Friday, October 1, 2010

Dr. appointments

Phew.  I'm finally get to sit, drink my coffee, and blog (my stress relief).  Yesterday morning I was so crazy busy that I didn't get my coffee... and that always leads to a big fat headache.  So this morning, I think I'll have two cups.  The mornings are usually the only time I have to sit and blog- while sleepy head catches up from pooping all through the night.  And don't even get me started on my soap operas- if I miss those, you probably shouldn't talk to me the rest of the day:)  

Yesterday was rough for the little man.  First we went to the dentist- yes we had to pin him down while he was hysterical, but it was only for a minute, if that.  So it wasn't that bad.  She suggested that we pull his front 8 teeth (4 top and 4 bottom).  I don't want to do that.  I was SO happy when I cancelled surgery last time and decided not to pull them.  I LOVE his little teeth- and no, I just don't want to keep them in because I love them... I think if we pull his teeth, it will cause more problems because then he will have tissue (probably raw, unhealed tissue)... and when he knaws on his "binkie blanket," he's just going to re-open or blister that tissue anyway.  And I will absolutely NOT take away his "binkie blankets"- those are the only means of consoling him.  Anyway, she also said she could cap them with little silver caps.  Of course, I do not want my son's teeth to all be silver... but I'm only working with so many options here.  The problem is that she doesn't even know if the caps will help all the sores or not... it will just be trial and error- like EVERYTHING else.  

So next, he got blood work drawn.  Dr. Defusco called the hemotology nurse who drew his blood last time- she is amazing... and the nurse, Michelle, actually called me and gave me her direct hospital phone to call her when I got to the hospital so she could meet us and draw his blood (So we didn't have to go back and forth from the hospital to the clinic).  People are just really sweet.  Anyway, we called and she took us right in.  It was a little traumatic.  I stood up and held Tripp in my arms but had to hold him really tight and really still while he's struggling to break away.  He was ticked, sweating, and SO OVER me.  But she got the blood (needed another CBC to check and make sure his platelets didn't go up any more). And his platelets went down!! From 950 to about 840.  They're still high, but at least dropping.  

Next was the eyes.  Grrrrr..... I will keep this short to keep my blood pressure down.  Dr. Shah was actually really nice and agreed with me this time.  He thinks that this "symblepharon ring" we put in is just irritating him.  Duh.  Here was the killer.  He says, "Yeah every single one of my adult patients hate that thing- almost all of them want it taken out because they can't stand it."  Ok, fair enough.  That statement may or may not have changed my mind about putting it in, but at least could have been shared before the surgery.  Anyway... we will take him into the OR- AGAIN- to get it taken out and get just a contact back in again.  SIGH.  Except this time I will bring my bleach put it on everything and everyone that touches Tripp... just kidding.  But I PRAY he doesn't catch something again.  The bad part is that Dr. Shah is only in the OR on Wed, Thurs, and Fri.  And he wants me to schedule something with the dentist and then he will just slip in, take the ring out, and put a contact in.  So that will have to wait until at least next week.  So little man has to suffer another whole week with this stupid thing in his eye.... ahhhhhh. Blood pressure, right. 

And LAST, we had to go see Dr. Defusco for his shots :(  He got his MMR and Varicella, and then his Flu shot.  Abby (the awesome nurse that always has to give Tripp his shots- poor Abby) said these really burn.  They were both subcutaneous, so he was able to get him in his arms and not his legs.  And she also gave the Flu in his arm.  So he got a break from that big ole' bruise that's still on his thigh.  He was beyond ticked at this point.  He wanted my mom to hold him the entire day, so her poor back was about to break! Of course, Mommy is always the bad guy on doctor days because I have to hold him down.  But that's okay.  One day he'll love me :)  Other than that, we had a great visit with Dr. Defusco as always.  I know you're tired of hearing me talk about how great she is... but seriously she's great.  I can't see any other pediatrician going out of their way and doing so much research for Tripp like she does.  

So, Tripp didn't even sleep on the way home... I think he was so mad at us that he wanted to keep his eyes on us in case we were gonna hold him down or poke him again.  Poor baby.  And get this- yesterday was BATH day, too.  So I had gotten everything ready and set up yesterday morning before we left because I knew we would be worn out and that would be one less thing to be done.  It actually wasn't as bad as I expected.  I gave him some Tylenol with Codeine.  But his new thing since he's been sick is that he won't sit up for bath AT ALL.  If we try and sit him up to do his back or arms- he throws himself back and starts kicking- so you lay him back down and he starts smiling- He's got us right where he wants us, no doubt.  Little squirt.  But it's okay... it's our fault, we've created the little monster.  

Well, that was our day... no super great news, but at least I know we can take that ring out of his eye and decide on what I want to do with his poor swollen mouth.  Thank you all again for your sweet, sweet comments.  I smile, cry and laugh when reading them... it's what I look forward to.  And each one I read gives me a little "boost."  Thanks :)



Love,
Photobucket

35 comments:

  1. Praying for you and your son!

    http://youcanfacetodaybecausehelives.blogspot.com/

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  2. Oh my gosh, what a day! I bet you were sweating right along with Tripp! That would make me really mad too to have not heard the whole eye thing ahead of surgery. Gee whiz doc! Hope it comes out a lot easier than the whole going in procedure and aftermath! Hope he feels better today. And go for 3 cups of coffee, you so earned them!

