Thursday, June 23, 2011

I know I'm a slacker, but don't give up on me.

Life is too short to wake up with regrets.  So love the people who treat you right.  Forget about the ones who don't.  Believe that things happen for a reason.  If you get a second chance, grab it with both hands.  If it changes your life, let it.  Nobody said life would be easy, they just promised it would be worth it.

First, I want to thank all of the wonderful people who have been supporting us, contacting us, praying for us, and loving us.  It is completely humbling.  And for some reason, it seems like I have received more e-mails, facebook messages, and cards in the mail this past week than I ever have... mostly from perfect strangers just letting me know that we are in their prayers!  You guys are just amazing.  I really don't know what to say anymore.  If it weren't for all of you, I don't know how we would keep pushing on each day.  Because like I've always said- I need to keep myself happy and healthy so that I can keep Tripp happy and healthy (well, as healthy as possible!).  We are blessed beyond words to have such an amazing group of supporters- I wish I could do something in return for each and every one of you.  I just wish I had the time to sit down and write each one of you back! 

So I know it's been a while since I've posted, and I'm sorry.  The last time I wrote,  Dr. D was making a house call to come and draw Tripp's blood for labwork.  Well, all went great while she was here- we talked and visited for a while about everything that's been going on with him.  And then we laid him on the table, with my mom holding his feet, me holding his arms and head, Dr. D sticking him, and my brother's girlfriend Ashley helping her put the blood into the different tubes.  Tripp was, of course, ticked off... but did so well (AS ALWAYS)- he's nothing short of a saint.  BUT when Dr. D had got the blood back to the lab, it had clotted and they couldn't read it :(  She was so upset- and I felt so bad because she did such a great job getting it (and not to mention she made a special trip to the house to draw it).  

So that's when she decided that we needed a home health nurse.  And she called to set it up for us last week.  So we now have CareLink Home Health.  Our nurse's name is Kati and I LOVE HER! (she is another reason that I know God is watching out for us).  She's great and I know we will get along just fine!  Right now, Kati just comes once a week to "check in" and see how Tripp is doing and to see it we need anything.  She will be re-drawing all of Tripp's labwork next week.  And the best thing about having a home health nurse now- is that if Tripp ever gets an infection bad enough to where he needs IV antibiotics- she can give them to him AT HOME!  You can't get any better than that.  Especially when I'm terrified of going into the hospital because I have this nauseating feeling that if we go in, we won't come back out.  That was amazing news for me!  So I'm really excited about having Kati now:)  Hopefully Tripp will warm up to her- he just knows her now as the girl that comes in and puts a stethescope on his chest, which he just WILL NOT have.  But I'll save the talk on his little rotten behavior later:)

He's really not been feeling good.  He's about to finish a SECOND round of antibiotics (back to back) that Dr. D started again when she was here (just because he was feeling so yucky and we were out of other options).  And usually the antibiotics make him feel better, but this time they didn't.  He had a span of about 4 days at the end of last week and through the weekend where he was breathing AWFUL again.  One night last week I swear we didn't sleep 10 minutes straight all through the night.  His breathing would sound exactly like a whistle.  And he was back to pulling from his chest and struggling for air.  I immediately went back up on the steroids, started breathing treatments, and gave him oxygen as needed.  It was really bad for about 2 days, and is gradually getting a little bit better.  But he still cannot stand up to play for more than about 5-10 minutes without wheezing and needing his "air."  It's always hard to tell with him if it's his airway swelling up again from some type of blister/irritation or if it's some type of cold/allergy.  Hopefully he can shake this soon and be back to his playful self.  He hasn't played much at ALL in the past 2 weeks:(

