Hallelujah!

"Mom! Put this on the blog!"

* note- that cup actually says, root beer ;)

We've had lots of great progress since our last post! Isaac's tummy finally woke up and while at first we waited to get the go ahead for clear liquids, since then, he got regular liquids this morning and then got the OK to eat anything for dinner!  Isaac was sooo excited!  We let him order whatever he wanted and that he did- Cheeseburger, Pizza, baked potato, applesauce, cookie, chocolate milk (and carrots, only because the dietician made me feel guilty when she said, that's a lot of starches.)



He enjoyed his feast. For several days he was asking for free smells of food. It became very funny and he was such a good sport about his hunger pains.  After 2 weeks of not eating he has earned every bite!

The pizza wasn't very good, so we broke out of the room and went to the cafeteria and got Noble Roman's which is way better. Now we are just chilling and watching "secrets of disney pixar movies" on youtube.  It's a fun little date.

On the way back we took a short cut through the courtyard and saw the beautiful light up play space.


Yesterday Isaac also got unhooked from all IV meds too!  It's been a big couple of days in progress and we are so thankful!

Patience

Today is 6 days post op.  He has been in bed since Friday night (aside from sitting in a wheelchair for a little bit yesterday).  He hasn't eaten anything solid for 8 days and hasn't drank anything for 7 days.

He has been patient, though it is wearing on him.  Yesterday was not a hard day in terms of pain, but emotionally, he's getting bored.  And the meds that he is on are making him feel a little strange and a little down.  But the nurse said he is way ahead of the curve on pain meds.  He pushed his pain button maybe once yesterday.  He does not like taking the meds.  He was even dry heaving throughout the day yesterday and every time we offered zofran he said, no, I feel better now.  Perhaps some of his pain is reduced because his feeling is spotty in areas around his abdomen, but the incision goes past his line of not feeling, and it seems like he is in the most pain when he moves.  But for some reason, he doesn't want the meds.  So to him, laying still in one position feel safest.

We are patiently waiting for his tummy to wake up.  It's been through a lot and been shut down for awhile so it takes time.  They won't try clamping his NG tube which is a tube going from his tummy to his nose until he gets less output from it.  It is currently sucking up normal stomach juices like saliva and bile since his tummy isn't awake yet.  Once they clamp it, they can try liquids by mouth.  So since he has only had IV fluids and no nutrition, they are beginning TPN today.  This is a form of IV nutrition.  Dan and I both agreed we wished he didn't need to go on this, however we know he needs the nutrition and we are hoping this will help give him a little more energy.

I know this all sounds like a downer update, but it really isn't.  He is progressing.  Healing takes time.  His little body has been through a lot.  His abdomen has been cut and put back together.  It's pretty amazing what surgeons can do, and how resilient his little body is.  In a world where everything is fast and at the blink of a fingertip tap, it makes waiting seem like a bad thing.  But perhaps waiting isn't always bad.

Isaac, Dan and I (and tag along Micah), have had a lot of time together.  I've gotten to read stories to Isaac, climb into bed and take silly selfies, learn a little X-Box and just sometimes be quiet together.  I know being in the hospital seems like the most awful thing, and admittedly there are a million other things I would rather being doing with Isaac.  And I certainly would trade places with him in a millisecond, but honestly, there is something peaceful about the slowly down of time in the hospital (from a patient/parent side).  Normally my day starts by 5:00 am and ends around 11:00pm.  That pretty much is the same, but right now it is 8:00, Isaac is quietly sleeping and I'm able to sit and be still.  It isn't always like that, the night before last Isaac was up most of the night, but sometimes, there is quiet.

I walk around this miniature city inside Johns Hopkins.  There are so many people to see, and parts of the hospital.  Some things hopeful, some things very sad.  I don't know people's stories, but I wonder about them.  It puts life into perspective.  There is so much more than this problem of mine or his.

Then I think of the outside world.  I miss my girls and Gabe.  I'm so thankful that I get to see them daily, even if just for a little bit.  Not everyone gets that in a long hospital stay.  And they are having so much fun with Grammie and Papa.  Their lives are being enriched.  It is an adventure, for us all.  And I'm thankful for that.

Being in the hospital makes me think about gratitude and moving forward one step at a time.  Today, I am thankful for this peace of the morning.  The rest of the day may prove to be busy, or maybe not.  I'm going to take Isaac on a walk out of his room, and finally brush his teeth.  I feel as though today is a new day.

Today we will find hope in the little things and be patient about the things out of our control.  We will find the humor which is something my mom always told me and we will allow ourselves to fall into the patience.

