Day 3&4 Cincinnati

 Day 3&4

Broc’s team have felt that a Tpn window will benefit his liver. Yesterday we have him a window for 2 hours. During that window they checked his sugars to make sure they didn’t drop. He also got Pedialyte during that window to keep him stable. He did very well on his new plan. 

Unfortunately today is the start of his immune cycle so he’s not feeling the best either. Lots of belly pain and joint/ body pain. It hits him every Thursday. Friday-Sunday are rough too. By Monday he starts to feel a bit better. Tuesday is a good day and Wednesday is so-so because it’s the end of his episode but the beginning of the next one. 

It’s crazy! No-one can understand it. No-one can stop it. It’s hard for anyone to grasp. 

His body never gets a break! 

The Tpn has really helped him though. We don’t have to worry about him not getting calories or struggling to gain weight with every cycle because Tpn is doing all the work for his body. 

It’s a necessary evil for Broc and the disease he has. 

If everything goes smoothly today, sometime tomorrow we will be back on the road home. 

We never hold our breathe anymore because Broc is so unpredictable. It’s not about NOT being positive it’s about BEING realistic. Because thats all we can be. Thank you for all the love and prayers.

🐸🐸🐸🐸

Day 2 Cincinnati

 Day 2

I’m so proud of our Buddy. He has been through so much. Yes he should be used to it and so should we because hey we do it everyday. But you know some days are just hard and full of emotions. Today was one of those days. 

At 11:30pm tonight he needed an emergency dressing change on a new/fresh very painful central line site. Typically you have a week before the dressing is changed but if it becomes unocclusive it needs to be changed immediately. 

He was so nervous and scared but the nurses were amazing and kept him talking about his favorite things to try and distract him. 

Sometimes I wish he was still this little so I can just swaddle him and hold him tight. 

We appreciate all your love , prayers and support. 🐸🐸🐸🐸

Back at Cincy.

 We just arrived home from Cincinnati Thursday night. Sunday morning Broc’s picc line stopped working. We spent Sunday afternoon/evening at a local hospital seeing what we could do. We discovered his picc line was kinked inside his body.The decision was made for us to drive to Cincinnati. We arrived in Cincinnati at 2:30am Monday morning. 

Our Buddy was so brave yesterday. He had his picc pulled bedside as it was no good with the kink in it. 

And he had an MRI yesterday too without sedation to make sure what vessels they can use today to place his central line. 

We just got down to OR holding and are waiting to speak to all the people involved in his procedure today. 

Thank you for all your love and support. Your messages and words of comfort are so heartwarming for us all. 

Day 21&22 Cincinnati

 Day 21&22

It was crazy trying to organize all the home deliveries, Broc met a new friend down the hall from him and it was wonderful for him to have another perspective. He really enjoyed meeting you K. We  stopped by to say goodbye but you were resting. Thank you to you and your mom for sharing your story with us. 

And……. We are finally home 🏡 

Thank you for all the love and support you have all given us. We really appreciated it during this difficult time. 

🐸🐸🐸🐸

Day 19&20 Cincinnati

 Day 19&20

Wow 20 Days!! This is our longest hospital stay ever. I know many have had longer stays but for us this is a first. 20 Days that our family has been apart. 

Broc’s potassium levels were critical so he had to get a bolus even though they increased it in his Tpn. Unfortunately everytime they make a change in his Tpn it means another 48hrs before discharge. 

One thing he hasn’t stopped during his hospital stay is school. He loves his live classes and loves to participate. 🐸🐸🐸🐸

Day 17&18 Cincinnati

It’s all about finding the balance. Broc’s body is very complex so finding that great balance that keeps him stable can be challenging. His team is doing a great job. 

Passing the time with building more puzzles and working on a logo set that he was given. 

He is finally starting to gain weight too which we are very happy about. 🐸🐸🐸🐸

Day 16 Cincinnati

Lunch is so delicious today. Rice, pork and squash. No greens but that’s ok. Broc had a really bad migraine coming out of anesthesia yesterday which has turned into a continuous headache so we are lying low today.

🐸🐸🐸🐸

Day 15 Cincinnati

Today our Buddy goes in for a surgery to get a new gj tube. This time it will be done with anesthesia as they will clip it to his intestines to try and prevent it from flipping. 

Broc’s intestines are proving that because of all the pressure buildup in his stomach and intestines we are unable to run his formula rate any higher than 10mls/hr. 

Anytime someone comes in his room they remark about all the cards he has gotten. Thank you for always encouraging him and us on this crazy journey. 🐸🐸🐸🐸

Day 14 Cincinnati

A new dx. Our Buddy was diagnosed with Gilbert’s Disease/ Syndrome yesterday. The only treatment for it is to not stress his body out by making it severely dehydrated or malnourished and unfortunately those are 2 things that happened to his body over the last couple months. 

Now that he is back on TPN and the appropriate amount of IV fluid hydration for his body we hope to combat any more severe symptoms. When his body is under stress from an illness etc he will become jaundiced with elevated bilirubin levels. 🐸🐸🐸🐸

Day 13 Cincinnati

Look who finished building his puzzle! 

Many decisions have been made over the last couple of days. Decisions that are very weighty and come with lots of risks. But we also have to think of the benefits for our Buddy. 

Quality of life is what we have always strived for. Our Buddy will be starting IV nutrition tonight. We are hoping this will give his body the help it needs. He will continue to remain on tube feeding through his j tube as well at a very slow rate which helps the liver and intestines. 

Thank you for all your prayers. 

🐸🐸🐸🐸

Day 11&12 Cincinnati

Rest and intense puzzle building. Broc will be evaluated by 2 more teams today. Praying for guidance and a plan that works and most importantly benefits our Buddy. 

🐸🐸🐸🐸

Day 9&10 Cincinnati

 Day 9&10

It has been a roller coaster. We are strapped in for the ride, but not getting off anytime soon.

Day 7&8 Cincinnati

 Day 7&8

We are going one step forward , 3 steps backwards. Broc and I were up since 3am with severe pain. More changes are being made. We just hope we can figure out a good plan to get him to gain weight. 

It’s been a week. Please keep the guys in your prayers at home. Emotionally this is hard on everyone but as always we make it work. 

We are taking it slow. We tried to increase the rate of his feeds to no avail so now we are trying to increase the strength. 

Slow and steady wins the race. We have a lot of friends going through tough times, keeping them all in our prayers.

🐸🐸🐸🐸

Day 5 Cincinnati

 Day 5

Our Buddy worked on school this morning then had a great time in the play room playing games with a new lil friend in the afternoon. This evening he had a few things going on with an increase in pain and dehydration so his team increased his IV fluids to see if that would help. We also gave some extra pain meds to help him. 

His team are still concerned about a few things but taking his treatment slowly as his body adjusts to the new changes. 

More tests are being done, more things are being ruled out, more changes are being made. 

Broc received all your incredible e-cards. ❤️❤️Thank you so much. He loved reading all your encouraging words and appreciates all the prayers. 

🐸🐸🐸🐸