New Beginnings

 Wow. It's crazy to think its been a year since I wrote a post here. Well I guess updating Facebook and IG is sometimes just easier.

Anyway, onto all the new updates. Our time with Cincinnati Children's has come to an end. It was getting too far for me to travel and we were looking for a hospital to transition to for adult care as Broc will be 18 next year. Wow, I cannot believe my baby will be 18. Its been 17 long years but we wont change it for anything! We have learned so much on his journey. 

Brocs new team is incredible. They all have 1 goal and that is to keep Broc comfortable and let him have the best quality of life we can give him. His new hospital is close enough that he wont need to take anymore helicopter rides unless its a serious emergency. Another benefit is that the family can visit him whenever they want to which is so important.

We found out that Brocs Cardiologist from Riley will be retiring in the next year or so, so we moved his care closer to home too. After seeing his new Cardiologist we found out that Brocs heart is stable with his Aortic Valve being in the mild to moderate range. He will continue to see him yearly.

We have gone back to his old Immunologist in the meantime and then will transfer closer to home next year. For now he has started Broc back on IVIG and then his new Dr will continue his care. This is something Broc will be on for life as his Immune system is just not strong enough to fight off viruses and other illnesses. Everytime different Drs try and take him off of IVIG his Immune system takes such a hit and then he starts having low grade fevers again and other symptoms. He has really been struggling the last 6 months so we are really hoping that after a couple months of having the IVIG in his system things will start turning around for him.

His neurologist had some serious concerns when Broc went to visit her because he has had an increase in his pain as well as his headaches and been falling a lot. Broc will be having a brain and spinal MRI on Dec 26 to see if they can figure out what is going on. It maybe that he will need another neurosurgery but we are really hoping not.

He has a wonderful new GI team that finally understands the way his GI system works and for now is willing to help him as best they can. We did find out that unfortunately Brocs small bowel and large intestine do not function like they are supposed to. With the help of the surgery team and his new GI they have come up with a great plan to help Broc. Well it may not seem like a great plan to have such a big surgery, in Brocs case it will greatly benefit him and his GI system. Otherwise he will continue to have bowel obstructions and continue to need surgeries for that. They will do a colectomy on his large intestine and then he will have an ileostomy. This will help decrease his trapped gas and intense belly pain that it causes for him. His large intestine gets so full of air that it unfortunately pushes all the way up into his ribs causing him severe pain all the time. This surgery will be on hold until we find out if Broc needs neurosurgery or not.

His eyes are really having a hard time because of all the inflammation in his body. We do drops daily to try and help as well as every 3 hours. His new Rheumatologist has decided not to put him on any meds for his Sjogrens at this time as it wont really help with the symptoms that he has. For now we are just treating symptoms and waiting for more testing to come back.

Well that is all the big updates for now. Thank you for continued love and support for our Buddy.

  

A New Diagnnosis & Family update

 We did find out what our buddy has. Some of you may have read about it on his Facebook and IG page. If not Broc was diagnosed with Primary Sjogrens System. This is another disease that affects his whole body. Organs, cells and tissues. Unfortunately he has another disease that does that too called Mitochondrial Disease. And yet another one called Ehlers Danlos Syndrome. Many people that have Sjogrens only have Sjogrens and not 2 other diseases that affect your body.

This disease still doesn’t explain a complete diagnosis for Broc. The Undiagnosed Disease Network is still looking. There are treatment options for Broc to help calm down his inflammation in his body. We are really hooping this will help with a lot of his pain. His new team are hopeful it will help to calm down his immune system from attacking his body.

This week the boys and I spent a week in Cincinnati seeing a couple of specialists. Broc’s Rheumatologist was hoping for Broc to see the Bone Marrow Transplant Team as they will be an integral part of his treatment but the Dr that we wanted to see is not accepting new patients so we will patiently wait for a phone call to see another BMT Dr in a couple weeks. Once he has been evaluated by them only then can he start treatment. 