His eyes are almost completely shut.  There is a teeny tiny strip left where you can still tell if they're actually opened or not- but it's still covered in skin (you can't see his eyeballs at all).  His mouth is still horrible- sores covering his tongue now too, because all he does is chew on it!  That has to just be the worst pain ever- I can't even imagine.  His arms look good, his torso looks good (about the same as it's been in the past 6-8 months), but his legs and butt look terrible.  I don't know if it's because he's been kicking his legs, or rubbing his legs together or what- but he's got about one strip of "skin" on the top of his shins- but his calves are raw.  His little hands are the worst they've ever been!  He never even had any blisters on his hands (other than his raw nailbeds) until a few months ago.  They just keep popping up like crazy.  We thought it was just the heat, but now that the house has been at 68-69 degrees all day and he's still getting them, I don't think that's the case.  And last, his poor little neck and head are so raw and itchy.  I recently started using a Silveadine cream (with Silver in it:) on his neck to try and keep the psedomonas under control and that seems to be working pretty well.  I also recently switched back to the Baby Ecezma Cream that I was using a while back (not sure why I stopped)- but that seems to be helping a little with the "itching" too.  Oh, and I'm using the Aveeno oatmeal bath packets that my mom picked up from Walgreens in the bath water (along with salt and Baby Ecezma Wash) and that has helped his baths a little (I think)- of couse he is still hysterical, but you can tell that he doesn't shake in pain like before.  Hoping it's not just a fluke and it really feels a tad bit better! 

And now to the personality... O man.  What a little firecracker we are creating over here.  He's hilarious and mean- and we condone it.  It's just to darn cute not to.  And frankly, if something makes him smile- we will do it 457 million times if we have to (I'm pretty sure that's how many times we listened to Elmo's Ducks today, too).  And he started doing this in the past couple of days- If you ask him "Do you like to be nice?"  He shakes his head no.  "Do you like to be sweet?"  He shakes his head no.  "Do you like to be kind??"  Again, shakes no.  Then you ask "Do you like to be MEAN?"  And he gives the biggest grin you've ever seen.  It's too cute!  And he's now replaced "Shoo-Fly" with the LSU song.  He will use anything to make music or noise.  And I am so serious when I say that he can click his tongue or bang his drumstick to the tune of EVERY song on the "Best of Elmo 2" DVD (along with any song he hears just once- no lie).  He definitely became musically gifted the second he started losing his eyesight.  It's incredible and heart-warming to watch.  He makes me so very proud.  

And for those of you who don't think he is an angel yet, get this... every time he does stand up to play, when he's finished and ready to get back in the rocking chair-  he will first pick up his toys that are on his table, one by one, and walk to his toy basket and toss them in.  He picks up his toys:(  Such a sweet sweet boy.  I love him more than life.  He actually made me cry doing this the other day!  (I guess I'm a little emotional lately too:)  And he probably just does it for the simple fact that he's trying to make it a point that he's done playing and wants me to pick him up- but I look at it as he's being a good boy and picking up his toys:)

So, I am trying to focus on all of the positives that we have going on right now- like all the great people in our lives.  It's so incredibly hard, though, to know deep down that each day Tripp is getting worse and worse.  We need awareness and we need a cure.  And that's why we need all of you.  I can't tell you how many times a day I get note or an e-mail from someone else who just "found" Tripp's story.  It's INCREDIBLE.  And I hope it continues until everyone in the world knows about EB and what it does to these poor precious innocent children.  It's ripping out little pieces of my heart day by day to watch what this is doing to my son.  And the hardest part- not letting it show.  I know in my heart that I can't fix it- so I know that being depressed and sad about it every day is not going to do anyone any good- especially Tripp (who deserves the most happiness of anyone I know).  So that's my prayer request (besides prayers for Tripp, of course:) - that I can "keep on keeping on" no matter what obstacles arise, so that I can be the strong one and continue to hold all the pieces of this crazy puzzle together.  
I love you guys.  
Thank you again for loving my little man.  

One of my favorite pictures of all time. 
This was last July... almost a year ago already!


Sunday, June 12, 2011

Choose your own title :)

Man, oh, man.  Where to begin? 
Let's start negative, so we can end positive... shall we?
Tripp is back to his- sleeping all day, not wanting to play, infection bearing- self.  As I predicted, about 2-3 days after he got off of the antibiotics, he started slowly going downhill again.  And he didn't start feeling really bad until a few days ago.  Probably in the past 3 days, he's stood up to play about a total of 30-45 min.  He will try, and will play for a little bit, then just want to be back in the rocker. 
He's been sleeping late... like 2-3:00 in the afternoon late.  He always does that when he's sick and got something going on.  And with whatever he has going on... he has turned into a FUSSING MACHINE.  The child even fusses himself- I'm not kidding.  I guess fussing (the "hissing" noise he makes with his trach as he slaps at you) is his only way of defending himself and communicating with us.  And now that his eyesight is gone, he is sure getting good at "defending himself."  

