Welcome Home....well our almost home....
but no More funny business allowed Boss Avery ....or you can't Stay here on 9 east!!

Tuesday night we came back to our home away from home:)

Avery was looking better, he remained on O2, neb treatments, chest pt and suctioning....the last couple days ....he has been really smiling & having some nice happy moments....he is totally charming ALL the nurses!!!!

He continued to have this mysterious rash that kept coming and going.....no clue what the deal is with that.....

His antibiotic was suppose to finish up early Weds morning, but it was decided to continue for a few more days ......Tuesday night he was started on a medication for his nerve pain, his brain damage has affected areas in his system that are extremely sensitive and his feedings are one of the things that seems to bother him and cause a lot of discomfort/pain....we have remained at 1/4 strength formula....and will be increase to 1/2 strength at about 5:00 am.....

Yesterday was a new and different day.....he had been misbehaving ......I guess he figured a good way to get the nurses in here was to DE-SAT....he went very low for over 15 minutes...and we had to turn his o2 up much higher than it has been .....and we continued to work at bringing his SAT'S up......Oxygen saturation monitoring measures the amount of oxygen in a child's blood. It helps us know if your a body is getting the oxygen it needs. It also tells them if a child's body is correctly using the oxygen a child is breathing.


So this DE-SATTING....is clearly not a good thing if we want to stay in our luxury sweet....our room is really the kind of room/spot.... people pay big money for a view like this....it's actually the room we call Eithens room (our little resort family/friend...who is celebrating her Birthday Friday....please keep praying for her)...she spends allot of time in this room....Anyway,Avery needs to stop this misbehaving...so we can stay here before we go back to our house real house!

During Avery's period of misbehaving...we had a few experiences with some residents(yes they still came in ).....we started with new residents for the month(ohhh boy)lets just say....I told them straight up..... if they want to come in my room (Avery's room)...they need to have respect for me and listen to what I have to say...and they should have an appreciation for these great nurses...No I really am not trying to control things,by saying I don't want them in here ....but if you knew even close to half of what takes place here you would understand ...I am being an advocate for my child in my approach!

With that being said.....On a side note I really think I'm gonna write a book about things doctors should and shouldn't say to a parent,nurse...and others involved in the care of a chronically ill child....and make sure; it is read before the start of interning...it might save a lot of heart aches and aggravation...(ya know in my spare time I'll do this...ha ha) On a more positive note...We saw his wonderful GI doctor yesterday & CCS doctor ....as I said before they will be continuing him on the antibiotics for a few more days.....and we also talked more seriously about, seizures,respiratory issues, nutrition/feeding challenges,along with central line options....ect...ect....and a few other things!....Pulmonary is going to be consul taed......

In any case His behavior I mentioned above..is....Not a good thing if we want to stay in our luxury sweet....our room is really the kind of room/spot.... people pay big money for a view like this....it's actually the room we call Eithene's room (our little resort family/friend)...she spends allot of time in this room....Anyway,Avery needs to stop this misbehaving...so we can stay here before we go back to our house real house!

As the day continued his SAT'S were more stable with continued O2.....thank you God!

Avery's IV has been in for going on 7 days .....another thank you to God....I call it the miracle IV...however .....we know it's really not a miracle lV...but it is amazing that he has had it in and working for many days!!!

I have learned over the past few years to be humble about things ....but I also think it's okay to be proud of an accomplishment....So I was encouraged by my friend Jessica(aka... Eithene's mom)to be more aggressive about learning how to deep suction Avery...and Weds night(10-11PM)I told the nurse I wanted to learn tomorrow how to suction...she said she would teach me.....(did I mention she's one of Avery's awesome primary nurse here...well she is).....long and short is I just took it out of her hand and said " I learn better by doing it"....So yay...I deep suctioned Avery(not something I loved...but it was necessary) ...this will be a big help..... because I don't have to be totally dependent on the nurse to doing it...because if I have to have them continue to be in here all the time, they will kick him off the floor...and we don't want that!

Avery's seating system......I am appreciative that he has been able to use a demo seat, but really disappointed that his seat is sitting somewhere not being used by him...simply because he's in the hospital...UGH....

My other kids have enjoyed time with family.......and Joe and I really appreciate all everyone has done to help our family....we really really Thank God for each of you!

As I finish this ....Avery is fussing and was just woken with seizures ....I do hope he goes back to sleep real soon....and doesn't start any funny business.....his nurse just gave him Tylenol!!

Well ....that's the latest....from our resort sweet in Boston!

Until next update....God Bless:)

Same "Resort " different summer...
Not really my idea of a summers vacation....but who's ideas and plans ever go as expected??....

