Wednesday, September 29, 2010


I am totally overwhelmed by the people who love my son.  And I am so amazed by the people who take time out of their own day to comment, send e-mails, or send cards.  I really try hard to respond to everyone-  and sometimes it takes me a little while (I usually find a time once a week or so to sit down and write everyone back) so if I haven't sent you a thank-you, please be patient with me, but more importantly- please know that every word and every gift has touched my heart in a way that I could never express to any of you.  And if you've done something like that for us- you know who you are... and I THANK YOU.  Everyone wonders how I can ever be positive and how I can see the good from this horrible situation, well that is exactly why.  I can see the lives that Tripp has touched and I see the GOOD come out of SO many kind, generous people.  What a blessing this blog has been in my life- there are people across the world whom I've never "met" but who LOVE my son.  
"No man hath seen God at any time.  If we love one another, God dwelleth in us, and his love is perfected in us" 
1 John 4:12 

I really wish I could say that Tripp is doing so much better.  But he's just not.  He's definitely been smiling a little more and playing a little more.  But he is still just not the same baby he was 3 weeks ago.  Every now and then he will have a few good moments and I think he might be shaking off whatever this is- and then he's back to throwing himself back and lifting those legs and acting like he's in pain.  I know a lot of it has to do with his eye because it's horrible right now (oh, I cancelled Tuesday's eye appointment because he woke up and it looked a lot better, and I knew it would be a wasted trip because they weren't going to believe me) but I just know something else is going on... I just don't know what.  His appointments are rescheduled for tomorrow because of course, Tuesday evening his eye looked bad again.  So tomorrow he has a dentist appointment at 12, and eye appointment at 3:00, and somewhere in between or before the day is over, we have to squeeze in blood work at the pediatric clinic and then shots at his pediatrician's office.  Phew.  It's going to be a long day... and a tough day for little man.  He has to get his flu shot and then all of his 16 month shots that he's been behind on.  And he still has a bruise the size of a quarter from the Rocephin shot 3 weeks ago.  Oh- and tomorrow is bath day. Grrrrrr... He will be getting his Tylenol with Codeine every 6 hours on the dot tomorrow.  It seems like the only time he's able to function and be happy lately is when he's on the codeine.  And I know that's not good, and it's certainly not what I want- but like Dr. Defusco said, "If it's making him feel that much better, then he's obviously in a lot of pain and he needs it."  I've only been giving it to him once a day... but about 30 minutes after he gets it, he's like a new baby.  That last about an hour, then he's in la-la land.  

So I'm just not sure what's going on with him lately.  And we've done almost all the tests we can- OH yeah- C-Diff was NEGATIVE.  Go figure.  I'm clueless as to what's going on.  And just saying, "Well I hope he gets better soon"- just isn't cutting it anymore.  

I talked to Daylon's mom, Jennifer, about 2 nights ago for about 45 minutes.  Boy, is she a sweetheart... and what amazing parents she and her husband, Brian must be to be going through EB and the transplant  with 4 other children.  She answered a lot of questions and gave me a lot of information about the Bone Marrow Transplant.  It's not something that will be happening tomorrow- don't worry :)  Just something that's been running through my mind lately.  I want to research and be a lot more knowledgeable about it than I am now- just in case it's something we decide to take on.  Honestly, I don't even know if Tripp would be healthy enough to take it on right now.  These little ones have to be pretty strong before the transplant because it takes a really hard hit at them.  But I can't help and think if it would be the right path for us... honestly, it's been consuming my almost every thought.  

Well, the king is asleep so I guess I should be too.  Once again, I thank each and every one of you- my faithful blog readers... you truly, truly are what keeps me "keepin' on."  And I'm forever grateful for that.  

The smile I kept getting while rocking this morning. 
Melts my heart.


Monday, September 27, 2010

Big prayers for Big answers.

For some reason, today I think that everyone should thank God for their babies- for their health, their ability to speak and ability to eat, their fingernails and toenails, their skin, their eyes... everything about them.  Because a having a healthy baby is a gift- a gift that's not to be taken for granted.  

