Words from the .....Resort visit continue!

6/22/2009
Hello All,

Sisterly love....and comfort!


Still somewhat tuckered out.....

We are still residing at the lovely Resort in Boston...aka Children's Hospital!
Avery received a new feeding tube ..this is a G/J tube .Avery's feeds will be going in his jejunum instead of his stomach as he has not been able tolerate anything in his stomach...although he is receiving his medications in his stomach. His new tube went in on Tuesday and this had to be replaced because the G side of the tube was clogged on Wed; when he was receiving one of his meds... Giving medications through his G side(stomach ) is causing BIG issues....some of his meds that are compounded from the hospital pharmacy are of a high volume...about 25-35 cc(mls)...just for ONE med,it took the nurse 2 hours to administer this medication,because he just could not handle it ...and for someone that can't tolerate anything in their stomach this is an issue....we have the same medication and the concentration(volume...cc...mls...you get the idea) is much smaller,but the pharmacy here will not let us us OUR home medication...that is a battle for tomorrow...

No I love you more...No daddy I love you more.....the looks of LOVE!!

Avery started receiving his feedings (continuous formula feeds ) in his jejunum (J side of tube)on Friday , with ¼ strength formula & ¾ pedylight....Saturday his formula was increased to ½ strength and pedylight to ½ strength ..... After carefully assessing my daily charts that I keep for him, it is evident to me that Avery is NOT tolerating feeds(J-tube...very well) or medications(G-tube) very well....the question is ...well.. WHY!?!?! It is obvious to me that he is in extreme discomfort....coughing,
wretching(? sp) & gaging continue to be an issue.... Along with arching,stiffening & crying....

Loves his daddy....
.
One of his biggest fans!!!!

Last weekend ...Avery developed Aspiration Phenomena, he has been on antibiotics.
That was his first experience with de-satting (sp?)...this means his blood oxygen levels were below low.. he was started on oxygen(which he has never needed in the past)....they did that for a day then took him off ...then he need to go back on...Since yesterday he had a long episode of de-satting; they increased the oxygen...today with the oxygen on he still de-satted....he had an x-ray and there was nothing that looked like it would explain these episodes.


We moved to a private room.....after his big Aspiration episode...I wish it came with a King Size bed!!!


PT came yesterday to do Chest PT on Avery he loved it....We often do this at home(Joe,myself and the nurses... ) This is in hopes to help break up some of his secretions in his upper airway!
They were suppose to come today.....but I guess they got tied up, I will be inquiring about them coming tomorrow!
Avery has started receiving nebulizer treatments,because of his upper airway congestion....I not real sure I can see that it has made a difference,but it's worth a shot.
Avery continues to have a his low grade temps(it's been 3 months now) but today for th e3-4 time since this admission his temp was great than 101....NOT sure why...This could be an autonomic issue...due to his brain damage from his strokes...if you remember ..Avery had a hard time regulating his temp as a little baby; this could all be connected...We will be exploring this more tomorrow as well!



He continues to look very pale in color...another issue to discus tomorrow(again)
He has developed a rash all over his body....could just be viral....WHO knows...ad that to tomorrows list!

The right side of his abdomen is distended.....although it is soft...it could be a sign that he is rally not tolerating his feeds(I am speculating...)The doctors have seen/felt it and will address it further tomorrow.

Tonight ....We are still waiting for the IV nurse to come & draw labs since phembotomy did not have any success with drawing labs earlier today ....with more than 2 techs attempting!

Although I'm thinking of putting them off ...because I KNOW they (meaning the doctors) will want more labs tomorrow after I have a conversation with them...actually while I was typing this I spoke to the nurse and told her what I was thinking and she agreed and will pass it on to the doctor tonight.

Seizures.....Medications are still being monitored by me constantly and evaluated by Neurology & the CCS team. Two of Avery's seizure meds have been increased to a maximum level this week. He continues to have a lot of seizure activity!!

CCS stands for Complex Care Services.. a team of doctors that make up a service for kids that have extensive medical issues..they help coordinate all other service teams..at least thats the goal of this team we meet with them daily and often twice daily.

