Busy week

Daddys surgery went well.They were able to blast the stone and take out all the pieces of it. He is resting well at home. Still having some pain but the meds seems to be doing their job.

Broc now has another complication with the steroids he is taking.Its causing his blood sugar to raise so high that he is spilling glucose into his urine which is causing him to pee every 5 minutes. He is also extremely thirsty.

We are on close watch this weekend to look for any signs of high blood sugar.It could be an ER situation if we don't watch him closely.

The steroids are also causing some mood changes and pain. Hoping they are decreasing the inflammation in his brain and he wont need another course of them.

He is still running fevers from the inflammation which is causing some issues too.

Coming up Broc will be having his 6 month check up for his bypass to check on his leg length and graft and he will also have his yearly cardio check up. We are hoping for good results on both of these check ups.

Thank you everyone for all your support,love and prayers.

Back to school night

Tuesday we had Uncle Scott come over to watch Broc so we could take Mark to school for back to school night.

I really wanted it to be all about Mark. As a parent it is so hard to see your time so divided without letting the other child feeling not left out. Little Mark has had an extremely difficult time going to school without his brother. He has had so many anxiety attacks since Brocs surgery. One was so bad that Daddy had to go and get him from a friends house in the middle of the night.

Little Mark Mommy and Daddy are so proud of you for being such a big brother. Your Buddy will be joining you very soon on the school bus and then things will be back to usual. We know it's so difficult for you to understand all of this right now.

This is Little Mark sitting at his desk. He loves his new teacher and his class. He was very eager to show us around his classroom and his new binder. He does have some old friends in his class so that made it a little easier for him.

Mark waiting for the bus watching his videos on www.jw.org. He loves watching these before school as it puts him in the right frame of mind and makes him brave enough to face anything during the day.

MRI and Spinal Tap

Yesterday Broc and I went down to Riley for his MRI and spinal tap. Both him and I were very nervous as he has never has a spinal tap before. We have done the MRI thing a bunch of times. We had a quite a few visitors yesterday which was very nice. I got to meet another Chiari mom too which is always lovely to compare stories and learn from each other.

Trying out his mask with his favorite flavor AW Root beer. He went under watching Rescue Bots on the ipad. He gets a little feisty going under so it normally takes a few of us to hold him down.But I just talk to him and reassure him while holding the ipad so he can watch his videos. But believe me its really no fun having him crying out to me to pick him up and take him out of there. He is truly such a brave boy!!  

Dr Boaz said that nothing jumped out at him from the pics they took. He said that they made a lot of space for his brain to grow properly and was very happy about that. He was however very shocked at the numbers that he got back from Brocs spinal fluid. He was extremely surprised that Broc reacted to the synthetic patch that he used.

His numbers showed an inflammatory allergic reaction. He has given Broc a RX for steroids. We are hoping that this will help calm down the inflammation and also help reduce the fevers. Overall we are hoping that it will help Broc to feel better and slowly regain all his energy.

He is still not eating all that well but they have said the steroids will increase his appetite too.

We are hoping to start Brocs online schooling soon as well as his teacher visits to the house.

Unfortunately the steroids will lower his already compromised immune system so we have to keep a very close eye on that. Lots of handwashing and sanitizer will be needed.

If anyone is ill or has been around people that have been ill please don't visit. This is not to be rude but we really need to be careful about Broc getting ill.

We will see Dr Moustafa today as Broc will be getting his stitches out and then we will speak to him about the precautions we have to take.

Lastly please pray for Daddy Mark as he will be having a small surgery on Friday too.

Thank you to everyone for all the love,support and prayers.

More complications with Broc

As many of you know Broc has been running fevers since he came home from surgery. Our thinking is that it is from the patch. We have been drawing his labs every 3 days and his numbers were going down until today. They have doubled since Friday!!! Not good. Coupled with him walking on his toes since surgery,the high numbers and the fevers that wont leave, Dr Boaz is concerned about a few things so Broc will be going down to Riley on Wed for a sedated MRI and spinal tap.

We are really hoping to have answers by the time we leave and a plan for our Buddy so that he can start to recover.

When Broc came home last Monday he was surprised with a cake from his friends. Thank you Baker family for the lovely cake. Broc even ate the last piece.

We appreciate all your prayers and support during this time.

Marks MRI & Third Grade

Due to all the new findings with Broc , Dr Boaz wanted Mark to have a spinal MRI done as well to rule out any tethered cord or syrinx.
He was very nervous about having the MRI cause if he did have something he would have to have the same surgery Broc had.

