First Night and Day at Home

Well, the first night at home was an adventure. The last drain Grayson has exiting his body was not functioning properly. So he was not comfortable at all. So there was a lot of up and down, waking, semi-sleeping activity going on. Then towards the normal morning hours his drain quit working all together, cause his bladder to fill with no exit! Fun, eh?

So we called the Doctor and the Doctor said, "No more monkeys jumping on the bed!" Just kidding. The Doctor had us come to the Primary Children's Emergency Room so they could flush the drain and show us how to do the same if needed. That did the trick. So a 1 hour trip back to the hospital saved the day!

This quick trip this morning also allowed most of us to attend the Lehi Round Up Parade to watch Victoria and Mason March in the Lehi High School Marching Band

Mason Marching


Victoria Marching

Tonight Mike, Nona, and Paul McCormick (Bea's sister and her family) came to visit Grayson. He showed them the ballon man someone brought him:



Mike, Nona, Paul, and Grayson after a nice steak and corn on the cob meal.

Grayson is Released to Go Home!

Yeah! Grayson came home today around 1:30pm! We rushed up there this morning to bring him home, only to wait, and wait, for the release paper work and supplies to be finalized! But we had a relatively uneventful trip home, with a stop at McDonald's to get a meal for one and all. Here are some photos (posted later) of our last hours at Primary Children's Medical Center.


Transformer Hypnosis (watching Transformers movie while waiting for discharge to finalize)


Almost to the elevator!


In the car ready to blow this joint!


Welcome Home Poster at the house!

Night #9 Update

Yup! Grayson is still in the hospital. The children and Grandma Fredda came up with me to bring Grayson home tonight. However, when we arrived we were informed Grayson had a fever and would not be going home tonight. He was very disappointed and so were we.

We brought Grayson a McDonald's happy meal and he was happy to eat the fries.



He is still not eating much but enjoyed the fries. Shortly after this Dr. Hadley (Dr. Wallace's resident) came to fix his stint drain. It was constantly coming out and was not working well. Grayson was very apprehensive about getting this tube fixed because it would require a stitch in his belly to hold the tube in place. But in the end it all went well. It is working much better than the previous drain and he is feeling so much better now.

We went for a walk. Here is Grayson walking outside his room.



Once his walk was done we took everyone downstairs to find the tile in the wall which Grayson and I painted during his last hospital stay. They gave children an opportunity to paint a tile, which was later fired, and placed in the wall decorations of the Neurosurgery Unit on the second floor.




Grayson's Tile (Cat in the Grass)


Grayson by his tile in the wall

Grayson also received some mail which we brought from home. One was a letter from his Grandma Stewart. She sent him a love/get well note on a paper airplane. Here he is trying it out.



My Aunt Sharon and Uncle John Beck were here visiting after attending the Salt Lake Temple. It was so nice to visit with them. John helped me give Grayson a blessing to help him get better for the release from the hospital tomorrow.


John and Sharon Beck


Kevin and Merica Chapple and family also visited Grayson today.


We visited the nice patio on the 3rd floor and enjoyed some outside time together.

Sitting on the Patio


Bea and Vixy fighting over a chair on the patio! ;-)

On our stroll we went to the "tube", a walkway from Primary Children's to the Moran Eye Center. Here we saw over the Salt Lake Valley and witnessed the start of a great sunset.



Hopefully tomorrow morning we can bring Grayson home. It would make for a great Friday!

Have a great evening!

Morning #9 Update - Release imminent

Grayson had a rough night again with bladder spasms keeping him up most of the night. Also, his last drainage tube kept slipping out but needs to stay in for another couple of weeks. So they taped then finally stitched the tube so it will stay in place and keep the draining under control.

We asked for a Neurosurgeon to check Grayson's variable shunt setting. In the past when Grayson does not want to eat, it is a symptom (strange as it may be) that the shunt is not working properly. So, they found the shunt setting was at a 1.5 setting and it should have been at a 2. We will find out in the next hour if this is what has been keeping Grayson from having an appetite!

Also, we are planning on bringing Grayson home this afternoon/tonight! Yeah! He is ready to come home and so are we.

I will keep you posted on his progress today. Thank you for your thoughts, concern, and prayers.

Night #8 Update

Grayson has really struggled with eating. They want him eat and drink alot but he does not feel up to eating much. Ironic that now he can he he does not feel like it!

