Monday, November 12, 2018

Settling in at home....

We arrived home Saturday afternoon and we were both glad to be home and to see everyone! Jordan is doing well and getting settled into her normal routine. Taylor came home Saturday and spent the night with her and Cory & Sunday they binged watch movies and just spent the day together.  As always Cory is doting on her.  His love for her is amazing and I am so thankful he loves my girl the way he does. So I go home at night and come back during the day to hang out with her and Cooper!
Out of all of this her leg is what is giving her the most trouble, I thought for sure it would be the face inscion that has 50 or so sutures! So doing little things like putting her on her socks and shoes, climbing into bed, and just sitting down on the camode are still difficult and require assistance. Her walking is getting back to normal and her facial swelling is improving everyday.
While the healing part continues the hard part begins....the wait to see if this was successful.  It takes 3-5 months for the nerves and muscle to regenerate & to see results.  We are scheduled to go back to Boston the 2nd week of April for a follow up.  I am hopeful we will see some results before then!  
So please continue the prayers for my girl for a successful outcome.  I believe there is power in prayer!
Below are some pictures that have been Jordan approved!  
On the plane heading home!
Friday afternoon at lunch..

Just got discharged!

At the airport 11/10/ step closer to home!

The marks are where they checked for pulses daily and the incision.

Friday, November 9, 2018

Discharge day 11/8/18 & 11/9/18 am update...

Sorry I have been a little behind updating the blog, the last 24 hrs has been a whirlwind! Jordan busted out yesterday afternoon and we successfully made it to the hotel!  As I suspected moving around with her, the luggage , and her mobility being rocky was a little tricky but we did it!  While she was anxious to get out the hospital we really just traded 4 walls for a different 4 walls until Saturday am.  We are very thankful that these 4 walls have a comfy mattress and a good hot shower!  After getting settled into the hotel we got some dinner and she had me binge watching Jersey Shore Family Vacation with her!  Not sure what made us really notice but we both started to notice that her lip seemed more swollen than it was this afternoon.  Jordan had even asked at discharge if she had stitches inside her mouth that we were unaware of and they said no. This made me actually take a really good look at her lip and inside she has what appears to be a hematoma on the inside of her lip. Of course me being me, I took pictures and immediately sent the MD a email. We are still waiting to hear from them about it.  Sleep was was very broken for us both last night and Jordan talked in her sleep constantly talking to Taylor and asking for her and Cory.
This  morning she was up bright eyed and bushy tailed at 6am wanting to take a shower because todaywas the day she could finally wash her hair!  So this morning we have already showered and had breakfast all before 0800!  Crazy!!  LOL While eating breakfast she decided that we would wait to hear from the MD about her lip (which she thinks is a little less swollen today), and go out for some lunch. She even let me snap a picture and approved it for posting!   I think she is starting to feel a little couped up!  So if anyone knows a good lunch spot in Boston shoot me a text or email!  Tomorrow we fly home and we are both excited to see our loved ones and our puppy dogs.

Thursday, November 8, 2018

Post op day 2 and am update for day 3..

Oh what a difference between day 2 and day 1!!  Yesterday she turned a corner, tolerated food, and most importantly was able to keep it down!  She walked a ton, played Jenga with her little friend, and played around on her iPad. While her and her little friend were playing the chaplain came around and he was telling her little friend what a big smile he brought to Jordan’s face.  Jordan said something about her facial palsy and her uneven smile and her little friend said “ You have a beautiful smile”. That brought a tear to my eye!  Here is this child that sees what I see everyday but what she is sometimes unable to see.  It was such a sweet moment. She is a little discouraged that walking is so tough and she is hopeful once the final drain is pulled it will improve.  I keep telling her one day at a time!  The facial swelling is at its worse today.  Poor thing looks like she has a shiner :(  That too will start to subside slowly.  She is starting to worry about how she is going to do things once she gets home and I keep telling her she will have so many people around to help her she is going to get tired of us all!  As a Mom, I just want to help her do everything so she doesn’t fall or get hurt.  Stepping back is hard to do but something I know I will have to do in the days ahead.
Now one of the crazy things they brought her yesterday on her supper tray was purple sherbet!  Who has ever seen sherbet that color? It was raspberry flavor and she did the taste test and said, “ Nope not for me”.  LOL I guess we were both expecting the normal orange sherbet but boy did we get a surprise!
The team has already been in this morning and the plan is to pull the last drain this afternoon and then kick her out!  We are both ready to bust out of here and she is anxious to be able to take a hot shower tomorrow & finally be able to wash her hair! Not going to lie we are both a little nervous about getting around with her and luggage in tow!  We have discussed several scenarios this morning and have come up with a game plan. Let’s hope it works!