I would give anything (and I mean anything... my right arm, my leg... anything) to be able to just pack Tripp up and take him to the beach, or to the mall, or hell- just outside.  I would do anything just to be able to dress him in normal clothes, or just slap a diaper on him without having to bandage his bottom back up and lube everything in aquaphor.  But most importantly, I'd give anything not to have to watch him in pain everyday.  Not to have to watch him try and just open one eye because the other one is swollen shut and pouring like a faucet.  No to have to watch him clawing at his neck (thank God for no fingernails) because the sores around his trach itch him.  Not to have pull a bandage off of a sore while he cries in pain.  Or I'd give anything for him to be able to wake up happy and not in pain. 

Sorry but every now and then I have to vent.  I wouldn't be able to make it through unless I did.  I just go through the motions every day, putting on a happy face for Tripp, and all cried out.  But if I don't let it out every now and then, it builds up.  My days and nights and weekdays and weekends all run together.  And no matter how much coffee I drink, I can't get my energy back (I need to get my butt back on the elliptical).  I'm even sleeping a little better at night since Tripp has been sick (guess he's trying to catch up).  I just feel BLAH.  I have so many emotions and thoughts and questions going through my head right now.  I can't help but wonder about what the next year or next few months are going to bring for us- in many ways.  I'm praying hard.  I started reading a book last night called The Power of Positive Thinking (yes, I am in the middle of about 3 books right now) and I wanted to share some things from the book.  It says that "ordinary problems could be met by ordinary prayers, but when big trouble comes along, you have to pray deep prayers."  It also said that "God will rate you according to the size of your prayers."  And here is the scripture that follows "According to your faith, be it unto you." (Matthew 9:29).  So the bigger your problem, the bigger your prayer should be, right?  Right.  That's why I'm praying big... about what the future holds for us.  I have a feeling that I will have to make big decisions soon, about a lot of things in my life.  So big decisions- means big prayers.  

Tripp is doing about the same, maybe a little better.  I've been giving him Tylenol with Codeine about once a day, too.  And he seems to perk up quickly and play a little, then back to laying back in pain.  With all of the other stuff that's been going on, I forgot to mention his poor eye.  It's been so bad ever since surgery but I just haven't been able to take him back to the doctor with all the other stuff going on (plus there's not much for the doctor left to do!)  So I finally made a doctor's appointment for his eye tomorrow.  Don't know what they will do- we will possibly have to take out the symblepharon ring and just put the contact back in.  I don't know??  We will see and I will let you know.  I'm also waiting to get his stool samples back to see if he even has C-Diff.  So, I'll let you know about that too.  Also, his mouth has been bothering him so much lately, too.  So I'm trying to schedule a dentist appointment, too.  So that if he has to go "under" again for his eyes, we can get that mouth fixed, too (the dentist finally got her equipment in the OR at Ochsner!!!).  Anyway, that's where we are right now... I'm frustrated and want answers... but I'm praying BIG- because I want BIG answers:) Love you all. 

How this child smiles, I do not know... 


Saturday, September 25, 2010

Pick a diagnosis, any diagnosis...

Did we treat Tripp for a Urinary Tract Infection- yes.  Do we know if he really had one- no.  Is he better now- no.  So now our brains are saying, "What if it IS C-Diff?"  I think that's the only explanation of why he's still in pain, still has diarrhea, still losing weight, and still NOT HIMSELF.  Seriously, from the day of his eye surgery- September 8- he has NOT sat by himself at all.  He's been in someone's arms- either in the rocking chair, or us standing up.  And don't you dare try and sit him on the ground to play with his toys- you would think he was being punished.  I just don't know if he's been sick and weak for so long that he can't snap out of it- or if something really yucky is going on. 

