My Big Day

Dear Diary,

Turns out today was a pretty big deal.  Which kind of makes sense since Mom has been a bit "on edge" lately, if you know what I mean...  She went on a cleaning frenzy this weekend (nervous energy) and I'm pretty sure I saw tears in her eyes when she was kissing Maddie good night on Saturday night.  Speaking of Madison - I miss her.  We dropped her off at some friend's house last night (Sunday) so she could stay there and play with them until Mum-Mum gets in town on Tuesday.  She got really excited when we got to their house and started to clap and say "yay" so I know she's having fun but it's still kind of weird not to hear her giggling or have her give me kisses.

Dad woke me up at 5:55am today and stuck that long skinny tube down my nose to suction me out.  Worst alarm clock ever.  Then I did my nebulizer treatement and we were in the car by 6:15 heading to the hospital.  I don't remember a whole lot after that...  I was starting to get pretty cranky but then a nice lady took me out of Mom's arms (more tears and kisses from her, btw.  Women.) And then I fell asleep.

Apparently, a lot happened while I was asleep.  Here's the list:
1) LADD's procedure - This was kind of unexpected but not totally.  My surgeon had been restudying all my tests and thought that maybe, just maybe my small intestines were malrotated.  He cut me open a little extra to get a look and it turns out it's a good thing he did because he was right - they were slightly malrotated so he took out my appendix and stretched out my small intestines to keep them from kinking up on the inside.  

2) Pyloropasty - Finally!  This darn pylorus has had the upper hand since early November but no more!  A pyloroplasty was the "best case scenario" procedure to fix it because it was the least invasive option.  The Dr. and my parents seemed pretty excited that it was able to be done so well.

3) A permanent feeding tube (G-tube) was put in.  This will really help my system get used to processing food in my stomach again.  The past few months, the feeding tube down my nose (NJ) has been just skipping my stomach and dropping the food past my pylorus.  Now that the pylorus area is fixed, I get to start having food put into my stomach and then going through the pylorus like it's supposed to.  Once all the adults are convinced food can pass through my stomach safely, I'll get to start trying to take more and more by bottle if my swallowing is ok.  I haven't done very much swallowing since February 3rd so I am a little nervous about that but I'm trying just to take one thing at a time!  Besides, they have therapists to help with swallowing and stuff...

4) I got tubes put in my ears.  Lots of kids have this done!  Most of my cousins and all people with Apert's so this was no surprise.  It should help me hear better so maybe I can start trying to make some new sounds soon!

5) Manicure.  I don't know what the hype is all about.  Madison gets really excited because people paint colors on her nails.  For me, a manicure just means a plastic surgeon trims my nails and cuts away some of the extra tissue around my nails to help keep me from having an infection from an ingrown finger nail.  Once my fingers start getting separated that won't be a big deal but until then trying to keep my fingernails trimmed is more than a little tricky.  Poor Mom.  Madison says she thinks Mom has been getting some grey hairs the past few months - I think my nails must stress her out.  Can't imagine what else it could be...

For now, I am back in the PICU, hooked back up to a ventilator because I was just having a little trouble breathing well after surgery.  I dunno...  It was just a long time to be under anestesia and I was kind of tired so I figured, what the heck.  Let the machine do the breathing for me for a little while so I can catch some zzzzz's.  I'm closing my eyes and staying really still so everyone will think I'm completely sedated but I heard the doctor say the hope is to have me off the vent by tomorrow or the next day.  We'll see.  Haven't they learned yet that I like to call the shots? :)  The plus side of being off the vent is that Mom and Dad could hold me soooooo... maybe I will go for it??

I know A LOT of people have been praying and sending well wishes to Mom and Dad today.  You can tell it means so much to them.  Sounds like there are lots of people who really love my family - I  feel so blessed to be cared for by so many people - most of whom I have never even gotten to meet yet.  Dad and Mom have been doing a lot of praying too.  I know they love me so much and I'm starting to get the idea that so many unknowns must be hard on parents...

Psalm 9 says, "those who know your name put their trust in you, for you, O Lord, have not forsaken those who seek you."  I don't really know much about God yet but my Mom and Dad sure do seem to know him and they keep telling me he is trustworthy and faithful and to remember that no matter what.  They say that they trust him with everything, even me and Madison, even on days like today when it's just plain hard. 

Speaking of hard... writing this update has been a lot of work so I'm out for now.
~Nathan
P.S. Yesterday was my 6 month birthday!  Go me!

Comments

  1. MarniApril 21, 2014 at 6:07 PM

    LOVE this post :) Way to go, Nathan! Great news about the surgeries (wow!) and still lots to pray for, so we'll keep those prayers coming! Love you all

    ReplyDelete
  2. Caroline @ In Due TimeApril 21, 2014 at 6:09 PM

    Thanks for updating us!!! Happy 6 months sweet Nathtan!

    ReplyDelete
  3. Dave SmaleyApril 21, 2014 at 6:29 PM

    Thank you Jen for being brave enough to share Nathan's story! All of you are in our prayers daily!

    ReplyDelete
  4. UnknownApril 21, 2014 at 8:06 PM

    How you write all of this is unbelievable. Thank you so much for sharing each procedure and step. Continued prayers for all of you. Tell "mum mum" hello and how we miss them all. Wish we could meet you sometime. Hugs to each of the family.

    ReplyDelete
  5. DeeApril 21, 2014 at 8:43 PM

    Go Nathan! One step at a time little man! We love you <3

    ReplyDelete
  6. UnknownApril 23, 2014 at 9:14 PM

    Wow, Nathan. . . I understand a little bit more about what you, your loving parents, your sister, and your fantastic grandparents have been talking about! Sending all of our love to you and all of them them. . . and praying for each miraculous step in your healing and progress. Colette and Craig Crandall

    ReplyDelete
  7. LindaApril 24, 2014 at 9:21 PM

    I love this post! What a creative way to let us know what's going on and doing it from Nathan's perspective made me smile. My prayers are with you and your family every day.

    ReplyDelete

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