The good and the not so good RECAP

These last few days have been a roller coaster, Danielle has finally finished 4 of her 6 grad school summer class so here is the promised update from the last couple of days! 

Stephen started the ketogenic diet on Monday and has done great with the diet since then.  We have been told by multiple doctors that we were being seen by at Duke that he was the best child they had seen adapt to the diet; he tolerated everything wonderfully.  We have had such a great outpouring of support and love that we appreciate so very much.  We have also had many questions about what exactly goes into preparing a meal for Stephen so here is a little synopses from the hospital. (which we have since learned was MUCH easier than at home!!)

His meals consist of a meat and a vegetable or fruit along with a host of fats that we add to the meal.

 We have our scale and measuring supplies out and ready calculate the percentages of each component of the meal he gets

We were given a list of about 15 recipes for Stephen to choose from and the exact gram amount that everything must be in (We have to be exact down to the 100th of a gram for the diet to be successful)

 Then we start the weighing process, we have to weight out each container, then set the weight to zero and then add the exact gram amounts of the foods. 

It can be quite tedious and time comsuming even when you have everything out and ready (We have since learned from coming home that this was nothing at the hospital, it is way more time consuming at home)

We then line everything up and try to figure out how we are going to mix everything for him to eat. The key is that he has to eat EVERY drop of food that we have measured out, no piece can fall or be left behind or else his carbohydrate/fat/protein ratio will be off.

 On top of all of that we still have to get all his seizure meds and now a slue of multivitamins and minerals also in him

He usually tops a meal off with a syringe full of cream. Another key element of the diet is that he must eat everything within a 30 minute time period or else his body will start metabolizing the foods at different rates.

Stephen has been such a tropper through this whole experience, just as happy as he can be! :)

 This was the precautionary IV that they put in just in case his blood sugar levels got too low when we started the diet (a common symptom for many kids)

His g-tube looks fantastic and has been healing wonderfully. He loves watching water go down his tube and playing with it. 

Stephen had some special visitors while we were at Duke who showered him with gifts, love and prayers.  Mom and the rest of the family have also been showered with love, support, and gifts at home that we are so grateful for. 

 We had the most wonderful teams of doctors who watched after Stephen during our stay, he was monitored by neurology, GI specialist, general peds teams and his dietitian.  They were all so great with Stephen and getting his diet started, we couldn't have asked for better teams! 

And we were able to head home a day early from the hospital because Stephen was doing so great on the diet!! :) 

Like I said, Stephen did great while we were at the hospital and we are so thankful that he tolerated the start of the diet well. Coming home has been quite a reality check, taking care of Stephen, managing his meals, medications, water intake and blood test has turned into a full time job for both Julie and Danielle.  Just to give you a glimpse of what we have to do, Stephen has to be given 240cc of filter water every 2 hours through his g-tube, we have to test for ketones in his urine multiple times a day, we have to test his blood for glucose levels and ketones once a day, along with changing his entire diet and measuring out all his foods precisely- it is overwhelming to say the least! 

Unfortunately today Stephen hasn't been doing as wonderfully as he has been. Stephen hasn't been able to keep down foods or liquids for most of the day.  We are concerned about possible diet complications (him being in severe ketosis) which we think we have ruled out, complications with his g-tube, shunt failures or hopefully just a virus.  We have been in constant contact with all of his doctors and specialist at Duke and we will continue to monitor him overnight. Pray that he will start taking fluids again and that this won't be a complication that ends us up back in the hospital. 

Please continue to pray for patience and guidance and that we get adjusted to our 'new' normal on this diet

Pray that Stephen will continue to be healthy and thrive on this diet

Pray that today was just a sick day for Stephen and he will be back to his sweet self tomorrow. 

Lily Gray's Great Adventure

Lily Gray has had a wonderful week in the moutanins with the Clarke family, she has been having so much fun with Emma Kate and Redding that I'm not sure she's going to want to come home. Here are some of the highlights of her week. 

She got to go to tennis camp this week which she absolutely loved! 

The kids got to go tubing down the river and play in the river twice this week.

They had smores night where they roasted GIANT marshmallows and had a great time!