Part 2- progress Monday afternoon

Well, in the midst of writing and not getting side tracked before publishing part one, Isaac took a great nap and when he woke up, he perked up.  Papa (John) had brought over Gabe, Hila and Mary and Isaac starting playing X-Box with Gabe.  Isaac starting talking more and even trash talking the X-Box.  This was a big boost in his spirits!

                                              

He has asked for goldfish crackers and pizza since the afternoon (which is the first he has mentioned food since before surgery).  Unfortunately, he can't eat yet, but we are seeing some signs that his bowels are waking up, so these are all steps in the right direction!

Tonight his good buddy Crosby FaceTimed him and it is the most vocal Isaac was all day!  He really enjoyed talking to him and had me turn back on the Xbox so he could show Crosby the Xbox game.  I am sure Isaac will be asking for to purchase "Wipeout" when we get home so he can actually play it with his friends.  

Tonight, we are watching Thor and he is resting.  It is a peaceful evening to an afternoon with lots of positives!

Part 1: Sunday & Monday morning update

We have had a couple of quiet days of slow and steady progress here for Isaac.  He is tolerating the pain really well.  He does have some pain and is pretty reluctant to hit his pain medication button, so when he does ask for it, we know he really needs it.  I've overheard his nurse from the weekend telling the nurse coming on duty that he is a tough little guy and pushes through the pain.

Most of the time he watches TV and is in and out of sleep.  The meds make him sleepy, but each day he seems to be awake a little more.  Today, Isaac just wants me to be near him and rub his head.  I can tell he seems a little more uncomfortable today, but overall, he really is doing well.

Yesterday he said he wanted to make legos with mommy. So of course we jumped at the chance.  We made a new Star Wars Ty-fighter (I'm sure I didn't spell that right- I may not be well versed in my star wars battle ships!).  He did great and even made it 30 minutes past his pain med dose so he could finish it.  I told him to smile for a picture when he finished his lego, and he gave me his best smile for the moment.  I sure do miss his big smile, but I know he will have it back soon.

Right now, we are working on his tummy healing, his bowels and stomach to wake up, and keeping his pain controlled.  The NG tube in his nose is sucking out stomach juices, so once his stomach wakes and starts taking away those stomach juices, then we can try clamping the NG tube and seeing how he does with some liquids.  We pray that happens soon.

The hospital is huge and Dan and Micah took a walk exploring yesterday while we built legos.  There is so much history in this hospital and he shared some very pretty pictures with me of the original building.  I'm hoping once Isaac is able to get out of bed, I can take him on a walk around.  He may find some of it interesting since he loves history (then again- he may just like the playroom and change of scenery!)  I feel like I am in a city within a city in the hospital.

The kids have been stopping by daily with Grammie and Papa to visit Isaac.  It is so helpful to have them close by.  I miss them, but the fact that I can see them a little bit each day makes the world of difference and having Isaac see them is a highlight of his day.  Micah has been with me the whole time since Dan is still in town and Isaac always asks to rub Micah's head when he sees him.

post surgery update

Surgery ended around 7:30 last night and we got to see him in the PICU around 9:30.  He was still sleeping and he slept throughout most of the night.  They kept him on a continuous pump of pain meds until this morning and now it is intermittent along with a pump, a button which we can push when he needs meds.  

Post Op in the PICU

He has been in and out of sleep all day and said a few words.  I can tell he has some pain, but he is overall doing really well and so tough.  He has only asked me to push the pain button twice today.  He watched a little bit of Star Wars Lego movie, then fell asleep. 

Watching a movie today.

It's hard to see him suffering, but he is handling everything really well.  Earlier, I asked if I could do anything for him and he said to keep my hand on his head.  He has always been my little, cuddle bug.

The urology team came by and are happy with how he is progressing.  It will take awhile until his stomach wakes up and there is still so much going on with his belly they don't want him eating or drinking though his nurse did convince the doctors to let him have some ice chips. If he wants he can have one ice chip per hour.  But so far, he hasn't wanted anything.  

Thanks again for all your thoughts and prayers.  Right now, we keep praying for continued healing and good pain management.  

The tide has come

Good afternoon warriors,

Dan stayed over with Isaac last night and Isaac got some good sleep.  Gabe, Micah and I headed over around 6:00 and Isaac was still sleeping when we got there. 

Isaac was such a brave boy this morning. He was nervous about surgery but went in with his game face on. His brother Gabe sent him text meme’s (which are funny picture clips) which kept his mind off of things in pre op prep. I was able to go back with him into the OR while they put him to sleep. He giggled at the images and then quickly fell asleep. 

