The dust has settled from the crazy week......

Thankfully, Avery seems to be fine.  He is just always a mystery to us.  One second you are packing your bags to rush to the hospital and the next he looks like a million bucks.  He just likes to keep us on our toes I guess.  Little man is having some insomnia issues though to the point that he will be awake every 30 mins.  I am starting him back on melatonin as don't think it is a pain thing.  Hopefully that nips it in the bud but it's not a huge issue in comparison to what we could be dealing with.  So in the end I will take sleep issues over respiratory and GI issues right now.  Avery has come a long way and is actually pretty stable right now and I will take what I can get. 

Isaiah has starting his weekly Frid. night retching, UGH.... We had his IEP meeting yesterday and let's just say, it did not go how I wanted it.  The school is not budging on his placement as they "think" they can provide him with what he needs.  I have my doubts but at this point have to see that they can do it and if they cannot then we will start fighting.  It all comes down to money (in my opinion).  Bottom line, they don't want to pay to tuition him out.  Let's just say we will be keeping a close eye on things.  Just so frustrating and exhausted.  At the end of the day it's about what is best for Isaiah. 

Being a parent is tough and adding being parents of TWO very involved special needs kids and Miss Janessa is ALOT some days.  I am just so thankful to have my hubby with me during this journey.  We are a good team :) 

As predicted!!!

It's been a crazy week for sure.  It started with being worried about Avery's redness which thankfully resolved.  To make matters worse, he had a HUGE bm and his line was covered in it.  Thankfully, my nurse did everything she could to prevent a line infection.  Although my bags were packed.  He ended up having a good night, then MOM got sick.  I was out of commission for 2 days. All the while my work was going crazy b/c a pt. that I did not get to see 2 weeks ago called the state on the nursing home so all hell broke loose.  Since when is a hearing test a sheer emergency.  I honestly was in bed all day and could not fathom rushing to test someone's hearing.  Not an emergency in my book.......

The worry of Avery's impending line infection is now replaced by his vomitting and respiratory situation.  He has not been on feeds for over 2 wks now and yet he has been vomitting or retching every time he gets meds.  The vomitting then leads to aspiration which brings on the respiratory issues.  So not sure if he has a stomach bug or a respiratory bug.  Either way, bags are still packed.....

All the while we have a big IEP meeting for Isaiah tomorrow.  It is time for him to be in school with kids much like himself.  He is going into 3rd grade next yr and I just don't see him being mainstreamed at this point.  And so the battle begins.......

Meanwhile, basketball playoffs just started and Central had their first big win.  Let's keep it going!!!

During all this, I have spent very little time with my hubby but that is just how it goes.  Thankfully basketball season is not year round :)   

Vacation is Over

Avery sure is good about letting me take my little breaks away because when I return he lets me have it.  He has been feeling great but he woke up this morning and his dressing site looks bad.  The site where his central line suddenly looks red, hard, swcyollen and some minor white stuff.  NOT GOOD.  He has only had two central line infections and they have both stemmed from superficial infections around the site.  This just came out of nowhere.  When he had a port (a needle being inserted weekly) I could see him getting irriated but with the line he has now, the line is stiched in and just gets the dressing changed weekly.  So I am just baffled at why it is suddenly red. 

I will call the dr. in the am.  It just makes me nervous that it will turn into a line infection.  It is just not good for a kid with very limited access.  Something that we can do our best to prevent but it can still happen.  So if you can spare some prayers that it can be treated superfically and doesn't progress into anything serious.

Isaiah was been struggle to come out of his cycle this weekend.  This kid is literally in a cycle EVERY week and I just don't know what to do anymore.  I think he is in so much pain that he is constantly biting his fingers so much that his hands are a MESS.   I am at a complete loss right now.  Just feel so bad for him. 

It is just gonna be a crazy week with work, kids and basketball playoffs........

Pictures

Back home

It is always nice to get away but for me I am good with 3 days and then it is time for me to be home.  I just miss my family.  New Orleans was great and certainly a "bucket list thing".  It was nonstop parades all day and night but it was only about 35 degrees which totally stunk.  Then I got home from that trip and picked Janessa up for the water park and that was great. 

The boys did great while I was gone.  But of course Isaiah started retching horribly today.  Avery has been soooo good.  We finally made the decision to stop all feeds and just give meds. through his j tube and go full boat on the TPN, it seems to be the best decision.  He has been happy and sleeping much better.  I guess the only worry is how his liver will hold up with straight TPN but I guess we will take it one day at a time. 

I will not be posting for about a week as I will be leaving town tomorrow night and not returning until sometime on Friday.  I am actually very excited :)  The first half of the week I am going away with my friend to New Orleans!!!!!! Then I will be coming back to pick up Ness to go to Coco Keyes which is an indooor water park. So trying to fit it all in one week.  It is surely time for a getaway for me.  I have to recharge the battery. 

