Day 20 Snuggle Sunday

A rainy Sunday=snuggle Sunday.  Which just so happens to be the perfect day to stay in your pjs all day and watch TV.  So that's what the entire family did!  We played UNO, made cupcakes and watched countless hours of Tuckers favorite show, Dora The Explorer.  We topped the day off with a RN visit just to make sure that his lungs sounded nice and clear.  Which is such a relief to mommy and daddy since fluid can accumulate overnight. 

Day 19 Home...round 2.

We had a very special day today!  

This morning I went to my very first Bris.  (I was lucky to be situated in the hallway for most of it.)  It was a day full of so many miracles.  The miracle of life, and the love that two babies can bring to a family.  The babies (twin boys) were born using a surrogate.  What an honor it was to be a part of this very special day.  

Prior to my departure some silly photos for Annamary.  

Spencer beat mommy in UNO tonight.  Not sure where he gets his competiveness from.  

Yay...Tucker's home!  

Although he is cranky and sleeps a lot lately, it was so great to see him play with Spencer again.  We had a little crazy mother episode at the Walgreens in Framingham.  If you have ever dealt with a compounding pharmacy you will completely understand what I mean.  It was insane.  Tucker was going to miss four doses of his diuretic before they would even be able to get our drug mixed so we may purchase it.  Completely unacceptable that a 24 hour pharmacy only mixes compounds overnight, after insurance approval which can't be obtained over the weekend.  Me: Umm...what?!?  My son was just discharged from the hospital an hour ago, he cant go without it all weekend, your the only compounding pharmacy in the area?  

Pharmacy tech: yes, what's your phone number, I can call you back when it dies down in here.  Or it would be better if you called the overnight pharmacist, she'll be in at 10 pm.  

Me: are you serious?

Pharmacy tech: what's your number, I will call you back?

Now that's some great customer service at its finest!

I am so great full for the phone number that connects you directly to the cardiac floor at Children's.  Thankfully we know the NP that discharged us by name, I called Katie and told her our little problem. Within 10 minutes, she had called an oral med in that we can half and crush and we can give it to him that way. Its only suppose to be 12.5 mg, due to his size and weight.  When halved and crushed it will be 15mg.  So she checked with the pharmacy, that will be ok as well.

The first sign that Summer is approaching..

Day 18 A visit to Prouty Garden

Today, Tucker woke up in a wonderful mood.  He was vibrant and so happy, what a great sign!   During rounds they even mentioned our favorite four letter word today.  HOME!  Pending labs, weight check, X-ray, and switching to PO meds.  So maybe it won't be today, but hopefully over the weekend.  So we checked off all of our chores on our list and then went to the playroom for hours.  Bry and her mom came by while Mommy was over at Brigham and Woman's visiting Stephanie again, Tucker brought her the most beautiful purple tulips for her dreary hospital room. (Sorry I missed you guys). On our way over we went for a spin in the Prouty Garden, we were so happy to see the crocuses and tulips piping through the mulch.  Spring is finally coming.   It was a great morning!

Thank goodness for validation and parking passes. Thank you to our amazing heart group for the two passes which brought our few down even more.  ;o)

Daddy went into the hospital overnight to relieve Mommy as she could sleep another day on that pull out bed.  Mommy got home and waited for Spencer to get off the bus and brought him to the greatest place...The Mall!  lol I had to get a few things, while there I splurged on a new pair of shoes and some new running orthotics.  

Spencer was so patient while mommy did her shopping, I took him to the arcade for the typical boy experience.  We laughed and played all sorts of games.  

Me: Spencer get down from there!

Spencer: but I can't reach, if I'm here I'm not cheating, I'm too small.  

Me: Spencer it is cheating!

Spencer: not if I'm just playing myself!

He is SO my child!  Ha!

I paid $6 per ride for this happiness.  Since he was too short to ride solo, I paid another persons fees as well.  

Some things I am not proud of...ok it was the trash talking while playing my favorite childhood arcade game against my six year old child. He put up one superb fight for first place, but sadly he fell short.  Our deal, the loser had to take a photo with the score.  (I mean I have to show him how to loose gracefully, right?)

