Day 7 in Cincy and home

Today was organizing all the home care services and making sure Brocs IV antibiotics would be delivered as soon as we arrived home. Going over all the paperwork and packing up took quite a bit of time. They went over all the things we had to look for if Broc became ill again.

They stressed how important it is for Broc to stay away from public places and places where there are lots of crowds of people especially during cold and flu season. This cold virus that Broc caught made his immune system critically weak. His numbers were very critical for a couple days. Because his system was so weak he was not able to fight off the bacteria. Thankfully we got him started on IV antibiotics as soon as we did. Things could have been much worse.

He has an amazing team and they really look out for his best interests. We arrived home safely late this afternoon. The rain was really bad driving home but the closer we got to Indy the less it rained. We will be keeping Broc away from people until we know that his immune system is back to itself again.

He has another procedure coming up soon and we need him to be healthy for that.

Thank you for your understanding and help.

Day 6 in Cincy

Today was another lazy day. Broc is still hanging onto a low grade fever which is not a great concern but non the less it's a little worriesome. Broc is having low blood pressures which are being watched. We are really hoping we can leave tomorrow. They are drawing another CBC in the morning. Really hoping Brocs labs are stable in the morning so we can leave.

Broc will be on IV antibiotics for a couple days once we get home. We will keep him home too so that his body can have time to fully recover. He has a cardiology app and a procedure in March and then surgery for ear tubes and an Immunology app in April. Next couple months will be pretty busy.

Thank you again for all the help.

Day 5 in Cincy

Broc had a good day yesterday. He is still a little weak when he stands and walks. He was up playing with cars and toys yesterday too. He is still dealing with belly pain and knee pain. His temps are low grade now and have been normal until yesterday so they are watching that. His counts are up which is great but for Broc now they have gone past the "great" zone for him and up into the "oh dear" zone. Broc is so difficult to treat and take care of cause he is so complex. We will discuss what is the best option for him.

I'm still taking meds and resting as much as I can. We did play some Uno yesterday which he enjoyed. ENT will come by today to look at his ears and see if they are possibly the source of infection.

Thank you for all the help with Lil Mark. Thank you for all the prayers and encouraging words.

Day 4 in Cincy.

Today has been a very lazy day. I woke up feeling much worse than yesterday. Broc on the other hand is feeling much better. His numbers have doubled since yesterday which is incredible news. Instead of Broc having MRSA he has MRSE. Always making life interesting this boy.

Unfortunately we cannot have any visitors. I don't want to make anyone sick. This is no joke at all. I'm hoping I'm better before I come home. I don't want to give it to daddy or Lil Mark or have Broc get it again.

Thank you again for everyone's help. It really takes a village to raise a Special Needs Child.

Day 3 in Cincy

Today was a little rough. Broc tested positive for the coronovirus. This is just your common cold but has really done a number on his immune system. At the moment his poor body is fighting a bacterial and a viral infection. Unfortunately he has shared his cold with me, so as soon as I woke up I ran down stairs to the pharmacy and got some cold meds. Really hoping I feel better before I have to drive home.

Today we sang songs and watched some videos on the broadcast. We also did some school lessons. The nurses loved learning about fractions and exclamation marks.

His counts are still coming up very slowly. We will take that as a positive. Still no word yet on the sensitivities of the bacterial infection he has. We are still happy that blood culture no.2 has not grown anything yet.

He will not be able to have his ear tube surgery now as his immune system is very weak still. We are hoping that he will be able to last until we come back in April to see the Immunologist.

Thank you again to everyone for all their help and thank you for the continued prayers.

Day 2 in Cincy

Today was a pretty boring day. We got some good news. All his stool studies came back negative including c diff. We were very worried about that as he has been and still is on a lot of antibiotics. He had a second blood culture drawn this morning and will have another one tom morning. We have not heard anything back yet form the second blood culture.

Broc also had an echo done today to make sure that he didn't have any vegetation growing on his heart. Thankfully there is none. Broc is still fever free. He played on the Xbox and played with some toys today. He is still very weak when he walks around.