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  3. Courtney, Julie had to have some dental work done when she was 22 months old. Her four front top teeth are porcelain caps. So the front is white, the back is silver. I wonder if that would be an option for Tripp. I understand not wanting him to have a mouth full of silver teeth. That is why we went with the porcelain. They are more expensive, but worth the money. Still praying and loving that little fella!

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  4. Loved the pic today. You are a beautiful girl and your husband is extremely handsome! That's why Tripp is such a gorgeous baby. I wish Tripp didn't have to go one more minute suffering with his eye. Bless his baby heart! Please keep the updates coming...I don't rest until I know how Tripp is doing! I think it's sweet that Tripp wanted your Mom to hold him...I'm a grandma of a 2 yr old and I can tell you that we grandmas LOVE it when our grandbabies want us to hold them...no matter how bad our back hurts :)

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  5. Courtney - you are beautiful inside and out. I love the pic of you and Tripp. He's a sweetie. I, like you, am amazed at how he manages to smile every day. Praying some relief for Tripp.

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  6. Courtney, for some reason your journey has really been on my heart more than normal this week. I think of you every day anyway, but the past couple of weeks I've just been reminded of you so many times each day. Know that you are on so many hearts, and that we all love you, Tripp and your whole family!

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  7. Oh I can't imagine the stress of all of those appointments and decisions. Sending you lots of hugs!!

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  8. Glad you got threw them all. I was a little stressed just thinking about it from your last post, so I cannot imagine living through it. You are such a beautiful amazing mommy and I am so glad Tripp was given to such a wonderful person. Your momma seems like an angel too. Hope he starts feeling better and I hope that stupid contact gets out quick and painless and his eye starts to heal. Have a good weekend..xo :)

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  9. Praying, praying. I hope we can talk soon. I know how hard it is to actually be able to answer the phone when it rings. I wish I could come do "all things Tripp" and give you a break for a day, but I know I'd have to force you out the door against your will. Believe me, I know. It's definitely a co-dependent relationship, having a special needs babe. Call me if you need/want to chat. LOVE YOU GUYS SO MUCH!

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  10. Praying for you all. I have been following your blog for awhile. Tripp is so lucky to have you as his Mommy. I hope and pray that things get better soon.

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  11. I believe I have told you this before...I do not know HOW you do it. Obviously out of pure love and compassion. Tripp is soo incredibly lucky to have a mom like you to love support and raise him through all his struggles. You are an incredible person. I know I hate when people tell me I am an incredible person because my daughter died...but I just do know of any other word to describe you! I know your daily struggles with Tripp (only because I read of them) but I am always here cheering you and your family on!

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  12. Praying for you and Tripp as always. I pray he is protected from all the 'could happens' during the next few weeks and procedures. I am, though, admittedly very shocked that your pediatrician would give him the flu shot when he's been feeling bad...

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  13. Hoping things for you guys improves in the next few days and weeks to come. I cannot imagine what that little one has to deal with and is so sweet and has such a big personality despite his troubles. I think of Tripp every time I see anything Mickey Mouse (on the Mad Men episode, the packages at the party store, etc.) Thinking of you!
    TF

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  14. Courtney,
    Glad Tripp made it through all of his appointments. Thanks for the picture. You are beautiful and "the little knight" is just adorable. I'm sure you're dreading another surgery but if it takes some of Tripp's pain away it will be worth it. I'm so glad they will removing that ring from his eye.
    I'll be saying some extra prayers that everything goes well next week. Thanks sooo much for all of your recent posts.

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  15. Courtney:

    You looked great in the last photo -as you readers have said. Pretty amazing-considering all you have been through (let alone since the surgery). The day you had sounds exhausting- just reading about it. I can see why you bundle all the visits together (easier just to get it over with).

    It's nice that Tripp's platelet count went down- in the right direction. I hope he is getting some relief. Since he just got shots, don't get discouraged if he seems low tomorrow (also he is probably more tired from today).

    I wanted to tell you that my son reacted to the MMR shot -with a fever- 7 days later (apparently a common reaction time for that shot). I bring it to your attention not to bring any concern to you, but just in case (so you are aware- as I know fevers are more concerning for an EB baby). I hope you understand why I am bringing it up.

    I am so glad your Mom seems like such a rock too (it looks like you caught that from her). I can only imagine what a support she is for you and Tripp. You are both amazing women.

    I hope Tripp sleeps well and shows some "muscles" tomorrow. Praying for Tripp always :)

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  16. Praying Praying Praying for the beautiful Tripp and his beautiful mama! Found you in blog land but Tripp and your family have stolen my heart. I pray that the blessed mother will keep and guide you as she knows the pain of having to watch her only son suffer.