We also saw the Colo-rectal team to see if Broc will be a candidate for a procedure that may alleviate some of his belly pain. Unfortunately we found out that Broc is not a good candidate and that relief cannot be guaranteed. His belly pain is all due to his immune system. Every time it flares his whole gut shuts down and air gets trapped which causes immense pain for him. Unfortunately his disease leaves him very thirsty and a very sore but drinking anything even water causes severe pain and distention. 

Dermatology took a sample of Brocs toe nails to see if there is a bacteria that we can treat. If not then we will continue with all the creams, filing down his nails and vinegar soaks. Unfortunately there is not much that can be done for Brocs toes. We will continue to use the topical creams when he gets cellulitis infections around his toe nails too. He was given the option to have his big toe nails removed but speaking from experience that is very painful and not something we want to add to Brocs plate right now.

GI and Advanced Nutrition Team who manage his TPN are making small changes to his TPN recipe. They are concerned with the huge increase of steroids that Broc will start too, so keeping his calories on the lower end for now. They are a little concerned about his bone density as it is on the extreme lower end of the spectrum. Something that they will be keeping a close eye on. 

Mark saw Brocs Rheumatology Dr as well. He doesn’t have Ehlers Danlos like Broc and I but has Hypermobility Syndrome Disorder. His score wasn’t high enough for him to get an EDS diagnosis. He does have iron depletion so he needs to start taking iron supplements as soon as possible to help replenish his stores. Eating iron rich foods is not enough for him. He is also needing to be evaluated for Autonomic Dysfunction. We are hoping that because he is close enough to an adult he will be able to see my cardiac Dr for Neurocardiogenic Syncope or POTS. He will also be seeing OT and PT for his extremely tight muscles and flat feet which runs in the family. He will be seeing them when we go back in November.

In the meantime my health has been taking some strain. Keeping up with all Brocs needs and then some has been very taxing on my health. No getting enough sleep is also a huge culprit. Broc requires medication every 3 hours around the clock so that leaves me with only a couple hours of sleep at night. I have been diagnosed with Seronegative Rheumatoid Arthritis. I have started treatment but it’s not working as well as they had hoped so we are in the process of getting another medication approved. We all know insurance has their own timetable. 

Thank you for all your continued love and support.

 

Unexpected turn

 A couple weeks ago Broc and I headed to Cincinnati to visit his team and a new Dr too. We have seen a Dr like this once before but were dismissed so I was very hesitant to visit a Rheumatologist again. I’m so happy we did. He is an incredible Dr with so much knowledge and so compassionate. We spent about 2 hours in his office. He asked a million questions and more. We got talking about Brocs dry eyes. I said well he’s had them for about 5-6 years and we were just told its his medications that he’s on. Then he looked at his other symptoms like his pancytopenia (which is extremely low blood counts), his unexplained fevers, chronic pain and illnesses which are causing him so many issues. He has been dealing with most of these symptoms since he was 2 years old. He asked me if I have ever heard of Childhood Sjogren’s Syndrome ? No. I had only heard of Sjogrens and that would be the disease that affects adults. 

So he asked if we would be willing to start the process of all the testing. I said well what do we have to lose. He’s still undiagnosed and he’s not getting any better. If we can help him in any way to feel better we certainly want to do that. The testing involves an ultrasound of his saliva glands and neck, lots of bloodwork and lastly a biopsy of his inner lip to test the cells.

We will be heading back to Cincinnati next week for the ultrasound then next month again for the bloodwork. He has to be off his steroids to be able to have his bloodwork. Once we are done talking about Broc and the rest of my family he says to me Mom I think you should consider getting yourself tested too. So now I’m waiting for my appointment too. 

He also referred Broc to Rheumatology Physical Therapy. We had a great evaluation with them. They gave us a few exercises to do with Broc at home. He is doing very well with them. There hope is that this will help him get stronger and stronger.

We also found out that Broc is Vit D deficient so he will be getting additional Vit D too. Unfortunately our only option is to put it through his J tube. It not a great idea as it only causes more belly issues for him but we don’t have many options.