His SAINT of a pediatrician, Dr. Defusco, offered (without me asking) to make another house call today... on a SUNDAY.  She's bringing all the stuff we need to draw blood and finally get some bloodwork done.  I think it's been since October (the last time we were in the hospital) since he's had bloodwork done.  So I'm anxious/nervous to see where he stands as far as being anemic, platelets (clotting), and infection is concerned.  And this is all IF we can get it drawn and IF he cooperates.  Dr. Defusco also called yesterday and started him on the same antibiotic that he was on a couple weeks ago.  She said that she feels in her gut, that if he's feeling so much better when he's on antibiotics, that we should keep giving them.  The only problem with that is the more he takes them, the better chance of the bug getting smart and being resistant to the antibiotic- which would mean the only other option to treat his infections would be IV antibiotics in the hospital.  But Dr. Defusco and I have always been on the same page from day one- Tripp's "quality of life" is more important than ANYTHING.  I will not magnify his pain or misery, just to prolong his life.  I want him to be happy and comfortable and as pain-free as possible.  And we will deal with running out of options when we get to that point (as I've known from the beginning that we will one day have to do).  
So I haven't used this blog as a means to vent on my personal issues, and I don't intend to start yet.  However, there have been so many questions about what's going on in my personal life that I feel obliged to let you in on the big details only (TRUST ME- You do not want to know the other details). Randy and I have been living apart and separated since last July and our divorce will be final this coming July (next month).  And ALL I will say is that things are NOT going well and have been difficult for everyone involved.  I would appreciate your prayers for understanding and forgiveness.  I will need them to get through this with just a little bit of sanity left so that I can continue to move forward.
I know that the statistics were in our favor with a special needs child, but I want to clarify that this was not something that was just given up on.  There were/are other obstacles than Tripp that were/are still involved.  Thank you for your prayers for us all.

On a different note, we had something interesting happen over here this week.  My grandma (my dad's mom) has an apartment that was added on to my parents house a few years ago so she could be close.  Well, during the "storm" we had this week, she was talking on her phone (her CORDED phone) when lightining struck through her roof, into her attic, and hit her phone line.  We didn't SEE it happen (obviously) but she said it jerked her arm and made the phone fly out of her hand.  She's okay- she just can't really move her arm.  My dad took her to the hospital and they ran every test imaginable for 2 days, while my mom and dad worked hard over here to get the hole in her roof fixed, along with her A/C, electricity, cable, etc... back up and running. 
Our luck, I know... Enter this house at your own risk!

So for a positive note....
Well, we got a whole new air condition unit put in at my mom's, I guess that's one positive thing.  Her old unit just wasn't keeping up (like a lot of units here in Louisiana do in the summer), but with Tripp here- that wasn't cutting it.  If we were comfortable, we knew he was sweating and miserable.  So now it is borderline FREEZING in here- and little man is finally comfortable and getting less new blisters a day.  We just bundle up in long-sleeves and robes. 

There's not too much more positive going on around here... except for all the wonderful people that I have in my life that are getting me through all of these hard times.  I need happiness and sanity to make Tripp happy and comfortable.  And I am so lucky to have those people in my life who make me happy and who would do anything for Tripp and I :)
I will let you guys know what the doctor says and what the bloodwork results are.  
Thank you for your thoughts, prayers, letters, emails, and kind words! 
Once again, we are so blesssed.


Friday, June 3, 2011

Tripp's Follow-up story on WWL Ch.4

I didn't get much notice that this was coming on... (like I found out TODAY), so in case you missed it- 
here is Tripp's "follow-up" story that WWL Channel 4 News asked to do about Tripp reaching the milestone of 2 years old! 
I was SO excited that they showed Tripp's beautiful face in this one! 
Please visit the WWL website HERE to read the story in text or to watch.

Once again, my dear friend Bill Capo- you did an amazing job of sharing the story of my little man. 
I'm forever grateful to you for wanting to help us spread the word about Tripp and EB. 
Thank you again for being so sincere and so wonderful to us.