Back at Riley - Day 3

Broc's labs were a little better today but not where the Drs want them. They were going to send us home today it realized that because we were not going home we would not have TPN for Broc so they decided to keep us. He will be having labs again tom to make sure they are going in the right direction.

We had a fun day playing the wii the Broc being his old self again. All the nurses could see how mush better Broc was feeling today. The love hearing his laugh out loud and talking their ears off, those are all things Broc doesn't do when he is feeling bad.

More tests were sent off today too so the Drs could cover all their bases. Broc sees cardiology tom. We are hoping for no surprises but if there are we will handle them in style. We are hoping Broc has great labs tom so we can go home to recover from this illness and get strong for his next surgery.

Thank you for all the love and prayers.

Back at Riley - Day 2

Well unfortunately Broc spiked a fever again last night. It wasn't passed the 24 hour mark so they just gave him Tylenol to bring it down. If he spikes a fever again today blood cultures will be drawn as well as fungals too.

The new pain medicine for his belly is really helping with his pain. We have started pedialyte today and will go up 1ml every 2 hours until he reaches his 5ml then we will add formula to it. Hopefully he will tolerate it with no pain. If he doesn't tolerate it its not a huge deal because he is still on the TPN (IV Nutrition) at home.

Unfortunately Brocs lab work was very low this morning so he is nuetropenic. Everyone is on alert for another fever spike. If his labs are not going up by tom morning then they will keep him until they start to trend upwards. Energy wise Broc is still not his normal bouncing off the walls self.

So for now we are just hanging out resting.
Thank you for all the prayers.

Back at Riley Day 1

Broc has not been well for over a week now. He was in the ER on Sunday night and diagnosed with an ileus. They drew blood cultures and they were negative. We left Sunday thinking Broc had another virus. Tuesday we thought he was getting better but Thursday morning woke up with a fever and more belly pain so we made a trip to see his ped. He said Broc still has his virus and needs more time to get over his ileus.

By last night his fever started going higher and he was not feeling well at all. I packed my bags and we headed to Riley. Broc had a high fever when we arrived so more blood cultures were drawn and he was admitted.

We got to bed about 4am after all the Drs came in to talk to us. With brocs compromised immune system they have to be really careful with how they treat him. Unfortunately he spike a fever again this morning so another iv antibiotic was added to the mix. He will also be having a slew of labs drawn to look for infection and inflammation.

He is still having lots of belly pain so another med was added to help him with that and he is still on gur rest.

Unfortunately due to the flu restrictions we are very limited on visitors so please text me or message me if you would like to visit.

If you would like to bring a coffee or a meal etc I could meet you at the entrance to his floor but you will not be allowed to come back and visit him.

Thank you for all the support ,love and prayers.

Urology Update and ER surgery.

Two weeks ago Broc was scheduled for his urology studies. We had to be there bright and early in the morning so we stayed the night before. Broc handled his testing like a champ. There were wires and tubes where no one wants wires and tubes but he practiced his breathing techniques he was shown. We are so proud of him especially since about 10 minutes into the test they realized Broc is a cardiac kiddo and needs to have a pre-med before any invasive procedure like that.

While he was lying on the table playing the ipad I had to run downstairs to the pharmacy to get his antibiotic that cardiology ordered.

During the test I learned a lot about Broc and his body. He had the whole urology team talking about him. Normal pressures in your bladder are 8-10 and Brocs were 37-91!!! Extremely high. We also learnt that his bladder is really small and he is able to hold only half the amount he is supposed to hold.

We were very happy we were not looking at a muscle tone issue as there is not really much that can be done for that. Unfortunately it confirmed our suspicions and we were told that Broc will need the Tethered Cord Release Surgery. He will be having the surgery on April 1. We are hoping that the surgery will help him.

Broc will not be leaving the house after the March 25. We will be starting breathing treatments 3 days prior to help his lungs after surgery.

While we were at our urology appointment Brocs central line broke. We called down to IR and thankfully we were already at the hospital so they were able to get Broc onto the OR schedule in a couple hours.

Everything went very smoothly and they were able to place a brand new line. They also placed a new GJ tube at the same time as he was due for a new one.

This past weekend we were able to attend the Imitate Jehovah Assembly. We were all looking forward to it and really hoping we could all make it. Broc was not well with lots of pain and nausea but we took his chair to make him as comfortable as possible. He really enjoyed himself and of course loved walking over the bridge to look at the koi fish. He loved seeing all his friends and of course the singing. Brocs loves to sing.

Unfortunately Brocs belly got worse on Sunday morning early and we ended up in the ER last night. His KUB (x-ray of the belly) showed that he has an ileus with either an infection or really bad virus. We are waiting for the blood cultures to come back. We are very happy that we can give him comfort care at home with IV fluids and the medications and treatments that he needs.

Thank you for all your loving support.

Having fun in the snow.

Sometimes you just have to unplug literally and have fun. We couldn't leave Broc hooked up to any fluids as they would get very cold and cause him pain so we chose to unhook him for a bit and let him play with his family in the snow.

Here are some pics and of our boys having fun.