Push Me Over With A Feather

We are home! All is quiet...thank the heavens above :) Yesterday was a long day that has already been forgotten about on some fronts.

For example, I decided since Sloane wasn't able to eat after midnight, I would give her a treat on the ride up to Children's and unveil with a big surprise the dvd player in our SUV that has been under wraps for almost 2 years. Her eyes were as big as saucers when she saw it and loved watching a flick on the way up....I actually think mammie and titi liked it too! They were sandwiched on the sides of Sloane. But that has already been forgotten about. Sloane never mentioned it when we got in the truck today.  

Sloane also had not mentioned yesterday's events either which is fine by me! I have forgotten about the bag of chocolate covered almonds I ate to make myself feel better and the fact that I sang Sloane's favorite song to her during "mask holding" instead of something random. Not ideal!

Sloane's scopes went smoothly. Now, the results not expected. You could have pushed me over with a feather when Dr. Rahbar said...."There's a couple of things." Internally, I was screaming WHATTTTTTTTTTTTTT!! Externally, I was staring at the great doc with eyes as big as saucers. A couple of things??? Already? And Dr. Palm isn't even here. Weren't you supposed to have one thing and she had another??? I scanned the consult room and seemed that my hubby, poppie, mammie and titi all had the same intent look on their faces. All thinking what I was....I think....although 3 out of the 4 would never admit it. My hubby was on my page!!

Well, we've got....2 for Dr. Rahbar and one for Dr. Palm. Which means folks, we have 3 things going. 3 separate things. Just in time for the 3 Wise Men for Christmas!!!

1. Sloane's cleft needs a 2nd surgery/repair/tweak. Box it up however you want. Sloane's cleft is still to open for Dr. Rahbar's liking and in spite of her amazing progress, she will be having the 2nd repair of it in the Spring of 2014. Out of 150 cases, she will be the 4th that needs a 2nd repair. That is largely due to the fact, that Sloane's cleft was a level 2 almost 3. Pretty big in Cleft Land.

2. Sloane's airway is narrower than the average child of her age. Not a major issue because she will grow out of it, but a problem because once she has her NECESSARY 2nd repair and gets another stitch to close the cleft up...her airway will be even narrower until she grows out of it. A top concern for Dr. Rahbar

3. Her lungs are significantly inflamed. Dr. Palm took some secretions to check out. The thought is that she is mirco aspirating b/c her cleft is still too open and those mirco aspirations are causing the inflammation. We wont' know if that is the case until the results come back. Now, her lungs are as well junky and juicy from the common cold season.

The plan is....Sloane will be put on an oral steroid mist to clear up her lung function for the short term and maybe then the long term. We will see Dr. Palm at the end of January to access our progress and see Dr. Rahbar in February to plan for Sloane's 2nd cleft repair.

Number 2 and number 3 were not shocking...but I will say I was not at all prepared for number 1. I did think in my heart of hearts that we had moved beyond our Laryngeal Cleft because Sloane has progressed so well and has remained relatively healthy.

Today, we spent the day doing nothing! It was like a day from way back when before we rushed out the door to school and work. A pj day. A "let's bake some treats" day. A quiet static free day. A day of processing that our journey continues.......

No More Streaks

I windex-ed some mirrors today. Thats a sign that I am feeling completely out of control. Reorganizing my closet is my daily fix of finding my center. Actually cleaning with a cleaning product is a sign to buckle up...it's going to be a bumy ride! Everything is in its place in our house and I am mentally preparing our overnight bags in my head. I'm thinking I'll leave that shimmer body lotion and platform stilettos at home....lol!!!

We need to arrive at Childrens tomorrow (or today for my daily followers) at 12:30 and Sloane's procedure will begin at 2pm. The morning may be a bit hairy considering that Sloane is only allowed water or apple juice from midnight tonight until tomorrow at 12!!!! Poor Baby! I did start to tell her today that we are going to Dr. Rahbars tomorrow, but I didn't mention the sleepover again yet. Tomorrow morning is my sweet spot for that conversation.