We then moved to Dermatology. Again his skin issues are being blamed on auto immune. His toenails too. He keeps getting cellulitis  around his toe nails and then another nail grows but the previous one doesn’t fall off. All they can do is treat the cellulitis.Next they looked at his legs and the hairs on his legs are growing like corkscrews so I guess that’s an issues and another vitamin deficiency. Vitamin C this time. He will be having bloodwork to check those levels.

It’s been a very busy few months. His immune system is really taking a hit. His dry eyes are causing infection in his eyes so we are medicating his eyes as much as we can with artificial tears 5-6 times a day and antibiotic drops. He is still having good and bad days. 

He has really enjoyed going to meetings every Sunday to see all the friends. Unfortunately he has been sick a few days later every time he goes so we know his immune system is having a hard time. If he does indeed have this new Syndrome then we are hoping that starting treatment will bring him much relief.

We also discovered that his legs are turning purple when he sits and stands so we have been in contact with his vascular team and they recommended ultrasounds on his veins and arteries to a make sure there are no occlusions or blockages. If the ultrasounds are normal then once again it will be blamed as an auto immune symptom. 

I will keep you all updated as we get the results. Thank you for all your continued love and support.

Illness with no name

 Broc has not been well since coming home the beginning of March. We took him to the ER 2 weeks ago with severe belly pain and vomiting and low grade fever. He was dx with gastritis on CT scan. We came home on IV abx for 48 hours incase his blood cultures grew something. Thankfully they didn’t. 

Fast forward to this past week he still has low grade fevers. On Tuesday his migraines increased as well as his belly pain. His temp also started increasing on Monday night into Tuesday. He spiked a very high fever Tuesday. Well past his cut off for his protocol. We were convinced he has a blood infection or at least a line infection with how sick he was. 

Unfortunately after all the testing came back negative, viral and bacterial and he was done with his 48hours of IV abx and fever free for 24hours, they decided it was best to send him home. We do have one more test pending that takes a week. If this test is abnormal that would be helpful. 

Thank you for all your continued love and support 

🐸🐸🐸🐸

Broc Update

After spending almost all month in the hospital and not being able to manage his pain very well, we made a decision. This was not made lightly but one we knew we would have to make eventually. As a family we have discussed this over the last couple of years as Broc’s health has slowly declined. We placed Broc with hospice/ concurrent care yesterday. We are really hoping this brings him better pain relief. He isn’t absorbing the pain meds through his J tube anymore. 

It doesn’t mean that he’s at the end of his life, it just gives him the ability to have iv pain meds and be as comfortable as possible while still getting his IV nutrition at home. If he gets sick or needs medical attention we will still take him to the hospital to get treatment.

We are hoping this will allow his body to not be fighting pain all the time so that he can start to gain some weight and strength. Because of all the pain he is in bed most days and has lost almost all his muscle mass which is causing other issues for him. 

We long for the day that he will be healthy and happy again. Until then we will keep him as comfortable as we can. He still has many things on his bucket list. 🐸🐸🐸🐸

Family Medical Update

 Wow where to begin. I'm not sure we will be able to take pics like this as our Assemblies will be back to in person next year. We do not take one moment for granted where we can be together as a family. Broc and I have been attending meetings on zoom so as to keep him safe. 

Update wise on everything Broc.

Urology testing went great. We got good results which was a great sigh of relief. His bladder is a little slower at working than the typical bladder but that's okay. We can work with that. Sometimes it's better not to give meds if we can help it so we decided having a slower bladder was better than the side effects for his body.

Hematology & Immunology are still following his labs closely. For now they are much lower but because they are staying stable but low we are just continuing to watch and monitor. Seeing these numbers constantly low is a worry but once again we are learning a new normal for Broc.

Cardiology day was a great day too. Brocs heart is stable for now. We love stable. Its still not great but we are hoping that his new valve will last him at least 5 years or more. Lots of things were discussed like hydration, quality of life, nutrition and his hypertension. Broc has started loosing weight since about June when he had his pneumo-peritenium which the source was never found. Everyone is really hoping things will even out soon. Dr H said that as of now nothing is putting extra stress on the heart but adding a little bit of IV fluids to help his dysautonomia and over all wellbeing will be beneficial for him. Even though he is loosing weight he continues to grow like a weed.