An over view of the last week....

Avery went to the ICU for about 3 days.....
He still had been continuing to work real hard with his breathing and so they decide to try a method of respiratory ventilation called CPAP..... see below!

Continuous Positive airway pressure (CPAP) is a method of respiratory ventilation used primarily in the treatment of sleep apnea, for which it was first developed.

PAP ventilation is also commonly used for critically ill patients in hospital with respiratory failure.

However he did not respond well to this method of respiratory treatment... and was back on regular o2....with continuous suctioning and chest pt...along with many different Nebulizer treatments....He also was on 2 IV antibiotics and steroids.....

As mnay of you know Avery has very little IV access and is an extremely hard stick....So I was a little upset to find out that Avery's IV had been infiltrated on Thursday night after I told the nurse I thought this IV was likely done/gone/NO good...(you get the idea)....We needed to get another line which took several failed attempts....I am thrilled that the IV is still working as of this morning....woo hooo....5 days....Amazing!

Infiltration is the diffusion or accumulation (in a tissue or cells) of substances not normal to it or in amounts in excess of the normal. The material collected in those tissues or cells is also called infiltrate.

Since intubation has been something we were able to avoid thus far, Avery was moved to a step down ICU ...called the ICP.....and has been here since Friday....

We have had discussion about Central lines...which his Hematologist does not want to do right now as there are many other things we needs to consider when placing another Central line....

Avery continues on O2 .....and his respiratory status is not baseline he still needs the things mentioned above chest pt/suctioning..ect....however ....Since he has not received anything of real nutrition since last Tuesday and Central Line access is not an option at this time ...and might be dehydrated; we had to start him back on his formula...very slowly of course; and see how it goes.....Unfortunately I don't think it's going so hot as he cried for 2 hours last night...and I am going to talk to the pain management doctor today(I hope)

Vitals still not at baseline...and he is getting antibiotics and many other meds...

He has been having this intermittent rash...not sure if he's allergic to the antibiotic or what....

On another note....I am thinking about firing our epilepsy doctor...I'm a little sick of his lack of attentiveness to his patient(aka....my son)....a story for another time!

I have also decided that just attendings & senior residents will be caring for my son....NO more other residents....I'm all done!

I was excited to hear that Avery's seating system is finally in and ready to be delivered...however...I was told that since he's in the hospital it won't be ....which makes NO sense to me...I am looking to deal with that today..He needs his seat being in the bed is NOT going to help him improve...being up and out will ....even f it is for a little while at a time!

So this is our summer vacation so far....not the "resort" of my choice....last year we came home on Joe's Birthday ...I guess we'll see what this year will bring.....PS...Joe will be 40 in a little over a week!!!

Thanks to all who have helped with meals,kids,prayers, support...and my mom who has had the kids most of the summer!

Continued prayers.....Please!

Trusting in the ONE who is in Control!

God has a plan.....


I know that God has a plan....although it can be hard to wait & when your not informed of what plan is at the time.....

We just have to sometimes wait longer to know what that plan is....


I am so thankful for friends that God has here for me and I for them; while here at the resort... having someone to prayer with ....is such a gift!

It is such a different world here in the ICU....I really miss our team on 9East....I was thrilled to get a visit from one of Avery's nurses and also one from his GI doctor (the one I am constantly talking about...she's great)....I was so irritated last night , that NO ONE had come in all day to inform me or discuss with me the plan of action for Avery's care...So at about 10:30 I told the nurse that I wanted to see a doctor; NOW....I expressed many things; one being that their lack of communication with me needs to change...

The long and short of that is...it has been a little better of a day(the nurses this afternoon have been very attentive) and I have seen the doctor already several times...(I think she got the hint)....part of the plan is for the doctor to talk to others on his team....

Avery's respiratory status : he is on continuous o2(pretty high percent), they are hoping to not have to intubate him(as am I)...he is getting nebulizer treatments very often, along with suctioning(which he hates) and chest pt(which he loves)all the time.....

Avery's x-ray was worse than yesterday.....he has some kind of virus and aspiration pneumonia,they started him on steroids for his lungs along with 2 other antibiotics....they are also giving him 2 bolus's of IV fluids as I type this...he is putting out more than he is keeping in and he needs the hydration ...(believe it or not he is dehydrated).....


I am waiting to see his labs in order to better understand some of what's going on....I do know the labs confirmed dehydration!

He has been off his feed since Tuesday and won't be put back on ...until his respiratory status improves.....he is getting some of his other meds via the IV opposed to the stomach....