Mommy had a moment on the way home today after her visit with Stephanie, it shook me to the core.  For years we have said, we will be ok, lets just get through this catheterization or his next surgery.  It was today after visiting a twenty something with some of the same defects who is post heart transplant, that this is going to be our lifelong battle.  Every flu season, every low o2 saturation, every time he retracts back we head to the hospital.  Now as I am an advocate of taking one day at a time (hell, my schedule usually doesn't allow anything but that) however,sometimes it's too surreal that this is our "new" life.  So as we plan what my future career holds,"what if" is still right there in the back of my mind.  I am often assured that this is the constant worry of a heart parent, but at times, its overwhelming.  

Day 17 One Dora ballon coming right up!

Tucker had a very busy day today.  We went for a chest xray early this morning and then the surgical team rounded in our room today.  The team today contained our cardiologist and Annmarie, our favorite NP. 

When Tucker was admitted he had gained 2 lbs. of fluid in 4 days in his chest.  He only weighs 24lbs total.  SO this is a lot for his size.  As of today, he has lost .8lbs.  This is a good sign that we are moving in the right direction.  We are remaining positive that this is just extra fluid from the Fontan and that we will continue to see progress with the addition of extra diuretics like Aldactone, Lasix and Diuril.  If we do not start to see more drainage from the medications, Tucker will get placed on a low fat diet (nightmare for a parent of a child with a milk allergy who only eats peanut butter). Fingers crossed for a quick stay this week. 

After Gary arrived I stopped by B&W and visited one of our favorite heart friends, Stephanie Williams.  She is a wonderful example for our heart kids.  She has experienced the gift of a second change at life and is a heart transplant survivor. Please pray for her as she still has quite an uphill battle ahead of her. She still has her "bunny" from her very first surgeries.  I am not sure Lamby will make it many more years, Stephanie's bunny looks better than Tucker's Lamby does now.   

We filled out Tuckers All about me card today...We still have an IV line in!  Whew..

Guess who saw Mommy drinking water today and asked for some...small MIRACES!

We saw Dr. Emani today, he assured as that surgery is a last resort to drain the fluid.  I also asked about the child from Germany.  He told me that not only did he fix one very sick child he fixed 5 children.  I told him that he was amazing and that we don't mind sharing him with the world as long as he saves babies lives.  ;o). 

We must have walked the floor 50 times today.  We walked so much mommy has shin splints.  Note to self...Buy a pair of Dansko's!

Tucker got his stitches out today.  We had to hold him down while Annmarie cut them out today, but there were plenty of hugs and giggles to go around after. 

Tucker was so good tonight Mommy bought him a Dora balloon and drove him down to the ball drop for while.  We were tired of seeing the same rooms and walls on the 8th floor.  We got busted by out night RN Alex however,  when we saw her in the elevator.  DOH!

All smiles as Annmarie said goodbye, hopefully we wont still be here when she returns after her long weekend off.

Alex left her stethoscope in Tucker crib for a minute and that's all he needed to check Lamby's heart. 

Day 16 Precautions have been lifted!

Well, our amazing team lifted our precaution status this morning.  Thank goodness!  So then Tucker was able to play in the playroom and got to troll the cardiac floor in the little red car.  It really lifts his spirits when he isn't feeling well.  They have renovated the child life playroom here on 8 East.  Its beautiful! 

He had a set of labs drawn today and an Echo.  I spoke with the NP, it came back good, the real test will be his morning chest x-ray.   

My amazing husband has noticed that I have been in the dumps lately, so he pulled off the greatest surprise ever for lunch!  Not only did he manage to get me my lemon chicken, he got lettuce wraps as well.  Sorry Pam!  :o)

After I received this fortune cookie  had a great evening with Lynne and Annamary. 

Tucker has been in a holding pattern since we arrived, everything depends on tomorrows chest xray, please pray that his fluid dissipates.  Sadly if it doesn't, it could possibly mean that the extra fluid is Chylis and if that is the case, those terrible drains would have to be surgically placed back into Tucker's abdomen.  This would also buy us a lot of time in the hospital as it might take weeks for all of the fluid to drain and be gone.