They removed another of his stint drains was removed today so he is down to two left. He will go home with 1 still in and to remain for a couple of weeks.

Oh, almost forgot to mention that if Grayson can drink and eat enough tonight and tomorrow, that he might be able to go home tomorrow evening! That would be cool!

Grayson was visited by many people over the past few days, not all of them had the privilege of having their photo taken ;-) !

Tonight Mark and Stephanie Tuckett (Primary President) stopped by and brought Grayson 2 Gian Get Well cards from the Primary classes at church.


Mark and Stephanie Tuckett


Grayson reading the giant Get Well card.


Poster Vixy made for Grayson.

Grayson just had a Rootbeer Float brought to him and he really enjoyed eating some of it. (Me too!)

Morning #8 Update

Grayson had an interesting night/morning. His IV was giving him fits and so they had to redo that. Then his arm was having major spasms and so they used warm towels a couple of times to get his arm to cooperate.

This morning the doctor removed one of the ureter drain tubes. This brings Grayson down to 2 tubes exiting his body on the left side. He is walking easier now and enjoying his first breakfast in the hospital.

I hope to go up and spend the night with Bea and Grayson tonight. Bea has been up there for most of the nights. It is nice to have family and friends to support us during this life event.

Thank you all for your visits, concerns, and prayers!

Night #7 Update - Great News

Today started out rough for Grayson. He had stomach pains due to gas buildup in his abdomen. So he was very uncomfortable.

However, later in the morning, he was able to rid himself of the gas a felt much better! Then he went for a couple of walks, further than he has gone up 'til now.

Then the doctor came by and helped him to stand up taller when he walked and gave him the order to eat food! So his first request was for French Fries, then pudding, then shrimp! Not all at the same time but over time. Grayson tells me that he was not able to eat as much food as he wanted because his stomach would not allow him to do so!

Grayson is working toward coming home Friday. We are excited and pleased with how well he is progressing and healing. We are so very grateful for all the visitors, prayers from all of you, and for great doctors and nurses.

Give you an update tomorrow morning!

Good Night!

Release Date Update

One more thing: It looks like Grayson will be able to come home either Thursday night or Friday morning, if all continues to go well.

Cool! Just in time for Lehi Round Up Days!

Morning #7 Update - Walking...

Grayson had some great visitors last night which really made him smile. The Todd & Rhonda Mortensen family visited for a while and helped Grayson smile quite a bit. Todd had great jokes to keep the room alive. Thanks Todd. (Sorry for the bad quality, had to use the cell phone camera)







Grayson had the catheter removed this morning and thus was able to walk to the bathroom twice, and down to the end of the hall outside his room! This is awesome. However, all this movement causes more pain. Also, he had a fairly rough night. So this morning is difficult for him.

Nice Update...

Good news! The doctor visited this morning and gave us a forward look as to what we have coming up this week. So, starting today, they will remove one of the tubes from his abdominal area per day. Thus by Wednesday he should have no tubes draining from his body. So, if all goes well with each of those extractions, we are hoping he can come on Thursday. Hoping.

Grayson is doing well today and Bea is with him to help him with his walking and moving about.

Morning #6 Update - Water!

This morning Grayson was given the go ahead to drink today! His first request was water. The doctor wants Grayson to get out of bed and move alot today.

Yesterday after the family left, Grayson had many visitors. Sorry we don't have photos (I accidently took the camera home with me). The visitors were, Grant & Valerie Robertson and family, Shala Folkman and family, Mark & Jennifer Murdock and family, Colette Casper, and Lynn Tyler (neighbors). Thank you to one and all for supporting our family and Grayson with your visits, and prayers.

Have a great day! Keep Smilin' :-)

Sunday at Primary Children's

The family went to church in the Hospital afterwards we hung out in his room. Here are some photos of fun stuff we did while visiting Grayson.

Here is the family at Primary Childrens after Sacrament Meeting.


Vixy Helping Grayson while waiting for the Primary Lesson to come to his room.


Vixy and Grandma Fredda passed the time playing with play doh.



Mason was excited to read the comics to him, but not to have his face in the picture.


This is the room placard to Grayson's room for anyone that wants to visit, it is room 3080!


Bryson thought it was fun to try out Grayson's bed while he was sitting in his wheelchair.


Vixy creates a Play Doh version of Grayson


As for Grayson's progress. It is getting easiter for him to get in and out of bed without too much pain. He is having what they call bladder spasms which can be painful. He still cannot drink water or eat anything.

