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. 

🐸🐸🐸🐸

Day 4 Cincinnati

 

Day 4. We have started Broc on Pedialyte overnight at a slow rate and will slowly add a little formula today to see how well he tolerates it. 

He had a great time in the teen room this morning. Doing what he loves. Playing music. 

Today will be another rest day. He’s body has been through a lot and the team knows that. 

Thank you for all your prayers and kind words.

🐸🐸🐸🐸

Day 3 Cincinnati

 Day 3. He’s so handsome! Maybe I’m biased because I’m his mom! ❤️

Plan for the day:

- increase meds to keep working on getting him cleaned out. 

- continue with IV hydration 

- rest 

When we came to Cincy a few weeks ago he was tested for a gene mutation that could possibly explain his bilirubin issues. He did test positive but only has one copy of the gene so either the other copy is missing or we are looking at something else. Either way genetics and the liver team will contact us to see what the next steps are. In the meantime everytime Broc’s  body goes through a crisis being it a stressful event / illness etc his levels rise and he requires big amounts of continuous IV hydration to keep him stable. 

We have been told to sit back and enjoy the ride best we can until they can figure things out for him. It will take a couple days to get him stabilized and out of this episode then they will see how he holds his hydration on j tube feeds and his home regimen of IV hydration. 

Thanks for all the love and prayers 🐸🐸🐸🐸

Day 2 at Cincinnati

 Day 2. Due to the viral episode/ illness he’s body is going through plus the 2 anesthesia’s he had his gut shut down completely. We are doing something’s to get things moving again. 

Unfortunately his gj tube has flipped and kinked again so that needs to be addressed. We are waiting to see when IR can get him back to change it out. It may end up being another anesthesia if they decide to clip it down too. 

Once we have a working tube and he’s cleaned out we will restart feeds again. 

We are also watching labs and working on a plan for home for when this happens again. Which unfortunately we know it will. 

Thank you for all your love and prayers. We really appreciate them. Broc is having a hard time with this admit mentally but I am so proud of how he is handling it. He is my inspiration and keeps me going. 🐸🐸🐸🐸

The last couple of months

Well unfortunately nothing much has changed with our Buddy. He continues to struggle on a daily basis. We try our best to keep his pain at bay and discomfort so that he can live the best life he can.

Facebook is an easier place for me to update and google has changed a lot of their rules so I wont be updating on here as often but I know many don't have social media. So I will do what I can.

Since I last posted on his blog Broc has been admitted to another hospital for some testing. There we found out that he has moderate delayed gastric emptying. In easy terms his food /drink doesn't leave his stomach like a typical person. It likes to hang around and cause lots of issues for him, which makes eating and drinking and even tube feeding difficult for him. He was started on some medication to help his stomach contract more which is helping some but also has its own side effects.

He was admitted for pneumonia and dehydration a couple times at our local hospital. Being close to home has really been helpful so I could run home during the day to check on Lil Mark (who is not so little anymore). Broc now goes to our local hospital once a week for IV fluids to help with his pain and to keep his body stable. At times it’s still not enough but we are doing our best.

Broc is having a really hard time getting all the calories he needs. He is loosing weight slowly but we are keeping an eye on that. It really is a fine balance. 

He had a great cardiac checkup at the beginning of the month. His pig valve is holding up well and we hope to get another 10 years out of it. His arch in his aorta was repaired when he was 12 weeks old. Dr H said that if it hasn't narrowed by now then it should stay that way. We can only hope it stays that way.

His vascular appointment went very well and his graft is still wide open. Dr E has some concerns by how Broc is declining and some other issues that are going on but everyone is concerned. We are trying our best to get him the best care we can.

Orthopedic will have us come back next April as Brocs legs are not quite equal yet. They are actually wanting his right leg to be a little longer than the left before they remove the plate in his knee. There hopes are that his legs will even out and he will carry on growing evenly.

Broc has been dealing with elevated bilirubin for a while now. Unfortunately it has led to him being jaundiced looking now too. His eyes also have a yellow tint to them now. Many things have been ruled out but they still haven't figured out the cause of it all. In the meantime he has been started on a medication to help lower his bilirubin. 

Now onto the exciting news!!!!

Remember last year when we told you that Broc was accepted into the Undiagnosed Disease Network? We had a virtual visit with them in June and they revealed to us that a few genes were found and they could be responsible for Brocs disease. Since Broc has been declining more this year and more things are popping up that are stumping his team they called us to come and see them in Nashville this past week. The information they gave us was very interesting. They have isolated more genes that could be responsible for Brocs disease. They took more blood from Mark, Broc and myself for more testing. Once we met with Dr P on the last day he decided to draw more blood from Broc. We are still waiting for some of those results to come back. Dr P is wanting a couple of  Brocs Drs to investigate some more things. He is also wanting Broc to see some new specialists to rule out more things. The info we have so far is possibly 2 options. 

Option 1: is a family of 6 genes that are all coming together to cause his disease. Two of the genes belong solely to Broc called de-novo. The other 4 genes belong to Mark and I. 

Option 2: Mark and I each have a variant of the same gene. These 2 variants together would be responsible for his disease. This is a new gene!!! If this option is the answer then they will put this gene into a fruit fly or zebra fish to see if it is effected like Broc is. If it is effected then this will be a new disease. It will be known as Broc Disease - well because Broc is the only one in the world that we know of that has it.

