Day 1 & 2.

Broc was not feeling the greatest on Wednesday and woke up Thursday morning with a fever. We had plans for Thursday so Brocs Ped suggested that we should keep our plans ( which will be revealed at a later date) then take Broc to the ER once we were done. His counts were low and with a fever was an automatic transfer to Riley. Thankfully the wait wasn’t 10 hours but only 2.5-3hrs.

We arrived at 2:30am. There were totally full so we spent the whole time in the ER. We only got to our room later that day nearly around noon. Broc labs were super scary Thursday morning. Everyone was really concerned but tried not to panic. We had cultures pending from La Porte hospital and antibiotics were continued on the floor. 

His labs were a little better today. Still not great but an improvement. The reason I took so long to update was that later today we found out that Brocs blood cultures have started growing at La Porte hospital. We don’t know what is growing yet. Due to that new information blood cultures were drawn today at Riley and some other tests. We also had a discussion with his Hemonc team and they want to investigate Brocs bone marrow again to see if there have been any changes. When he has his muscle biopsy they will add a bone marrow biopsy to that surgery too. 

Broc has had a few low grade fevers today with a long nap too. 

Broc has a few requirements to meet before he can leave safely. We are praying that his labs are better tomorrow. The information on the blood cultures will help his team make the right decisions for him. 

Thank you for all the love, prayers and support. 

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The phone call we were dreading.

Broc was finally discharged from Riley on Sunday. Daddy drove down to pick us up. He had good labs and the team felt he was good to go. Discharge took a long time and we only left around 5pm that evening. Broc is doing much better since we came home but still fighting some congestion. We were fighting some low blood pressures while we were inpatient so a fellow from the Cardiology team came to see us and let us know that there was going to be a Cardiology conference on Wednesday. We knew Brocs case was going to be put forward but not sure when.

Well unfortunately Wednesday afternoon I got the call from Dr Hoyer to say Brocs case was put forward and everyone agrees that his heart needs more help. If we don’t intervene now it will just get weaker and all his other organs will start to suffer more. He also spoke to his surgeon Dr Rodefeld who did Brocs heart surgery when he was 3 and he agrees it’s time.

They are going to try and repair his Aortic Valve and if that is not a success then he will have what’s called the Ross Procedure. It is where they take his good Pulmonary Valve and put it in place of his bad Aortic Valve and then Broc will get a Bovine (cow or pig) Valve for his Pulmonary Valve.

The date will be Aug 29 for pre op day and surgery day will be August 30.

We are trying to fit in as many fun things as a family before then. We will be attending a convention, planning a trip to the zoo, a Summer Water Party, family shoot and lots more. Broc will have a 2 week quarantine period before surgery too. Please respect that time, if we are around you and you are sick please stay away  or have been around anyone that is sick.

We appreciate all the prayers, love and support from you all.

Day 5 and 6

Day 5 was horrible to say the least. It was supposed to be the day we left. We received Brocs labs and they were critical. He was still having blood pressure issues. The team said no way could we leave. Buddy was very upset but we soon calmed him down. Being in isolation is no fun. No playroom, no walks in the garden. Its really rough. I was feelling my worst so the nurses offered to keep an eye on Broc while I went across the road to the ER which had an Urgent Care. I was given some meds and finally this afternoon I'm starting to feel human.

Day 6 has been much better. Brocs labs are looking better again but his team are wanting 2 days of good labs before we can go home. They are not taking any chances with Broc. We pray we have good labs again tom so we can all be together. He did have good blood pressures this morning but another low one this afternoon. We know it's not because he's been lying in bed. This boy has been dancing all over the room today. Hes starting to get tired now so I think he depleted all his energy. Buddy got a hairwash today over the sink. He wasn't thrilled but you could fry bacon on his hair.

Sadly Lil Mark woke up not feeling well. Brocs team urged us to have him seen so daddy took him to the DR this morning. He has meds and should be on the mend soon. If we go home tom it will be a fun time keeping these buddies apart.  Brocs team is really worried that he could get sick again and not sure how his body will handle that.

The best part of our day was talking to daddy and face timing Buddy.

Thank you for all the love,prayers and support.

Day 4

Yesterday after his 5 hour nap, Broc had a little more energy to build some legos. 

We battled more low blood pressures through out the night and again this morning. They are just watching it more today to see if they can find the reason  or it may just be the virus he is fighting.
Thankfully his blood counts are coming up. Still not his normal but we are hoping they will be there by tom.

