Latest Happenings

Another day in the life of ...US!!!

Sorry I haven't been very good at my updates lately....this is an area in which I am having trouble balancing.

With the school year beginning and so much always going on ...I feel like I barely have time to go to the ladies room! Let alone get on the computer and give detailed updates.....

This past month has had its ups and downs.....

We have had some appointments, which have included Ophthalmology (vision ) GI (a couple visits) Interventional Radiology (IR---G/J tube change), CCS (Coordinated Care Services) and LABS more than enough times, and many more appointments to come...just today and tomorrow...EEG, Epilepsy, Pulmonary, PACT team ...
Neurology which was scheduled for Wed has been rescheduled (due to the DR being out of the country) ... next week we have another GI appointment, along with Cerebral Palsy clinic (CP clinic) next month and who knows what else is on my calendar...

Ophthalmology (vision )----this visit was LONG......we arrived early (as we ALWAYS do)...to HURRY up and wait.....the long and short of this visit was that Avery's vision is pretty much the same, not really better , but NO worse (which is great).....although on his good days we can say we really have seen many improvements, his eyes don't always seem so STUCK in the left position ...and YES...for those of you who are wondering ...he is still considered legally blind....We continue to work with him visually and have a great therapist to help us continue to help Avery USE what vision he has...

On another home school front note....Not only does Avery's vision therapist work with him she also has been so kind as to start to teach my kids (especially Devynn) Braille....I am so amazed each day with Devynn and her ability to grasp so quickly & learn things... she is amazing ...I am so proud of her...Lucie has let her borrow a Perkin's Brailler...almost like an old typewriter, but for Braille...it is so cool and Devynn loves it...she is hungry to learn new and different things and this is such a gift to me to be able to watch her learn and grow...I am also thrilled that Tyler has allowed Devynn to teach him how to use the Brailler & he too, has shown an interest....God is so good..ALL the time!!! Thank you Lucie....for your kindness and all the ways you have given support to our family. :)

God had really prepared us....although one may not have thought so....Our kids had taken ASL (American Sign Language) the last couple of years, even though Avery's hearing appears to be fine, we had been exposed to a better understanding of a person that has not only a hearing impairment, but vision impairments...who would have thought...?? Well God obviously did....

GI---Stomach, feeds, G/J tube....weight-- growth...ect ect....Avery has been having lime green bile come out of his stomach into his venting bag on and off since a couple of hospital admissions ago, but we have seen more of it lately...We are still not real sure of its cause.... it seems as though that it is due to his motility issues!

We have increased one of his medications that address that very issue.

His feeds have been the same and are in need of increasing the calories this week, but I will see how his days go and determine when is the appropriate time to adjust his G-tube feeds, it probably WON'T HAPPEN in the next few days anyway...due to other changes likely happening....like seizure med increases!

I noticed a couple weeks ago that there was pink STUFF in his venting bag...and KNEW it was his Depakote (seizure medication )which was an indication to me that he was losing some of that much needed med...We had labs done and found that his med level had in fact dropped some...

We started to put the Depakote in his J-tube....which has been very difficult for Avery to handle, this med needs to be mixed with water and the tube needs to be flushed with warm water before and after administration, because the J-tube can clog so easily and seizure meds tend to be very sticky...so.... the long and the short of this is....he gets this medication over about a 15-20 minute period of time...We have increased his Nerontin (Medication for Neuropathic pain) along with just recently, we decreased the amount of fluids we were instructed to use to administer this medication ...and he seems to be a little better. We also have to keep the feeds off for a period of time while administering the med and after, as he can't handle ALL that fluid intake...

Anyway since giving the med in his J-tube his Depakote levels went up slightly ...not much, but a few points...So I guess it was good that I suggested that we go this route for the time being anyway!

Avery---had developed an infection in his G/J tube area and then had allot of granulation tissue around that area....he seemed very sensitive, when we would do dressing changes or clean the area ....over the last few days, we have been applying a medication, that seems to be helping. He also had some blood in his venting bag the other day, but we have not seen it since....He had his tube changed on Friday......