It was a very emotional couple days for us. A lot for Mark and I to digest. We still have a ton of questions but only time will tell. Things are very stressful with Brocs care right now. As parents we are doing the best we can. Finding the best Drs and Specialists we can.  

Answers will not be immediate. We know it could take years before we have a concrete answer and a diagnosis for Broc. We are a lot closer than we were. 

He has a trip to Cincinnati Children's next month to see his aero digestive team. We will be seeing another specialist there too. Some of the blood that was taken in Nashville was sent to Cincinnati so that will be helpful for them.

We really appreciate everyone's love, prayers and support. Please keep us in your prayers as we navigate through Brocs journey. Some things are a little concerning right now, so the sooner we have answers the better. 

 

Memorial pics 2021 and bread making

 This year the boys and I made the bread for the Memorial as it was held via zoom again to keep everyone safe. 

Day 2&3

 Day 2 & 3.

They discontinued his IV fluids to see if he can handle the hydration on his own. 

They are lowering the calories in his formula so that it’s more watered down for him as he needs more liquid than formula.

Today he will start 27 cal formula vs 30 cal formula. They are watching his diarrhea to see how he does. That’s tricky because the abx are possibly still the issue there. 

They have ruled out C-Diff which is great. They also have stool cultures pending incase we are missing anything. 

They have developed a “sick plan” for Broc. 

That will consist of pedialyte and then slowly work our way up to full strength formula. 

This plan will allow us to stay home if he’s ill and not tolerating his formula. If this plan doesn’t work then he will be admitted for IV fluids. 

As we all know Broc is very complex and plans are made to be changed. 

Our hope is that we can manage more at home than being in the hospital. Thanks for all the prayers.🐸🐸🐸🐸

Day 1 back at Riley

 Hey Buddies Broc and I are safely at Riley. There was a semi on fire so we sat on the highway abs then had to take lots of detours which made our journey many hours more than it usually takes. 

The team have been up to see him. He will be on complete gut rest which means no tube feedings or oral feeding at all. He will be on IV fluids and maintenance fluids. That unfortunately means he needs an IV. They have already called in the ultrasound IV team. Once they get here he will get all hooked up. 

Thank you for all your prayers and encouraging words.

If you blow up the pic you can see the Violet in the rainbow.

Life since we have been home.

 Life at home has been a mixed bag of emotions. Broc is still dealing with on and off joint pains, belly pains and low grade fevers. He continues to have his episodes which slow down his motility. His nausea and pain got to the point that his team had to lower his formula rate by 10mls which means that he has now lost his 4 hour free window. That window meant that he had no lines attached at all. He loved that time and longs for it back. I wish intestinal rehab came with a handbook but it doesn't. No one can say what life will be like when you get home and back to your "normal life".

I wish all the amazing pictures that they painted weren't told to Broc. Now he's mad that he can't have his free time. He doesn't understand that if we unhook him he wont get all the calories he needs. As parents did we know this could be a real possibility. That he wouldn't tolerate his formula at that rate. Absolutely!!! We used to live this life 6 years ago. Explaining that to Broc, a whole different story. With the way his brain thinks he doesn't understand. His brain thinks literally. It doesn't understand the consequences. That is how a person reasons and thinks with Aspergers.

We are still struggling to get enough fluids into him to keep him well hydrated. He doesn't ask for the liquid as he is mostly full so we are just giving him cups of gatorade to drink without him asking and he continues to sip on them slowly. We also cannot drain his Gtube like we used to otherwise he would loose the fluid he drinks. It's such a delicate balance.

We are still having to put pedialyte in him at night via his Gtube.

The fact that that we are now feeding him via his Jtube by no means says that he is cured or better. It just means that his colon has rested enough for now to accept tube feedings. He still only eats very little by mouth. He still has Mitochondrial Disease and all the other diagnosees he has. He is also still undiagnosed as we wait for a complete diagnosis from the Undiagnosed Disease Network. We are hoping to hear back from them by the Summer of this year.

Life is not the bed of roses many would think it is. He more tired as his body is using more energy to digest the formula. He is on medication every 4 hours to keep his belly pain at bay. Unfortunately dealing with pain and nausea on a daily basis makes for a pretty grumpy Broc some days.

We are hoping that we can reach a point where he is somewhat comfortable.

Thank you again for all the encouraging cards, messages, texts and prayers that our family has received. 🐸🐸🐸🐸

Day 16 & 17.

 Day 16 & 17. 

Yesterday was a crazy busy day for Broc. He started the day bright and early with a Hida scan to check his gallbladder function. We will only have those results by next week. That took a couple hours then we came back to our room for 15 minutes and then whisked away to surgery to have his central taken out. 

Yesterday was special, not only was it a milestone in his medical journey but the Dr that put his first line in pulled his last line yesterday. Dr Marshelleck was so happy 😀. When you’ve been coming to a hospital for 13 years and everyone knows you like family it makes days like yesterday extra special. 

Today will be getting everything organized, RXs for all the new meds and packing up his room,ready to go home tomorrow. We have lots of plans in place so that everyone is on the same page and to streamline his care. When you have someone as complex as Broc you need everyone to be on the same page. 

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