Brain MRI and a new central line

We left bright and early Friday morning. First thing was Brocs brain MRI. The anesthesia team was awesome and let me do most things with putting him to sleep and changing his TPN over to IV fluids. We had quite the party in the waiting room. Jon, Nadiene and Maddie came to visit us as well as Kelley and Carolyn. Thank you so much for all the support. It was great to catch up at usual.

Yolanda and I were able to eat some breakfast as we hadn't eaten all morning and leaving at 3am in the morning can make a person quite hungry. The coffee was great too. Brocs MRI scans took quite a while. Before his MRI we were told that he was getting a new central line too. We thought they were only going to try and fix his picc line, not give him a whole new one.

The hopes were to keep him sedated and then just put him in the elevator and take him upstairs for his central line, but the case before him took a little longer so Broc recovered down in MRI. Once he was awake enough we went off to see Dr Boaz to find out how his brain is doing. He gave us the great news that everything is looking really good with his brain as well as his surgery site. He did suggest a pain medication for Broc to help with his continual leg and feet pain but we have not made a decision on that yet. It could help him a lot and possibly his belly too but it could also have horrible side effects too.
Waiting to see Dr Boaz.

While we were seeing Dr Boaz surgery called us to say they are ready for Broc whenever we are done seeing Dr Boaz. Once we left Dr Boaz we headed down to surgery to check Broc in. We really didn't want to sedate him twice in one day but unfortunately it had to be done. Thankfully all the questions had already been answered when we checked in for MRI.

Always smiling.

These pics going down the hallway never get old. We always pray that broc comes back to us. Every sedation no matter how small can be dangerous to brocs heart.

In true Broc fashion he decided to spike a small fever while we were getting him all ready. Everyone went on high alert so a cbc and blood culture was done while he was under as well as a dose of IV ABX was given. We love it when the Drs are so pro-active with Broc. It shows that they truly care about him. The central line took about an hour and then we went down to see him. Our visitors had left once we left the MRI Dept.

Broc recovered well in the PACU and we left with giving him a dose of Tylenol for pain and fever and benedryl for his bites. Poor boy was attacked by a mosquito and it was driving him crazy.

Thank you to everyone that contributed to his fundraiser. We were able to use his new chair at the hospital. It really came in handy as he was very much out of it at times and wanted to sleep.

Thank you for all your love, prayers and support.

Brocs first bible reading

Last night Broc did his first bible reading in our congregation. Broc is very outspoken and proved that once again last night by his comment that horrified us as parents but everyone loved it and thought that is just how Broc is. It just goes to show this Buddy doesn't let anything stop him. Well done Buddy. We are very proud of you, especially Jehovah.

A little more clarification.

We spoke to Dr Nalepa over the weekend and he explained the bone marrow biopsy results much clearer to us. The fact that Broc does produce less blood cells than other children his age is the reason he is having lower counts. It is called hypocellular bone marrow. The next test that will be done will be done is a screening for test for all kids that have hypocellular bone marrow. Unfortunately with Brocs continual low counts we have to keep him away from crowded places and enclosed spaces with lots of people. Especially with the flu season approaching us fast. A simple flu or cold could mean a hospital stay for Broc.

Broc is still having a lot of GI issues. We are trying to increase his feeds but to no avail. We are getting better with his TPN schedule. We are also able to leave the house more as I'm more comfortable changing his TPN to IV fluids on the go.

We have good news. Broc has completed Science for Second Grade. He is so happy. He will now start Science for Third Grade too. We are hoping that he is able to do this with most of his subjects so he will catch up to the year he was in in school.

We realize that many people think that just because Broc is out of the house, running around or just being himself means that he is well and cured. The only time he will be cured or well is when Jehovah makes him well. Until then he struggles through every day. Some days are better than others. Some days he can walk and other days he needs his wheels. He is dependent on IV nutrition to keep him alive. He has pain daily which he has learned to deal with for the most part. Some days it gets too much for him.He gets tired really easily too. His Drs are really puzzled and I'm sure you all have the same questions we do as parents. Why can he not eat food? Why does it make him sick? His Drs have been in contact with another Childrens Hospital and they too have no idea. We have the option to put Broc through more invasive testing which may or may not give us an answer and we have decided not to do that at this time. In his short life of 8 years he has endured more than a typical adult goes through in a life time.

