Tuesday, February 14, 2017

3 weeks post op!

I have been meaning to update this for weeks!  I haven't had time because Lincoln is feeling SO great that it is a full time job trying to keep him entertained.  If I had a dollar for every time I have told him to stop running or to be careful I am fairly confident I could buy all of you a brand new car!  

Last week, however, we had a scare and spent about 6 hours in the emergency room.  Lincoln woke up with a fever and later on in the day he finally got out of bed and told me I should be careful not to touch these bumps on the side of his head.  So, of course, I freak out a little.  As I am looking at his head I notice that the right side of his forehead is sticking out.  From a bird's eye view his head was definitely lop sided.  I called the Dr. and they wanted us to get to the hospital ASAP.  Thank goodness Auntie Kaitlin was here to stay with Little Miss V!  The poor kid was so upset that we brought him back to the hospital.  He was crying and asking us why we would ever bring him back there.  He wanted a drink for about 2 hours but they wouldn't let him have anything because they were afraid he was going to be going back into surgery.  It was AWFUL.  I can't sugar coat it!  I have never prayed so hard in my entire life!!  They attempted to put an IV in his right arm but he was screaming so hard that it didn't work.  We finally got him calmed down enough for her to get one started in the other arm.  They sent some blood down the lab and sent us off to CT.  He had to get contrast through his IV and he was being a total champ going through the scanner until he got nauseous from the contrast.  He was sweating and dry heaving and once again asking why we brought him back and how it wasn't fair.  :(   :(   :(  I knew we were doing the right thing but I couldn't blame him for losing his shit (there is no other term that will do, haha)!! He was saying what Logan and I were both feeling too.  Finally, we got the good news that his head was healing just as it should.  The Dr. seemed to think that he probably laid on his right side in the bed all day and all the swelling just went to that side and was making it look like it had changed shape.  But we could see in the CT that his skull looked totally normal.  He must have just caught a virus at his two week post op appointment and the next day he was pretty much back to normal.  I felt so dumb for bringing him in and putting him through all of that but they reassured us that we did the right thing.  You don't wanna mess around with an infection.  

Since then, it has been smooth sailing.  KNOCK ON WOOD.  We have been super careful about guests coming over because he just can't get sick again right now.  We haven't left our house until today and it was just a quick trip to get Violet some new birthday shoes.  Our friends here have been absolutely amazing.  We have had someone bring us dinner almost every night.  It has been so nice to spend the extra time with Lincoln during the day.  He has definitely had a hard time not going outside and playing with the neighbor kids.  So instead of worrying about cooking dinner I am able to spend that time keeping him entertained.  It is so hard to accept help sometimes but I am looking forward to returning the favor to them all!  Initially we were going to use his own rib and I think the recovery would have been a lot harder. We have been pleasantly surprised with how well he is doing at just 3 weeks.  We have our next appointment May 1st.  Until then....wait for it......no running, no playing outside with friends,  no recess, no bike helmets (so no riding bikes), no playgrounds, no sports, basically nothing a 5 year old boy really wants to do!!! It is all for his safety though.  We will plan to have a fun summer FOR SURE!!  So if you see me this spring and you think I have gone a little crazy its probably because I have.  If your kids like quiet play dates with no running and they aren't sick, hit me up!  ;)  I think we will send him back to his preschool in a couple weeks..... unless everyone and their dog still has the flu.  So once again, thank you for all the prayers!!  If you want to keep them coming until we get the thumbs up in May it would mean the world to us.  HAPPY VALENTINE'S DAY!!! Also, happy 2nd bday to the best little sister in the world, Violet Raye!  She sure loves her brother more than anything.

Friday, January 27, 2017

Day 3 post op

Lincoln finally got a full night of sleep last night!  He slept through the nurses checking his vitals 3 times (including shining a flashlight in his eyes) and also slept through the plastic surgery team turning on all the lights and checking out his incision at 6am.  He was OUT!  I am not surprised.  He had to be exhausted!  I have accepted the fact that Logan and I won't be sleeping until we get home.  It is amazing the difference in Lincoln since we have just been giving Tylenol.  He is acting like himself and acting like nothing even happened.  Crazy!!  See ya later, oxycodone.  Never again!  

