Tuesday, June 15, 2010

Eye Doctor Day=We all need some sedatives!!!

Here it goes... Today was Tripp's eye appointment.  We were supposed to be going in to get both of the contacts taken out and to get 2 new ones put in (you cannot imagine how totally AWFUL this process is).  I had nervous stomach all morning.  There is no way to describe what he has to go through to have this done- but I will try my hardest.  First, I want to tell you that I have tried everything in my power to get some type of conscious sedation.  But the doctor said that it can't be done in the "office."  Tripp's pediatrician, Dr. Lisa Defusco... (who has been awesome from day one) even called the ICU doctor at Ochsner to try and get some kind of "anesthesia" for him so that he wouldn't have to go through this every month (or every time the contacts come out).  But right now, nothing has happened- so we had to go to our appointment and I guess just "suck it up" another time.

When the doctor first comes in, he takes a look at his eyes (for this part, Tripp is the best angel baby in the whole wide world- he just looks at him with the light shining in his eyes and smiles).  When he looked, he said he could see the contact in the left eye, but he didn't see the one in the right eye (which is his bad eye- the one with the big blister on it).  Before go on, I want to tell you that the actual doctor has never had to put the contacts in his eyes before- it's always been the resident that is there who does it.  I love this doctor- he is very concerned and has been very accommodating to us since day one, BUT I was very happy that he was going to be the one who was going to try and replace the contact this time (because he's never seen HOW traumatic the situation really is).  Maybe next time he will try a little harder to get some type of sedative for him, or agree to do the change-outs in the OR.

SO, he decided that we would leave the left eye alone, since it looks good- but he wanted to check the right eye and see if the contact was still in and if so, then change it out.  Usually they just do the procedure right there in the exam room with him on my lap holding him down (well, with 3 of us holding him down).  But today, he wanted to bring him back into the procedure room where there was a padded table to lay him on.  Ok, now get this- they tell me I can't go back there with him.   HA HA HA HA HA.  So, there have not been many times that I've left my child alone- and this was not going to be one of them.  I told them I was going no matter what- where HE goes, MOMMY goes.  They didn't give a fight at all.

So we laid him down on the table (I will not even discuss what went on with one of the residents and I, because I will probably say something not nice).  See, the problem is THIS- If this was your child, would you let three people hold him down while he gets SO upset that he has trouble breathing and starts turning a tad bit blue??  Not to mention the fact that HOLDING him down while he's trying his hardest to push you away, causes FRICTION.  And friction in EB=blisters.  Or the fact that it's 400 degrees in those exam rooms and he's sweating BEFORE you even start holding him down.  Heat and sweating in EB= blisters.  (Just so ya know.) Get him some DARN sedation, already!!!

Anyway... enough of my rampage.  The first time we hold him down, they put the speculum in and he takes a Q-tip and digs through his eye to find the contact.  It was still in there (which I was almost certain of, because if not he would have had such an abrasion that he wouldn't be able to open his eye).  So he gets it out.  Then the second time we hold him down, he puts the speculum in and tries to get the contact in.  No success.  So we let him rest, then the resident who is here this month (whom I LOOOOOOVE- he is so kind and so gentle with Tripp) comes in to help.  So the THIRD time we hold him down they finally get it in.  All I could think about was them taking my baby in this room without me in here.  Why would they even WANT to do that.  By this time, he is sweating bullets and can hardly catch his breath.  It is heart wrenching to watch.  Ok, this may be vulgar, but this is for anyone who has never seen a speculum in an eye.  I just want to show you what's looking up at me while this is going on.
(FYI: this is NOT Tripp's eye. Ha)
Sorry for that... just wanted to give you an idea.  Anyway, on a brighter note.... I have the cutest, smartest, funniest baby in the whole world.  O my goodness, he is such a blessing.  Every day he gets cuter and smarter and funnier!!! I could just eat him up.  I just don't understand how a child that is going through so much on a day to day basis can possibly be this good.  Thank you, God... for my little miracle. 

My little eye roller (which we highly discourage now that the contacts are in)... 
but sometimes he just feels the need, I guess.

Oh, and PS... I wanted to thank everyone for their comments and wanted to answer you guys about probiotics.  He had been on the probiotics for a few months... and then for some reason I had stopped them (don't ask why... negligent mother, I guess!)  But I started them back about 3 days into the "diarrhea episode."  So hopefully that helped a little.  And from now on, he will stay on them, no matter what.  But I don't know if they would have helped the diarrhea or not... I guess we will see if there is a next time!!  Thanks you guys!!


