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.
🐸🐸🐸🐸