While Lincoln was in surgery we noticed a teenager, who had the same scar as Lincoln, checking in.  I assumed that he was also a patient of Dr. Kelly's but didn't want to ask at the time.  Kaitlin and I noticed that he had a pretty girl by his side and Kaitlin said, "See, Lincoln won't have any problem getting girls!"  Chicks love scars, right?!  So fast forward to today and we saw him down on the second floor with his parents.  I asked if he was a patient of Dr. Kelly's and he said yes.  It turns out he is 17 and this is his third surgery.  His name is Noah and he actually goes to high school right by our house. He is so handsome and sweet and it was so nice to get his perspective of the surgeries.  He said it's hard to explain the feeling after surgery.  He said it's not really painful, more of a heavy sensation.  We talked about why he had to have his third surgery and my heart just hurt for them!  Definitely not fair anyone would have to go through three of these surgeries, or for the parents to watch their child go through them.  But you can tell there is something special about Noah and his parents.  It seems they really focus on the positive side of things instead of dwelling on the negative.  They definitely get what it's like to be where we are right now and how nerve racking it is.  There is no right decision when it comes to deciding between a bone graft or using something artificial.  You just have to go with your gut and hope for the best because neither option is a sure thing.  His mom told me she thought we did the right thing by using the man made material.  I can't tell you how much I needed to hear that.  Although I have felt like we did the right thing, you can't help but wonder if you really did.  Noah is an honor student and I am pretty sure they said he got a 30 on his ACT.  Sooooo, yeah.... take that craniosynostosis!!!  Watching him give Lincoln a fist bump about had me in a puddle of tears on the floor.  It was a really cool moment and I think we may try to get together for lunch sometime when both of their hair has grown back!  I think God wanted us to meet this family.  Here are Lincoln and Noah together: 

Most days, our kids are learning from us.  Whether we like it or not, they are watching our every move and taking mental notes.  They're learning how to treat other people, how to interact with other people, how to handle themselves in certain situations, how to rip open that bag of dove chocolates when they've had a bad day ...... Hey, don't laugh, that is a valuable lesson I have taught my kids!!  Logan loves me for it.  But seriously, the last few days I think we have been learning from Lincoln.  He is normally the kid who HATES any sort of scrape, cut, splinter, bug bite..  I mean, he freaks out.  If he gets a tiny scrape on his knee, he won't walk for a day.  But slice his head open and he doesn't really miss a beat.  Send him into a scary operating room and he goes with a smile.  Aside from the first night meltdown, he hasn't complained once.  He has shown us that just when you think something is going to be really terrible, you can turn it into something good.  He has been nothing but a big ball of sunshine today.  He brings us so much happiness. We truly are so lucky and thankful that you have all been praying for him.  The prayers are definitely being answered!!!!  We're going to bed tonight with happy hearts.  Here are a few pics from day 3!

Face time with Dyl & Syd!

 Stuffed animals from the sweet Kennard family!

 Giant balloon and candy from the Bailey's!!

 Say cheese if you're ready to go home!

 Sibling snuggles can cure anything!
 Best buds.  She can't wait for him to come home!

 They're getting married!! Their kids are gonna be so cute, don't ya think?!  ;)

 My sweetie. 

 Dumb & Dumber

 "Dad, I love you more than a whole box of Jell-o."

Yo Ryan, where you at?!

Eating cookies that Tam Tam & Gaylord sent us from Roseanne's!  (Ben's family)
 Lucky Grandma!