The dinging and pinging of my phone tonight didn't stop. We are very thankful for all our circle of trusters who sent their thoughts for us tomorrow. If anyone of them offered to send me drugs along with their thoughts for my mask holding I would have take them too....ha!! Until tomorrow and the silence that will reside in my head while Sloane is out of my sight...I'm not looking forward to it!! I am eagerly awaiting the results of the scopes and moving past them......

Mask Holding

Should I be concerned that yesterday I dressed Sloane and ran out to pack the car and finish some final details before we headed up to Children's Hospital AND while I was out of her sight...she changed??? Because I am concerned. Apparently, the very casual and cute outfit I picked out for her wasn't what she had in mind!! When I saw her, after what was a matter of 3 or 4 minutes, I looked at her and said "what do you have on?" She looked me straight in the eyes with a certain twinkle and said "I changed my mind." I am concerned!! Is this possible at 3 1/2???

Pre-op yesterday went out without any major issues other than a very long wait and Sloane turning punch drunk. There was a question by all the medical professionals (we saw 3 sets of pp) as to whether or not to prescribe Sloane an oral steroid to open her airways a bit for her scope...but it was decided to wait until Monday to see how they sound.

Sloane knows what is happening. She has connected the dots. Does she understand beyond that there will be a mask that her momma will hold over her face that will smell like bubblegum and after she does the mask she will get a green Popsicle....I don't think so. Now, I told her none of those details. The lovely anesthesiologist, who chatted it up with her girlfriend about her new on sale finds at Karen Millen at Natick Mall, while we sat and waited right in front of her face did. I would like to thank her for giving Sloane all those necessary details yesterday!!! WTF!! It was the only thing she role played on the ride home with mammie and the first thing Sloane reported back to her father when he came home from work. Super Duper!!!

The approach I took yesterday was pointing out a very cute little girl in her adorable pjs watching the ball machine at the entrance of the hospital....saying to Sloane "look, lovebug, that little girl had a sleep-over just like the one you and me are going to have here next week. We are going to wear pjs" My approach was a bit less realistic than the one the anesthesiologist took....hahaha!

I am scheduled a stress free weekend in preparation for the "mask holding" on Monday! I am trying to keep Sloane low key OR maybe it is myself I am worried about.  I have visions of twinkling Christmas lights being adorned on my tree and brewing some hot chocolate with mini marshmallows on Sunday. Until then, it will be full steam ahead with a list of household chores to make me cry!! LOL

So Monday will be here before we all know it! I am very interested on what Dr. Rahbar has to say about Sloane's cleft as well as what Dr. Palm has to say about the aspiration markers. Let's all say a little Hail Mary that Sloane does not get a junkier cough  and does not get a fever as either will change Monday's plans....And as life would have it, what does Sloane report as soon as she gets home from preschool today..."momma,  Lauren has a fever. she was sick today." WTF!!! Lauren couldn't have gotten her fever on Monday. She had to pack in her backpack for today's unveiling???

Double Dipping

I love to double dip!! The times when you kill 2 birds with one stone or get 2 for the price of one!! That's exactly what is going to be happening on Monday. Sloane is double dipping while in the OR. We met with the pulmonary doctor today who was completely on our page. She agreed with all of our thoughts in regards to Sloane's wheeze and will be scoping into Sloane's lungs with Dr. Rahbar on Monday.

Monday is a go! Sloane's juicy cough didn't scare the doctor in regards to putting her under anesthesia.  We are heading back up to Children's on Thursday for pre-op and as long as my love bug doesn't develop a fever before Monday....our double dip scope will be happening.

The Pulmonary doctor was confident that we will have some answers on Monday as to why Miss Wheeze resides in Sloane's airway. I am looking forward to the answer and the plan of attack. I am not looking forward to prepping Sloane for procedure and her hospital overnight. We haven't discussed it with her yet. She is connecting the dots, but we haven't had "the talk" yet. I am just starting to talk myself into it. It's been a long time since we have spent time at the hospital as overnight guests. Sloane was so much younger then that in a way it was easier then what I am envisioning for next week.....