These 2 special people have been in our lives since Broc was 8 weeks old. They were the first 2 people that we met when we started Brocs heart journey. Miss Nancy was so kind. I remember Broc being so little laying on the bed and we had no clue what an echo was or how to look at it. She was so kind and patient with Mark and I explaining everything. Then we went on to meet Dr H. Having the same name as your husband was a plus. Actually both Dr H and Dr R which are Brocs heart Drs have the same name as my husband. Miss Nancy is the Aunt you go visit that gives you candy except Broc cannot eat anything so he just gets lots of hugs. For now we continue to monitor his heart once a year.

Vascular was was a good appointment. His graft is still wide open and his ABIs were still within normal limits. Orthopedic on the other hand was not such a great appointment. Broc has the beginnings of scoliosis and that will be watched closely. We also found out that his right leg (the shorter leg) is now the longer leg by 1cm so his hardware that was in his left knee needed to come out which it did this past Monday. Everything went smoothly and they were able to remove all the hardware from his knee. He is recovering well and his pain is slowly being controlled. We are hoping that the left leg will now catch up and he will continue growing at he same length which each leg. Broc is almost 5.11".

These are pics from surgery day.

   

Then walking around at home.

Now onto GI, ENT and Pulmonary. ENT was easy. His ears looked great as did his laryngeal cleft so we left those alone. This will be the first time that Broc has not had ear tubes put in. He was very happy about that as he hates having the drops put in his ears all the time. We are happy that his laryngeal cleft was still in tact as we hope to never have to revisit that surgery ever again.2016 was scary nightmare! His Drs will absolutely agree on that one. Pulmonary, there is not much more we can do for his lungs as his mitochondrial disease continues to weaken his muscles so he continues to wear his bipap at night to help expand his lungs while he's sleeping as well as using his breathing treatments and vest therapy during the day. This is the maintenance we do to keep Brocs lungs at an optimal place.

GI on the other hand is a different story. He continues to loose weight and no one can figure out why. Despite the continued increase in his TPN calories. But he also continues to grow like a weed which makes putting weight on him all that more of a concern. We have purchased a bath cushion for him to help during bath times as his bones get very sore while sitting in the bath. 

He has also been struggling with his gallbladder for a while now. The sepsis in late July and increase in right side, shoulder and back pain led us to include a procedure called an ERCP during his triple scope in October. During that procedure they use a scope with an ultrasound probe on the end, so essentially you are getting an ultrasound but looking from inside the body. That procedure revealed that his poor gallbladder is so sick with sludge and stones. So it was decided that he will have his gallbladder out on Dec 8, which will be 2 weeks from now. We are hoping that by removing his gallbladder we can get a better handle on his constant pain and nausea. Life has been pretty miserable for Broc. We are trying our best to focus on quality of life for him and keep him as comfortable as possible. We have moved as many of his meds as we can to IV from to give less in his intestines. We have been told that the surgery will either help tremendously, or just a little, or nothing at all. But we wont know until we take his gallbladder out, so out it will come. During that procedure they were also able to look at his pancreas. Thankfully that has not been effected by how sick his gallbladder is so that is a huge plus.

When we go we always stay at the Ronald McDonald House in Cincinnati. Broc loves the toy room where kids get to choose a  gift for themselves and their sibling. His favorite, Legos of course. He is so sweet he will always choose something for Mark too.

Now onto the news that might be new to some or some may already know. Daddy Mark started loosing his hearing a little after he had Covid in January. He did have very bad tinnitus at the time too which was getting worse but only in the right ear. We all figured it was a Covid thing and it would just be there or get better. We made an appointment with an ENT and he sent him for a hearing test. It was found that he had some hearing loss in his right ear but it was more significant than the left so his ENT felt that an MRI was warranted. As the medical family we are, I started researching and I always came back to one answer - a tumor. We were really hoping not but it was always in the back of our minds. Unfortunately the MRI revealed he did in fact have a tumor. Its called a Schwannoma. It is sitting on his vestibular and cochlear nerve. The following day we were sent down to Indianapolis to see a ENT Neurosurgeon. There he looked at the MRI and explained all our options. It was decided because it was only 9mm and not touching anything significant and because he had already lost his hearing in the right ear we would watch and wait and return in 6 months for a follow up MRI. Had we done the MRI before he lost all his hearing then he may have been able to have a surgery to remove the tumor and hold onto what hearing he had. He only has 16% hearing when it comes to words. So if you speak to him its best to stand on the left side or just talk really loud so can hear you. As you can imagine this has changed so many dynamics in the family. This particular tumor is slow growing and is only supposed to grown 1-2mm a year so we figured we had time.

