We have had a couple appointments and spent a night and day at Riley hospital. Broc had an issue with his new central line and and ileus so we had to have it all checked out. Unfortunately Broc was running a fever which he does most of the time due to all the viruses so we had to say over for some IV antibiotics to cover him in case his blood cultures came back positive.
We see Brocs GI and he wanted us to try solid food again. I was very against it as I knew what it could do to him but we obliged and tried some. BIG MISTAKE!!!!! The poor boy was in so much pain and then he ended up with a pseudo obstruction. The last 2 weeks have been really rough on him. He deals with pain daily and this just added to all of that. GI finally admitted defeat and said there was nothing more he could offer us so gave us a referral for the Motility Clinic at Riley. We have been offered this before but know what all the testing involves and we didn't want to put Broc through this. Unfortunately this is our only option to hopefully one day get him off TPN and figure out why his digestive system does not work like it is supposed to. We have an appointment in January to see the specialist. We are also on a cancellation list so hoping to get in sooner.
Broc was not gaining weight like they want him to so his calories were increased in his TPN. He was also having some fluid issues so they increased his fluids too. He is also draining a lot at night so we are having to replace that with IV fluids in the morning.
The fire station down the road from us was having a fun day. I was really hesitant to take the boys. Brocs numbers were not too bad that week and he was having lots of pain so we really wanted him to have some fun. The boys got to climb onto the fire trucks and look around.
Unfortunately a couple hours after our trip to the fire station was when Broc became really ill. We never know when these things will happen. We were very happy that he was able to enjoy an afternoon like a little boy.
These Drs apps and hospital stays also play a role in my health too and I need a couple days to recover but sometimes if there are a couple in a week then I need longer to recover. My hip has been causing some issues again so I went and got a cortisone shot which seemed to have helped me. No time for mommy to be down.
We did not get to see the genetic specialist as we thought. Apparently he needs an actual dx before he will see us. Those results will only be back around February we think. So until then we are trying to keep Broc as comfortable as possible when he is in pain. He has had some new things come up. He is calling them "weird" episodes. We have called cardiology and they are having us hold one of his heart meds for a month to see if that makes a difference. So far it has not helped at all. If they continue it will be up to his ped to try and figure them out.
We also had a couple levels tested and found that Broc is not absorbing his supplements so we are going to increase the dose to see if that helps. This particular supplement helps his cells produce energy for his body to function. Either his dose is not high enough for him or his body is needing so much that it cannot keep up.
Thank you to everyone that helps us out even if its at the last minute. We truly appreciate all you love,support and prayers.
