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.

Second day at Riley

Broc woke up in a much better mood today. The team took away his isolation which gives us much more freedom. We can leave the floor and see things other than our 4 walls. We tookna short walk to see the dolphin show on the monitor then we bumped into Bailey at the RMD room. Broc was so happy to see Bailey. He really misses his buddy Mark when he is in the hospital so being able to see any other kiddos is such a treat for him.

We had a mishap last night where his night nurse forgot to close his medport on his g tube. Even though he had his g tube hooked up to a drain bag over night it all drained out of his med port. Poor boy woke up soaked in stomach contents and bile. It was disgusting. He got a bath very quickly and we changed all his linens. We are a little concerned about him getting an enteric infection but hoping that the iv antibiotics that he is on will cover him for anything.

He will be having his surgery tom as soon as they can fit him on the schedule. Once he recovers from that we are hoping to leave as all cultures are still negative but we know we cannot leave until they are finalized at 48 hours.

Thank you to the friends that have come to see us. Thank you for all the love,prayers and support. I will update tom about surgery time and how it went.

Back at Riley

Broc's central line site was looking pretty angry since Tuesday night. I was in contact with his team and they said to watch it. By Friday morning it wasn't looking any better but not any worse. Since Broc is due to have surgery in 2 weeks everyone wanted it cultured and blood cultures taken too. While the nurse was culturing his site Friday morning it started oozing which is never a good thing. Dr Moustafa was going to admit us locally for iv antibiotics but unfortunately Broc's gj tube broke late Friday afternoon so we all decided it was best to head down to Riley.

Once I got everyone's bags and meds packed Broc and I headed down to Indy. We arrived around midnight. His team decided to draw cultures again and admit us. We got to the room around 5 am. Needless to say I'm exhausted. Surviving on 1 hour of sleep is a lot of fun with a child who doesn't want to be here. Broc is done with hospitals. Unfortunately there will be many more admits in his life time. Please pray for him to have a calm heart.

The plan is to do surgery on Monday to replace his gj tube and stay on iv antibiotics until 48 hours if his cultures are negative. Praying they are not positive otherwise that will be a whole new ball game.

I'm going to snuggle my boy and try and keep him calm. Thank you for all the love,support and prayers. Thank you to all the friends that are helping with Lil Mark.