I am hoping Avery is settling down.  Poor kid has NOT been sleeping at night despite all of his regular meds.  I had to call the pallative care team to have some of his meds increase and I don't think even that did the trick.  Believe it or not, tylenol suppositories seem to be working for a couple of hrs.  The reason being is because it is not ingested through his gut which seems to be the problem.  He is just not absorbing his
meds again.  We have stopped all feeds and frankly I think it will be indefinetly.  It is just not worth it.  He is not gaining much from it and quality of life is prime.  I just have to be realistic at this point.  His TPN will be adjusted this week to make up for the feeds he is not get.  This means that he will be 100% dependent of IV nutrition :(

Isaiah had a good week but his blood sugars were a bit wonky today.  I am sure that is to be expected.

I am just hoping nothing crazy happens while I am out of town so that I can enjoy my time away.  I have confidence that the boys will behave.  I had a great day with them today so I am hoping that they will be okay.  I hope everyone has a good week. 

Immediate Prayers Needed

Isaiah and Avery's little friend Marlo really needs them.  She is really sick right now with RSV and can use all the prayers you can spare.  http://www.caringbridge.org/visit/jaidenandmarlowhite

Keeping fighting hard Miss Marlo.  Hang in there mom, we are thinking and praying for you guys.

I tried to post a couple of videos at the top.  As you can see I had some issues, LOL.  But the one that the boys are on the floor was from when Avery was a yr. old.  This is so sad for me to see b/c he was much more active than Isaiah (who seemed to be struggling).  Now Avery has lost all those skills and Isaiah is a rolling crazy man.  It is heartbreaking at how active he used to be :(

Isaiah's appt. went well with the Endocrine dr. It was probably the quickest appt. ever.  His A1c level normalized which is great.  It shows that the little insulin he is getting is working great for him.  She also gave me a script for short acting insulin incase his goes really high.  Hopefully we will not need to used it at all. 

Something is up with little man????? He did not sleep at ALL last night which is unusual these days.  He may wake a couple of times but he literally did not sleep last night. I have a feeling he is going into gut shutdown again.  This is the same thing he did in Dec.  He is often uncomfortable and just not himself.  He is only on 5cc of pedialyte but it sounds like I may have to halt that for awhile b/c I cannot lose the ability to give him meds. through his tube.  It is just scary on how bad his gut has gotten as it leaves us with very few options which we are already doing now. 

Add to the fact that I am going away next week with the girls and then Janessa and I are also going to be away for school break.  I am certainly nervous that he will decide to make a visit to his second home.  Although, I have to say that he usually does allow me to getaway.  Hopefully we can resolve things at home.

Its been awhile

I have not been a very good blogger these days!!!!!

Nothing too crazy has been going on though.  Poor Isaiah is still struggling with retching.  He has basically been retching nonstop.  It is horrible :(  He used to at least get a 2-4 wk break in between but now it is so unpredictable and pretty much constant.  It is really affecting his quality of life.  He has barely gone to school these days. 

Avery has been feeling good but continues to struggle with his feeds.  He is not even tolerating 5cc/hr which is crazy.  He is losing fluids with not being able to get his feeds so now we are adding extra IV fluids to make up the difference.  Yet another thing that sucks, a gut that doesn't want to work.  His gut has gotten so much worse of the past yr and it is scary.  I fear that we will lose the ability to give him meds in his gut.  That would not be a good thing at all but it seems like that is the road we are heading down. 

This is such a nasty disease that affects so many parts of the body.  So unpredictable and uncontrollable. 

I do have to be thankful that Avery's respiratory status has significantly improved.  At least I am not battling respiratory and GI issues b/c then I would totally lose my mind.  I just hope we can find shome relief for Isaiah soon.  We are off to see the endocrine dr. regarding his diabetes which is stable thankfully.  I am interested in hearing her perspective on things. 

I do have some video to load which is sooo cute.  It is of Avery standing up and just cracking up at himself b/c he is standing which minimal support.  It will surely put a smile on your face.  I just have to find the time to do it though. 

I wanted to start by saying CONGRATULATIONS CENTRAL BOYS BBALL.  Great game tonight and great sportsmanship  (class act) by the Central Students.  UNDEFEATED so far and the season is starting to wind down.  Very proud of you guys!!!!!!! Keep it going!!!!!!

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The sickies have hit the household and now it has gotten Isaiah realy bad and Janessa.  Poor Isaiah has been on a bad streak lately.  He barely goes to school these days :(   He sticks for him to have a stuffy nose too b/c he cannot blow his own nose and HATES for you to do anything to try to clear it.  He is just not a fan of being bothered at all.  His sugars seem to go up when he is in a cycle but then recover well.  We are actually seeing the Endocrine dr. on Monday and I am going to go over all his blood sugar readings.  It seems he is high right before his insulin especially when he is in a cycle.  I am not sure if she will up his insulin a bit for start a sliding scale (which would really stink b/c it would mean more frequent checks).  So it will be interesting to see what she comes up with.

Avery is being a good boy right now b/c he knows Zay Zay needs the extra attention.  He actually got a hospital bed in yesterday.  He really needed one for positioning.  It sucks that my kids can't have regular beds :(  His is especially ugly too so I did some retail therapy and dressed it up real cute.  Actually went a bit crazy with their room yesterday, eek.  But it looks cute, i will have to post some pictures.   He is starting back on feeds finally at a very slow rate though.  Just glad his gut is waking up again.

Hopefully things stay quiet for a bit and the sickies leave the house soon.