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  17. Hi Courtney - so sorry it was rough for sweet Tripp yesterday. What is it about doctors that they just can't tell you EVERYTHING you need to know up front?! Hopefully taking out the ring will make his eye feel better. Praying that he starts perking up quickly and giving those fabulous squinchy smiles soon!

    And praying for you to have rest and peace.

    Love from TX,
    Laura

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  18. you're an amazing mom, courtney.

    i'm so glad that ring is coming out of tripp's eye! i hope he gets some relief soon.

    -steph

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  19. You are still the most AMAZING mommy and rest asure....Tripp LOVES you!!! That is a beautiful pic of you with Tripp! And I love the way that your smile NEVER looks fake, tired, or frustrated. Your love for Tripp shows in that smile, and it melts my heart! Tripp is so blessed to have you for a mother!!! And I'm just going to keep reminding you of that!! LOVE LOVE LOVE you all sooo much!!!!
    Shelly

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  20. I wish I had your strength...you are are really great momma!

    Allison, NJ

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  21. Hi Courtney,

    Since I started reading your blog you and Tripp have changed my life! I never take for granted one minute of the day! And I Thank You so Much for that! It is Mothers like you with your Honesty, Strength and Courage that is truly Amazing! You and Tripp are both the TRUE meaning of Heros!

    I Love that lil guy so much! It's no wonder you look Gorgeous in the picture with him! You can tell he just lights up your life! :)

    Love and BIG Prayers
    Heather

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  22. What a CRAZY DAY!!! Poor little guy! I could not have done all that without a nervous break down! You're such a good Mommy! You guys are a family full of champs! I hope Tripp has a calmer day tomorrow, full of smiles!

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  23. Boost boost boost! Here is your boost! Totally understand about coffee. It certainly makes everyone in the hospital function. # mugs a day keeps me from passing out before bedtime. Sorry to hear about the futility with the eye doc. Grr.... Hang in there! You are an AMAZING MOMMY and Tripp is SOOOO LUCKY to have you for his mommy, and Randy for his daddy. Much love to y'all.
    Tim

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  24. What a cute, cute picture!! Just precious! Love just radiates from both of you!! Courtney, your mom must be so very proud of you! My grandson has OI and I am amazed at my daughters strength~ to accept what she can't change and just take things one day at a time! You are both strong, young women, who are such inspiration for those around you! Honestly... it amazes me!

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  25. You look so beautiful in the picture like everyone above said and I love the way you dress Tripp ! Poor little thing, he is so brave to go through all of those things and I love the way you take care of him. Oh and I wanted to add that my little Moesha has the 1 year shots on Wednesday (I waited 3 more months before doing them) so we're scared a lot although she doesn't even have EB. Hopefully she will do just fine. I also know there is often a reaction few days after.

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  26. Just wanted to leave a comment and tell you that I am praying for you and Tripp. He is such a precious little boy! I am asking God for a miracle for Tripp and Jonah! God does His best work in "impossible" situations! He is the great way maker! Isaiah 43:18,19 I am so excited to hear about the great things God is going to do for Tripp! Expect a miracle! Sending love...

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  27. Oh man, poor little guy and poor mommy. Sounds like a very rough day for both. I am praying for you guys, your courage and strength amaze me. Glad sweet little Tripp has that gene too. Prayers!

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  28. I'm so glad the day went as well as a doctor day can go. I will continue praying for Tripp. I'm glad his platelets went down. Get some rest this weekend, and maybe he'll be his smily self again by next week.

    Shannon

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  29. Courtney,
    You are an AWESOME MOM!!! I pray for Tripp and your family daily!


    Becky (Texas)

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  30. Poor sweet babycakes. I get that he was ticked at you, what baby is not ticked at the parent who holds them down for those dreaded shots. Tripp has been thru the ringer so many times and will be again soon. I will be really good to see his sweet smile again. Praying for his eyes to not bother him so much until he can get that ring out. Praying for Tripp always and praying for mommy and daddy too,

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  31. Wow, came across your blog by chance really! You inspire me! I have three kids, my youngest has Down Syndrome. I am also a nurse and about 5 years ago I took care of a young lady with EB. I loved her! I would stay late for work on many occasions to take her up to the maternity ward and help her bath. She was so sweet, yet so fragile! We had many great laughs together and I think about her often. Your love for your son is obvious and beautiful!

    Come visit me at loco-in-the-coconut.blogspot.com

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  32. Courtney, you are an inspiration. I can't imagine how hard each day much be for you. As a mom of a healthy child, I am aware that I can never have a bad day. You, Tripp, and your family are in my prayers.

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  33. I am so sorry to say that I have taken so much for granted with my own children. Your wishes for Tripp are so simple, and I have these things and don't realise my blessings. Thank you beautiful boy for making me realise this. I am sending you and your mummy and daddy a huge smooshie kiss.

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  34. Hoping things are going better since the doctor appointments. You look so beautiful as does Tripp in the pic you posted. Love from Maryland for Tripp and your family!

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  35. Hey Court! We are praying BIG Prayers for Tripp, you, and Randy! We love and miss you guys!

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