 Lily Gray and Vandy (the Clarke's sweet dog) sitting on the couch talking to Mommy on the phone

The girls on their way home from the mountains!

Lily Gray we are so glad that you have had such a fun week with the Clarke family and we can't thank them enough for letting you go but we are so excited for you to be home with us! WE MISSED YOU!! SEE YOU SOON!! :)

We're home but need prayers

We have been so busy these last few days with learning everything and getting into a "new" normal.  We are so happy and thankful that Stephen was able to come home yesterday afternoon!  I've got a post and tons of pictures from our time at the hospital but for right now the thing we are asking for is prayers.  Stephen is having a little bit of difficulty at home adjusting to the diet and it is a 24 hour job for both Julie and Danielle to manage everything...

Please pray for patience and guidance and also for Stephen to remain healthy.  

Day 1 of the ketogenic diet

Today was the big day- Day 1 of the ketogenic diet!  We are excited, overwhelmed, nervous, grateful and hopeful that this diet will be the answer to all of our prayers.  Before we get into everything with Stephen, Lily Gray is having an adventure of her own this week.  Lily Gray went to spend the week up in the Blue Ridge Mountains with the Clarke family, yesterday Julie and Lily Gray headed up there and today was Lily Gray's first day of tennis camp in the mountains.   

Here is Lily Gray and Emma Kate with their tennis instructors.

They also headed down to a lake today and saw these sweet baby swans with their mother.

And of course a Blue Ridge must is Kiliwins Ice Cream- YUM!! I hope you girls had a scoop for us! :)

Lily Gray we miss you terribly and are so happy that you are having such a great time, you haven't missed much being gone, this is what we did today....

When we got the call mid-morning that a bed was ready for us we packed up and headed straight to Duke. Stephen was just as excited as we were to start this whole process. 

Once we got to Duke and got settled in, we had a fairly quite afternoon.  We have the most wonderful team of doctors looking over us, who have checked in on us multiple times already (I know!!) We spent most of the afternoon watching TV and playing games on the Ipad. 

This is Stephen's favorite game! 

Once dinner time rolled around that is when all the action started, the dietitian came in to get us started on the diet, the IV team came in to put Stephen's IV in, and they came to collect blood all at the same time. There definitely isn't enough room for everyone in our tiny hospital room.  We got an IV in and blood drawn quick and easy, thanks to the peds IV team!  Tonight for dinner we had applesauce and bologna (for the first time). He did great with his first "ketogenic" meal!  We have started tracking his blood levels, every four hours, we get a lovely finger prick, along with giving Stephen 240 cc of water every 4 hours.  He seems to be tolerating everything great so far, we are looking forward to a peaceful night in the hospital (HA, is there such a thing?!?)

We wanted to say a very special thank you to whoever left us the yummy chicken, mushroom and pasta meal along with the beautiful gladiolus!   Thank you thank you thank you whoever you are! 

The last supper

Today was Stephen's first and last full day at home from surgery and before going back to start the diet.  He is feeling great, everything looks wonderful and we are so thankful to have the tube in place!  Today was a busy day running around trying to get everything ready for our hospital stay next week.  On the ketogenic diet everything that has carbs must be removed, it's crazy the everyday items that contain carbs.  We have had to change everything from toothpaste, to lotion, to shampoo, to medicines, to bug spray and more. Stephen and Danielle spent the first half of the day running around town getting new products. Crazy fact that we discovered today- a 3 month supply of Stephen's medications cost $25,716.72 and most of these meds are generic!! I can't imagine what the cost will be when we switch to brand name. He was exhausted after a full morning of errands. 

 We want to say thank you to all of our sweet new friends we made at Target today and a huge thank you to Noodles and Co.  I decided that since today was Stephen's last day on carbs, he should overindulge in everything he loves, which is where Noodles and Co. came into play.  Stephen loves Noodles and Co. and they are always so sweet to him when we go.  Today the manager treated us to a free meal since it was Stephen's last time at Noodles! :)  He had his favorite Thai noodles with shrimp and he had a delicious piece of cheesecake of dessert. 

