Our Riley stay

Lil Mark came down with a virus late Tuesday evening. I took him to the ped on Wednesday. Thankfully the flu and strep test were negative. He was really not well so we kept Mark and Broc a part as much as we could. Lil Mark was quarantined in our room until his fever was gone. Unfortunately Broccoli woke up on Thursday morning with a fever. It was a little higher than what he is so we took him in for some lab work. His numbers showed that he was fighting something.

By late afternoon he was not well at all. I emailed his hematologist and he said that we could watch him closely. When his fever shot up to 102.6 I called his GI team at Riley and they said to bring him down. When Broc gets a fever of 101 we have to bring him to Riley to be evaluated and worked up for a possibke line infection.

Mikki and I packed our bags and food and headed down. Thankfully I had called ahead so they were expecting him. We were trriaged very quickly and more labs were drawn. They started with the small antibiotics and then got us upstairs as soon as they could.
Once we got to the room they started 2 big antibiotics. When you come into the hospital with a central line and a fever you stay on iv for 48hrs.
Brocs belly also shutdown once again so we quit all feeds for a day or two. Yesterday we did pedialite only. We just added formula to that. So once again we hope he will tolerate half and half.

Today he slept until noon so we were a little concerned but now he is up in the chair and feeling much better. He is still very congested and puffy looking. We know he is getting better cause he started singing this evening.

If everything goes well tonight we can leave tomorrow. We will be back in a week as Broc was scheduled to be here from Jan 4-7.

Thank you to everyone for all the support with Brocs fundraiser. Thank you too for all the love prayers and support.

Brocs Buddies Fundraiser

Brocs Buddies Fundraiser is coming to a close in 2 Days!!!

If you haven't bought a t-shirt now is your chance to get one. 

It ends December 24 2015

www.booster.com/brocsbuddies2

Thank you to everyone that has supported our Buddies fundraiser.

G I happenings and some results

A couple days after my last post we saw Brocs GI Dr. A very caring Dr who is always thinking positive. The last time we saw him I had mentioned "IF" Brocs gets off TPN then where do we go from there? He immediately stopped me in my tracks and said not "IF", we say "WHEN". Since he has been following Broc for a couple months now and with my many phone calls and questions he is beginning to see the bigger picture. We are still waiting for our consult with Dr Croffie at the Motility Clinic. Well Dr S and I spoke about that appointment and his tune is changing a little. He doesn't think that they will be able to offer us much or even the testing that we are eagerly waiting. He is now saying "IF" with me with a very sad tone in his voice.

Since Broc had the Gastro a couple weeks ago his GI system has never been the same. We have tried many times to give him straight formula but it makes him really sick. We are trying half formula, half pedialite for a couple weeks then going to lessen the pedialite until he will tolerate straight formula again. This is a very delicate process as Brocs belly holds onto as much formula as it can without making him too sick. He has not gained much weight in the past couple weeks. We are hoping that his body his just wanting to remain stable and nothing else is going on.

Broc is still dealing with his "episodes" of severe nausea,blurry vision and lightheadedness. He gets really pale when these happen too. Unfortunately Broc is starting to look very pale again more often than not. I know many people say its because he is not going outside and seeing the sun. Not the case, everyday that the sun has been out we have made a point to take him outside for some sunlight and fresh air.

We did Brocs Mitochondrial Results back. We have been told that he doesn't have any Primary Mito Diseases. On the one hand we are very happy and on the other we are still looking for answers. we know these are not the full results and he could still have a secondary Mito Disease or a Mutation which could make it a Primary Disease. We are still anxiously awaiting those results.

Broc is starting to have some very disturbing episodes with his heart when he is exerting himself. His HR is extremely fast and his heart can be seen beating out of his chest just about. He is telling us that his heart is hurting him when he is playing hard. We have already done a 24hr holter monitor test and that was all normal. Brocs case has also been taken to the cardiac conference and they all said that nothing more needs to be done for his heart at this moment. We are very concerned about this so I will be calling the Drs myself tom and not going through the nurse anymore. He was on a bp medication to help with his heart function but they have taken him off that as they thought that it was contributing to his "episodes" that he was having.

In between Broc not feeling well we have had a lots of fun.

Mark got a new bow tie for his Bible reading.

We went to movies with family.

We took advantage of the amazing weather we have been having.

Just in case you were wondering those are not Brocs flapjacks, they are my dads.

  

Lil Mark is so excited about learning to play the piano.

Tomorrow Broc will be having his vascular follow-up appointments. We are really hoping to hear the great news that his legs are the same length and that we will only have to be followed every year or two.

Just a reminder that there are about 10 days left to get yourself a Brocs Buddies T-shirt. Here is the link to purchase them. 

www.booster.com/brocsbuddies2

Thank you to all of you who have already purchased a t-shirt and supported us.

Thank you for all your love,prayers and support.