His counts have also come up slightly. His ANC is still extremely low so he is still very neutropenic. We will be happy when his WBC reaches over 2. He is only at 1.4 today. We are trying to make ourselves comfy here as we will be spending the weekend here and possibly a couple days next week.

Thank you again to all the friends that are helping look after Lil Mark. Thank you for all the prayers too.
🐸🐸🐸🐸

No surgery

Broc was supposed to have surgery today but he had other plans. He has been off all of last week and just really tired. We thought it was his ears bugging him, then w thought he was feeling bad from his IV therapy and the long trip to Indy. Thursday he told his therapists that he was not feeling well and has no energy to do therapy. They let him take it easy.

The weekend he wanted to play so he pushed himself a bit. He also slept during the day which he doesn't do often. Last Tuesday his labs were a little low for him but nothing we haven't seen before. He spiked a fever Monday night and was still saying he was weak. He also developed a new tic which made me wonder if something crazy was going on with his body. When he gets really sick like this it sends his sensory system into overdrive. I checked on him during the night and he was cool. Unfortunately he woke up Monday morning with a fever again. He crawled into my bed and said he's so weak he can't walk.

His nurse came to see him and help me get things packed. She said she had never seen him so sick before. We called all his teams to find out what to do. The decision was made to drive to Cincy and he would be evaluated in the ER.

The drive down was very quiet as Broc slept most of the ride. He only woke to use the restroom when I stopped. His fever climbed higher and higher the closer we got here. Things went very smoothly once we arrived. He was taken straight back and antibiotics were hanging and labs drawn in about 20 min of us being there. His labs came back really low which had us concerned. After he had some Tylenol he was feeling much cooler.

We arrived in our room around midnight. It was about 2am by the time I had finished talking with the team. They were very concerned about Broc and we decided on the best plan for him. It was decided that it was too risky to take him to the IR with such a low count.

He did well over night with no fevers. His counts are unfortunately lower again today. He scared the team a little so they are looking into some other things and drew more labs this afternoon. He has slept most of the day. We are hoping that tom will be the last day his counts drop or they may start to come back up. He is extremely neutropenic right now and is not able to fight off any illnesses. Whatever infection he has has caused bone marrow suppression as well. It's. a game of wait and see.

Thank you to all the friends that are helping with Lil Mark. We appreciate it so much. Thank you for all the continued prayers and support.

🐸🐸🐸🐸

Another surgery

Our Buddies ear has not been right since they cleaned his ear tubes out at the beginning of the month. He has been on one antibiotic and is now on a stronger one for 10 days to see if it will help clear up the infection in his ear. We will be heading to Cincy for surgery for ear tube cleanings again and possibly putting in new ear tubes. We are not sure why he formed blood clots behind his ear tubes.

Being on 2 antibiotics is has not been very kind to our Buddies tummy either. We think he has another virus or something going on as he has another tic that has developed. He is also running a fever despite being on antibiotics. We are hoping that its nothing serious and just his typical viral/fever thing that he gets. Its so weird cause no one else gets sick from him either.

He is doing very well with his new ankle braces and they are not stopping him at all. He is still able to run,jump and climb as much as he wants to. He has been complaining of lack of energy and not being able to keep up. We are all patiently waiting till he sees the Cardiologist in March to see how his heart is doing. We did see Pulmonary and they think that his being out of breathe is all due to his heart taking more strain. We will continue to use breathing treatments when Broc is ill.

The boys had dental cleanings and they both had great results. No cavities!!! Broc unfortunately has to have a baby tooth removed later this week. After the dentist appointments we went to visit their old park as they call it. As littles they had some great times at that Park.

We re-inacted some pics of when they were little, much to their disgust. I loved it!!

Love these boys so much. 

Some new kicks!