So with C-Diff, you have to test 3 different stools to really call it "negative."  So yesterday I brought 2 more stools to Dr. Defusco's office in Destrehan so that we could test and be SURE if it's C-Diff or not.  Meanwhile, he's starting Flagyl- and being treated for C-Diff.  We are running out of options- and honestly, I'm kind of starting to get a little worried.  So the Flagyl (Metronidazole) is what we are treating him with and it is 4xday for 10 days.  AHHHHHH.  Sorry.  But if you would SEE the amount of medicine this child is on- adding one more makes me cringe.  I split them up throughout the day, but he has about 10 syringes full in the morning and 4 at night.  It reminds me of where I used to work, with the elderly.  I used to give some of them about 20 pills in the morning.  Tripp is like a little old man!  

He's back on his blended diet.  When he went in for his eye surgery, he weighed about 20 lbs 14 oz. (Mind you, this is with ALL his bandages on)- and that's the most he's ever weighed.  About a week ago he had dropped to 19.4.  And last night he was 19.6.  So I hope and pray that he is started to gain the weight back- because he canNOT afford to lose anymore- he's already a little skinny midget.  I always joke with him and tell him that he's the "Biggest Midget I know." 

So he STILL hasn't gotten his shots, either.  That would just be torture right now.  But he's going on being about a month and a half behind.  I know he's not exposed to kids, or a lot of people at all... but it's still scary.  If he gets anything that's more serious than whatever he has right now- it's NOT going to be good.  Because whatever this is threw him for a loop.  

I have to say- after seeing what Tripp went through these past few weeks, the Bone Marrow Transplant has been running through my mind a little bit more.  It would be a really, really tough decision.  And I don't really know enough about it, or how we would go about it.  But I have to say that the thought has been there.  I can't help but wonder "what if?" But there is the "what if he doesn't make it through the transplant but I would've had 5 more years with him?" And the "what if I don't have much more time, but the transplant is our miracle we've been praying for?"  There's no easy way to make that decision.  I guess it will all come with time.  Meanwhile, I'd just like to do a little research and talk to the other parents who children have been through it.  I don't know if the thought is just crossing my mind because he hasn't been doing well or what.  But I just keep thinking about how he's ALWAYS going to have these issues and he's ALWAYS going to be in pain.  And the worst part about this whole thing- is that he is SO cognitively there.  He will KNOW that he is different and KNOW that his life "stinks."  So do you risk the life he has for a chance at a better one?  There's no easy answer.  

So anyway, that's where we stand at this point.  I'm hoping this new medicine will be the fix, and if it isn't... I think we are at a stand still.  He's had almost every part of his body checked, blood work, x-rays, stool samples... I don't know.  But I do know that I am SO GRATEFUL to have Dr. Defusco as his pediatrician.  I don't know what I would do without her.  The way she cares about Tripp and how she goes out of her way for him makes me feel like we are in really good hands.  


Tuesday, September 21, 2010

Tripp to the ER.

Sunday around 5:00 pm I talked to Dr. Defusco about how he was doing.  He was still in horrible pain and had not wanted to get off the rocker.  He wasn't sitting up to play, wasn't smiling... nothing.  By this time, the pain had been this severe for over 3 days, so we needed to do something.  Dr. Defusco and I talked for a while going back and forth with his symptoms wondering what this could be.  She called the ER pediatrician and spoke with him a while, and they decided that his symptoms could be something called an intussusception.  This is where your bowel kind-of "telescopes" inside itself and it could cut off the blood supply- it can be very serious.  So when she mentioned that, we knew we couldn't take any chances and she said she would sleep better knowing that we were sending him to get checked.  

So she let the ER doctor know we were coming and we packed up (takes about an hour) all our things as if we were going to be admitted (just in case).  You can never be too prepared- been there, done that.  We go to Ochsner in Metairie, so we got there at about 8:30.  This was by far THE BEST ER experience that we've ever had.  I swear, it was like everyone we came in contact with knew Tripp and knew exactly what I expected.  They didn't do anything unreasonable and they treated us with such respect.  The x-ray technicians were SO pleasant and SO gentle with Tripp, the nurses were great, the secretaries were great, the doctor was great.  I know, WE ARE BLESSED to have that kind of care for Tripp.  