He's feeling pretty crummy today with lots of congestion.  They have added allergy meds to see if that can help dry some of it up for him. He has already napped this morning for 2 hours.

This is how we are protecting him. It's a real pain to wear this gown,mask and gloves 24/7 but I know it's all for him. Yes I have to sleep with it on too.

Looking forward to sleeping in my own bed soon.

Thank you for all the love,prayers and support.
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Day 3

Unfortunately our Buddy's labs are even lower than yesterday.  His bone marrow is not very happy . It's taking a lot of strain . Buddy had a small fever this morning so we are watching that. He is also napping as I write this, showing us that his body is fighting really hard. Going home is not an option for us until his counts are much higher. We are hoping to be home by the weekend.

Because he is in isolation and we have stopped all visitors, Child Life Kayla has lent him her tablet to use while we are here. With me being sick I'm wearing a mask,gown and gloves 24/7. Even though it's part of the precautions I may have a different virus to the one Broc has and with his immune system being so low right now he has nothing to fight with.

Although he looks ok he is really sick right now.

Thank you for all the love and prayers. Please don't forget about Daddy and Mark. It's really hard for us to be separated like this.
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Day 2.

Thankfully Brocs fevers have gone.  He is feeling much better. C diff is also negative so his tummy issues are just a result of the virus and IV antibiotics. More good news, his blood cultures are negative after 48 hours. No bacterial line infectuin. Yay. We are still waiting on the T2 test - the rapid fungal test. We are pretty positive it will my negative too.

Unfortunately whatever virus he has is making his bone marrow work overtime.  His WBC is very low . There is a small chance it could bounce back tom morning and we could leave,or it will drop lower.  If it drops lower then we will have to stay a little longer.

Many are asking why our plan to stay locally is not happening. Here's why. As many of you know Broc is very complicated and quite frankly scares any Dr or nurse that is not familiar with him. His ped is on a conference and he is the only person willing to treat Broc locally. Secondly with how badly Broc crashed last year when he went septic his team is very well aware of how quickly he can change. If his team feel it's safer to transport him to Riley then we have to listen.

Thank you for all your love,prayers and support.
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Day 1

Broc slept until 2pm. Poor boy was exhausted. He continued to have fevers throughout the night. His lab numbers are all dropping which we expected. Another IV antibiotic was added. They ordered fungal cultures this morning as well as a c diff. Broc likes to surprise his team and they know that so they are being very proactive . His team really understands him which makes life so much easier for him and me. We are still battling dehydration so his team is working on that too. His fevers are much better today but he is dealing with body pain. Plan for the rest of the day is to rest and let the meds do their job.

Thank you for all the love,prayers and support.
🐸🐸🦎🦎

A long week

Broc checked into La Porte hospital on Tuesday for some much needed iron. He's been sleeping a lot lately and looking very pale.  We are really hoping it helps him feel better. He has also been running low grade fevers for about 2 weeks. 

Broc wanted to give back to all the children that are admitted to La Porte hospital so over the last couple months we collected some toys and games to keep them busy. Broc knows too well how boring and lonely a hospital stay can be. He has also been told that he will have his wish granted and wanted to share some of his joy by donating the toys and games.

Thursday Broc was fitted for new SMO' s or foot braces as he had outgrown bis. We are also adjusting them a little to help remind him not to walk on his toes. They will take some getting used to but hoping they will work for him.

Friday Broc was very laid back. He layer on the couch for most of the day. Saturday he took a long nap and his fever started to climb. Sunday morning he woke up feeling awful and his fever had spiked past the cut off for him so Mark and I packed him up and took him to the ER.

There they followed his protocol . I was really worried that we would get a Dr that hadn't dealt with Broc before but thankfully we got Dr B. She knew exactly what to do for Broc and how to treat him. Broc continued to have fevers so his team was called at Riley.  We waited for a long time before the ambulance came to transfer us. We waited for 10 hours for the ambulance.

 Playing UNO with daddy always makes the time go faster.

Entertaining Grandad. It was so nice to have my dad sit with Broc so i coukd go home and pack clothes and food for our trip. It was great to have him wait with me for the ambulance last night. Thank you too Kaderlys for coming to visit us. 

We arrived around 1am this morning. After all the bazillion questions,dressing change and cap changes we finally went to sleep around 5:30am. 

Thank you for all the love,prayers,kind words and support.