Recovering at home

We arrived home on Tuesday evening. We were very happy to be home but also very worried how Broc would do. He has been having issues with low blood pressures so we have had to give him lots of extra iv fluids to keep his blood pressure up. He is breathless just by walking to the bathroom and back. He is not allowed to do any physical activity at all. Not Wii, x box or anything like that. Not even playing with his brother. We were playing a card game today and he was getting out of breathe cause he was getting so excited.

His blood counts are coming up very slowly. He got another EPO shot tonight at the Peds office. They were kind enough to have us sit in the car and go straight back to a clean room. We also made the appointment for the last one of the day so that we would encounter as little people as possible. His ped is happy with how he is doing under the circumstances. As long as we can monitor him well and keep him stable at home then he can stay out of the hospital. Being in the hospital this time of year or actually any time is really not a good idea as there are so many viruses and sick people in the hospital and that is not a good combination for Broc right now. With his counts being so low it would be really scary if he were to catch any virus now.

Thank you for all the love, support and prayers.

I love seeing these little faces. When they were this little we had no idea of the journey that lay ahead for us. Today they are both strong, loving and caring boys. Lil Mark has had to grow up so fast and we are so proud of him.

On the road to recovery.

The last 2 days have been really rough for us. Fighting with Drs to get Broc the medical care he needed in a timely fashion.
Thankfully Broc is on the road to recovery. He is a long way from being well again but that will come with time and keeping him healthy. His airway is still swollen and will take time to heal.

Thank you for all the love,prayers and support we have gotten from everyone. We really appreciate it. Thank you too for the ones who took care of Lil Mark. We cannot imagine how scary it must have been to watch your brother bleeding from different places.

We will be coming home later today. Please no visitors at all.

A special Buddy that flew with us on Saturday came to say good bye. 

Our biggest scare

Im thoroughly exhausted with only having 3 hours of sleep. This post will consist of updates that I posted and pics that I took yesterday.

An artery was actively bleeding in his epiglotis. This is extremely rare and has never been seen before. Once again Broc is making history. The plan is to start waking him up then pull the breathing tube. He had another scope today to make sure the bleeding has stopped.

There is no gaurantee that this wont happen again but at least we will be ready with a plane if it does. We are not sure when we will come home.

Thank you for all your love and prayers.

Unexpected surgery.

Yesterday was a slow morning as we on!y had to be at the hospital at 12:30. We arrived and got all checked in. Dr D came in and said that broc did not need to have the lingual tonsilectomy because his sleep study was normal. Great news because then poor Buddy wouldn't be in so much pain and the whole OR time wouldn't be that long.

We grabbed a coffe and headed tonthe wairing room. Ourbname was called 10 min later! What, wait that was fast! Dr D is waiting for us in the consult room. He informed us that the surgery they did in October didnt work. So unfortunately our Buddies day went from a good easy day to a long painful day. A 30 minute procedure turned into a 3 hour procedure.

We finally got to see him that evening. The team did a great job controlling his pain. He has not had break through pain at all. Pain meds every 4 hours will be our plan for the mext couple days.

He had a great restful night. I on the other hand was woken up at 1am as we had to move to the complex airway unit as another kiddo needed to be in the icu. Love that Broc didn't need to be there.

Today he will be having an abdominal CT scan done under anesthesia as new issues have arisen and the GI team would like to help us figire it out. The xray that he had done on Tuesday was very concerning to them.

We will be back in 8 weeks to look at the repair that was done yesterday. We will also be waiting to hear what plan the GI and surgery team have for him.

Thank you for all your love,prayers and support.

A busy week.

The next 2 weeks will be tough on our buddy. He will be having a brain and spinal MRI with sedation. He has been having some concerning eye pain and vision issues so we are very curious to find out what his optic nerves look like as well as the pressure in his brain. They are also looking to see what the syrinx has done since his Tethered Cord surgery in April. We are hoping that it is shrinking.

He will also be having a sleep study and surgery this week too. It will be a busy week for us with lots of pain unfortunately. Please keep our buddy and his team in your prayers. I will be posting updates on FB and IG and then on the blog every evening.

Having some fun while unhooked from all his lines.

A couple weeks ago we were able to have a fun family day at the Field Museum. The boys loved the dinosaurs and animals the most.

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

The last 2 weeks and Mott.