Night #5 Update

Grayson has done really well today. Definitely better than yesterday. He did really well at walking 4 times today. He would walk from the bed to outside the door, then back to the chair where he sat one time for 2 hours. This is excellent news and we are happy for this advancement.

We are hoping all this movement will help his bowels to begin working properly so he can begin eating and drinking.

We as a family will be attending church at the hospital with Grayson tomorrow. It should be nice to have a different Sunday schedule. We then plan on eating lunch and hanging out with Grayson, playing a few games and being there for anyone who decides to visit.

Talk with you tomorrow.

Morning #4 Update

After a long day for Grayson of anticipating and experiencing pain, Grayson had a great evening. He had a great attitude, even doing his breathing exercises on his own, going like a gangbuster!

This morning, while asleep, he said "Ow" alot. His belly is distended and so they are once again restricting his diet to candy suckers and the wet sponge/swab routine. Once he is able to get his bowels moving again. Once that occurs he should be more comfortable.

Today, Grayson also is under Dr.s orders to get out of bed and walk 4 or 5 times. This will help his bowels to begin to move again.

I am going home for the day and Bea will be staying with Grayson through the night.

Have a great day! I will post again this evening.

Night #4 Update

Grayson just got off the phone with Grandma Stewart and told her goodnight. He has also eaten about 5 DumDum suckers! He is able to drink clear fluids so that is very nice.

Here are some pictures which Bea took while Jerry was at work today. These pictures include those that visited today.


The Beck Family, Emily, Cooper, Cameron, Ashlyn, Alyssa, and Kaiden


Aunt Jessica Talley and children, Zoe and Tysen


Aunt Sharon Beck with her grandchildren, Parker and Carter Beck


Here is a shot of the ocean themed halls of Primary Childrens Hospital


Look! Grayson with NO Feeding/NG Tube!


Grayson playing Madden '08 Football video game with his oldest brother Mason. (Yes, they have PlayStations in the room!)

Good night. Write to you in the morning! Grayson says Good night to all!

Many Visitors

Grayson has had a rough day. He has walked a couple of times today, but not without much grief and pain on his part. Grayson is currently playing video games with Mason and Bryson.

He has also had many visitors today, Aunts, Uncles, cousins, 2nd cousins, Grandmas, brothers, and sisters. It is nice for him to have some distractions.

He has also had some difficulty with itching due to the pain medication (Hydromorphone). They give him Benadryl to hopefully calm the itching.

Please keep him in your prayers as he works through the pain of trying to stand, bend, and walk with a belly that has been cut and opened up.

Thank you all for your support in visiting, praying, and calling. Have a great weekend. We will continue to post updates and photos as necessary.

First Drink of Water

This morning, around 7:20am, Grayson was given his first drink of water. He is quite drowsy today. They have him on Hydromorphone (pain killer) which has a side effect of itching. Today it finally started to cause him itching. I guess he was itching all over his body so they gave him some medication to control the itching, but then makes him quite drowsy.

Today he is worried about doing a little bit of walking and how much that will hurt or not. Today at 2pm or so, I Jerry, will take the children and Fredda Garvin (Mother-in-law) to see Grayson! I will post pictures later.

Feeding Tube Gone!!!!!!

6:00 PM- Grayson calls the family at home and tells them that they have removed the NG tube! Grayson is hoping that he will be able to eat a little tomorrow. We will post a picture of Grayson without the feeding tube tomorrow!

Grayson Out of Bed!

Grayson is doing so well. He is following doctors orders by getting out of his bed and into the easy chair! He was a little hesitant at first because of pain. But it only hurst as he first sat up in bed. Here is Grayson in his "throne."

Second Visitors

Paul and Julie Bean were kind enough to drop by and say hello to Grayson. They also gave him something to do when he feels more active, Lego snap together cars. Here are the Beans.



While they were here the nurse started to tempt Grayson with talk of slushies tomorrow if his digestive tract behaves itself today. They have clamped the suction tube from his stomach now. Doing this will tell us if his digestive tract is ready for a slushie tomorrow.

Doctors Make the Rounds

Dr. Wallace, and Dr. Wicher dropped in on Grayson to see how he is doing.

They ordered the NG tube to be clamped off to see how his stomach/bowles are doing on their own. If it is processing the fluids the stomach creates on its own, then they will remove the tube tomorrow. They might even start him on clear liquids.