He did so well during his MRI. waking up was a little more tense as he had a lot of nausea. They ordered another shot of zofran for him and he was felling much better.
After the MRI we went up to visit Dr Boaz who gave us the wonderful news that Marks MRI was clear of any abnormalities except for his low laying tonsils or Chiari Malformation. For now he said we are leaving that alone. PHEW!!!! Mom can have a break for a while.

During all of this our minion also started 3rd Grade. He was very nervous to go by himself.He is always used to having Broc with him on the bus. He had a lot of nerves the first day, but he did it. He had actually picked out his shirt at the beginning of Summer to wear on the first day of school and then come to find out he is in the Minion Class. His teacher was so tickled that he wore that shirt.

Fevers continue .....

Brocs fevers are still going on so we went to our local hospital for a work up. Thank goodness no infection but as we expected Brocs body has reacted to the patch they used. They specifically used synthetic so that he wouldn't react but he still did. That's what is causing the fevers. He will have labs every 3 days until his labs go back to normal. 
The same thing happened when he had his leg bypass surgery so fortunately we have dealt with this before. We guess Brocs body does not like any foreign bodies. 
Thank you again for all the prayers. 

We are home

Sorry I have taken so long to update you all. We came home yesterday late afternoon. Things have been crazy since we got home. Mark and I have been trying to keep up with the laundry and house things. Broc is a 24/7 job. You have to keep an eye on him at all times. He is very clumsy she trips very easily. His feet are not supposed to leave the ground unless he is sitting,lying down or walking for the next 5 weeks. He still has a lot of neck pain and stiffness. He is also spiking fevers. If he continues with his fevers tom we will go the hospital to have a work up done.

Thank you to everyone who came to visit, sent us a card, texted, called or even prayed. We reason appreciate all your loving support.

Post op Day 4

Broc and I had a good night which means we hopefully have his pain under control. It does mean that daddy and I will be up every 4 hours doing all his muscle and pain meds.
Eating is still not great he only ate 1/2 a sausage patty for breakfast. At least he is drinking well.
He has started itching really bad so they have ordered some benedryl for that. We cannot afford for him to scratch his incision. He may not even touch it due to risk of infection.

We are hoping to come home tomorrow intime for Lil Mark to start school on Tuesday.

Thank you everyone for all the love, prayers and support.

Post op Day 3 - warning incision pic.

Broc had a rough night last night with pain. Everytime they moved him around he cried out in pain. Neuro wants him to be able to move around with out pain so they are trying a different pain schedule for him to see if that works.

He woke up with a very sore throat this morning. This is something new that started today so we are watching to see if he spikes a fever with it. It could be his reflux causing it or he could be getting a virus. He has not eaten anything today except for ice chips.

PT came in this morning and worked with him and he did really good. He walked a bit, then went to the game room. I decided to stay in the room this time to give them some space. PT said he did really well. Then he came back to his room to work on neck exercises.

He was exhausted so asked to lay back down and is now sleeping again.

His dressing came off yesterday and I will post a pic at the end of this post for those who like to see everything. The incision is much bigger than we expected and he has many stitches too which will have to be removed after 2 weeks. Not looking forward to that at all. It may take a couple of us to hold him down for that. I think I will make it a later app so that daddy can come with us.

We should be coming home Monday. He will be home from school for 4 weeks as they are worried about him falling on the playground or getting bumped. He will also have to strengthen his neck muscles to hold them up long enough to copy from the board, to read and write too. He may not carry his back pack for 4 weeks either. Hopefully we can work with the school to do some school work at home so that he is not completely behind the other kids.

In general Broc has a hard time focusing and copying from the board and handwriting so it will take a lot more effort on his part since he has all the effects of his surgery to deal with too. Lots of patience and time will be needed for him to recover well.

Thank you for all you kind thoughts and prayers about Lil Mark too. Daddy said he is doing really well this morning and they are spending some quality time together. Him and his Buddy are so close that when anything happens to either of them it really effects them. They have such a wonderful bond of love.

Post op Day 2.

Sorry this post is so late. Broc had a good night last night. I did too. We slept really good. Today he started eating a few spoons of ice cream. They have turned off his IV to see if he will eat and drink more. He did so well with P.T. today.

He also had someone come in and play Lego either him on the bed. We are really trying to keep him up and awake. He is so tired from PT this morning.

Little Mark is not feeling too well so daddy had to go get him from the other family he ws staying at in the middle of the night. He was gonna take him to the hospital cause we thought his gut had shutdown but we think he has a virus. Spending time with daddy and some TLC will do him some good. Thank you to everyone for your e cards we got them today. Your love and support is felt all around us.

Post op Day 1 - He did it !!

We are so proud of him. It took every ounce of energy he had but he did it. He got out of bed,walked 3 steps then sat in a chair. He was in so much pain and I felt terrible, but he pushed through it and did it! We are so proud of you Buddy!

