((So many questions....and a lot of Waiting))


Monday and Tuesday (and likely today as well) started with about 15-20 doctors /medical staff coming in and doing their rounds....ohh what fun...and did I ever mention that this is the time of year that we get all NEW medical doctor graduates( it has now been a week and a half.... to be exact )...and for some of them; this floor is their first stop and first time as a resident doctor....So like I said ....ohhh what fun!

Auntie Tina had waited a long time to hold him....
and I think it was worth the wait ...look at that smile....yes both of them!

From a parents perspective this is very difficult; having someone that graduated on A Monday ....then on that Wednesday ...have them make medical discussions about MY son or any Complex Child's Care.... I know that this is a teaching hospital.."I get that"...but that doesn't mean it's something I'm comfortable with....a third year resident on a CCS floor(Complex Care Services...children with very complex medical history's...NOT text book cases at all!!).....is totally understandable...but not a first year resident!

Anyway.....now that we have that all cleared up....ha ha...lol


So many questions ......
With so little answers....at least that's what it seems like from where I'm sitting/standing!

“Psalm 33:20----We wait in hope for the LORD; he is our help and our shield. “

The plan over the weekend was to push Avery's volume/rate up and have it at goal by Monday...Unfortunately that did not happen, as I mentioned in my last post he had a tough time with the volume increase. So the plan for this week was try to figure out WHY the intolerance with feedings...along with trying to figure out some of the WHYS to his other issues!

Romans 15:13
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

I am always remembering....where my Hope,Trust and answers truly lie!!


Avery has been rather miserable these few days ...with lots of arching/coughing
..refluxing/gagging....and just plan uncomfortable!
At this point... Tylenol is probably only addressing, if anything his irritability with his teething and even that's questionable. His seizures stink and I have not seen nor heard from epilepsy...UGH ...So frustrating !!!!

We were supposedly to be having a team meeting today, but apparently that likely isn't happening,because they haven't given me a time....nor have they heard back from all the teams of doctors involved...Well ....that's okay...because .... more time for me to write my list!!!!

Vital signs are still wacky at times....some pretty low(for Avery ) respiration's yesterday and high heart rates....Still questions surrounding the inconsistent vital signs...is it autonomic dysfunction...hmmmm......????


Yesterday the concentration of the feeds went up a tad from 20 k-cals to 22 k- cals.....and when the feeds had been adjusted so had the volume/rate from 35 mls to 25 mls...due to doctors orders, but I later found out that; that order for the volume/rate to be decreased to 25mls was not correct....this little error was noticed shortly after his feeds had been increased(by concentration) ....and I was told by the NP (CCS---Nurse Practitioner ) that she would talk to the attending (CCS----doctor in charge) ....and she would get back to me and then adjust the volume /rate back to where it should have been.In the meantime one of the other doctors(residents) came in and she said yes his decreased rate/volume was not correct and would likely be changed; after they had afternoon rounds....well.....that was like over 18 hours ago...and it was never changed nor did anyone ever get back to me...So it ought to be interesting what is said in this mornings rounds, when everyone realizes the rate/volume was never increased again...I wonder who they will point fingers at....UGH...

Avery had a nice visit from grandpa .....
he too has waited a long time to hold Avery...
and I think he was in aww of how big he was!!!

“Psalm 37:7---Be still before the LORD and wait patiently for him; do not fret when people succeed in their ways, when they carry out their wicked scheme”

Avery's stomach was noticed to be increased in size last night by myself....and it felt a lot tighter than usual.....the nurse had told the doctor of his current distended abdomen and she came 2-3 hours later....of course with her own opinions...telling me that it may be distended..I proceeded to tell her it is distended NOT it My be....it was also mentioned to her that his tube sight area had started to from some granulation tissue which was not there that morning...she said and did nothing about that...but don't you worry I already addressed that and have some cream that will go on it this morning...UHG....another thing she was to look at was the back of his right leg....I may not have mentioned this but he has had some skin break down on this leg...we came in with his leg having this little red patch of skin...we tried a few things at home to see if it helped and have tried some things since being here...and last night it looked pretty yucky...and very sensitive to touch. This skin break down is likely a result of his tight muscles(even though I ROM..range of motion ..daily several times ) ...this is not something we want happening this early on(or really at all)....Anyway after I told this particular resistant(first year resident ) what treatments/products have been used...she ended with saying that she was going to order an ointment for his leg(but it was...one that had already been tried...UHG)...the point is ..she didn't Listen to me a all.....that is so frustrating.
The end result being that I asked the nurse for another cream ...one recommended to me for Avery by another mom(Thank you). I have started with that cream this morning...I am now waiting for the wound nurse to come by an look at his skin!

“Psalm 27:14-Wait for the LORD; be strong and take heart and wait for the LORD. “

Uncle Steve had to wait his turn to hold Avery as well.....
Now he is ...Loving his Uncle Steve!

I brought Avery out of the room yesterday ....need to get him out of that bed and we went for a walk to the Cafe....it isn't coincidental that I saw his GI doctor(and she isn't even suppose to be around as she at conference all week....how cool is that)she asked if I wanted to chat.

We had a great conversation and brainstormed....she gave me some suggestions about questions fr the team....She's Awesome!!!!

A consultation with a CCS doctor that specialize in pain management is scheduled to take place today....

As it turns as I was writing this .....someone from the pain management team came in and will be returning on Friday with the attending doctor (doctor in charge)to discuss and address these issues and concerns.
Also in the midst of writing ...the team came in,but thankfully it was only the CCS team...PHEWWW...I was able express my concerns I have with how the residents have responded to me ....I should say responded to Avery and the care that is needed.

Can you believe that it is now afternoon/almost evening ..... and I have not finished writing this update that I started early this morning (but that's okay)...I had a nice surprise from an old/new friend...well she's not old....but it's been since Junior High ,however I didn't really know her very well...so she's now a new friend and blessing & we had a great visit...Thanks Tracey!

So here I am now finishing this update.....As of right now ....Avery has slept huge amounts today (I'm a little concerned about that)...maybe it's because of the increase in his motility medication that was increased a couple days ago.... I guess I will just sit and wait and watch...Avery's SATS have started to dip a little on and off this afternoon...and as is usual we will justs watch and see....Avery's stomach is still distended and I will keep measuring it ...and watch and see.....You notice a theme here”waiting”...maybe that's what I have to continue to do!

Avery's feeds are now back to the 35 mls per hour, and at this point in the day we are just waiting for the wound care nurse to come and look at Avery's right leg. The resident came in and gave me a little update about the team meeting....basically they are waiting for neurology to get back to them and Avery's epilepsy doctor will not be bale to make the meting. Once again I feel the need to tell her how I still want him to come in and talk to me anyway and give me... in person his ideas of what is to take place from his perspective!!!

I guess I'll just sit and Wait!!!

“Isaiah 30:18---Yet the LORD longs to be gracious to you; therefore he will rise up to show you compassion. For the LORD is a God of justice. Blessed are all who wait for him!”

Avery is holding on to Devynns little fury friend .....
and waited patiently to do so!

If you could just watch and wait...I will be posting more pictures today or tomorrow!

PS...sorry for spelling errors...I'm tired!