Monday, June 14, 2010


Ok I know it's been awhile... I'm sorry.  Here's what's been going on.  Last week, Tripp started breathing bad.  We changed out his trach several times, but nothing helped.  When we suctioned and suctioned and weren't getting much.  So I called and got an appointment with the ENT.  She looked down his trach and said his secretions were so thick that she could hardly even see the sore underneath.  She said she thought that he had an upper respiratory infection and wanted to start him on antibiotics and then go back up to the higher dose of steroids and taper back down.  I wasn't crazy about starting the antibiotics because he never does well on them.  But by the way he was breathing, I said okay.

So he started on antibiotics that he was supposed to be on for 10 days.  Well after the 2nd day, he started with massive diarrhea.  I immediately stopped the antibiotic and called the pediatrician.  I gave him pedialyte and rice cereal. The diarrhea lasted about 5 days (therefore he got almost NO calories for that time)... and it just stopped "somewhat" yesterday.  It was EXHAUSTING.  I must have changed his diaper every 5-10 minutes for a good two days.  We could barley keep up with diapers.  And my poor baby... his bottom is already raw, so any little amount of poo-poo burned him immediately.  And this just made his bottom even worse.

But the worst part is that I think just going up on the steroids helped his breathing, so he really probably didn't even need the antibiotics.  He had a horrible week for nothing!  But, o well.  We had to at least try.  His breathing got better within 2 days on the high dose of steroids, so I'm guessing that maybe his sore under his trach was getting bigger and needed some shrinking down.

So as of today, the diarrhea is better and the breathing has good days and bad.  The last few nights haven't been great, so I am exhausted and honestly just in a really bad FUNK.  I apologize.  I will try and update again as soon as I can.  I love you all and thanks for all the support!  We truly need it!


Wednesday, June 2, 2010

What's been going on...

OK, so now that all the "big events" are out of the way.  I want to let you guys know all the little stuff that's been going on with the little King.

The weekend of my sister's wedding I started Tripp on a new formula (Peptamen Jr.).  I know, how stupid was that?  Anyway, I started it on Friday morning... then Saturday night he started having some black tarry stools and I noticed a little bit of blood in it.  Which for him, is a HUGE deal.  Blood in his stool could mean a numerous amount of things.  So of course, I stopped the formula immediately.  I called the GI doctor (Dr. Serrano) on Monday (who I love, by the way.  As far as Tripp is concerned... she's almost as protective as me!)  She's the only pediatric GI doctor at Ochsner, so it takes FOREVER to get in to see her, but when she heard the word "blood," we got in that week.

Dr. Serrano switched him back to the Pedisure (which I had tried before with no problems, but they thought the Peptamen would be easier on his belly).  And she told me if I ever saw any "decent" amount of blood in his stool to take him directly to the ER.  She said with him, blood in his stool could be something to really worry about.  If he has an ulcer in his stomach, like on his skin, it could get so deep that it hits an artery in his tummy and he could bleed A LOT.  Or it could be from something in his intestinal tract.  That's why we need to be careful what we are feeding him... because no one knows how his intestines look, or how well they are working.  And she said she surely does NOT want to take a look "just because" and I agree.

I had started trying "blended foods" for a while.  But I was unsure of exactly how many calories he was getting or if he was getting all the "nutrients" he needed.  By "blended foods" I mean I was blending baby foods with real food, such as bananas, steamed carrots, whole milk, fruit juices, healthy oils.  I read about it here if you want to check it out.  He did well with it and one day I might go back to the blended foods, but right now Tripp hasn't really been gaining much weight.  I don't think he is losing... but he's just staying about the same.  And that worries me a little.  So right now I am going to stick with the Pediasure.  It's higher calorie than the Enfamil we were using before.  And a few times a day, I will give him about an ounce of baby food through his tube in addition to the formula, just for a little extra calories.  Right now he is getting 4 ounces every 3 hours and then 8 ounces by feeding pump at night.  Plus water flushes after feedings.  And he's been tolerating it pretty well.  Other than an occasional belly ache.

We are still trying to feed him by mouth almost every time he eats.  Sometimes he will shake his head (which is really cute, because he shakes his head "yes" instead of "no."  He's still learning :) Then, sometimes he will take about 3-4 bites.  But that's usually it.