Our Buddy has been having a lot of knee,leg and feet pain. It has a lot to do with his chronic pain from his connective tissue disease but it also has a lot to do with his alignment. He also toe walks a lot. So much so that he could be looking at a surgery to help his tendons out. We all know his does not need anymore surgeries so trying to help align him is the best option.

He used to wear SMOs (special ankle braces) when he was younger and then graduated to UBCs (a molded support in each of his shoes). Now he is back to wearing SMOs as the UCBs are not supporting him as well. He is also not able to toe walk with SMOs although he tries really hard sometimes. We have to keep reminding him.

Here is a pic of his SMOs as well as his new shoes. Unfortunately when you have SMOs you need a bigger size shoe. Well in Brocs case you need a shoe that is 2 sizes bigger.

The Dinos were a no brainer. Unfortunately they didn't have frogs for him otherwise he would have chosen them.

In other news Broc will be seeing Pulm next week. We are hoping to do some testing then and then we will go back for more. He will also be having an iron infusion that day too. Sadly his right ear has another blood clot in it so that may have to be removed when we go back to Cincy in March. The Immunology team has asked to meet with Broc.

There are about 10 days left to get a sweatshirt if you would like one. Here is the link.

www.booster.com/brocsbuddies4 

Thank you again to all our friends and family for the love and support. We really do appreciate it.

Triple scope and then some.

Broc had his triple scope done today. We got to spend a fair amount  of time with every Dr before the procedure. All our questions were answered, the ones they could answer.

It took a little over an hour for everything.
ENT - Scoped his airway and it looked beautiful. Even the artery that they cauterized. You couldnt tell where the repair was. They removed stitch from his laryngeal cleft repair and that was healed nicely too. We did ask them to look in his ears as he has been complaining of pain on and off. There was really nothing the ped coukd do because they looked good and the tubes were open and working well. He had no signs of an ear infection. What they did find was blood clots behind the tube and lots of debri around the tube that was very hard. This is what was causimg him all the pain. His ears are still bleeding this evening but we hope they will settle soon.

GI - We did find the source of the bleeding. Yay!!! Because Brocs tissue and lining of his mucosa in his stomach and everywhere else in his body is so thin everytime we pulled back to release trapped air in his be!ly, his G tube would suction against the stomach lining and would cause lots of bruising which in turn caused bleeding. I feel horrible knowing that I was doing this to him. At least now we know and we can move forward from this. Just to clarify this had nothing to do with the artery rupture in his airway in Dec. These bruises on his lining were not there in Dec when he had his previous scope so things are definitely changing fast for our Buddy. They did take more biopsies to see if there had been anymore changes. GI is also still waiting to see if the Immunology team hasbany thoughts as to why he continues to get ilueses to see how it is related to his immune system.

Pulmonary - We informed the Dr of all the new episodes that broc is having od being out of breathe with very little activity. He said he was going to do some investigating and see if he could find anything. Unfortunately we think he may have. Its a good thing and a bad thing. When he took a further look into Brocs bronchial tubes he coughed really hard, but when he did that his bronchial tubes collapsed a lot. Meaning Broc has floppy bronchial tubes. This gives him a new dx of Mild Bronchial Malasia. The Pulm Dr has requested that Broc do some more testing similar to a stress test to see how his body handles the activity level and how well his body copes. Unfortunately when they put the scopes in for his broncoscopy his airway got very bruised and bleed again under the skin. Showing us once again how fragile Brocs tissues are.

His team here are very concerned about his declining health and would like to monitor him every 6 months. It also depends on what the biopsies show and the testing that he will have done.
Typically a child would get better and their health would  improve as they got older but unfortunately in Brocs situation that is not the case. He is actually declining  more the older he gets.

This journey with Broc is ongoing and we dont foresee an end in sight. The best we can do is give him the best quality of life we can. Maintain what we can and try and support best we can. He is an amazing little boy with an incredible memory and smart as a whip. He has a brother that loves him like no other. This journey is a rough one but we can do it with the help of our friends and family and of course our God, Jehovah.

Thank you for all the love and support you have all given us.