They decided that from his abdominal x-rays and his symptoms that it wasn't an intussusception.  Then thought it could be possible C-Difficle, which is a bacterial infection that can be caused from taking antibiotics.  The Doc said that just all the diarrhea itself could be causing the pain by the bowel contracting.  So they took a stool sample and let us come home because it wasn't worth the risk to keep him in the hospital when he wasn't dehydrated (I've been drowning him in Pedialyte).  

But guess what?  C-Diff is negative.  I poked at my brain all day yesterday and finally realized that he could have a Urinary Tract Infection from all the diarrhea.  And if you've ever had one of those, you know they hurt like hell.  I noticed that when I was changing him, his diaper would be dry and then all of a sudden he would let out A LOT of urine while squeezing his legs in pain.  Yesterday was the first time I noticed that he was actually "holding" his urine in.  It must be hurting him so bad.  

SO... if that's what it is, hopefully this short round of antibiotics will take care of it and we can try and get back to normal.  Dr. Defusco is wondering if he really even had pneumonia now, because his chest x-ray looked the same when we took it again Sunday night.  So maybe that's just what his lungs look like... who knows.  But we know he had some type of viral infection with all the fevers he had for over a week.  

So here's the vicious cycle:  Eye surgery > catches something from the hospital > has to be on antibiotics > antibiotics cause diarrhea > diarrhea causes a UTI > back on antibiotics.  NICE.  Just hoping once we get him better, that we don't need another eye surgery.  Then we're back at square one.  

Speaking of eyes, his surgery eye isn't looking any better and it's almost been 2 weeks.  It's still really swollen and watery.  So I guess once he feels a little better, that will be our next thing to worry about- because there's ALWAYS something :)  Oh, and between all these "diagnoses," he's lost over a pound.  Thank God I fattened him up before all of this or we'd be in bigger trouble.  He's back on his regular "fatten me up" diet now, so hopefully we can pack the pounds (or pound) back on.  

I haven't been taking many pictures, because honestly, he hasn't played in over a week.  But I do want to share a book that I've been reading.  It's called Without a Word by Jill Kelly.  It's Jim Kelly (the Buffalo Bills Hall of Fame quarterback)'s wife.  The book is about their son, Hunter, who was born with a rare genetic disease called Krabbe's Leukodystrophy.  Hunter passed away at 9 years old.  And this book is about all of the struggles they had to endure in that amount of time (their family, their marriage), but mostly about what a blessing Hunter was to their lives.  It's like I could have written this book.  It's almost exactly our situation.  If you're looking for a new book- this one's a good one.  

Ok, I can't leave you without a picture, so I give you.... the hands of an angel-


Sunday, September 19, 2010


So it's been a rough week.  The last time I wrote, we just found out that Tripp had pneumonia and he got a Rocephin shot and was starting oral antibiotics.  Well- not only did the antibiotic give him massive diarrhea, it also gave him severe stomach cramps- at least that's what I think is causing him SO much pain.  He has been in excruciating pain for the last 3 days- tightening his legs together and pulling them to his chest constantly, not playing, smiling, anything.  He just wants to be rocked with his eyes closed and throws a fit if you even move him a certain way.  That is NOT my baby.  I kept picking my brain at what was causing him to be in so much pain.  And yesterday we finally looked up the side effects of the Augmentin (the oral antibiotic) and most all of them said severe stomach pain.  So I stopped it immediately and e-mailed Dr. Defusco and Dr. Urrego (his lung doctor).  By the way- yesterday was Saturday (and it's Football season) and both of Tripp's doctors emailed me back almost immediately more than once with their advice/help.  I don't know many doctors who would do that- but I feel pretty darn lucky to have them.  