Dan gave him a great pep talk which helped calm his nerves and Gabe was a great support. 

Everything began around 7:30. We will receive calls every two hours or so from his nurse. The actual surgery began around 9:00 after they had intubated him and placed a picc line.

Surgery days are hard.  There is a range of emotions.  You don't want your child to go through surgery, and you wish you could take his place.  Now that he is older and I can see the fear in his eyes, breaks my heart.  He understands what is happening and that is hard.  But on the other hand, we have great hope for the outcome that this surgery will bring.  We know with this change for him, his life can be easier.  It's all a part of his birth defect; making decisions about his medical health to help him have the best quality of life and make things work for him.

Surgery does not define him, nor us as his parents, but it does impact it.  

I was sitting thinking about this journey .  An ocean wave comes to mind.  I feel like God is the ocean, controlling the tide as it rolls in and out.  Its fluid and changing and we can not control it.  But, we are all given a boat to steer on our journey in the ocean.  No boat is the same, no ride is the same.  We are given the keys to our children's boats until they are fully ready to drive their own boat.  We still aren't in control, but we can use the knowledge in our minds and love in our hearts to be our compasses. The boats we are on ebb and flow as the tide rolls in and out.  Sometimes we need extra oars to get through the rough tides. 

I had to hand over my steering today to Dr. Gearhart.  I want to be in control and know exactly what is going on, but we all know that just is not possible.  I have to hand him over and trust that Dr. G and his team will ride this big wave and control the boat so that Isaac can eventually take over the wheel with more ease.  

And, I also need to hand out oars.  And that is where you all come in.  All you prayer warriors.  All of you out there thinking of Isaac.  Each time you pray, or hope or send a wish for Isaac, you are taking a oar and helping push his boat along.  You are riding this tide with him.  All because of love.    

This surgery is all a part of his life, a tide in his journey.  Thank you for filling his boat with love.  

Baltimore

Wow, as I look through the blog, I see that it has been 5 years since I have written on here.  It's not that I have not wanted to, but life has been busy and in many ways, Isaac's life has been one of a typical kid.  He has his own activities he is involved in and his medical needs have been minimal.  Life is good!  Isaac just finished first grade and has grown and matured in so many ways this year.

If you know us or have followed since that time, you know that the resurgence of my writing on here comes as we enter a journey of surgery.  It has been 6.5 years since Isaac has had major surgery.  And tomorrow, he faces a big urological surgery.

We knew that at some point this would be a surgery would be one that would likely be important for him as he grows physically and emotionally.  It will ultimately give him more independence and he has expressed the importance of that for himself, as well as we have observed in him.

Making medical decisions does not come lightly for us, so we thought long and hard and prayed about the best place to do this surgery for him. We decided on coming to Johns Hopkins Hospital in Baltimore, MD.  We have had so much support from family and friends; everyone has given support in their own way and we couldn't be more grateful.  Friends have showered Isaac with love by throwing a send off neighborhood party, teachers, friends and family and sent him activities and games to play while we are here, my parents have babysat for us so that we could prepare for this big trip (and get our house ready, because in the midst of being in Baltimore we are having our basement finished)  and Dan's parents are coming out with us and renting a home so we can have all our children together as Isaac recovers, to which we are so thankful that we can stay together and Isaac can recover as "normally" as possible.  Please know we are blessed and thankful for everyone's love and support and selfless giving.  And that without a doubt this includes all of the prayers and positive energy that everyone is sending.  If you've read any of my writings in the past, you know that I 100% believe in the power of God's love through prayer and positive thinking.  Isaac has always had such a wonderful team of warriors carrying him through these hard times.  THANK YOU ALL!

So, for all the updates, we drove out to Baltimore with Gabe, Isaac and baby Micah yesterday.  The girls are staying with Grammie and Papa and they will drive out Saturday when the get keys to the house.  We were admitted today to do bowel prep for Isaac.  He has been such a trooper.  The best part of his day is playing Xbox all afternoon.  He, dad and Gabe are all working on conquering Spidawick! The worst part he will hands down say is the NG tube which is getting the "Go Lytely" medicine to clean out his bowels.

Surgery will be early and they will likely take him down to surgery prep at 7:00 am.

Thank you again for your support and love and prayers.  Here are so pictures from our trip out, our night last night at the Children's House and some hospital time today.

So many wonderful gifts for all the kids!  They will not be bored!

This hospital is huge!

Game time last night at the children's house.

The children's house is so fun!

Isaac is soaking up some xbox time in the hospital.  Micah is cheering him on. (or maybe just trying to chew the controller!)

The girls are having a blast with Grammie and Papa.