Fast forward to 2 weeks ago and his MRI revealed that his tumor apparently liked to follow our families pathway and grow another 3mm in 6 months. This is of course a rare thing to happen, but if you know our family we are all about RARE!  So Mark will be having his brain surgery on Dec 29 to remove his tumor before it gets any closer to his brain. We pray that it does not grow anymore before then. If it does, it makes the surgery even more complicated as its very close to his brain but not touching it as of yet. That will require them moving his brain or lifting it out of the way to remove the tumor. 

Surgery will be between 7-8 hours long. His recovery will be a month long or longer depending on how he does. 

Needless to say the last couple months have and will be very trying for our family. Watching your sons health decline and knowing you can do nothing about it is very scary and sad. He has a wonderful pain dr, Dr T who is taking such great care of him and giving him all the support he needs to be comfortable. We did have a Palliative Care Dr for a month or so until he left but we are in the process of finding another one for Broc. If we cannot find one then Dr T will be managing it all with the help of all his Drs combined.    

We thank you all for your continued love and support thru everything. Our goal is to keep everyone as healthy as possible as we know illness only delays these upcoming surgeries and we cannot afford for that to happen. 

🐸🐸🐸🐸

 

Medical Update

 WOW!!! I cannot believe its been so long since I have had a minute to sit down and type on Brocs blog. Facebook and IG are much easier and quicker but I realize there are some that don't have social media so they rely on the Blog for info on Broc.

Where to start. Our Buddy has been admitted to Cincinnati Children's every month and twice in July. No-one really knows what is going on. In the beginning it was thought that Broc was having fluid overload as his face was swelling and he was having higher than normal blood pressures. After much testing and 2 hospital admits to rule out his heart and kidneys and a visit to the nephrology dept it was determined that there was no answer as to why he was having facial swelling. At times it would be worse and his eyes almost closed from the swelling. They tried to decrease his fluids but his body did not like that at all. The Drs realized it made no difference to his facial edema as well. So if our Buddy looks more puffy in the face he is probably in an immune flare and having a rough day. His blood pressure has increased since he had Covid 19 in January so after all the testing we will just watch it closely. When we see Cardiology in Oct they will decide if its effecting his heart function. If that is the case he will go back on blood pressure medication. 

Brocs immune system is puzzling everyone. It is flaring every week. The flare starts late Wed all the way through to Monday. Weekends are the worst for him with chronic pain, fatigue and other symptoms. Since Broc got ill in June with a pnuemoperitoneum things have not been great. His liver enzymes have been increasing and lowering as well as many of his other numbers. No one could figure out why he got it. No source of infection was found but thankfully it cleared with IV antibiotics. Broc has a really tender colon since this infection. They have stopped his formula and he is only getting pedialyte through his J tube. He was unfortunately admitted 2 weeks later with a fever and another unknown viral illness. His liver enzymes were elevated again as well as many other labs. Unfortunately he was admitted again this time he was extremely sick and septic. The concerning part is that no-one knows what made him septic. He did recover again with IV antibiotics. He also had to be given Vit K injections to help with his clotting as his INR was elevated too. The continuing elevation of his liver enzymes and GGT are concerning. He will be having more testing this week and if they are still elevated then he will be having another abdominal ultrasound. His previous one 2 weeks ago revealed sludge and tiny stones in his gallbladder. 