They both said that the Augmentin was most probably the cause of the stomach pain (I'm assuming it was his stomach causing the pain).  So Dr. Defusco called him in another antibiotic and I will start that one today.  He's already on 2 different probiotics but she wants to start him on another one called Florastor for Kids.  It's used in kids with C-Diff (a bacterial infection associated with antibiotic use).  So hopefully, between these 3 probiotics, we can get through another round of antibiotics and fix this darn puh-neumonia :) He hasn't really played or done much of anything but rock since his eye surgery 2 Wednesdays ago :(

So hopefully this new antibiotic will do the trick.  I'll let you know.  On a side note, my sister leaves today (tear).  Have a great Sunday!  Hug those precious babies of yours :) 

Nanny getting some love before she leaves.


Thursday, September 16, 2010


FIRST- my sister is in town!!! (what a week she chose to come, huh? but at least she is here to help while Tripp is sick).   We are enjoying her so much... I'm gonna hate when she has to leave :(

Tripp was still running fever and feeling terrible yesterday, so Dr. Defusco and I agreed that I should probably bring him in and have some tests run.   We went to her office and saw her first. She looked in his ears and felt his tummy, and we talked about what's been going on with him.  I told her that I just had a bad feeling because he'd been running fever and feeling bad for so long- and all I kept thinking about was if he had pneumonia or a blood infection and we were overlooking it.  So we decided to have some blood work and a chest x-ray done.   

Getting blood work wasn't as bad as I thought- he's got a great vein in the side of his head (Thank GOD because it would be out of the question to try and draw blood from anywhere else).  I held his head really tight on my chest, and they drew it very quickly.  Of course, he threw a fit- but they did it so fast that it wasn't that bad.  But the chest x-ray- terrible.  My sis and I had to physically hold his whole body still while he was throwing a FIT.  He got about 3 new blisters on the back of his head.  Ugh.

So, the blood work was okay.  Dr. Defusco said that if his WBC (white blood count- which indicates an infection) was above 20,000, that she was going to admit him into the hospital for IV antibiotics and fluids.  But his WBC count was at 14,000.  His hgb (hemoglobin) and his platelets were significantly elevated.  This can either indicate an infection or dehydration.  She said his platelet count was at 900,000.  Normal levels are around 500,000.  This means his blood is clotting well, but very thick and she said if the level gets over 1.5 million, then you worry about his blood not moving around well.  But these findings didn't really tell us much- the Chest X-ray was what showed he had a touch of pneumonia in his left lower lobe.  SO at least we have somewhat of an answer, but she said that if he doesn't improve in about 24 hours, she might have to put him in the hospital if he doesn't improve.  He got a shot of Rocephin and is going to be on an oral antibiotic for the next 10 days.  

So, that's where we are.  He's still sleeping now.  But I will let you know what happens.  Please keep him in your prayers that he will improve and we DO NOT have to admit him.  What a nightmare.  Thank you guys:)


Sunday, September 12, 2010

A BIG FAT Jinx...

I knew, knew, knew that I shouldn't have posted on how well Tripp was doing.  Yesterday was rough.  I'm pretty sure he has some type of virus or something.  He threw up yesterday morning, then after that he pretty much rocked in the rocker with one of us all day long.  He is still feeling bad today and still running fever.  My man is miserable.  It's so sad.  He will actually just lay down by himself in the bed and look at you- and that's NOT my baby.  

Please say some extra prayers for baby T as he tries to fight whatever this little bug is.  Because he's also losing calories, too:(  His eyes are about the same... surgery eye is still pretty swollen and running.  But he hasn't opened them much anyway.  Thank you all so much!


Friday, September 10, 2010

Two posts in one day... this could be a record.

Baby T is finally asleep lying next to me... and yes, I know I should be sleeping.  But I wanted to let you know how the rest of the day went because I was so darn happy.  Tripp was just plain miserable before we bathed him (we skipped yesterday because that would have been like torture).  And I was just plain dreading bath today-- but he was an ANGEL.  And after bath, he was like a new child.  He was smiling and happy and playing.  Eye still swollen, but opening it a LOT better.  What a relief.  I never thought I would miss pushing that little man around in his car for hours at a time.  Or miss him slapping me out of his face when I tried to kiss him- but I did.  Every time he feels bad and isn't himself I always miss him so much and it always makes me appreciate the things that we CAN do together so much more.  What I really appreciate now is his eyesight.  I kept imagining today what it would be like if he couldn't see at all.  That would be so very sad.  Praying tomorrow will only be better :)

I know it is all the prayers going up for our little man that is helping him pull through!  
Because Man, O Man... I love this kid. 


