Day 2 in the hospital

Today was a busy day. We had a few Drs come in early in the morning then a few more came in around mid morning. By then they still had not heard from any Drs but they did have the results of the KUB and his CBC. His KUB was almost the same as yesterday still full of air and the contrast was still there nothing had moved. Broc was still having ice chips and IV fluids. His CBC was not good this morning as all his numbers had dropped again.

Once again Broc is bordering neutropenia. He does have some energy which he uses to play the wii games. Looks are very DECEIVING!!! The Drs that know Broc can tell that he is not his usual self. We did have fun playing bingo today as well as Trivia. Broc did so well in answering most of the trivia questions. It was a fun activity to take his mind off of being in the hospital.

We did learn later today that Broc is fighting Cytomegalovirus (chronic or a re-activation) as well as Epstein Barr Virus (chronic or a re-activation) and possibly Parvovirus B19. We are still waiting for the Parvovirus results to come back.

For any person 1 virus is enough to deal with but 2 possibly 3 is crazy!!  They are not treating the Cytomegalovirus as the treatment can be very toxic to your organs so unless you are severely ill with extreme high fevers will they treat you with it. They did however draw a lab to see how much of the virus he does have in his body so depending on that number they will decided what to do. There is no treatment for the EBV. If he does have the Parvovirus we are not sure what the treatment for that is either. The plan for now is to see what his CBC looks like tom and go from there. He did run a small temp this evening so they will keep an eye on that.

Onto his feedings. He did pass a little gas this afternoon so we started his feedings at 5mls per hour. He is doing really well so she is at 30mls per hour already. We are hoping that he will tolerate them well throughout the night.
Dr Zaidi did come by to talk with me about his motility or the lack ther of. Broc has a new dx of intestinal dysmotility. We will be going to Cincy for testing to see the extent of his intestines and how badly they have become. We have a new plan in place that when Broc gets ill with a virus he is to go on gut rest which is stop the formula and only run pedialite until the virus is better and his intestines are moving again. If he cannot handle pedialite due to severe pain and dry heaving and nausea then he will have IV fluids at home. That is the main reason he ended up in the hospital was due to severe dehydration. Our main aim is to give Broc the best quality of life. So far he has needed up with a pseudo obstruction every month this year. He cannot spend a week in the hospital every month. It is very unsettling for him, his brother and our family is separated once again.

If he is having really high fevers and there are other issues then we will come to the hospital but we are going to try and manage as much of his care at home as we can.

Once again we will be finding a new normal. Broc has a great team that really cares about him and our family too. We want to thank everyone for all your help,love support and prayers.

If you come and visit us at the hospital please make sure that you are not ill as Brocs immune system is very weak right now and it will be very hard for him to try and fight off something else.

In the hospital

Brocs labs were not any better on Friday. As you read in the previous posts he's been sick for 3 weeks now with low WBC and nuetrophils and Thursday he started with belly pain. Friday we went to ped to check spleen and liver and all looked good except he was very tender in his abdomen. Last night  we never slept at all and he dry heaved the whole night. I tried giving him gas drops,zofran for the nausea and Tylenol for the pain but nothing helped him. Around 5 this morning I decided to bring him to the ER. Normally I can handle him at home but we had to stop all his feeds and he wasn't taking in any liquids at all due to all his pain. He fell asleep in the car on the way here and by the time we got here he was completely lethargic. We moved him from his wheel chair to the bed and undressed him and he still never woke up. They even flushed his lines with saline once they drew his labs and he still never flinched.

Anyone that knows Broc knows that he hates the saline flushes as he can taste it in his mouth. The Drs got very worried and admitted him straight away. They gave us the option to go to Riley but we really wanted to stay close to home if we could. He has a great team of Drs here that know him very well.

His immuno came over to see him and speak with the Drs here. They have not decided yet on a treatment plan for the virus / infection but we are dealing with the pseudo obstruction first. The obstruction is caused by the virus /infection that he has.

He is not able to tolerate anything by mouth. We are trying ice chips but that is causing him pain too. We are hoping that by morning his KUB will be much better and some of the air will have moved through this belly. At the moment he has lots of distended bowel loops and air trapped.

There is a possibility that they have narrowed down the virus / infection but they want to do more testing and speak with Infectious Disease tom. If they decided to treat him then it could mean a long term treatment plan.

Hopefully tom we will have more answers.
Thank you for all the love, prayers and support. Thank you to all our friends bad family that have stepped in to help take care of Little Mark.

"Take Me Out to the Ball Game"

Last weekend although Broc was not feeling his best we got the all clear by his team to take him to a ball game. Every year the kids are encouraged to complete a reading challenge at school which gets them a free ticket to a Cubs Game in South Bend. All the kids get to walk on the field for everyone to see.