He had a colonoscopy and endoscopy while he was inpatient last time. It revealed that he has a significant amount of eosinophils in his stomach (body and antrum). The number 15 is the upper limit and Broc has 100. His team have so far decided to stop all food and drink for him to give his stomach time to rest and heal. Even though he is draining his G tube 24/7 he will still not be able to have anything. This is incredibly difficult for Broc. Not even being allowed to have a sip of water or an ice chip. We are on day 3 and he is doing incredibly well. We are trying to be as thoughtful as we can with our words regarding food and drink. If you are around Broc we ask that you please do the same. They will be scoping him again in October when we go back. The results of those biopsies will decide if he needs to start treatment.        

Broc saw his hematologist and she is very concerned that his numbers are getting lower and lower. When Broc gets sick his blood counts all drop. If he starts at a lower number he doesn't have much lower to drop. If his numbers continue to drop then he will have another Bone Marrow Biopsy to see if there have been any changes since his last one. We are not quite sure what will be the next step if there is an issue with is Bone Marrow. 

The UDN is still looking into all kinds of things for Broc. His UDN team is very helpful with keeping in contact with us about any changes. They are contacting a Dr in Japan who is studying a variant of one of the genes that Broc has. They are also waiting for the initial phase of testing to be completed before they can continue on the next phase.

He will be seeing his urologist in 2 weeks and undergo some testing to see if we can figure out why things are not working like they should. Unfortunately that may lead to surgery but we are hoping not.

In October he will be seeing his orthopedic surgeon to see if his right leg has grown long enough for them to remove the plates out of his left knee. They said there is a small chance that they maybe able to leave the plates in and let him continue to grow. This will be great as we would not like to put him through more surgeries. One less is always a good option. He is 5ft10 now and continues to grow!

Everyday is a blessing with Broc. No-one knows why he is sick and what is making him sick which makes finding a treatment very difficult. Keeping Broc comfortable and as pain free as we can is key. His pain team is doing a great job with that. We are still being told that he maybe the only one in the World with his disease. We don't know how much longer we have with Broc. We are very thankful in knowing that one day Broc will be healed and be able to live the life he was meant to live and enjoy all the food and drink he can without being sick. 

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

 

  

 

Life at home

Brocsbuddies 

We are running a fundraiser too if you would like to purchase a Brocsbuddies Hoodie. Click on Brocsbuddies above ⬆️.

Since we left the hospital life has been pretty busy. Broc has needed an increase in his IV fluids and we have switched some more meds to IV that can be added to his TPN. He’s struggling with the volume of all his meds that have to go into his j tube. 

Unfortunately he has been diagnosed with Long Haul Covid or Long Covid. That means that he is sick or having symptoms 24/7. We have added another pain med to help keep him as comfortable as possible. With his previous immune cycles he would get a day or too break from symptoms but now he doesn’t. 

His immunology team are drawing more labs on Monday to see if they can figure anything else out. We have already tried a 5 day course of low dose steroids but that didn’t do anything. He’s also having increased blood pressures so we are trying to figure that out too. 

Thank you for all your love and support. 🐸🐸🐸🐸

Covid Day 8

 It has been a rough week for Broc and I. Covid is so weird. Every day you have a different symptom or you loose a symptom and then it comes back a couple days later. 

It has really hit Broc’s bone marrow for a loop. His WBC is yet to reach 2.0. His Drs feel he will be more comfortable at home. As long as his ANC remains above 500 we can leave tomorrow. We have been given extra iv fluids that we will replace over night for him. This will help with fluid losses as well as the effects from the antibiotics. 

Thank you to everyone that has called, texted or FaceTimed. We really appreciate all the love and prayers. 

🐸🐸🐸🐸

Covid hits

 Unfortunately Daddy Mark was exposed at work and so it worked it’s way through the family. For many it’s just a cold but for Broc its extremely high fevers, low blood pressures, chills, chest tightness and it’s being life flighted by helicopter 🚁 to Cincinnati Children’s Hospital. 

He slept most of yesterday, actually we both did. I feel pretty crummy myself. Some kind friends brought me some medicine to the hospital which is really helping. 

Broc’s blood counts unfortunately are critical this morning but that is typical for when Broc gets sick. 

Thank you for all the love and prayers 🐸🐸🐸🐸

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. 🐸🐸🐸🐸