Family update.

March has been pretty busy for us. Broc continues to puzzle all his Drs. Everyone is now saying that they don't even have a baseline for him as he is always changing. We used to be able to tell how he was doing based on his labs or if he developed a fever but that is not even the case anymore. He can be severely ill or dehydrate and his blood work will show him being perfectly healthy. Now all we have to go by is how he looks, feels and what we see.

He had a nasty cellulitis infection starting around his GJ tube so we quickly took care of that before it developed any further or spread to his blood stream. A week ago he became very ill with an immense amount of pain and vomiting. We thought maybe the stomach flu but his pain was hitting a 10 or 11 on the pain scale for him. Broc rarely says he has a pain number that high as he has a very high pain tolerance.

By the next morning I was not able to keep him stable anymore and we took him to the ER. There bloodwork was done as well as a CT Scan. It showed that he had a narrowing in his intestine and his whole intestine small and large were filled with fluid. Our boy was very ill. Again with only a small fever and very little signs of infection.

The call was made to his team at Riley and they wanted him there as soon as possible. Unfortunately waiting for an ambulance is our only option which can take up to 10 hours sometimes. Broc and I took a ride at 8:30 that night to Riley.

It was a long night as we only found out at 5am that surgery was not needed. It was a rough couple days for our Buddy as he DOES NOT like to be NPO (No food or liquid by mouth, not even ice chips). It makes for a very unhappy and MAD Buddy.

Thankfully Lambo saved the day. Broc loves the therapy dogs in the hospital. He loves how they calm him down and climb on the bed with him.

Lambo was like a big fluffy white teddy bear.

Since we have been home we are still trying to manage his fluid levels. He is still on the dehydrated side but seems to be doing a little better. He was so dehydrated once we got to Riley they pumped almost 3L of fluid into him as well as potassium and other electrolytes that he was low on.

We have not been able to restart his formula yet as his belly is still not happy with large amounts of volume in it. We are hoping to in the next few weeks. Everyone is concerned about his bilirubin levels as they are still increasing but we are watching them closely. It is our hope that even 2oz of formula over night will help his number come down. We did see a decrease in his levels when we were able to feed him a little.

Unfortunately his belly or gut is always in an ileus state so it makes feeding his gut very difficult.
His team (GI and surgeon) will be imaging him again at a later stage to make a long term plan for the narrowing that happened in his intestines. We are still not sure what caused it so that needs to be evaluated further. 

Broc will be seeing Cardiology and Opthalmology on Monday so I will be updating once we see those specialists.

Mommy update:
I have good days and bad days. Some days I can walk ok with my cane and other days I need the walker just to walk around the house. We still don't have definitive answers for my foot and leg. I have seen another vascular Dr and will be having my first procedure in April. This will be a series of 4 procedures. He may have dx me with something else but we will go down that road once my legs are fixed. We are hoping that the venous issues will help my foot at least a little bit. It continues to be a daily struggle but I'm doing my best.

Days like we had in the hospital are extremely emotional and physically draining for us as parents so it does take a little time to readjust when we get back home. Broc is very scared everytime he is admitted. Through therapy we have learned that he isn't sure whether he will come home or not. This plays into his fears of being admitted. If you ask him he will say he loves it because of Child Life and the games he can play but honestly he is a terrified little boy that doesn't know whether he will see his brother or mom and dad again. We try and make things as happy and cheerful as we can.When Broc goes to sleep at night is when all the days emotions hit me and flood me with tears. I try and stay strong the whole day, put on a brave face for him and tell him everything will be ok and we will be going home soon but honestly, we never know when or if we will go home. Every admit has its own fears and anxieties. Lil Mark is at home worrying how his brother is doing. Will he come back to him? When he sees us again he is so MAD/SAD/ANGRY that he he just cries. I think hes relieved that we are coming home and his brother will be ok. He can finally release all those scary feelings he had the whole time we were admitted.
We pray that we will go home and be a family again. Those are just some of the feelings and emotions our family goes through every admit.   

Unfortunately my health issues haven't made life very easy for us. Hopefully soon they will be sorted and I will be able to handle things better. I may still have to walk with a cane but that is okay. Learning to adjust is something our family knows well.

We have a Special Event we are attending tonight. The Memorial of Jesus Christ's Death. We will take our annual pictures for all to see.

Thank you for loving our family and supporting us with your encouraging words and prayers.