1-2 every couple days Praise God for that!
- He has been getting ALL medications in his J-tube...and now he has been getting his feeds in the J-tube....however he is still gagging,retching....he gets medications so frequently that he is off feeds for 9-13 hours a day....NOT a good way to really see how he is handling feeds;let alone increases in feeds.... at times his gagging/retching,ends with loads of stuff coming out of his nose...YUCK!
- Avery is still not being fed in his GI tract(G-tube)...and we are not sure he will ever be
- He is still getting TPN Total Parental Nutrition for his nutrition and WILL be going home with TPN (as that is the plan as of now.... )He gets his fats,nutrition through his Port Catheter..... AND it's working as of today he weighs...Are you ready???.......23 lbs 8 oz...WOW...the goal is to work feeds up VERY slowly....and then work pour way off TPN
- We have been working with Avery's primary GI doctor and the consulting team;they are rather stumped as to why he continues to retch and not handle his feeds/medications...
- Avery has started a new motility medication....his retching seems slightly less;but gagging and reflux/arching is increased and pain is somewhat increased
- Avery is on antibiotics for the THIRD time this ICU visit ...he has another infection;thank God it is not a line infection:)...the course of this medication should be complete after about 10 days of being on it
- Avery remains on the vent and the PLAN is to go home with the vent
- Overall Avery's seizures have much better than they have been ;but somewhat increased the last few days ....his medications have been increased ...YET again!!
- It was during a discussion with the neurologist that I was told Avery has--- Lennox–Gastaut syndrome (LGS), also known as Lennox syndrome, is a difficult-to-treat form of childhood-of epilepsy and is characterized by frequent seizures and different seizure types ...this was not a surprise to me
- Avery may have Horner’s syndrome---Horner's Syndrome refers to a constellation of signs produced when sympathetic innervation to the eye is interrupted.Horners Syndrome....which it appears happened after surgery's in Oct....this just has to do with his pupil size/dilation... An interesting thing to note is ---OUR daughter Devynn has had Horners since birth!!! things that make you say hmmmmm
- We hope to be home for Christmas....but God only knows
- Avery's pain is continuously addressed...this is regarding his GI pain ---
- Due to one of Avery's seizure meds his hair is thinning......I have been told that it will decrease...
- I have been getting Avery up in his chair more often and he is doing better each day) Praise God!!!
- At separate times; Joe and I have both replaced the Trach ..we make a good team!!!
- I do trach care daily and it is going fine;Avery had to have some granulation tissue silver nitrated(burnt off )
- We have been doing vent training and I set up one for our home vents here at the hospital yesterday ...YAY
- I have de-accessed and accessed Avery's Port...YAY
- I have drawn up Avery's Thrombate (Blood )..
- We have LOTS to accomplish to bring him home by Christmas....continued prayers would be appreciated .....
- He will likely go home by ambulance.....
In all of this ....I am so glad that God is in Control.....prayers for ME as I continue to keep that at the for front of this Life God has Trusted me with.....God never said it would be easy.......We should all be delighted to know he has Trusted US enough with challenges in our lives....
This Little Piggie went to Children's Hospital
This Little Piggie Stayed HOME
This Little Piggie .......got eaten up...and the others ALL ran home!!!!ha ha ha
A little note.....
We call our kids The Three PIGS and a Baby...PIGS...Portuguese,Irish ,Greek,Swedish
Practicing to access the Port.....on Chester!!
I just wanted to THANK everyone once again for ALL your kindness,prayers and supports you have given to our family....YOU may never know how much it means to ALL Of us...We Thank God daily for YOU!!!!
Thank you in advance to those willing to help as we prepare (Cleaning Party Sat)for Avery's home coming before Christmas....
May God contnue to Bless you:)
Remember what's important as you approach this CHRIST -MAS...