Grayson is also doing well with the breathing exercises. He will also try to get out of his bed and sit in an easy chair this afternoon.

First Visitor!

Grayson was looking forward to his first visitor and look who shows up! His Aunt Amy Dalton. It was nice to see someone besides doctors and nurses.

Here she is with Grayson:

Parched

Grayson is allowed a sponge to be dipped into water (kind of like a sponge Popsicle) and then rubbed around his mouth. He seems parched, and who wouldn't be! So he tells his mom to make sure and NOT knock off any of the water and to make the sponge "more wet." I am sure these next few days without water or food will be difficult for him.

He also has a slight fever again. If it does not go away they will try some more Tylenol.

Grayson Giving His Update

Here is Grayson telling his Brothers and Sister how he is doing. We captured this video earlier today but had troubles posting it.

Post Surgery Day #1

Night #1, post-surgery, went well. Grayson is mostly sleeping and when he is awake, he tells us he is hungry and thirsty. But all we can give him is to rub a wet sponge on the end of a stick in his mouth. No ice chips, no water, no food. Bummer! So, Bea and I are trying to eat and drink outside his view/room so it does not tempt him more than his body is already doing so.

He is anxious to get out of here and go home, and so are we. We will just take it one day at a time.

Grayson had a fever this morning, and so they gave him some Tylenol, it brought the fever down quite quickly. They also have him breathing into a little device 10 times an hour to keep him from getting pneumonia.

It is fun to watch and be with him. He is constantly asking very probing questions about what the doctors or nurses are doing, and why. He is very accepting of his situation and does not complain. What a blessing. From our room you can hear other children scream or cry on a frequent basis.

Grayson Wakes Up Briefly

At 12:30am Bea was asleep and so was I. Then I hear the voice of the nurse, Paul, telling Grayson to quit pulling it out. I jump up, and out of the "bed/chair" by Grayson's bed and move to stand by his side. He is pulling his NG (feeding/vacuum) tube out from his nose (remember the one they took 5 tries to get into his stomach).

This NG tube was put in during the surgery and it suctions the stomach fluids so they do not build up and cause him to vomit regularly. This tube and the suctioning of his stomach contents will need to continue for the next couple of days while his bowels decide to wake up from the surgery. Once they start to work properly again then the tube can be removed and he will be able to eat something again. Yes, Grayson cannot eat anything until later this week. Ugh! The little guy woke up and said he was hungry. I had to tell him it would be a few DAYS until he could eat. That was so hard! He has not eaten anything solid since Saturday, June 14th! What a trooper.

I am grateful for the medication which keeps him in a semi-sleepy state. This will help the time to pass quickly for him. I fear for tomorrow when he wakes and wants to eat again. All I can do is pray that Heavenly Father will bless him with peace and comfort during this time of no eating. I am also grateful both Bea and I can stay with him tonight.

The nurses will be in and out of the room tonight up through 2:00am, and beyond, giving different medications, pain and antibiotics, as well as others. Should be an interesting night. Bea is sleeping somewhat peacefully for now.

They're Done!

Approx. 8:20pm they called and said they were done! So after 9 hours of surgery they completed everything and Dr. Chad Wallis is very please with how things went. The only part that gave him grief was trying to use the appendix for the monty stoma tube. His appendix was tucked up underneath his liver so it was very difficult to get to and when they did it was misshapen and they could not use it. So he had his appendix removed. Instead of the appendix they used part of his bowel to create the monty stoma. That is why the surgery took a little longer than expected.

However, it is all done now. The doctor told us he should be able to go home sometime around mid-week next week if all goes well.

Grayson is currently resting in the Recovery room and we hope he does not experience too much pain. We will keep you updated.


Thank you all for your prayers and support. It is awesome!

Surgery Update #6

8:03pm - Update from the O.R.: They say this is the last update for the night before we actually get to see him. They say all is well and they are closing him up right now. It should be another 30-45 minutes until they are complete. This is the last update from the O.R.!

Surgery Update #5

7:03pm - Update from O.R.: Still going strong. They are close to closing and they say it might be another hour before they are done. Getting close! :-)

Surgery Update #4

5:45pm - Update from the O.R.: They have finished the bladder neck reconstruction and are moving on to the next and final procedure, the stoma. They say it will take about 1.5 more hours. We are going to get some dinner while waiting for the next update. We will update you when we know something more.

