Day 12.
🎉🎉🎉 YAY HE DID IT!!! HE MADE HIS GOAL RATE FOR TUBE FEEDS!! 🎉🎉🎉🎉.
All his friends came to celebrate with us this afternoon. They have all been with us on this journey and will continue to our next journey. Thank you for all your encouragement and prayers. 🐸🐸🐸🐸
Broc is doing much better infection wise. He’s back to his laughing sassy self. Telling everyone about all the new things he has researched on google. He’s up walking a lot more and PT is visiting him taking him to the gym to keep his strength up.
He’s totally off Tpn and just on IV Normal Saline at night which is is being tapered every night. They are trying to see how his body will do with no extra IV hydration. We are hoping that we will be able to give pedialyte on his bad days in the hopes that we can stay home more.
We still have lots of kinks and logistics to work out but so far things are moving in the right direction.
We have a rate countdown on his door as we are only 10MLS AWAY from his goal rate. Yes he’s still having belly pain or wave pain as he calls it but it’s manageable. Thank you for all the wonderful cards you have sent. The staff are so amazed at how much our Buddy is loved from around the world. Thank you too for the prayers. This has been one crazy emotional roller coaster for us as parents. 🐸🐸🐸🐸
There was no care conference as not all the Drs could get together. They are still hoping it will happen. Yesterday was another emotional day for both of us. The unknowns are so hard. The what if’s? Broc has had Tpn for the last 5 years of his life. Last night was his last bag of Tpn. Tonight they are just doing fluids to see how his body handles the changes. His belly is not quite used to the formula yet but it’s getting better.
We are now over the halfway mark of his goal rate. We are so proud of Broc. We know that this could change back in an instant but for now we are celebrating the accomplishments he has made. The formula will be so much better for his organs and his quality of life. As of this afternoon decisions are still being made as to whether he will keep his central line or not. There are still so many things to iron out. The team have to slowly wean the fluids Broc has been on as we cannot shock the body by taking them away all at once. Labs have to be monitored, vitals and also his input and output. Everything has to be carefuly calculated to see if we can do this safely at home for Broc. Things are changing everyday so we are just patiently waiting. Thank you for all your continued prayers. 🐸🐸🐸🐸
So much has happened over the past year as I’m sure you can all attest to. Brocs health continues to decline but we are trying our best.
This is how our last week has been.
Day 6 & 7.
Well I had a long post written and social media ate it.
Broc earned himself a belly X-ray to Check on some issues he is having. Everything came back ok but we are keeping an eye to make sure we don’t miss anything like C-Diff. Although if you knew the smell you could never miss it!
He also earned himself an echo as the bacteria he’s growing can cause vegetation to grow on the heart.
Please keep us and his team in your prayers tomorrow. Please pray for guidance and wisdom. Pray that the best decisions are made for Broc. Pray for a calm heart for Mark and I too.
We are so proud of Broc. He has pushed through and is a couple mls from .... wait for it.... HALF OF HIS GOAL RATE!!!!! We are so proud of him. From tomorrow they will start to decrease his Tpn. I never thought I would hear those words. This is not a fail safe plan. So many things could happen. We really hope we can keep the progress we have made.
Day 5. Today he’s dealing with lots of body pain. They have not increased his formula rate to see if his body needs more time to adjust. It’s been lots of snuggles on mom and sleeping.
Day 4. Was full of lego building and learning to play the keyboard. He was so proud he had to FaceTime his buddy and show him. As the day went on his pain got worse and worse. They think the bacteria is still causing some issues even though his cultures are now negative. Thank you for all the many e-cards he has gotten.
Day 3.
Well we thought yesterday was rough, today was 100 times harder. I think I went through the entire emoji dictionary in feelings today. So many decisions were made today. The daily labs, testing, measuring, tweaking etc is going to be a lot for Broc to handle but we will keep him as comfortable as possible.
The last picture of the bag of formula shows that Intestinal Rehab started today. It’s a slow process that includes many moving parts. Broc and I will be here as long as it takes. The teams goal is to get him off Tpn. He will still have a central line and feeding tube.
Broc is still dealing with the 2 streptococcus bacteria in his line. One is rare! Surprise ! and the other one is found in your gut, so his body is making him sick.
The Child Life team know how rough this journey will be for him so they have lots of fun things lined up for him. We may come home with a bunch of bird houses. 😂😂
Day 1.
Broc has had a few wonky vitals, sleeping more and just acting “off”. My mom intuition suggested blood cultures yesterday. They just came back POSITIVE!! We will be heading to the local hospital soon then transferred by ambulance 🚑.