The boys got to meet Stu the Bear and Swoops the Eagle.

We ate baseball food. Ate popcorn, drank pop. Daddy and Mark had peanuts. I had coffee at the end as it got really cold towards the evening once the wind picked up.

After the game the boys were allowed to walk/run the bases with their parents.

It was a great day to be a family and spend quality time with the boys. Broc was extremely exhausted and in lots of pain once we got home. His pain was so bad that he ended up vomiting from the pain. Once we got him all settled in and cleaned up he said I'm sorry I got sick mommy but I really had a lot of fun today with you,Daddy and Buddy. 

It's the little things that count.

The past 2 weeks.

The past 2 weeks well actually since Brocs surgery his cbc has not been that great. We thought he caught a small virus in the hospital after surgery and it was going to be gone in a couple days once we got home. Boy were we wrong. This poor boy is still dealing with this VIRUS. The reason VIRUS is in upper case is because that is what his team are calling it. No-one has any idea exactly what he has.

He has been dealing with low WBCs , mild neutropenia and some other crazy numbers too. We have been keeping a close on them which means labs every week. He is back to having fevers all day. Brocs sensory issues have all returned. He is not able to sit still and focus, he cannot stop talking at times even if you ask him to. His balance is off and he is falling and tripping all over again. Its a very scary de ja vue for us as parents.

We really thought the IV treatments were working for him. He was only having a virus every 2 maybe 3 weeks. His sensory was under control. He was able to sit down and focus on a task. He wasn't falling or loosing his balance. Now we are back to back viruses. We had to give him steroids for a few days too in the hopes that it would calm down whatever was attacking his body.We are hoping that once we are over this extended virus things will go back to his normal. We will be looking at possibly changing his IV treatment or doing it more frequently.

We have been in contact with his heamatologist and she wants to only monitor him on a 3 monthly basis. There is some testing which we are parents would like to be done to rule out some things. His heamatologist doesn't see the need to do these now. We are going to make it a matter of prayer. His wonderful nurse has also done a ton of research about Broc to see if he can help us figure out what is going on. I fear once again we wont find an answer and we just deal with things as they come up.

We are going to be sending Broc to school unless he has a fever even if he has low numbers. Obviously if they are too low then we reach a dangerous level and he will not be going anywhere. He needs to be at school as much as he can. He is very far behind as he has missed so much this year. He is having an extra lesson every week to try and help him catch up.

He is doing very well on his feeds. We are still not at the rate that we need to be as this VIRUS caused his gut to slow down drastically. We are hoping that once he gets back to base line we will be able to increase his feeds again. He is still gaining weight which is great news.

We have been having lots of issues with his feeding pump and bags. We think its because he was too full and it was causing his pump sensor to not work properly. I finally called one of my special needs mom and she so lovingly came over to help me out. She showed me lots of tips on how to get around the pump and also introduced me to a few more things in the special needs world. It really was so nice to be able to talk about everything S.N. I was able to ask her lots of questions and Broc was able to talk with her daughter too who also has a button like he does. She was able to explain to Broc how she feeds and show him all her things. Although they are years apart she is double Brocs age they had something in common and connected.

Broc will have labs again on Friday and we are hoping that things will be back to base line for him. He is still getting tired as he is now going to school full day. The school and teachers are doing a great job of taking care of Broc and all his needs at school. Everyone is very attentive to his needs and interested about learning all there is to know about Broc. His classmates gave him such a wonderful welcome when we walked in the door on Monday.

Thank you for all your prayers,love and support. 

Unexpected ER visit

Brocs nurse came to see him yesterday to hear all about his recent hospital stay and surgery. He also came to do his dressing change on his picc line. Broc gets it changed once a week. He was to flush it but not get any blood return when he drew back so off to the ER we had to go to get some TPA in those lines to dissolve any clots that had formed.
Unfortunately there were a ton of people at the ER and some very sick ones too. We asked to be his away in a corner far from all the germs. We waited out turn and eventually went back. I also called his Immuno dr so he could let them know that he has CVID and needs to be taken back sooner than later.
Once we got a room the dr came in to see what the issue was. Next X-ray came in to make sure his line was still in the right place. They also checked for fevers to check for a line infection. Fortunately Broc has never had one yet.

The TPA is so expensive that once its determined that you need it it has to be defrosted and only then can they administer it. Once it's in his lines it takes an hour or more for it to work. We told the PICC team that we really needed to leave as soon as possible.

We know she did her best to get us out of there as fast as possible.

Thank you again for your loving and encouraging comments. Yesterday my emotions were done. Being at the hospital with Broc and knowing my boy was counting on me to be there for him. We are so proud of Lil Mark. He has had to deal with way more than any typical 8 year olds deal with. He was willing to do his reading with or without me last night. Thank you Jehovah for allowing me to be there for my boys.