As far as his eyes... he still has both contacts in (fingers crossed!) And except for the little piece of skin that is fusing to his eye in the corner (which I have no idea what we are going to do about) his eyes are doing really well... I can't believe I even wrote that.  PLEASE pray that they can stay this way!  They still bother him from time to time, but altogether they are doing okay. We go back in the middle of June to switch them out... And I'm not leaving the eye doctor without 2 contacts in his eyes this time!!! (I know, I sound tough, huh?) I'm getting there.

Little Man has such a mind of his own these days.  He has so many toys that it's almost a sin.. really.  There are two big red buckets full of toys and he will reach for something (and because he can't get around to get it) we will pick something out and hand it to him.  If that's not what he wants, he opens his mouth and makes a crying noise through the trach.  He will throw each toy on the floor until we pick the one he wants.  See? 

Honestly, it's precious.  We will see how long it lasts :)  He is so much fun.  And SO smart.  He listens and watches so intently at everything we say and do.  And he picks up very fast!  He amazes me more and more every day.  He is laughing, clapping, stomping his feet, nodding yes and no, waving by-bye, rolling those eyes, and pretty much trying to do anything we teach him!

Tripp is still getting Occupational therapy right now.  But we are in the process of getting Physical therapy and Speech therapy in too.  He's getting a little stronger, but really needs to be working his leg muscles some more.  (He's getting awfully heavy to lug around).  I'm not saying I want my little baby boy to start walking tomorrow, but we need to get on the ball if I want him walking by the time he is TWO!

SO, we are in the process of glassing-in our front porch so that Tripp can at least remember what "outside" looks like!  He hasn't been outside (other than to and from the car) in over a month, now.  It's really so sad.  He loves it outside and holds his hands up to the door... like "Please take me!!"  So we took the railings down and put up windows.  It's not finished yet.  But we will have an air condition and put in a nice floor, where he can sit with his toys and still see outside.  He used to love to watch the school buses and cars and all the kids playing in the street (that sounds bad, I know... but there are always kids in the street here).  And I can't wait for him to be able to watch all of that again.  Here it is...

I bought him a mini-swimming pool and 100 balls from Wal-Mart last week.  And O my goodness, he loves it.  He's so funny kicking his feet in there.  And he's so funny to watch with the balls.  He only likes the red balls... and occasionally a blue or green.  But not yellow... I don't know why.  And he's learning how to throw them let them go.  AND... he won't hold two balls of the same color.  He looks at them in both hands, and if they are the same color, he drops one and picks up a different color... but not yellow. ha.

A nice woman e-mailed me a few weeks ago and asked if I would video or take pictures of  the "bathtime" process.  I'm still debating.  It would be hard to video because I wouldn't want to "publish" all of the pain and cying in the tub (or his little weenie, for that matter).  But I will think of some way to try and show you what the little man goes through every other day.  My aunt that took the pictures at his party offered to come and take some pictures of bath.  So we will see... I'm working on it.  There's still no way to show you what he "actually" goes through, unless you are here.  So anyone feel free to sign up to be the "3rd person/entertainer" during bath time... haha.

Ok, so that pretty much sums up what we've been up to, I think.  Now for some pictures.

King of the Royal Sonesta.

Tough guys.

"BUT MOM! How do I choose???"

"OK, enough already, Mom!"
Busted, buddy!


Tuesday, June 1, 2010

Brittany's Wedding

So, my sister got married last weekend!!  It was absolutely beautiful... 
I thought I would share the pictures with you.  It was in New Orleans. The rehearsal dinner was at Broussard's on Conti Friday night and then the wedding was at the Elms Mansion on St. Charles Ave.  We stayed at the Royal Sonesta on Bourbon both nights.  Tripp was a complete angel.  It was a great time.  Randy's mom (MeMe) and Paw Paw Carey watched him for us Friday night for the Rehearsal Dinner, and then kept him inside during the wedding for us and let us have a good time... I am forever grateful to them for that!  A fun night was looooong overdue.  So, here they are. 

Friday night Rehearsal Dinner.
My Sis and new Bro-in-law

Mom, Britt, Me

Britt's new fam...

Randy and I.

The cousins.

My last night to hang with my "single sister"

Getting ready the day of.
Tripp was such a good boy!
Looooved the attention!

And the wedding...

Randy and Meme watching with Tripp from inside...

And..... The KING.

Hope you enjoyed!