The rest of the afternoon was fairly low-key, we helped get Lily Gray off to the mountains to spend the week having tons of fun with the Clarke family! Lily Gray- Stephen and I miss you already, we can't wait to hear about all the awesome things you get to do in the mountains! :)  Send us pictures too!!!

Tonight we got an extra special surprise for dinner, being Stephen's last supper before we start the diet I wanted to do something extra special and yummy, just as I was trying to decide what we should eat Julie's sweet friend Byrd Kirby came to the door carrying lots of goodies.  She brought us some amazing BBQ pork, coleslaw, and Stephen's favorite potato salad.  He was in absolute heaven after eating this delicious meal.  

   Byrd- This was the perfect last meal for Stephen and you were so sweet to think of us! 

Tomorrow is the big day, we've got a few things left to pack and then we will be ready to go.  We are hoping to get into the hospital sometime midday tomorrow to get things started.  We will keep ya'll posted!

PS- Lily Gray, Stephen says that he LOVES YOU! 

STEPHEN'S HOME!

We are so happy to say that our sweet Stephen is finally home!! Even though he was only in the hospital for 1 night it seemed like an eternity at home without him (says Lily Gray)

We were able to leave this morning, a miracle by hospital standards- 11am!  Thanks to Mommy pushing the doctors to get the paperwork done.  Dr. Rhinstein, the GI doc who did Stephen's surgery, says that everything look great and Stephen's incision site looks wonderful!  He seems to be in little to no pain today, thank goodness, and we were more than ready to be home.  Before we left the hospital Stephen had a very special visitor come to see him. 

Lily Gray came to the hospital armed with gifts for her sweet brother to brighten up his day! 

 Showing Stephen his card

Reading the card to Stephen.

This was Lily Gray's first time ever coming to the hospital to see her brother. She was so interested and excited to see everything and learn how everything works- she is so protective over Stephen and it warmed her heart, and ours, to see them so happy together.

Stephen was able to show Lily Gray his new feeding tube and teach her how to use it, we are happy to report that Lily Gray gave Stephen some water this afternoon in his new tube! She is such a great helper! 

 Stephen gave Lily Gray a quick tour around the children's ward before we packed up our things and headed home. 

We are so happy to be home for the weekend.  We will head back to Duke on Monday morning to start Stephen on the ketogenic diet but until then...

 Stephen says, "Good-bye DUKE!"

One last special note:

  Lily Gray wants to send a great big, giant hug to her Nan Nan for coming and spending some time in Raleigh with her. She loved having you here and can't wait for you to come back.  We love you Nan Nan! :)

Surgery Day

Today was the day that Stephen had surgery to get a feeding tube put in. We were up at'em at 5am this morning packing getting ready to head to Duke.

  Of course, once we got to Duke we got to sit in the waiting room for about an hour before we were able to go into pre-op.  Once we got into pre-op, Stephen who was already exhausted from the morning got the sweetest nurse to help us get him ready for surgery.  

She was the best because she came prepared with bubbles and fun animal pens for us to entertain Stephen with while we waited for the doctors to tell us they were ready.  Stephen was in surgery for a total of about 45 minutes, start to finish.  The procedure itself only takes a few minutes to do. After surgery we headed back to recovery where he was just starting to come off an anesthesia. 

Recovery rooms are always so crowded and busy with people traveling in and out, we were hoping that we wouldn't be in recovery long and they would soon have a room for us- HA who were we kidding?!?  Almost 3 hours later, they had a room ready for us, Stephen was exhausted by this point and only wanted to sleep without disturbances.   Once we got all settled in the room, we got some fluids in him, got SpongeBob on the TV, and we were in business. 

His monitor

IV

Watching SpongeBob before dinner.

Overall, Stephen did great in surgery, he is having some pains so we are keeping him on medication to keep him comfortable.  He will be staying in the hospital tonight (with probably little to no sleep) and hopefully we will be released sometime tomorrow.  We will have a few days at home for him to recovery before we head back to start him on the ketogeneic diet next week.  

Thank you thank you thank you for all the sweet cards, emails, and messages.  We are so grateful for all the love, support and prayers we have been given- they have truly meant so much to us. 

Hopefully, tomorrow we will have pictures of us coming home! :)

Stephen come home!