We are home.

Sorry I have not blogged that we are home. Life's been pretty busy since we got home. Broc went and had labs on Monday. Again his WBC is low and his eos count is climbing. We are really hoping that we are not seeing a repeat of Aug 2014. It took us 7 weeks of steroids to get his eos count to stay down.

He is also dealing with tummy issues from the ABX that he's still taking. He is loving being home with his brother. They really missed each other. Thank you for everyone's love and support at the hospital and at home.

I will keep you all posted on his labs and what the next steps are.

Day 2.

Both Broc and I had a good night last night. I only woke up when the team rounded this morning at 6am so I know I had a great restful night.
The goal today is to walk around a bit and sit in the chair for a while too. Broc has had some nausea this morning which he got zofran for. He is trying so hard to cough to get his lungs open more. You can see his face grimace when he coughs. We also have bubbles for him to blow too.

His labs are not that great this morning. His hgb,RDW and hct are still low but coming up which is good. On the other hand his WBC and ANC are very low which is indicative of a bad viral infection. The great thing is his temps are not high only low grade. So once again he has everyone very puzzled.

His cortisol came back a little higher than yesterday but still lower than the range. We are not sure yet whether we will see the endocrine team or not.

Last night we had a fantastic nurse, Stacie she was wonderful. She totally understood Broc and all his complexities. It makes my life so easy when I don't have to fight for him every hour. Today we have Kelly again who is also wonderful and totally gets Broc.

We also bumped into Annie who was our nurse in December when we were here. She was so happy to see Broc again. Not really but you know what I mean.

Broc is so excited that Aiden is coming to play again today and his girl friends too. The Carr girls and our boys grew up together and even though they have moved away they still remain great friends.

Thank you for all the encouraging and loving comments that were posted on Instagram last night. It truly brought me to tears. Thank you to those who helped watch Lil Mark last night and helped out with watching him and getting him to and from school. It was the first Memorial that we were separated as a family,the first Memorial without my mom as well. Dad, Cara and Micky I was thinking of you all last night. We cannot wait till we can all live together in peace and happiness one day.

Thank you for all the love,prayers and support.

Day 1.

We had a good night last night. Broc had to get Valium last night as he was so uncomfortable. They were able to get his feeds to 60ml today but had to drop back to 45ml as he was getting very uncomfortable. He is still having pain so we had to get him more Valium this morning. He had a fever up to 100.9F last night but thankfully it's been below 100F today so far.
He is laying in bed playing the wii right now. He's really frustrated cause he wants to play but has no energy.
Hopefully today will be good.

Last Update

Broc is all done and everything went well. They were able to put in a Gj jet button which they have sutured for stability. The stitches will stay in for a week and then I have to clip and pull them. Eeek!!! Not looking forward to that. They will be giving him IV pain meds and then he will be getting pain meds in his tube.
Now we pray that his body stays relaxed age that it won't reject his button and everything eise that it went through today.
We have a couple steps before we can leave such as no fever,tolerating all his feeds and on oral pain meds only.
I will be seeing him soon.
Thank you for all your love,prayers and support.

Update 2.

Dr Rouse and IR Drs are still working with Broc. The are putting scopes in his belly button to see better. They will be stitching his stomach to his abdominal wall to hold it in place. Due to EDS it has fallen a little. They are hoping to place a Gj jet button and not a peg with a tube. Either way we are not fussy.

The last update should be soon.
Thank you again for all the prayers.

ENT and GI Surgery-update 1

ENT part of the surgery is done. Dr Matt said Broc did great. He replaced both ear tubes as the one wasn't working at all and the left one was in his ear but totally blocked. The injections went great too. Unfortunately Broc will loose both his top front teeth as they are both loose and anesthesia is concerned they will fall out when they intubate him.

Now it's Dr Rouses turn to place the Gj tube. As soon as he's done I will update again.
Thank you for all the prayers.

Prayer

A little while back we heard a talk which said we need our prayers to be specific. So today we are asking for God to watch over Broc during surgery, everything to go smoothly and to be with the Drs and nurses performing his surgeries. If things do not go as planned and we are faced with some hiccups then please give us the strength and courage to deal with these too.

Mark and I have relied heavily on prayer the last 7 yrs. Since Broc was born it has not been an easy road to travel but with the help of prayer and reliance on Jehovahs holy spirit we have overcome many obstacles. We have been given strength and courage when we thought we had none left.

After loosing both our moms to cancer last year and then Brocs many health issues, prayers is what has carried us through. We have become stronger than we thought we could be.

So I pray this evening that we all have a good nights rest and are ready to face our next obstacle. I will post an update every hour. I hunk surgery will only be about 2 hours so there will only be a couple updates.

Thank you for all your love and support.