Saturday, September 15, 2012

Day 161

After rechecking his heart on Thursday, Jacob was discharged from the hospital. The fluid has remained about the same. The cardiologist said based on the size and location of the fluid build up, the risk of piercing his heart to try to drain it would be too great. So for now they are monitoring him closely to make sure it doesn't get worse. They have no way of knowing what caused the pericardial effusion without actually testing some of the fluid. It is most likely a virus based on the positive rhino nasal culture he had this week and the low grade fever he's had for the past couple of weeks, but other causes could be medication or gvhd. He also came back positive on a nasal culture for mrsa, something he most likely picked up from the clinic or hospital. It's not causing any problems right now. It's a type of bacteria that he would not be able to fight with CGD, but they think his new cells can keep it in check. We just have to monitor him closely for signs of infection, like always.

While we were in the hospital, Jacob stopped his tacrolimus and switched over to sirolimus for his immunosuppressant. For 2 days in a row his lhd improved, which seemed to indicate that the tacrolimus was the offender causing his red blood cell destruction. However, on the third day, his lhd jumped right back to where it was. Jacob is now switching off sirolimus to cellcept to see if we have any better luck. If our Kaiser team is unable to see improvement in Jacob within the next couple of weeks, then Jacob and I are heading back to Seattle. Kaiser has already started the authorization process.

Jacob was able to stay off tpn and even came off feeds Wednesday as he began to eat more. His favorite food in the hospital was chicken, but now that we're back home, he's all about the chips and salsa again. He still gets iv night hydration to get his electrolytes and to fill in any gaps in his fluid intake, and I can supplement his diet with some feeds if he is not eating enough.

Naturally with everything that has been happening to Jacob, I've been struggling with exhaustion and discouragement. It's difficult to hold on to hope when things continually go wrong for him. I still second guess myself if we made the right decision pursuing bone marrow transplantation. Some lucky CGD patients actually live a long and relatively healthy life. We seemed to have made matters worse for him.

Ethan's 7th birthday is right around the corner. When we first returned home from Seattle, I thought we'd be in a good spot with Jacob that I could throw a party for him. Now I'll be lucky if I'm even in town. It's hard making future plans and moving on with life when things change so quickly from one day to the next. I've learned I have to always have the laundry done just in case we have to whisk Jacob back to the hospital for a week or more at a time. I thought being home would be easier, but to be honest, there is just more to try to keep up on in addition to Jacob's weighty health issues.


Lindsey said...

So sorry Kylene. I can't imagine. We are praying for you guys everyday. Thanks for posting the update.

Our Family said...

So I've been thinking about what you wrote "making the right decision". What if there are two "right decision"? Don't over think it. We are so happy that his transplant has took and has a chance at a normal life. You continue to be in our prayers, Love you.

Alice said...

I am so sorry to hear about J's setbacks. It must be so trying and difficult for the whole family... I will continue to pray for J and for you to have strength and hope when things don't go the way we expect it. Please hang in there. We are rooting for you all.

Short Fam said...

Thinking of you guys and especially Jacob. Please let me know how we can help. I agree with some of the other comments, don't second-guess your decision, the Lord has a plan and it is in His hands.