Eye Update

So far, today is a little better than yesterday.  Here's the catch... I finally talked to Dr. Shah today (who did the surgery)- I had missed his call yesterday.  And today he says this: "Well, all those things are normal (not opening his eyes, swelling, watering, pain)."  And he also says, "I also had to make an abrasion on his cornea while excising the lid, so he's probably going to have a really rough week."  UH, are you serious?  Ok, so that could explain why he won't open his eye and why he's in excruciating pain.  Which, if I would have known that I wouldn't have been so concerned about how he was acting... but when he came out to talk to us after surgery, he said everything went well- he just placed the ring in and snipped the granulation tissue.  And said he wouldn't need anything for pain.  Guess that changed.  

Anyway, (as my grandpa used to say, in his low deep voice)- "Whatcha gonna do??" At least I know now why he's in so much pain and I can expect the next few days to be rough and that's normal.  Though he has been running a little low grade fever.  But that could just be the stress from surgery.  

With all that's been going on, he's about a month late on shots.  He'll be 16 months on Tuesday and hasn't had his 15 month shots yet.  But last week he was running fever so Dr. Defusco didn't want to give them, and this week he had surgery and couldn't get them either.  So I guess next week he will be getting shots.  Poor man.  I hate shots.  But Dr. Defusco threatened me again with the "no kids" speech.  Especially now that he's behind on shots.  So he just cannot be around kids or really anyone who is "around kids."  It's too risky.  

MY SISTER IS COMING HOME ON MONDAY!!  I guess my guilt trip worked!!  She's staying until the next Sunday.  I miss her so much and I'm so excited.  I really hope Tripp is feeling better so she can see all the fun stuff he's doing in person.  I hope she can get out of the handcuffs I'll have her in and doesn't miss her plane to North Dakota.  Otherwise, Uncle Mike will probably be kind of mad at me. :)

So far today, Tripp has opened his eyes a little bit more.  The surgery eye is still really swollen and watering like crazy.  But he actually rode around in his car a little today, while I sang 100 songs.  He's a little doped up on the tylenol with codeine- but whatever works.  At least he actually did something other than rock All. Day. Long.  So it's only 2:00- I'm hoping things only get better and not worse.  Thank you all again for your love, prayers, and support.  


Thursday, September 9, 2010

Story and Update.

I wanted to post this blog a few days ago, but I've been distracted by Tripp's surgery.  I want to share something that happened to me the other day.  I decided that I wanted to go get me some scrub pants and t-shirts because I'm tired of ruining all my clothes with Aquaphor grease.  So I thought that I'd buy a few pairs of scrub pants to wear every day.  I went to Life Care Uniforms in Hammond.  There was a really nice lady who was helping me find the pants I wanted.  She started making conversation about where I worked and the colors I needed.  I started to explain my situation and that I was a stay at home mom and the color didn't matter.  She started asking some more questions and I ended up giving her one of Tripp's cards.  Meanwhile, she had already checked me out and I had never given her my credit card.  She bought my pants for me (3 pairs- $65.00)--- she had no idea who I was or really how my situation was... but she wanted to help.  I started crying right there at the register and kept crying as I got in the car.  I was kind of speechless.    

There are so many people who do so many nice things for me and Tripp and Randy.  But sometimes it takes catching me off-guard to REALLY appreciate it.  It just goes to show that the world is full of some really GOOD people.  That sweet woman didn't have to do that for me- she would have never seen me again, or never even had to think about me again- but she did it out of complete kindness and thoughtfulness.  It's the little things that count- the thoughtful cards people send, the words of encouragement, and the prayers that mean so very much.  