Thursday, January 26, 2017

Post op day 2

We had such a great day!!! We decided to try just giving him tylenol instead of oxycodone and that seems to have really helped him.  The oxy just had him acting like a completely different person.  Last night he woke up and was having a bad dream.  He was just thrashing all around in the bed and tried to pull the strips off of his incision.  Then the incision started bleeding and of course that was painful.  It took us a while to wake him up and get him calmed down.  After that, he didn't want me to leave his bed so I "slept" on a sliver of the bed with an IV tube draped over my face.  Ha!  I am really hoping tonight is our night to get some rest.  The doctor came in and looked at the incision today and doesn't think he did any damage to it.  Thank GOD.  Hopefully now that he isn't taking the oxy he won't have any crazy dreams!! His swelling has definitely increased but it is still nothing compared to last time.  Little Violet has been so sweet to Lincoln.  She just can't get enough hugs and kisses from him.  I mean who can blame her?!  He is the best big brother.  

We had lots of company today.  Lara and Charly stopped by on their lunch break to check out Lincoln's new haircut.  I think Charly was jealous.  ;) Then Sullivan, Lincoln's first little friend in Nashville, and her hot mom came to visit!   We were also lucky enough to get to see the Olson family and crazy Will!  I wish someone had a video of us playing BINGO.  It was a tad stressful but we had some big winners!  Seeing these kids has really helped lift Lincoln's spirits.  Also, I am not sure what we would do without my parents being here and taking care of Violet.  That is no small job!  We owe them each one pony.  Kaitlin has also devoted her whole week to being here and helping us at the hospital.  It seriously does take a village!

We just finished up our nightly ice cream run and are getting ready to give Lincoln his first bath since the surgery.  Kaitlin and I also just sucked some helium and sang some Meghan Trainor.  Gotta support those BYD artists.  ;) Lincoln thinks we are pretty dang cool!  Thank you again for all your prayers.  Hoping we get out of here on Sunday!!!

                            Auntie Kaitlin & Dad taking him down to the game room!
                                            She has been very worried about him!
                                          I hope they always love each other this much.
                                                    Fun times with Sullie Bug

                                                              Bingo prizes!
                                                        Playing with Will!
Took a bath, brushed teeth and feeling crazy!

Wednesday, January 25, 2017

Day 1 post op

So......we're only one day post op but it feels like the surgery was days ago!  Today was just okay.  Lincoln is still improving better than we had hoped but he is just struggling a little.  I think he is maxed out on people messing with him.  They had to wake him up every hour last night and he wasn't feeling well anyways so that made for a moody 5 year old today.  He was just not acting like himself and at one point he was crying and saying that this just wasn't fair.  Normally, saying something is not fair doesn't go over very well at our house.  That is just a phrase that irritates me.  But today, I had to agree with him.  It isn't fair.  It isn't fair that he is having to go through all of this again.  Sometimes you just need to let a good cry out and let yourself be sad.  I think that's what he needed to do today.  

His preK teacher, Ms. Chris, came and brought him an abundant amount of toys and games to play.  She also brought cards that every kid in his class colored for him.  It was so cute!!!  We were then surprised to see Lincoln's old baseball coach and his family at the door.  They brought Lincoln's baseball trophy (that I hadn't picked up from them yet.. #momfail).  We have just been so lucky to meet the sweetest people through our kids.  

They decided to take his drain out today.  He was freaking out a little about it but ended up not making a sound when they pulled it out.  He is just the bravest boy.  I am so proud of him!  It may have helped that his BFF Rocco and Sunny were standing outside the door waiting to play.  We made our way down to the game room and there were volunteers there to play with the kids.  Say what?!  I wonder how I get them to come to my house after a long day??!?!   I think Rocco and Sunny may want to come back and play every night now! Haha!  Seeing those two and getting out of the room was so good for him tonight.  (It was also good for us to see their parents...don't know what we would do without the Gore clan!!!)  He is now sound asleep and I am hoping he can get some rest tonight so he has a better day tomorrow.  It's so hard seeing him sad.  Once again, thank you for the love and prayers. 

       Lincoln got some pretty sweet balloons from our friends at Wiatr & Associates!
                                 The source of all the drama today: the dreaded drain!!!!!
                                                         Reunited with Queen V
                                                         She was a little curious.....
       Probably the sweetest PreK teacher. .Ms. Chris helping brighten Lincoln's day! :)
Heart eyes!
                          Rocco and Lincoln... they'd spend every day together if they could!
Uncle Ben, I see you!