Since we have been placed off of precautions, we have been assigned a roommate since we are in a joined room.  The little girl couldn't be more sweet, her mom is wonderful.  Sadly, her mother did not know about her daughters heart defect during pregnancy.  She had had feeding issues for he first three months and she brought her to the MD countless times and every time they dismissed her with difficulty feeding.  Her severe heart defect was caught when she was 6 months old.  Scary right?  I am so glad to be a part of passing the pulse oximitry bill in the state of Massachusetts. I told her how lucky I was to be detected during pregnancy, and apologized for not getting this bill approved sooner.  She was so happy to hear that this is currently happening, I just hope that every other state follows suit. 

I know that there was a reason why we received a roommate. 

Day 15 plural what?!

AmToday started as a wonderful day!  

Tucker slept fairly well after his Cardiologist agreed that I could give him Benedryl to help him sleep so that he can start to heal.  The entire house slept in until 6:45am.  At 7am, Lynne, Tucker's PT came over.  She was happy to see him so engaged with her even though his mobility is still limited.  

Then after Lynne left, and Spencer got on the school bus, mommy went and ran some errands. Mommy came home just in enough time to catch Bonnie, our VNA RN arrive. She took a bunch of vitals and noticed that his chest was retracting when he breathes.  Retracting is when Tucker  breathes through his chest and you can see his lower rib cage.  It means that his heart is working too hard to breathe.  I posted a video on YouTube of it under the.."MrsShelbyrae" channel.  

Bonnie spoke to our pediatrician, the pedi told us to call our Cardiologist, Dr Porras says to bring him in.. Yada. Yada...mommy was packed in 20 minutes.  

While in the ER, and without more than a 10 minute nap, he was a champ.  He was happy and playful.  I was starting to think that they made the wrong decision. 

Tucker's oxygen levels were fluctuating between 83-95.  Normal for post Fontan.  Tucker was sent for a set of X-rays.  

X-rays came back, Tucker has a pleural effusion in his chest.  More commonly known as fluid around his lungs and chest which is putting pressure on his lungs, which in turn is causing him to retract and cough.  Since he also came in and had a runny nose, we have been places on contact precautions and droplet precautions.  What a nightmare!  

On a positive note, Bry and her Mom stopped by for a visit since they were already at the hospital.  It was nice as being in the hospital is lonely with a two year old.  I also got the best fold our bed on the floor.  Doesn't that chair scream for a chiropractor?  Ugh! 

More tomorrow,

im exhausted.

Day 14 Where is the vitamin C?

What could possibly be the worst thing for Tucker?  Yup..a cold!  Tucker started to cough late Sunday night overnight, Gary and I thought that it was just some extra fluid buildup.  Nope!  This morning we has one snotty nose little boy.  Tucker continues to be miserable.  Good news is mommy and daddy are getting many snuggles while he isn't feeling well.

We placed calls to all the RN's and the MD's today, if he continues to get worse we have to watch for retraction and bring him in if he starts to retract.  

Our VNA RN is coming out in the morning along with Tucker's Physical Therapist, Lynne.  Hoping that Tucker doesn't get any sicker than he is right now or we will have to head back into Children's on precautions.  So upsetting to have so many setbacks already.   

Spencer had a great day today and got to wear his new Red Sox hat and vest.

After school snack time.  

Meals continue to be a challenge.

Mommy had a rough day, so she celebrated the days end with a glass of her favorite wine.  Cheers to brighter days ahead!

Day 13 hoping for brighter days soon..

We are still having a hard time controlling Tuckers breakthrough pain.  Hoping that our little boy finds some peace soon.  His parents can't handle his screaming "booboo" and "ouch" anymore.  ;o(

Day 12 vroom..vroom...

Pinewood derby here we come!

Spencer was so excited about his pinewood derby today.  Grammy, Auntie Pam, Bella, Tracey & Quinn came over for the festivities.  Even though Spencer came in dead last, he remained a good sport about it.  Mommy...not so much!  

The dreaded participant ribbon.  

After the derby, Tucker had his original VNA RN, Bonnie swing by for a visit, after a tiny tantrum, she was able to get a blood pressure and vitals.  

After dinner we watched Frozen again.  Popcorn was enjoyed by all.  

Tucker had more breakthrough pain tonight, as he spot out most of his medicine before bed.  Please pray that we continue to regulate this pain, its torture for us to hear and see him in such pain.  ; o(