    

Post Op Day 1- After Dr rounds

PICU and Neuro Team came in and were very happy with his night. They said that fevers and vomiting are to be expected so that's all par for the course. They have increased his zofran which is the nausea med to help with the vomiting. They are also keeping his pain meds on a schedule because by the time he says he has pain it's too late and his pain level is already to high.

He lost his art line, foley and 1 IV today. He is so happy to be able to scratch his own nose and ears. It's so hard to see our little guy in so much pain. Every time we have to change his sheets or pillow case he cries out in pain. He is sleeping a lot and that is great cause thats the best way for him to heal. Both teams are very happy with his incision. His incision is about 4" long and still covered with a dressing.

He will go for an ultra sound this afternoon to check for any blood clots in his legs. Not really sure how he will travel in a wheel chair down there but the nurse reckons he will be sitting up by this afternoon. He cries out in pain when we just move him so not sure how this will happen.

Today is a day of rest for both of us. I'm just hanging out and jumping up whenever he needs me and Broc is resting with lots of pain meds.

If he sits today I will post a pic of him.
Thank you for all your support and love.

Post op day 1.

Broc and I had a quiet night except for his fevers and vomiting. He ran a fever all night, then it would break with Tylenol stay down for about half an hour then start going back up again. The vomiting is so sad to see. We are going to have to buy him another frog pillow pet. Unfortunately we could not save it. We also lost a small frog in the mix too so we are hoping that child life will have a similar frog to replace it because Broc knows what all his frogs look like and will know if one of them are missing.

Right now it's 5:30am and his fever is climbing. We are waiting for 7:30 to come so we can give him another dose of  Tylenol. He is being so good and so polite. Not looking forward to getting him up and walking today. I will have to put on a brave face for him cause mommy just wants to hold him tight and take all his pain away.

Once the Drs round we will have a plan for the day. Thank you for all your love and prayers.

Last surgery update

Broc is done. Dr Boaz came out to talk to us. He said everything went as well as can be expected. Due to his reaction with his leg bypass surgery to the patch they used a synthetic material for the patch so we are really hoping for no adverse reactions.

They only had to take off C1 and left C2. His said they were really careful to even leave the muscle attached to C2 to give it more stability. He will spend the night in PICU so they can monitor his pain more carefully without having breathing issues.

We are hoping for a good nights sleep with no adverse reactions.

Surgery update 2 & 3.

There really was not much to update on update 2 so I put them together. Update 2 everything was still going well. Now they are busy closing him which could take an hour then he will be in recovery for about an hour before we can see him. After that he will be moved to PICU where he will spend the night. Hopefully tom he will be moved to the neuro floor.
Thank you again for all your prayers. We have really been feeling the love from everyone.

Surgery update 1.

Thank you everyone for all the prayers and love that you have all shown. We were bumped till 11:45. Surgery only started at 1:10pm. So really no update surgery wise yet as. All his IVs have been placed as well as his arterial line to monitor his blood pressure.

He did so well going into surgery that we didn't give him versed. He was so excited to get going. He smeared his mask with root beer flavor. His favorite.

Sorry there is not much of an update. I will update again in an hour.

Brocs Upcoming surgery

As many of you know Broc will be having brain surgery next week. He will be at Riley Children's Hospital. If you would like to send him a postcard via the hospital all you have to do is click on this link and it will be delivered to his room.

http://iuhealth.org/riley/for-patients-and-families/patient-postcards/

We are not sure how long he will be in the hospital. We are hoping just under a week baring no complications.

I will update his blog as the day goes on.We should get an update every hour that I will post. Feel free to text too if there are no updates. Sometimes we may be a little busy but we will try and keep everyone up to date.

We appreciate all your prayers and love on Wednesday as he undergoes his surgery. Here is a pic of his new hair cut that will make things much easier after surgery.

Thank you for all your continued love and support and prayers.

What a wonderful weekend

Last weekend we attended the Regional Convention in DeKalb,IL
It was entitled "Seek First Gods Kingdom". We were tied in with 11 other Regional Conventions and 1 International Convention in Landover,Maryland. On Sunday the last day we had over 116,000. It was amazing to see all the International Delegates and to hear all the wonderful talks given by some special brothers.
There were a lot of new releases too but because all my friends and family around the world have not been to their convention yet,I am not mentioning or showing any pics of any. We want it to be as special to them as it was to us when they were announced.

Here are some pics from all 3 days.

Some of the pics are not clear but I wanted to capture all the wonderful moments that we shared with the International Delegates.

What a wonderful and spiritually upbuilding program that was delivered.