The nurse practitioner from CCS just came in to check on him (which s comforting to me)...I kinda asked if we can go back to our floor(knowing full well what the answer was)and of course she said.."you know Grace we'd love to have you back on ,but you don't want to have to turn right round and come back here" ....she continued to say ...that he is not looking good enough for the floor....but that at some point he will be back! ....I was glad to see her:)

I'll post pictures at some point ...I don't have my camera attachment for the computer with me!

On another added note...Joanna our music friend just stooped by; cause she heard we were here....unfortunately Avery was asleep....but how nice was that for her to seek us out....God is good!


So here we sit and wait.....

Therfore will the Lord wait,that he may be gracious unto you ....blessed are all they that wait for HIM---Isaiah 30:18

**We should not only understand the importance of our waiting on God but realize something even ore wonderful ---the Lord waits on us.And the very thought of His waiting on us will give us renewed motivation & inspiration to "wait on HIM"**
----this was in the devotional book I'm reading..


Thanks for all your continued prayers......

Please also pray for our friend Eithene & her family..... you can read her story!
http://www.caringbridge.org/visit/eithenerosehilliard

Moving but not where we'd like to......

Avery's respiratory status overnight has continued to decline....his O2 has needed to be increased along with adding a blow by air and many more Nebulizer treatments...also tried to suction with little to no results...all in all not much success....
His x-ray didn't look real good today!

Unfortunately we will not be staying on our home floor of 9 east...
HE is being moved to the ICU...to receive he much needed respiratory attention....

The only visits at this time; I would say should be just Joe and maybe the kids ,we can't take any chances(No I don't believe chance ,but you know what I mean.... )with exposing him to anything thing else at this time!

Trusting in God ...who is in control...waiting on HIM!
Prayers are appreciated....

***Resort living... isn't my idea of a summers vacation***
But some times your ideas aren't what God may have in mind....


Last Thursday we came home after 5-6 weeks in the resort (aka...Children's)
After many many hours of organizing and rearranging things at the house I finally had gotten things in some kind of order...along with trying to take care of the other needs in the house including 4 kids....I was glad to see some familiar faces...with my nurses....and looked forward to seeing my other nurses next week!

Although Avery's seizures have been increased and as I say it ...OUT OF CONTROL.....his new med was increased yesterday....I hope change comes soon....

The last few days his respiratory status hasn't been great ...but took a turn for the worse yesterday and continued to go down hill today ....His saturation's went very low and his heart rate has been very very high....he has a temperature and not a low grade one...

Due to some tube issues last Friday ....We came in early this morning for what looked like a routine G/J tube change...although Avery had a bad night (Monday...respiratory wise )we got the tube done and came home after that ....when we came home he appeared to going into what looked like respiratory distress....and now had green bile in his venting bag.....

The longgggg story short is ....we are back at the resort......for continued concern/treatment for respiratory distress....After 6-8 tries they finally got an IV in....(Thank you GOD).We are glad to see OUR awesome nurses and friends here, but hadn't planned it to be so soon!


Prayers are always appreciated....as our journey continues (back here at the resort)...Please keep my other kids in your prayers as well...and Joe as this can take its toll...

Waiting and watching are the things that have been mentioned once again....

So I will wait and watch and see what God has planned and Trust that HE has a better plan than ALL!

Trust in the Lord with all your heart and lean not on your own understanding:)

I hope to write more soon...

The many phases and faces and things of OUR resort stay....



This is my monkey ....who shines at night...to bring me comfort and a shining light!
He comes with me wherever I go and brings me music and a little light glow!




Looking out the window I may see my friends in their window waving right back at me!





The S.S. Avery........We didn't want them to forget me!





A parting gift....
As Avery has departed from the resort docks Thursday afternoon/evening...
YAY ...we are home!



Washing away the Birthday sign....was a little sad for me and mine!




More than a painting ...more than a sign...
Lots of memories and even good times!






This was what I mean about secretions.....
he has more than enough to spear...bubbles boy!




Friendly faces around the resort...they even say for my Birthday!





Look at that smile as cute as can be...
I sure am glad God made her a friend to me!
(Please pray for our friend .....)



Big sister...Me and my dad!







Just me!!!





WOW...they are really TALL.....I wonder if I'll be that big one day:)
*Boston Collage Basketball /Hockey girls team came to say Hi...to me!!!




I'm mad...and rather uncomfortable..I wish my mom would loose that camera!









My Birthday balloons ....getting ready to travel....HOME!






She came 2 times in one day




What a blessed boy to have her play!





HI....


My new medication .....


