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.