A Pigtail War

Is it possible that I am involved in a pigtail war? Is it possible that my daughter repeatedly tells me that I don't do the pigtails correctly? Is it possible that she has more faith in my husband, who has never even seen a dam pigtail, than her mother who still rocks them on the occasional bad hair day one month short of 41 years old??? YES..... Is the answer to all 3 questions. I am in the midst of a pigtail crisis. Sloane has the most beautiful Annie type curls dripping from her head. They are scrumptious like perfect corkscrews. People stop us everyday to tell her how pretty her hair is. Because of her curly qs and the fact that she basically just got a head of hair in the past year, we haven't exactly adorned her with accessories.

Now, I want to stop here and say I am a girl. I like to look like a girl but I am not the type who fusses. Mascara is all I wear daily, my hair is an upside down dry and go and my jewelry gets changed once in a blue moon. On a crazy day, I'll toss on a bangle bracelet to jingle jangle my way thru the day. Sometimes, I am afraid of sparkle. It scares me at my core!  I admire all the everyday and special occasion glitz and glam. Want to look finished on a daily basis, but I know there is always a hint of something missing in "my look"....LOL

Sloane has bows in all shapes and sizes and headbands that can jazz up any outfit. She hasn't been interested in them and I, because of my own "look", haven't pushed them. Her hair is beautiful without the ornament. It wasn't until she started preschool in September that her need for a hair accessory began. And, so, we started with bows and then headbands. All was going well. There was the occasional...."its not hard enough" statement and "daddy does it better" but we were making out okay I'd say.

That is until this am. Sloane got a haircut on Friday. Not her first, but a significant trim. And what does the glitz and glam Auntie Bec do??? She blows Sloane's hair out straight and gives her pigtails. The 1st time ever!!! Sloane was in love and presented herself at ti-ti's a short time later like a fashion model directing everyone to her pigtails. To which, they all gushed right along with her!!

So this morning was my turn. Sloane was going to get pigtails for school. It was a relaxing morning with no sense of urgency and I am was ready for the mission. After 4 tries, multiple complaints, tantrums and tears...I had failed miserably!! Sloane went to school without pigtails, I felt completely defeated in shock that I couldn't make a pigtail out of 3 inches of hair, and we both were disappointed. It was a pigtail war at its best.

They looked great to me, seemed tight enough and were so dam cute I could have squealed!! Sloane, on the other hand, said they weren't big enough, tight enough and she didn't like them!! Not a mommy and me moment to say the least. No one won the battle....and the war is still on.

Tomorrow, we are heading to Children's to see a pulmonary specialist. We wrote our letter of concerns to Dr. Rahbar about next Monday's scope and all agreed upon seeing a pulmonologist before the scope. Sloane's wheeze is very frequent now and it is accompanied a juicy, junky cough. It is the perfect time to get some input from the respiratory specialists. We are hoping tomorrow either adds them into the scope on Monday...making keeping Sloane under a bit longer and letting them have a look see OR we are hoping tomorrow eliminates them from the case leaving Sloane's wheeze in her airway in Dr. Rahbar's hands. 

I am not clear at t he point which way I think this will go.

• Tomorrow may be a game changer in regards to Monday, December 9th....I know that. 
• The wheeze is here..... I know that.
• Dr. Rahbar and his staff are on the same page with us about the wheeze and the need to bring in pulmonary at this point.....I know that.
• Sloane's cough is significant enough that I am excited for someone to listen to her and the junk in her lungs...... I know that.
• I am concerned that she is not healthy enough with her junky lungs to be put under anesthesia on Monday.... I know that.
• I am plugging forward to get the answers and put this wheeze to bed...... I know that.

I am already worried about tomorrow's pigtail war.....I know that!!!