Here is a little collage that popped up on my screen from 7 years ago. How I wish they were this small again. It seemed as if life was so simple then.

Thank you for all your continued love , prayers and support. 

Been home for a week now.

We have been home for a week now. We just got our second delivery of TPN yesterday. We have had to make space in our fridge for his TPN and all the vit and heparin that I have to mix it with. Broc was doing a little better but he is back to only tolerating a little formula which is 5mls an hour. We run TPN for 18 hours and then IV fluids for 6 hours while he is off the TPN. He continues to have pain and nausea which nothing relieves. I try and help him with meds for the nausea which thankfully that does help most times. Draining his g port helps as much as it can. We use gas drops too which give some relief. Otherwise he just deals with it. He is so used to being in pain so it has to be a lot before it stops him from doing anything.

His electrolytes are doing really well on IV fluids and TPN. He has also gained a whole kilo in a week. For Broc that is amazing. He does have spurts of energy and tries to do things then tires himself out again. He is not able to ride his bike when he is on TPN as the pump and bag are too heavy for him to carry so he takes advantage of when he is on IV fluids and formula only.

Getting used to our new schedule is quite challenging but I'm getting it figured out. we have to take his TPN out the fridge at 10:30 so that it can get down to room temperature by 1:45 when we start mixing all the other things he needs in it. Then at 2pm we unhook his IV fluids and clean his lines and then switch him over to TPN. That runs for 18 hours till about 8am. When that is done we clean his lines and hook up IV fluids till the cycle starts all over again. While this is all going on he is still getting formula at 5-10mls an hour whichever he can tolerate. We also hook up a drain bag to drain his belly at night. He also gets medication 4 times a day through his j tube and g tube. It takes quite a lot of planning if we need to leave the house to have the correct supplies but so far all we forgot was extra batteries for his IV pump but thankfully his TPN and IV pump use the same batteries.

We got a call from his hematology team with the results from his bone marrow biopsy. All was fairly normal except that he is producing less red and white blood cells than normal. Because this can be found in many people's marrow they are not sure that it is significant enough for Broc to cause issues. They are running one other blood test the next time we are down there for an app to see if the lack of these cells can be causing an issue. We are still waiting for the WES DNA testing to come back and are hopeful that it will give us some clues too. We are not holding our breathe either as we know that it could just lead to more questions too. Dr H which we will see at the end of Oct may be able to help us too.

Broc continues to get viruses too which is causing fevers as well which in turn causes ileus's for him which causes lots of pain and discomfort. It's kind of a crazy roller coaster that broke its OFF switch. All we can do is strap our seatbelts tight and hang on for dear life!

Lil Mark is having a great year so far. He loves his teacher and trying so hard. He is having some extra math lessons twice a week which is really giving him the confidence he needs.

We will see Brocs GI team in October to talk about all that has been happening and see what our future plans are. Broc will be having his brain imaging at the end of this month. We are hoping that all is well and no further intervention will be needed.

Broc should be getting his medical special needs stroller soon too. It will make things so much easier for him and us when we are out. He will be able to lay down and sleep if he needs to. It will be much better support for him too.

Thank you for all your love, prayers and supports.

Day 4 at Riley and going home.

Broc is responding really well to the TPN and formula. We have him on a slow rate of formula as the TPN is giving him most of his calories. We had the whole GI team in here this morning. We have come up with a really good plan for Broc. We also have a plan for when his belly and intestines shut down again. Broc has gained weight while we have been here which is great. His color has also returned to his face too.

Broc has made friends with all the nurses and Drs here but Andrew has become his favorite med student buddy.

Thank you to all the friends that visited us while we were here and to everyone that helped out with Lil Mark. We will be leaving this afternoon as they feel that we can do everything at home for him. We will have his nurses come out and show me how to mix his TPN and hook it up.