So much has happened since we got home from Cincinnati. The boys are part of a reading program called BookIt with Pizza Hut. They have a set amount of time to read everyday and then I reward them with a coupon for a free small pizza at the end of the month. The programe is until March 2017. When we went to get the first free pizza the boys were given a little book and a sticker. They will get a sticker every time to fill their book. Unfortunately because Broc cannot eat he is donating his pizza to any person that comes into pizza hut without food. The manager said that they often have people standing around the area which they can give his pizza to. Broc was so happy that someone else with no food will get his free pizza.

Unfortunately even though we stayed away as much as we could Broc caught a virus which compromised his airway and he ended up choking a lot more than we liked. We are now doing breathing treatments twice a day to help with the inflammation and he has gained another piece of medical equipment. Very much for our peace of mind at night when he sleeps.

The virus did unfortunately give Broc another ileus. This one has lasted almost 3 weeks. The longest one he has had for sure. We think it was due to the anesthesia from the surgery as well as getting ill. He has had some really rough days and then other days where he will be okay. His team was talking about admitting him but we decided that we had all the meds and fluids at home and putting him in the hospital wouldn't be a good idea with all the viruses floating around.

We were very happy to attend the Circuit Assembly too. Broc did have a lot of pain that day but with the help of his stroller to lay down in and sleep and his meds we were able to get through the whole day. His stroller has really allowed us to do as much as we can.

Now onto the serious stuff.

We took a trip to Michigan yesterday to C.S. Mott Children's Hospital and the CVC to see Brocs Vascular Team. It was a very early morning as we left around 4:15am. His nurse came with which helped a lot with getting the boys ready and navigating all the testing that was done.

Unfortunately, things are not getting any better with Brocs leg length. His legs are now 9mm apart. After his revision was done in Jan 2015 his legs were 3mm in Nov 2015, then 6mm in May 2016 and now 6 months later 9mm. There's and our fear is that by March 2017 he will be 1.2cm again. He does have a 6mm lift inside his right shoe to help with this as the thought was that his leg was still getting used to the new blood flow and because he is going through a growth spurt it would even itself out. Well that is now not the case as we have seen in the last measurement. 

 

Excuse the toenails.

They want to schedule an angiogram for him to look at all his vessels in both legs. They are still unsure where the blockage is as all the testing we did yesterday was relatively normal except for the scanogram we did. This is exactly what happened in 2014 before his revision. The only clue we had testing wise was the scanogram until he had the angiogram and that is where the blockage was found. Broc gives us all the signs we need to know that he is in trouble. He has leg pain and knee pain with activity. His ankle keeps going over too while he is walking. He continues to walk on his toes too to compensate too. 

We have asked them that since the angiogram is not emergent at this time if we can schedule it for March 2017. Both Broc and our family need a break for a little while with medical procedures. 

Broc will be having a brain and spinal MRI with sedation in Dec as well as a sleep study and another airway surgery. We are hoping that will be it for this year as we know next year will have some more.

Thank you everyone for your love,prayers and support.

   

Back home

Broc and I came home on Sunday afternoon late. It wasn't too bad of a drive and thankfully not that long either as it looks like this may be our third hospital that we will have to frequent from time to time.

Broc and I had a wonderful time with the Rumping's and of course the families that we met at the hospital too. We met another heart family as well. It so great to meet all the moms that your friends with especially when you get to meet them face to face. The conversations that we have are so easy and you feel like you've been friends for years.

The pics of Cali and I are a little blury cause it was late at night but we had such a fun evening. I already miss her calling for us. When ever you were having a rough day Cali would bust out with something and totally change your mood and your day. Such a ray of sunshine!!

Broc was able to be part of a music video while we were at the hospital. He loved every minute of it. Playing games and singing, 2 of his favorite things to do. The artists name is Erika Scott. She was so friendly and made Broc and all the other kiddos feel like typical kids even though they had IVs, tubes and wheelchairs.

Being home has consisted of laundry and unpacking and of course cleaning syringes. When we have to leave for so long we draw up both boys meds for the week which entails about 50 syringes. Its so good to be home. We missed Daddy and Lil Mark so much. For Broc's next surgery we will all be going to Cincy. We are hoping to get accommodation at the Ronald McDonald House. If all goes smoothly like this time round then we should be home after a couple days. It will be a busy week for us as Broc will be having a brain and spine MRI at Riley that week too.

We are hoping to have a lazy November with very little illness. I know we cannot get away from it completely as its the season.

Thank you for all the love,prayers and support from everyone.

Surgery Day

We were up early this morning as we had to be at the hospital at 6am. Broc was first case this morning. He did so well with going off to sleep. Deanna and Kenny came to spend the day with us and keep me company while Broc was in surgery.