Surgery Update #3

4:12pm - Update from O.R.: They are done with the bladder neck reconstruction, and the repositioning of the Ureter tubes. Now what they have left is to create the stoma. They tell us it will be another 2 - 3 hours. So we might be done by 7:00pm-ish. So far so good! Thank you all for your prayers.

Here is a picture of Bea and Jerry in the waiting room.

Surgery Update #2

2:37pm - Update from O.R.: Things are going well, his vital signs are still looking good. They are still working on the Ureter repositioning. We will post another update when we get then next update from the O.R. 

Bea and I are waiting in the Inpatient surgery waiting room. Between the last update and this one we ate lunch and I worked on a video for the Youth Conference we just completed last week.

Surgery Update #1

1:00pm - Update from O.R.: They have done the test to determine capacity of the bladder to see if they needed to augment the bladder with a piece of the bowel. After filling the bladder and seeing the capacity, the do NOT have to augment! Yeeee haaaaaaw! One less thing to worry about. Now they will move on to the rest of the operation.

Grayson heads into Surgery

At 11:20am Grayson was wheeled through the doors to which parents are not allowed. We prayed with him while waiting for the anaesthesiologist to visit with us. After visiting with the "knock you out doctor" we sent Grayson through the doors no parent can enter. There were a few tears shed, but in the end we know the good Lord will help the Doctors, the Parents, and Grayson through this long day.

Here is what they will be doing:
* Bladder Neck Recontruction
* Creation of a stoma using the appendix
* Repositioning of the Ureters
* Possible bladder augmentation using a piece of the bowel.

We will update as they update us, which should be every hour to hour and a half.

Day of Surgery

Well, Grayson ended up having a good nights rest. We got to sleep around 12:30-1:00am. It could have been worse as they were scheduled to come in every hour and give him enimas. But he was completely cleaned out using the 4 liters of "GoLitely" pumped in through the feeding tube.

Because of all the grief getting the feeding tube in (which usually "just goes right in") they gave Grayson a cool quilt. It is 4th of the July themed and he really likes it.



Grayson also spoke with his family on the phone this morning before heading into surgery.



Nurse Dave is awesome and works well to help keep Grayson happy and ready for the big surgery.

Success with the Feeding Tube

Success! They ended up using a flouroscope (live xray) to help guide the feeding tube into his stomach. He was a trooper and shortly after the procedure was smiling like you see in the photo below. He is really living up to his middle name, Helaman, by being brave and strong.

After all was said and done Grayson said, "Mom, I am so thankful they have X-Ray machines to show us where things go!"

Trouble with the Feeding Tube

They needed to insert a feeding tube in Grayson's nose and into his stomach. They need this because Grayson needs to take in 4 liters of "GoLitely" to clean out his bowels. However, he cannot seem to swallow it without gagging. So, the feeding tube was the next option. However, it keeps getting stuck in his sinuses. So, not that the feeding tube is not working, they are consulting with the doctors to see what we can do to get him cleaned out.

Here is Grayson with the Child Life Specialist, Megan, who has helped him work through this difficult situation.

Grayson Checking into Primary Children's Hospital

At 12:00 noon on Tuesday, June 17th, Grayson is admitted into Primary Children's Hospital. Here is Grayson weighing in and kickin back playing video games

Since we were at Primary Childrens last, they have rethemed the Hospital in an Ocean theme. They have the floor inlaid with waves and ocean creatures. The walls and ceilings are painted with nice sky, clouds, and birds. It is much more pleasant than the previous theme.

They are going clean out his bowel in preparation for the surgery. Since the medicine to do this is nasty tasting (even though Pineapple flavored) they find that using a feeding tube is easier. So, they will shortly insert a feeding tube.

A little bit of history/recap for everyone. Grayson was born with Spina Bifida and this usually causes bowel and bladder problems. So, at this point in his life we are working on the bladder issues. His medication to control leakage is no longer working. Along with this, he has grown out of the largest size pull-ups that they produce. He/we would love to be out of pull-ups due to his age and the whole social situation. So, the next step is Bladder neck reconstruction surgery. They will also augment the bladder with material taken from his bowel in order to increase the capacity of his bladder. After the surgery, he should be continent! Yeah!

Grayson's Bladder Surgery

We will be stating the progress of Grayson's bladder surgery on this blog starting Tuesday. Stay tuned for photos and events.