After being home about ONE month from our stay at the Summer "Resort"...
We are a little sad to report that we are now residing once again ....at the "Fall Resort"
We we had our Epilepsy visit over a week ago & we increased Avery's Depakote.....he seemed pretty sedated and had pretty crazy vitals...with respiration's consistently in the 50-60(which is high for him)...and has also had some wacky heart rates, from 60's @ times to as high as 160's at times.....both on the very low and very high ends.....his temp however had been rather low for him....
We were not real sure what may have been causing these irregularity's...
As the week went on so did Avery's sedation and respiratory rate....
We decided not to increase his seizure meds again ;as per the schedule to increase,due to the sedation we had been observing ....in fact;Avery's seizures had increased and we actually gave emergency medication the beginning of this week.
Avery continued to show signs of discomfort;weather it is from the pain he experiences with his feeding/medications----or just general neropathic pain. He had been putting out large volumes of green bile,which in my mind is an indication that he is having some motility issues....(things are not moving along and emptying properly from his gut/stomach).
His PH levels have been low.....acid in the stomach;which means when he reflexes it probably is very uncomfortable!
Since he has been sedated his interaction with others has not been great;it takes a little more effort to get ANY response from him....When he is in the mood he responds well & still really enjoys music!!
Some of Avery's favorites still are his siblings and those close to him:)
Avery continues to have trouble sleeping/resting very well.....he has never been able to be on any kind of schedule no matter how hard we work for that....Between his seizures,reflux,pain,meds...ect..ect....this is a goal we hope at some point to achieve.
We were suppose to see Pulmonary last week; but due to other issues that came up we were not able to go....and I was waiting for another appointment (Neurology)that was canceled to be rescheduled before I rescheduled our Pulmonary appointment(.....UHG...did you get all that PHEW)...Anyway...
I was encouraged by one of my home nurses(Thank you) to have Avery seen by Pulmonary sooner; rather than later....so needless to say we(Devynn, Amy-OUR- nurse and I ) brought Avery in Thursday 9/24...to be seen and evaluated by the Pulmonary.....regarding his most recent change in respiratory status...mainly his increased RR rate!
My hope in bringing in Avery was to have them access him and tell us if we should continue with ALL the breathing treatments we have been administering.I had also wanted to know what their thoughts were regarding why HIS respiratory status has drastically changed most recently.Guidelines about the usage of the O2.....along with many other concerns & thoughts were ALL things that I just thought would be addressed with possibly a new treatment plan in mind...ect...ect....
"I know the plans...I have for you say's the LORD "
I am comforted by that above verse....God knows the plan's he has for Avery....and ALL Avery's family.... although that brings me comfort; it doesn't always prepare me for the words spoken to me below....
I really didn't expect the doctor to come in and say ...."I really think Avery NEEDS to be admitted "....
So after approximately 15 hours(9 1/2 in the ER) of being at the hospital for what was a routine visit.....We finally made it up to OUR home away from home floor 9east the CCS floor....
Something I used to always say was "Expect the unexpected through and by Christ"
I had a wonderful experience a few years back....
It was with Andrew...we never expected that he would be able to stay at the over night Christian camp in NH.... seriously ....I never in a Million years thought it would happen.....I had a close friend of mine remind me one day; that Andrew is in God's hands;and that he would be okay...So picked up my chin....and said alright....I guess we'll see what happens...
It was mid week and I was on one of my morning walks around the lake ;having a conversation with God(something I Loved to do)...and I ALL of a sudden realized....Andrew stayed overnight at camp ...a few nights...Andrew whom I NEVER would have expected to stay anywhere (For many many reasons)...stayed at camp overnight....and on top of it ....he was doing better than okay ..he was doing Great:) It was at that very moment that I knew to ALWAYS"Expect the Unexpected through and BY Christ" ....YES I know this above experience about Andrew is far different fr0m the one about Avery...
BUT....you know what in the way God thinks ...it really isn't.....
Avery is in GOD'S Hands ...We may not expect things in our lives;What God expects is for us to rely on HIM.Avery will be okay;just like Andrew was(and is)...it just may not be the kind of okay we would expect....So ....I just have to sit back and "Expect the Unexpected"......
"Trust in the LORD with ALL your heart and lean not on your own understanding ;in all your ways acknowledge him""
I can pray for certain things about my child or children ....but what God wants is for us to FULLY rely on HIM and know that; whatever is in HIS WILL ...we can expect HIM to guide us and bring us through, if we lean on HIS understanding....
Since being admitted on Thursday several things have happened....
- Avery has had 3 IV'S placed...the last one being about 12:30 this AM.....
- Avery's feeds had stopped Thursday night......and he has been receiving IV fluids
- Avery is being treated for Aspiration Phenomena(again)
- Avery's seizure medications are once again being adjusted(actually back to what they were prior to the last increase)...no emergency medication has not been needed,and we hope to keep it that way!
- Avery's feeds have restarted yesterday(Saturday)...which is causing him extreme discomfort along with reflux;we have not increased his pain meds ;as of yet,but have been giving Tylenol
- Avery had some bright red blood in his G-tube last night.....I would be merely speculating if I comments on what I think it means...so I'll wait and hear what the DR says!
- Avery's o2 had been turned up slightly
- Avery needed back to back nebulizer treatments on Friday
- Avery's respiration's continue to be on the high side,in regards to his respiratory rate and his breathing, he is having more moments of comfort than when we came in on Thursday
- Yesterday Avery did not seem as sedated as he had been
- Avery has been very irritable
- Surgery team is being consulted about a few possible in the very near future surgeries; and what may need to be considered in the more distant future for surgery.
- Having a test to measure the amount of reflux,should help ALL of us with some of the decisions that need to be made
- Keeping Avery from further Aspirations is A BIG part of the continuous discussions we are having,and team meeting...with ALL the teams to discuss a plan in moving forward
- Working his feeds up this week,while discussing the next steps is part of the plan
- Continue with breathing treatments and chest PT to help with his comfort
"I know the plans...I have for you Say's the LORD "
Some side notes.....
AVERY is 15 months old today and officially a Toddler...WOW!!
OUR friends The Hilliard's remain inpatient;and are dealing with many things...your continued prayers for them are also appreciated....
It is comforting to have Jessica(Eithene's mom) here to chat with,vent with, pray with.....
http://www.fromthebanksofjordan.blogspot.com/
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