Tripp had a really rough day.  So far he's spent the entire day in the rocking chair and has only opened his eyes twice- to just fall back in pain.  He's miserable and his lid is really swollen.  I'm hoping this will go away and it's all normal... but I'm not sure.  There IS a foreign object in his eye.  I'm giving him the Tylenol with Codeine (which I got from the anesthesiologist because the doctor wouldn't give it) THANK GOD (by the way- I cannot say ENOUGH good things about our anesthesiologist. Tripp has had the same one the last few surgeries... and frankly, I'd just like to take him home with me.  He's amazing). But he did get his eyelid snipped on- and that has to be somewhat painful, come on.  So please say some extra prayers that tomorrow will be better than today and not worse.  All I can hope for is that each day he feels a little better.  

SO MUCH THANKS to everyone for all the love and support and the very SWEET words of encouragement.  They honestly get me through the day.  I love you guys. 

(though I secretly love me some Brett Favre.)


Wednesday, September 8, 2010


Dear God, 
As I lie here next to my little angel... I am overwhelmed with things to be thankful for.  I'm not even sure where to begin.  Thank you for Tripp's doctors.  Without them- he certainly would not be where he is today.  Thank you for giving them the knowledge and the capability to do the things that they do to keep my son alive.  Thank you for the fact that my son doesn't have problems with anesthesia- what in the world would we do then??  Thank you for the nursing staff at the hospital.  I truly feel "loved" and feel like my son is "loved" the minute we set foot into the hospital.  From the receptionists, to the nurses, respiratory therapists, anesthesiologists, and doctors- they all "know" us and they all treat us with such kindness and respect.  Thank you for my family and friends.  I can't imagine if I had to go through all of this without the constant love and support I get from them.  Thank you for a mother that jumps through hoops for me and my family.  And who would do anything in the world to make me just a tiny bit happier.  Thank you for my blog readers, some whom I've never even met... sometimes they are what keep me going.  Thank you for Geri, our "EB" nurse- who is not only my resource for everything.. but sometimes my "counselor":) Thank you for my fellow "EB parents"-who feel my pain and can relate to what I am going through. Thank you the ability to actually get out of bed each morning and continue to do what I have to do each day- because sometimes it's not easy.  Thank you for the patience to do a 30 minute diaper change, a 2 hour bathing process, or spend a day blending foods.  Thank you for the strength to hold my head up high and realize that feeling sorry for myself is a selfish waste of time.  Thank you for my son- who warms my heart and teaches me to cherish every second.  Is it easy to watch him go through this every day- NO.  But O, the rewards... I can't wait for the rewards he will receive in heaven. God, I know that you did not put disease into this world- that it was our own sins.  And I know that you are hurting just as much as we are seeing Tripp in pain.  That is why I am thankful- because even though we are the reason for all the horrible things in this world- You are the reason that there are GREAT people and GREAT hospitals, and GREAT things that come out of all this.  Thank you for my life... and the people in it.  I am blessed.  

Tripp's surgery was scheduled for 2:00pm.  We waited in Pre-op from 1:00-4:30 when they finally took him.  He was such an angel... and O MY the versed made him hilarious.  We got good news and bad news.  
Bad news:
Dr. Rodriguez (ENT) went in while he was already going to be under anesthesia and did a bronchoscope to "check out" his vocal cords (you know, the place that was swollen that caused him to have to get the tracheotomy).  Well see for yourself...

I'm not sure if you know what a "normal" airway looks like... but it's NOT LIKE THIS.  His vocal cords and epiglottis are all fused together into one big blister.  No, this is NOT good.  This means that if somehow the trach would get blocked or plugged at all- he would have NO other method of breathing.  Which we kind of knew... just didn't know it was that bad.  So the trach will not be coming out anytime soon... (which we also knew)... BUT we need extra prayers that the sore underneath the trach itself will not cause a blister to scar and block the trach- because that is his only means of an "airway." 