Wednesday, November 7, 2018

Post op day 1 & am update for post op day 2

Yesterday started very early for Jordan. The team came in early and checked the blood flow to her flap and they say it sounds “beautiful”!  She also got to loose the drain that was on the outside of her leg! One down 2 to go! Then we went down to ultrasound early and got great news that confirmed the flap has GREAT blood flow!!  The ultrasound tech also remembered her from her 1st surgery and the fact that she was a twin because she is also a twin!  It was nice to see that after 4 years she still remembered Jordan.  I wished I could tell you that the day stayed that positive but it was not to be.  Jordan has been fighting nausea and vomiting since early Monday evening.  We tried several times yesterday to advance her diet and to no avail the end result it all came right back up, every time :( They played around with her meds but even with the meds on board the n/v persisted.  Even with that going on my girl still got up and walked 3 times yesterday and early evening finally felt like getting dressed! As I suspected mobility is tricky.  The left leg is her good leg and she is very unsteady on her feet.  I am hopeful that once the last drain is pulled that mobility will improve.  She continues to amaze me with her resilience and strength.
Our new friend that welcomed us to the floor stopped in several times to check on Jordan and let me just say he is the sweetest 9yr old!  Every time he told her how he hoped  she would get to feeling better soon and is just so polite and like Jordan, wise beyond his years.  They tell me that he goes to every room to say hello and to give them all good wishes! Isn’t that the sweetest!
The team has already been in early this am and checked her flap and unwrapped/rewraapped her leg.  At this time she also got to loose the face drain...YEAH!  1 down 1 to go!  The facial swelling is worse today and that is to be expected.  Tomorrow that should peak and then the swelling should start to subside. The leg drain is still putting out a good amount so don’t expect to loose that until maybe tomorrow.  We did learn this am that she will have to keep wrapping that leg for 2 weeks to make sure the fluid doesn’t collect after their final drain is pulled.   Dr. Hadlock also just popped in and was just overjoyed with how well things went in the OR and she is very very hopeful that when we see her in April there will be movement!  
So today’s goal is to keep food down and walk!  Thank you again for all of the calls,texts, thoughts, and prayers.  It takes a village and at times like this I am VERY thankful for how big our village is! 

Monday, November 5, 2018

Post op day of surgery....11/5/18

Jordan came out of surgery about 1:30 and I got to see her about 3. She was lucky enough to have a post op nurse named Linda who had taken care of her before and remembered her & Cooper!  LOL Cooper is Jordan’s dog for those of you who don’t know who he is.   Dr. Hadlock & her team were very pleased with the way things went!  They did remove the muscle that was previously transferred and replaced it with new muscle from her right leg.  She said that the  transferred muscle looked good and she thinks  the 1st surgery was unsuccessful due to poor nerve regeneration.  She said the nerve that was transferred in the previous surgery was working but just wasn’t strong enough to get that muscle moving.   As I said in my last post,  Jordan has incisions on the inside and outside of her left leg and down the old incision on the left side of her face. All three places have drains that will stay in place for the next few days.  Unfortunately, she can’t have anything by mouth until after she has a ultrasound in the am to check the blood flow of the graft.  If the graft looks good she gets to eat, if they see a issue she will go back to the OR.  So fingers crossed all looks well!  According to Dr. Hadlock & her team this surgery has a 92% success rate!  The pain has been minimal but as most of you know that have kept up with her since this journey began, my girl has a very HIGH tolerance to pain. So we have to keep on her about telling us when the pain is too much. We thought she was  all clear of the queezy belly but we spoke to soon.  At this time she is finally back to sleep with nausea meds and pain meds on board.
We are very lucky to be on the pediatric floor and I was pleasantly surprised  when they gave us a room with 2 beds! We also had the sweetest little boy welcome us to the floor and brought Jordan a slinky:) So I am off to sleep while she sleeps.  Thank you for all of the calls, texts, thoughts and prayers...we sure do appreciate them!

Facial surgery....Take 3

We arrived very tired at the hospital early this am for what hopes to be the last & a SUCCESSFUL facial surgery.  Preop was very unventful and we got a lot of last minute questions answered.  Surgery is expected to be between 6-8hrs long (we heard that timeframe days ago but it still hadn’t sunk in til today).  Dr. Hadlock and her partner Dr. Jowet will be doing the surgery together.  The surgery consist of them taking muscle and fascia from her left  leg and placing it into the left side of her face.  This will entail removing the muscle that was transferred during the 1st facial surgery.  They are also going to connect the chewing nerve and blood supply to the muscle that they are going to transfer today. This will take about  3-5 months for all of that to start working. There will be several incision on the left side of her face, she will have a drain in her face, and 2 in her right leg where the muscle/fascia are removed. She will also have a foley until tomorrow and will also not be able to eat or drink until tomorrow :(  We will be admitted until Thursday.  So I foresee lots of walking and Netflix in our future! Jordan was in very good spirits this morning and was very anxious to “get the party started”!  LOL. She told me just before she was whisked away that she had the easy part today and I had the hard part.  She is so wise beyond her years!
As I sit here typing this I can’t help but reflect on the the past 6 years. This journey really began when she was diagnosed but the real path of the journey began in 2012. My girl has been through so much these past 6 years. As a parent I only wished that there was a magic wand somewhere that would make all of this better for her.  Yes, she has adapted to her deficits, yes she has overcome SO many things,  but I also know that the facial palsy and the eye issue bother her more than she would like to admit and I can understand that! As a Mom I hurt  because I can’t fix them for her!   So today I am praying that this surgery is successful and that in the months ahead when she goes to chew we will see a symmetrical big beautiful smile!