                                               Getting up and walking for the first time.

My soul sister Sunny creating her village!!

Bandage be gone!

The bandage is off!  He looks so good compared to last time.  His eyes were so swollen last time that he couldn't even open them.  We will be moving to a regular room in an hour or so and the drain will come out tomorrow.  He was able to eat some oatmeal and drink some juice this morning.  Hoping this helps give him some energy so he can start to walk around soon.  

Night 1

Poor Lincoln didn't have the best night last night.  His belly was hurting, he had over 200cc's in his bladder but couldn't pee, he wanted to go home and he just didn't understand why we let them do this to him.  He had been dry heaving and finally just vomited and I think that gave him some relief.  He also couldn't handle drinking anything else so we had to insert his medicine in a new place for him, that was interesting.  Today we are praying that he gets some relief and starts to feel better.  He woke up in good spirits and I am hoping last night was the worst of it.

It just doesn't seem fair that he has to experience all of this again.  I wish it were me or Logan in the bed instead of him.  Preferably Logan.  I already had 2 c sections. Haha.  He is one tough little guy though.  I think we will be moving out of the PICU soon and up to a regular room. This means our own bathroom and more than a few visitors at a time!  Also, he can finally see Violet!!!  He spent a solid 15 minutes crying for her last night.  In the middle of it all he yelled, "I just want to feel like Lincoln Mize again!"  Me too, buddy.

                    He thought putting on his own clothes would help him feel better.

         My friend Kristin got me this blanket and our friend Heather got this one for Lincoln.                                             Great minds think alike, ladies!  So special.

                 Morning snuggles with Dad.  It's a new day and its time to feel better!

Tuesday, January 24, 2017

POST OP!!!!!!

I feel like the biggest weight has been lifted from my shoulders right now.  If only hospitals had wine.  I could use a glass of alcohol.  ;) Just kidding, ok half kidding.   I think Logan and I were both dreading the whole "hey lets take our kid to the hospital and watch him be wheeled away to surgery" crappy feeling again. It's a real feeling and it sucks.   And honestly, today went more perfect than I could have imagined.  I don't think either of us slept much last night and I probably cried a gallon of tears between 5-7am this morning.   But somehow, today we got through it with flying colors.  We really have Lincoln to thank for that.  He made this day so easy on all of us.  

We met with Dr. Kelly as soon as he was done with surgery and he told us that it could not have gone any better.  He filled in the 3 soft spots, took out 4 wires (left in from the previous surgery, that had been bothering Lincoln) and smoothed out some bumps on his skull.  He did not need a blood transfusion in the operating room like he did last time and so far they don't think he will need one.  Dr. Kelly also is very optimistic that this will be his last surgery.  
When Lincoln first woke up he said, "Who are you people?"  Yeah, that sucked.  The tiny mom voice in the back of my head was like yep, his memory is gone.  He lost everything.  But then the reasonable human voice in my head had to talk the mom voice off the ledge.  This is basically a daily struggle.  I can't be the only mom who freaks out about everything!!  Anyways, he was very agitated and wanted to be left alone.  He ended up falling back asleep and then woke up his usual happy self.  He was trying to have conversations and keep his eyes open but he is just too sleepy.  He has been waking up every so often and is already ready to go home.  He just doesn't understand why he is feeling the way he does.  I think he is nauseous and ready to get all of these wires/lines off of him.  We expect him to have some more swelling but it shouldn't be any more than the last time.  We are hoping to just spend one night in the PICU and then tomorrow be moved to a regular room.

No other updates besides we are feeling like two lucky parents right now.  Nothing puts things into perspective like sitting in a pediatric surgery waiting room.  We have felt all the love, positive vibes and prayers from everyone and we are so thankful.   Here's to hoping that we can keep little guy comfortable and healthy in the coming days!

                                            Eating for the first time in 24 hours!