Avery's weight/growth...Avery is ...DRUM ROLL Please.....
Just ...OVER ... 21 lbs and is 30 3/4 inches long..a far cry from his 3 lb birth weight!
He continues to be on 24 hour continuous feeds in his J-tube......however recently we have had to shut the feeds off during medication administration...thankfully he has a little cushioning now>>>Thank you God! ...he is still in the lower percentile for what they would like to see for him, but we are moving in the right direction!

We are still working on a lot of oral motor skills ...For those of you who may often ask or wonder.....It is very unlikely that Avery will EVER eat by mouth!

His ability to eat sufficiently enough by mouth to maintain growth and development
(whatever that may be for him ) is something Avery will likely NOT be able to do...along with the fact that the strokes have affected his gag reflux significantly!

YES---- we are still going to work on his oral motor skills.......WHY??
So he does not develop an Oral Aversion, which is, reluctance or refusal to put things in ones mouth, a child that is on prolonged G tube, or other form of nutrition intervention, can contribute to the development of oral aversions. Unfortunately Avery has now stopped using the Binky...(Aka: Pacifier) ... which we are still trying to work on, as we want him to not lose his ability to suck; as this could lead to other issues (with the muscles in his mouth, face and jaw) ... We want to encourage development, which includes putting fingers and appropriate toys in his mouth ...which would be great for the teething he is doing!!

The acid in Avery's stomach is still pretty low....another issue we continue to work on he is on plenty of meds to address this issue....but it is still obviously a continued problem for him!

CCS---Coordinated Care Services ----Is addressing the vital signs & the irregularity's Avery has been having over the last few months ....and we will be seeing a cardiologist to address Avery's autonomic dis-regulations....The last week his vital have been better than I have seen, although his temp is still a low grade temp and this has been going on for several months, his respiratory rate is still high on more occasions than I'd like to see...

The CCS DR was also talking to the team about immunizations and if and when it is appropriate to restart them...the answer to that....is that she got a real mixed bag of answers...NO one seemed to really know...many said it was fine...and Epilepsy...whom I thought really needs to give input about this ... seemed to not know really much about what to do ... ohh boy ... that's real helpful to me...NOT!
She also is the Dr who cultured his G tube sight and found the infection...she also did labs...which showed one of his levels off ...but this is a level that has consistently been off, due to another med he is taking, although they wanted to try to get me to give him loads more fluids (which he could not handle) ... because of the fluids he loosing in his venting bag ...the reasoning was to see if this would affect his level and bring it up ...however, a week later when I brought him to have those labs re-done, they never re-took those levels...or that particular one...can you say....UGH.....

We discussed his O2 .....and she is deferring to the pulmonary team to address this issue!

We discussed hematology and she has schedule an appointment for us to see them...

At this point...I can't remember what else we talked about, but I will say it was more or less a productive visit!

In regards to his Respiratory Status & Saturation level---SATS ---they have been over all really good, he continues on O2, but I have turned the amount he gets down, this is just something I have done over the last couple of days...so far he is doing good with it! There have been a few times over the last week that he had some low levels later in the night or really early in the morning....
His repertory status has been so much better, when we first came home I was suctioning him ALL the time...then for a little over a week and a half I was doing it NOT at ALL, then last week I had to suction him a few times...and he seemed to be breathing much better after...you may be wondering about his SATS and Respiratory Status....but I'm not real sure that his suctioning needs this past week really correlate with his low SATS at times...

In Avery's own way ....in regards to the need for O2....Avery will tell us when he can handle things and when he can't....I have no problem trying to decrease the O2 ...but I also have no problem increasing it, if he is in any distress or showing any signs of distress! I don't however like to change to many things at once...so we will make changes and adjustments one or two things (if need be ) at a time!!

Seizures-----Epilepsy----
WOW....those to words on the same line just get me all worked up inside!
OVER ALL---His seizures are SO MUCH better.....we have not had to give emergency medication but have had several close calls!!!