Yes we are home.....with lots and lots to do....to get all Avery's things in order....Many follow up tests, appointments ect....We are extremely thankful for the continued support , prayers & kind words....I will add more pictures in the days to follow of our wonderful staff(I didn't get pics of all ....but I got some)...We will miss our Awesome staff as we appreciate all they did for all of us...

Please continue to pray for OUR 9 east floor family's and ALL the staff...they are all a blessing to our family!

My little BOSS Man!



Avery has been pretty spacey on and off !
We are praying this new med helps him.....have better seizure control!



Thinking ahead....but not to much

There are 24 hours in the day and 11-12 of those hours ...will be occupied with making sure I have drawn up and given Avery his medications.....
Tomorrow morning I need to seriously talk to the NP about combining some meds.....but not to the point that it bothers his GI track to much more than it will already be....if not, sleep will remain the same as it has been....almost not existing.....

This medication plan is not including the neb treatments and G/J tube pedilyite flushes every 4 hours...

Yesterday...the best sounds I heard was..Avery's giggle!!!!!! Music to my ears!
Of course I was tickling him....

During the dayyesterday it was......SOOOOOOOOOO busy ..people in and out of our room in and out...it was like a revolving door....

Avery had lots of coughing Tuesday & Weds ...His seizures are pretty unchanged...in fact maybe a little increased in the area of stuck eyes....today he had a new twitching movement with his left foot...hopefully it won't continue.... Tonight was night(Weds night) 3 of Avery's new medication...we hope to see some positive changes in the next days and weeks to come...I'm praying this med is affective for Avery and that it is also FDA approved real soon....as financial it is going to be extremely difficult for us....
Trusting God..HE'S in control!

Tonight(Weds night...early Thursday morn) Avery has already been up having a seizure party...
I hope he has a restful sleep as today(Thursday) is planned to be busy....


When I think ahead I think of ....Home...
Although I will be glad when we are there.....I know that it will be busier than ever....so please try to understand if I don't update ALL the time or return calls right away....

When I think ahead I think of.....Discharge plans!!!
We have excepted that this is our life and that when we discharge, it could be for days weeks or even months... we hope that when we can go home from this resort stay ....it will be for a while...



Avery and our friend Eithen Rose.....Tuesday out in the garden!


Prayers for our family are always welcome...and please pray for our resort family's as well!!!

music take 2

*More Music... More Fun*

Even though I look unhappy...I really did have Fun!

Music with...Joanna and Kazoo


Here I go onto round # 2..... Maybe I'll be a professional by the age of two!!

I may not look happy; it's apparent to see.....
but I played that guitar, it was my friends and me!



He with the pick ...I with my hand
Almost the makings of a little band



No that's not singing from little me....
Kazoo did the singing just for me:)

I was a little cranky on this day....
But still was happy to get to play





Joanna wanted to play with me too
but by this time ....I was almost through


I couldn't hurt her feelings so I strummed away....
Thinking to myself....I hope this brightens her day:)



So thanks to my friends for coming to play
See you next time on music therapy day:)

This is OUR life.....


Ohh man you caught me....I was just waking up...big stretches!




I think daddy's trying to steal my Binky...
doesn't he know that's just wrong!



Hey there.....all you people...
You got something to say??
You know everyone has something to say!
I got something to say....
Thank you...and God loves you ...ohh and me too!



The Austin Crew..>Andrew , Tyler, Devynn and Avery !


Smiles.....Brighten a day and lighten a dark room!



If I could just get this thing in my mouth...that would be great!!!





My daily Chest PT.....for someone who hates their stomach... He sure looks comfortable...if his home PT sees this ...he's in big trouble!!!
HA HA HA....


Andrew's littlest brother......and answer to his prayer!

Information and what's happenings!



YES---it's say's I'm the BOSS...
Well...I may be the BOSS...but I'm not in control....
(cause I wouldn't choose to have theses seizures)

Feeds are @ 35 and have been for a good period of time....The concentration of the feeds had gone up to 22 cals and remain there...His PH which shows the acid in his stomach is still low....and he is pretty maxed on his reflux meds....So we will just have to bare with it, as the other reflux meds would not go well with his seizure meds.


Speaking of seizures......we had another EEG last weekend(Friday to Saturday) that confirmed that Avery is in fact still having many many seizures; the epilepsy specialist actually said I was right on the money with his seizures(just as accurate as the EEG)....he also said this was one of the more serious cases of Infantile Spasms(IS) he has seen......


These are my brain waves....while having some seizure activity!

Over the past couple of weeks Avery's epilepsy doctor spoke to Joe and I about Avery's seizures and we brought up a medication we are familiar with and possibility in trying it with Avery (we are familiar because ...Andrew has used it to control his seizures for many years)...however after the most recent EEG.....the doctor on service(not our regular epilepsy doctor, but one we like) at this time he was pretty dead set against the above medication....