 The surgery went much faster than they expected which was good because Broc spent a couple!e of hours in recovery to try and get his pain under control. Once Dr Wood was done with the bronchoscope and lung wash he came out to show me his findings. Unfortunately Broc has grown a whole lot of extra tissue called lingual tonsils that could be very dangerous for him and cause obstructive apnea.
This tissue is not like regular tonsils where you take them out and that's it. This tissue just grows on its own. Broc has so much of it that they had a hard time scoping his airway. They actually had to pull the breathing tube back and push all the tissue away before they could find the airway and continue the scope.
In December Broc is scheduled to come back to Cincinnati for a sleep study and then surgery to have all that extra tissue removed. We don't know why the tissue grew it just did.

Dr D was very happy with the repair he did for Broc. The sutures will be taken out when he comes back for his surgery in December. Controlling his pain was the biggest battle today. Finding the right combination of meds was very tricky. Too much and his breathing is too shallow and too little and he is screaming in pain.

Finally this evening seemed like we reached a happy medium. If all goes well tonight we should be discharged in the morning but still have to stay in Cincinnati for the weekend in case anything happens.

Thank you to everyone that came to visit us today and for the IG and text messages. Thank you too for all the help with Lil Mark too. Having 2 sick kiddos and being in a different state really pulls at a moma's heartstrings.

Thank you for all the love,prayers and support.

I had to share this picture. This is Cali. Her and Broc share a very similar heart defect. We are staying with her family.

Day 3

We saw cardiology to have Broc cleared for surgery. He got the all clear after they did their own EKG. The cardio that Broc saw  was so gentle and kind with him. He was very intrigued with Broc's medical history but then who isn't right??

He even took the time to ask Broc if he has ever listened to his own heart. Broc has never done this. These 2 shared a special moment. Broc described his heart sounds just like a medical student would. Dr Cnato was so impressed with Broc.

Excuse the scary eyes.

Broc and I were so tired after all the appointments we went home to chill on the couch.

Day 2

Yesterday was a long day of appointments. Anesthesia was the longest one. I had 2 wonderful brothers to help me keep Broc company.

After getting all Broc's history and medication into the computer the Dr came in to check him out. They said that he is all good to go for surgery from their standpoint. 

After that we went to see Dr Wood who is amazing. He showed us all the pics that they had taken when we were here in 2014. Its so crazy that the ENT Dr at Riley wouldn't believe us that he has a cleft. Its clear as day on the pics. He was so kind in explaining the procedure and all the precautions they will take.

Thank you for everything.

Day 1

Many have wondered why we haven't taken a trip or gone on vacation in the last 3 years. This is why!!!!

Two totes of medical supplies are needed for Broc and a cooler with all his nutrition plus his stroller. Where would everyone else's bags etc fit?

Our journey was smooth with no hiccups. We are staying with a lovely family. They have an adorable little girl who is keeping Broc on his toes. We had a lovely dinner last night too. We have a busy day today with 2 appointments. We should also be getting all the information for surgery on Thursday.

Thank you to everyone who is helping with Lil Mark this week. We really appreciate all the help.

Thank you for your love, prayers and support. 

Back home.

Yesterday was a crazy day. Broc was taken to surgery around 10am to get a new GJ tube. Thankfully it was sooner rather than later as it was slowly but surely crumbling in our hands and we didn't know for how much longer it was going to last. Surgery went well. There was a lot of mix ups about his care at home and what antibiotics he should be sent home on. That took some time to figure out.

We discussed at length what more we can do to prevent these cellulitus infections. Unfortunately with all Brocs immune issues and his mutation which makes all things Broc wonky anyway we really are doing everything we can. There is a new tunneled line that will be coming out which will be better suited for Brocs needs. We are hoping that this will be available soon as its still in the testing phases. Its very encouraging to know that his team is always looking for more ways to keep Broc safe.

We got home very late last night so sorry for not updating. Today Broc went for a CBC and it is very concerning. His ped has the numbers and for now we are hoping that its his body still trying to cope with the infection. We will be doing another CBC tom and hopefully those numbers will look much better. Broc has periods where he has energy and then times where he just lays on the couch.

This week is supposed to be our isolation week before surgery next week. Due to us being in the hospital we unfortunately have somethings that have to be done.

Thank you to our friends that came to visit us. If the plan changes at all I will update as soon as I can.

Thank you for your love,prayers ans support.