Good news:
Dr. Shah (corneal specialist) who did his surgery today, said that everything went really well.  He said the symblepharon ring fit very nicely and that he feels it will hold in place a lot longer than he initially thought.  He also said that there was a lot of granulation tissue (what was coming down in the corner of his eye).  Granulation tissue is the devil.... it spreads like wild fire.  Especially if you start "clipping" on it.  But he said that he trimmed most of it and gave him a steroid shot in his eyelid to try and "tame" it.  And then gave me some steroid and antibiotic drops to keep in his eyes.  

We made it home safe after a long and stressful day.  Tripp opened his eyes for about a minute total since surgery... so I haven't really been able to "see" what his eyes look like.  But overall, I think he is doing very well and the pain and swelling is expected.  He amazed us when we got home and Randy said "show me your muscles" and he (with his eyes closed) gave a grin and squeezed his arms like he was showing his muscles:) I'm telling you... he's superhuman.  I will try to let you know how he's doing tomorrow- even if it's just a short update.  But he is sleeping so I'll cut it short:) 

Thank you ALL more than I could ever express for all the support, thoughts, prayers, and love.  It keeps ME going- therefore keeps TRIPP going.  We truly, truly appreciate it.   I love you guys.  
I'll leave you with some pictures from today's surgery...  

In Pre-op before versed

Pre-op... after versed. 


Rocking with Grammy in Recovery. 


Saturday, September 4, 2010

Another Eye Surgery

So since the last time I wrote, Tripp's eye has gotten a lot worse.  It's swollen, red, and I think the contact is bent.  Not to mention there is that symblepharon (skin tag that's fusing to his eyeball) in the corner that's just growing and growing.  And I'm pretty sure that's what's causing the contact to move.  Not sure though what is causing the lid to blister and swell again, though.  Unless he's rubbing when I'm not looking.  Which isn't often.  SO-  we went to the eye doctor Thursday and he consulted with the corneal specialists (who doesn't treat kids, by the way) and they decided that our next option was something called a "symblepharon ring."  Yeah- I don't know.  I need to research and put a call into my EB nurse.  It's supposedly a piece of PLASTIC (layered in membranes) that they will put in his eye almost like a contact- but it covers more of the eye.  They will need to cut a hole in the middle of it so he can actually SEE.  It's supposed to also keep the symblepharon from growing (I think).  


 I just don't know what to do anymore.  I know I should be grateful for having something new to try and having another option... but placing another piece of plastic that is thicker than the contact in his eye doesn't sound very EB friendly to me.  Anyway- surgery is scheduled for this Wednesday at 2:00pm.  I will be doing all the research and calling around that I can do on Monday and Tuesday to find our more about this surgery.  But right now- the doctor and the corneal specialists both seem like they're ready to wash their hands of us. 

And that's something else I could go on and on about- I feel like the doctors should be honored to be able to be Tripp's doctor.  I mean, as a doctor wouldn't you like to be able to treat a child with a disease that only comes around every 1 in 2 million kids??  They could be learning so much and researching so much- instead they are intimidated.  Sorry, I'm venting.  I just got angry on Thursday because I could clearly see that his contact was bent (and anyone who wears contacts should know that a bent contact is irritating, right??)  And you would think an eye doctor would know the same.  Well, they didn't want to have to hold him down to get it out- and don't get me wrong- neither did I, but what were our other options?  Leave it in?? I GUESS SO.  Because it's still in- and still bent.  And I can't get it out because every time I go near his eye- he FREAKS.  

So please say some prayers for us- we need them.  I'm close to having a nervous breakdown.  It's the worst feeling when you don't have a clue how to help your child and he's constantly in pain.  This is such a horrible disease in every single way.  All I can think about is that Tripp's reward in heaven will be so great, that maybe it will be worth all this suffering.  But sometimes that's just not enough to ease your mind, either.  

So- I'll end with some pictures...  I give you- MY AMAZING, BEAUTIFUL, ANGEL BABY BOY...

Some outside wagon time.  
It was actually a tad bit tolerable one day last week.
This is probably why his eye is now bad. 
Lose-Lose--- always:) 

My cousin Jamie has been coming over to help us with bath. 
She decided that Elmo must be present at bath time and took it upon herself to buy him. 
We.      LOVE.     Jamie :)