Many of you have asked when we will be coming home along with asking how are you all doing and what can you do to help us during this time ...well....below is a couple of things that I know need to happen before coming home ...and I will provide a list of things that might be helpful to us during this time!

We need to figure out his feeding & medication intolerances....and somehow get his feds up to full strength or talk about alternatives to the tube feeds (I will get into what that is if the time comes...but not before then...and I'm not talking about feeds by mouth )
His saturation levels and why they have been so low...and below low!
His need for o2 and what that will look like at home!

These above things among other things need to be worked our before discharged.
Making meals would help my mom ....I think big time....Joe and the boys have an allergy to dairy.
My mom has been a huge huge help, but I'm sure she would be open to having a little break for a few hours and it might be nice for the kids to have kids to play/hang with.... .

Joe & I are doing fine....sleep deprived...aggravated at times(with how slow thing can happen at the hospital & communication with the team @ times...but we are where God wants us to be doing what needs to get done!
I think it is hard on Joe working ALL day and then coming in here,but I don't think he would have it any other way. The kids are champs....We have awesome kids ....who are so understanding and who love their little brother more than words can say!
Devynn comes every day and colors pictures for Avery's room & I am always thrilled to see her smiling face ....
We are so proud of ALL our kids :)

Ohh and Avery will be 1 years old on Saturday...WOW.....Praise God for our little blessing!

I think that's ALL for now.....sorry t was so long and if it seemed like I babbled...I also apologize...Ohhh and my spelling;please forgive that as well!!!

We continue to “Trust in the Lord with all our hearts and lean not on our own understanding and in all our ways acknowledge him”...weather this life of ours is easy or hard ..we see no other way,than Trusting HIM ...who knows!

With Prayer, Hope, Thank and HIS Understanding ,
Grace & Joe

PS..Please pray for our fellow resort members...aka ...Children's Hospital Patient...Eithine,as she has several procedures/tests that are happening this week....she has a very extensive medical history and she and her family need OUR prayers!

PSS...we will be starting to update the caring bridge page....sometime in the near future...when I can get a chance update my information from my pasts months of NOT writing on the page!

Tuesday June 23,2009
Good Morning
WOW...I can't believe that it was a year ago today that I was admitted to the hospital;after being on bed rest for several weeks....due to my severe toxemia...never expecting that I would be delivering my little bundle of miracle a few days from this day!..”Expect the Unexpected...through & by Christ” ....a favorite saying of mine:)
Anyway....
Yesterday was somewhat of a bang my head on the wall day ...not because Avery was up screaming or totally inconsolable during the day...but because some doctors don't sometimes know when to “hold um or when to walk a way “....meaning , shut their mouth and listen to mom or just say nothing and walk away....One of the residents,felt the need to say to me after several minutes of conversation regarding Avery's status” What do I need to do to convince you that he is okay”....okay....I had to work real hard to not do or say something that would make me regret it later or something I know God would have me NOT say.... this was my response...”Convince me, convince me, you don't have to do anything to convince me...his saturation's have been low and he has de-satted or many occasions..something that has never been an issue before , he is on oxygen, he is clearly not tolerating medications in his g-tube, it is questionable how well he is doing with his J-tube feeds...his stomach is distended, he has had some really awful days/nights.... you don't have to convince me,that my son is okay ...My son will do that when he is Okay...don't try to tell me he is OKAY,becasue he is clearly...NOT...just because you have results of an x-ray,that did not show anything else concerning to you”....more conversation took place after this...but you get the idea ...of what my day started off like...UHG.....

The remainder of the day was rather uneventful....new cream was given for Avery's eczema on his face....but nothing for what looks like a viral rash on his body. He had Chest CP today and he liked it once again, I thought she was going to do regular PT stretches but she didn't...guess she got busy during the day and wasn't able to come back...it's okay because I do them anyway! His 02 was turned down a little...he did okay with this,his saturation's have still been on the lower side,considering his baseline is no oxygen and he is usual on room air. The concentration of his feeds are still the same as mentioned before,but his volume that he gets per hour has increased some. He really needs those calories as his weight continues to go down. His weight yesterday was 17lbs 8 oz...which is down from his max weight of 19 lbs 2 oz.....