This is my head all wrapped up with leads under the wrap .... these leads are hooked up to the EEG, which is then hooked to a machine/computer monitor....so they can monitor my seizure activity for about 24 hours!


As it is not really known to be an affective treatment for IS ...and it is not a drug of choice for kids under 2-3years of age...as it is really hard on the stomach(more motility issues...NO THANK YOU) and other side effects are liver damage ...needless to say .....this might be a medication we will need to consider in the future but not one that is going to be considered at this time....


I must have been having a good dream....

Since being diagnosed with IS ,these past few months (since Avery's IS diagnosis)I have done quite a bit of research on IS and the options for treatment ....After prayerfully considering it , Joe and I have finally decided to to try a medication called Vigabtrin it is not an FDA approved medication because of the risk of it causing damage to the retina.Which could mean for Avery that whatever vision he has could be lost...however looking at the other side of it ...if we choose to not do this treatment; regression could continue.The regression that has already taken place is his decrease to no... PO(by mouth) feeds..... this is likely caused by his increased seizure activity along with the damage that has already happened to the brain....Due to Avery's regression ....West Syndrome is now a new diagnosis for him!

You can read below some general information about est Syndrome....

West syndrome is an uncommon to rare and serious form of infantile spasms (epilepsy in infants). The name "infantile spasms" is used to describe both the seizure type and the syndrome, although not all infants with infantile spasms have West syndrome.

The syndrome is age-related, generally occurring between the third and the twelfth month, generally manifesting around the fifth month.

Compared with other forms of epilepsy, West syndrome is difficult to treat. To raise the chance of successful treatment and keep down the risk of longer-lasting effects, it is very important that the condition is diagnosed as early as possible and that treatment begins straight away. However, there is no guarantee that therapy will work even in this case.

Insufficient research has yet been carried out into whether the form of treatment has an effect upon the long-term prognosis. Based on what is known today, the prognosis depends mainly on the cause of the attacks and the length of time that hyhpsarrhythmia lasts. In general it can be said that the prognosis is worse when the patient does not react as well to therapy and the epileptic over-activity in the brain continues. Treatment differs in each individual case and depends on the cause of the West syndrome (etiological classification) and the state of brain development at the time of the damage.

"Trust in The Lord with ALL your heart and lean not on your ouwn understanding"

Please pray for our family as we wait on God and his leading and as we address all our families needs and challenges daily ....

Vigrartin is not FDA approved , it is also not covered by insurance, therefore we have to somehow find a way to pay for it.... We know God will continue lead us on this if it is HIS WILL for this little boy!


On another note......We saw Avery's hematologist on Monday and she will see us in outpatient clinic, as there is nothing she wanted to test as of right now....it was nice to see her and catch up... and I feel better having talked to her about a few concerns!



Awww...still a good dream!

Avery's acid blocker medications are still not really blocking the acid really well and his reflux continues,as I mentioned above. They are still talking about doing a Nissen fundo(see prior updates for more info on this surgery) in a few months...that is of course if Joe and I believe that is in Avery's best interest....and what God would be leading us to do!



Avery's vitals remain about the same as they have been ..not to much has changed!
Autonomic is probably the issue , but not to much to do about that at this time.
The pain doctor came in and she was great...although she thinks he has nerve pain we are not starting the medication recommended at this time , as doing to many things at once is to much...We will see her outpatient ....at some point!
His rash on his leg stared looking good for a couple days now it looks not so good again...his tube area has a rash on it.....I'll mention it again at rounds tomorrow!






My mom tried to capture my boo lip in a picture...but I was to fast for her!!



Avery's fan club!

Grandma loves...and adores her four grand kids.....

Since not to much else is happening here at this "resort" We might as well enjoy our time and sing!!

Here I am just laying here.... My friend Joanna....came to play guitar & sing with good cheer...



I thought what a nice voice and.... boy can she play Maybe I'll play along and make her day!



So here I go ...with my hand on the guitar....playing and playing How am I doing so far?


So I started to sing and she sang with me I didn't ever know how happy I could be



Back to the guitar as I direct what she should do



So I figured I 'd have a break ....since I finished song number two


Ohh what the heck .... have nothing planned today I'll just use this little pinkie while Joanna continues to play



Ohhh what a day....Ohhh what fun



I was sorry to see that our song and our time was all done...
More music tomorrow, if Joanna's able to come I sure hope she has a nice night...because she really made my day!!! Music therapy is so much fun.....maybe I'll sing for you one day:)