I am pleased that Depakote has seemed to at least decreased them some....although there are times I am concerned at how the medication seems to take its toll on him, he does not seem as sleepy or drugged from the meds as he has seemed ...but his seizures are also not what we would like to see. No we don't expect them to be completely gone, but we certainly don't like seeing those colonic/tonics, which he has been having,.... As a matter of fact, part of the reason I am still up at this hour is that he has been having seizures during the night to the point that I almost took out the emergency medication ... As an FYI---if we are to administer the emergency medication this does not mean we go to the hospital. Since our last admission and discharge, we have come up with a new plan .....about administering emergency medication!

His Depakote levels (as I mentioned above) are still low...YES---they are within the therapeutic range, but barely...which means they will likely want to increase the mediation!

Balance...that's what my hope/prayer is for ..balance...with all these medications and OUR son's quality of life!

Which brings me to another issue....I am really upset with how our Epilepsy doctor has conducted himself in regards to Avery and his care...(I know Jessica...I need to get a new doctor...I hear ya...and will probably be doing just that)...the only reason I know anything about Avery's Depakote levels is because I had an appointment the day after one of the lab values were done...that was 2 weeks ago...and do you think Epilepsy has called me to discuss them???

Considering they were lower than when he was discharged from the hospital...Well ...NO they have NOT...nor has his nurse called...I am really frustrated with Epilepsy and Not good doctoring at all! Aside from the fact that Epilepsy HAS not even called once since we have been home to see how the new medication is going ......Avery is on pretty high dosages for a little guy and this is no medication to mess around with....just so you can see what Avery is taking for Depakote ...My 18 year old son is taking only 50 mg more than my 1 year old......and my one year old is on 2 other seizure meds (along with a 3rd, which is used for his Neuropathic pain)..So as you can see he has a lot of seizure meds and at a rather high dose.....One in which I don't increase lightly....SO I would like a doctor who is a little more attentive ... Maybe he is someone who can be more attentive...but at what point do I say enough is enough? By the way...that's a Rhetorical question!

SO...Pray for me today..because we are seeing the Epilepsy doctor today...I need discernment and God's peace about how to move forward!

I meet with PACT today for the first official meeting...
What PACT is.....Pediatric palliative care refers to treatments intended to optimize the quality of life. Some of the support they provide includes optimizing pain and symptom management, advocating family and health care provider communication, and coordinating inpatient, outpatient and home care.

Some other happenings going on ......We are in the beginning stages of ordering Avery a special medical bed...please pray that it ALL goes through without any problems!

After bringing ALL Avery's medical equipment up and down the stairs ....EVERY DAY ...twice a day ....we MADE THE MOVE....down stairs....So ...Joe, Avery and Myself reside on the first floor!!! We think that this is in his best interest ..especially as he gets bigger and older! We are ALL adjusting to our NEW living arrangements:)

Andrew has started school and I think he is glad to be seeing his friends again.....Pray for him and that God's light will shine on and through him each day!

In the midst of our moving rooms ...we moved the school room.....and the kids are actually excited for the new curriculum...that will be used for this school year!

Joe is really excited that it is the "Fall"...or should I say ...football season...
Please continue to keep him in your prayers as he balances work, homeschooling...and family time ...along with making sure he keeps GOD first in his life!! He is an amazing father (the kids adore him ) / husband (well I adore him too..he he) and I am thankful to God for him......

ON a side note....I want to thank ANYONE who has sent me notes, messages, or calls......I also want to thank MY brothers whom have been a great support to us/me ....with visits to the hospital and helping to take care of house hold things ...Thank you!! Your words of encouragement and kindness are really a blessing to me and my family.....THANK YOU!!

Prayers are always welcome and appreciated!!!!


Please pray for our RESORT FAMILY Friends "The Hilliard's"...whom are residing at Children's ONCE again!

http://www.fromthebanksofjordan.blogspot.com/

Also ...Please pray for Joe's grandmother (Nanny..aka...Lillian) and his family. Nanny is requiring more support & care than she has in the past...pray for strength, patience, & guidance for the family...

I hope to upload pictures really soon....wait till you see how BIG "The BOSS" has gotten"

We continue to live as Jesus would have US....By faith ..NOT by sight!!!!

2 Corintians5:7