WE HAVE A PLAN!!!!!

I am so happy we have a plan. Brocs team came together and we brainstormed. We wrote down our concerns and what we wanted for Broc and our family. Dr Nalepa came down to see us on Monday while we were at Riley and he emailed Dr Moustafa that evening. Between the 2 of them they came up with a great plan for Broc.

We will no longer need to take Broc to Riley unless his ANC is lower than 500 or he needs a procedure of surgery. Broc will be treated at La Porte Hospital in the ER with IV antibiotics or if he has positive blood cultures he will be admitted to La Porte Hospital.

This will allow our family to be closer to home and spend more time together. It will allow friends and family to come and visit us at the hospital too.

We wanted quality of life for Broc and for our family. Lil Mark will be able to come and see us whenever he wants and Daddy can take turns with sleeping at the hospital if we are admitted over a weekend.

Jehovah cannot take our problems away but he can surely give us the help we need to make them a little easier.

Thank you for all the love,prayers and support.

He was so happy to get home!!

Day 2 at Riley.

Broc continues to have fevers on and off. He is not tolerating any liquids at all. Even ice chips are causing him pain. His cultures are still negative so we are thinking viral but those are not back yet either. All his cell lines have dropped so we are watching those too.
Thank you for all your love, prayers and support. 🐸🐸

Back home and then back to the hospital.

Broc spent a total of 6 days in the hospital after his surgery. On the 6th day he was doing a little better with walking. His fever was low grade so they felt it was safer for him to be at home than at the hopital.

 Once we arrived home his fever did spike again so we called and let his team know. They were okay with just watching him. He fever got better over the next day or two. It was quite a challenge keeping up with all his meds that he needed. His nurse was great in helping me make a schedule for this.

Friday was Lil Marks last day of Spring break so we took him on a special trip. We went to Sky Zone. Him and Mikki had such a fun time jumping and tumbling. Grandad and I had a great time watching them and taking pics.

Once we were done we went to the mall for lunch and had Marks favorite food - Subway.

Unfortunately Broc had another rough day on Friday while we were out. Sat morning we gave him all his meds and then he layed down on the couch. He slept for 5.5 hours!! 

I decided to lay down too while he was sleeping. Thankfully I did. Little did I know what night I was in for. Broc felt warm after his nap so I took his temp. It was 101.8F so I called his Drs and they said to keep an eye on him again. Unfortunately it kept going up and when it reached 103F  I called his GI team back and they told us to come down to Riley. On the way down his fever shot up to 104F so I gave him some chewable Tylenol. Once we arrived at the hospital they took us back immediately. It took quite a while to get all his orders in. Blood cultures were drawn and a RVP swab. We got to our room at 3am and went to sleep at 4am after answering all the questions and going through all his medications.

We will be here for 48 hours on IV antibiotics or unless something grows on his cultures.

Thank you for all the love ,support and prayers.

Day 4

Sorry there wasn't a Day 3 update. Yesterday was an exceptionally difficult and emotional day for all 3 of us. Broc slept a lot yesterday which was my first inclination something was up. When he wasn't sleeping things were going crazy.

Broc is not feeling any better. He has had a fever since last night and his WBC is higher. We are being moved out of ICU and onto the floor to be closer to his team. He also has lots of swelling in his back which they are concerned about. Unfortunately my mommy instinct is always right. Thank you for the continued prayers.

Day 2

Last night was crazy to say the least. I was up about 5 times with Broc. His pain was not well controlled either between his belly pain and back pain.  Thankfully he took a nap today. It wasn't nearly as long as he needed but it seemed go help cskm him down. He was so over whelmed with pain and steroids that he couldn't calm himself down so I had to climb into bed with him this morning and hold him.

He really needs to sleep and heal his body. Tomorrow they are wanting him to get out of bed and start moving around more. His belly is still giving him lots of trouble so the complex care team said he just needs time for that.
Please pray that we have a restful night with little pain.

Thank you for all the love and support.

Day 1

This was after his surgery yesterday. He took a couple hours to be stable enough to leave recovery so Mark and I hang out there with him. Broc was the last kiddo to leave the PACU. Oonce he stabilized we came up to his room in ICU. Once we got his pain controlled we had a good night. 

 

This morning the teams are very happy with how he is doing. He is in pain when he has to move around but pain meds and muscle relaxers are helping him with that. They are raising his bed slowly throughout the day to see how he handles it. His GI is not very happy. Anesthesia alone slows his GI system down so that will take a while to wake up. He tried drinking some Gatorade this morning which caused him pain.

Today is rest and recovery.
Thank you for all the prayers and support.

Tethered Cord Surgery

Broc was in really good spirits today. Unfortunately the surgeon was running an hour behind so surgery was later this afternoon. Surgery is still going and we should be able to see him in about 2 hours. We have had quite a few brothers and sisters.

Dr said everything went very well. Broc will be going to ICU.
We are hoping for a pain free night. We will update tom once the Drs have rounded.

Thank you so much for all the prayers and support