When this journey began, I knew very little about the heart. I knew that it was beating in your chest and was found on the left side. As we've walked through this all with Hope, I feel like I know more about the heart than I'll ever need to know! Now with Hope's liver issues, I am being educated on a new organ.
This morning the liver specialist came to see me, he does exist! He was worth the wait as he took time to explain the complex issues to me in a way that I would understand. He asked what I did in the medical field when he was finished, I guess my lingo is getting good!
I left our meeting feeling very encouraged. The shunt for Hope's portal vein is still a surgery that we'll hope to have. There is a chance that she won't be able to have it, if the clot is too large and takes up part of the vein that is needed for the shunt to function. What I did not previously know, is that there are other shunts that would be an option for Hope. These shunts go into different veins and do not solve our low blood flow to the liver issues, but do help with the hypertension. It would be enough to give us time.
The shunt surgeries happen at different hospitals across North America depending on the shunt you have. We could be going to Montreal, Toronto or Chicago. There is also a small chance that the surgeon would fly here and operate on Hope in Edmonton. These are decisions that will not be made for some time as Hope won't be heading down this road for another year or so. At this point they need to finish the treatment with her varices and have her more stable.
The specialist explained a lot more about the varices to me and I left feeling more in the loop. She will likely not return to the OR until early January to have the procedure repeated. It will take 4-6 treatments on average to destroy the varices. Hope will enter the OR once a month until they feel they are under control and no longer a threat. At that time, they'll begin taking her in every 6-12 months to keep a close eye on them as the treatment is not permanent.
While I had the specialist's attention, I talked with him about Hope's feeding issues. Early this morning the nurse drew 48 mls (5 hours of feed) out of Hope's stomach, undigested. We have been told over and over that we need to push through, but clearly this is not working. I explained specifically to him what was happening and our history with feeding. He recommended a medication, and Hope had some tests done to be sure her heart would handle it and it was started this afternoon. Hope is already taking 20 ml feeds and tolerating them beautifully! I'm trying not to get my hopes up, but this medication may be the solution to all of our feeding issues. This could potentially speed up Hope's recovery and get us home faster. I won't say by Christmas as I don't want to get too crazy, but I do think about whether or not that would be possible!
Last night I had 4 hours of sleep. Hope was not settling all night and that meant I couldn't fall asleep. It's after 11 pm here, I have Hope asleep in a vibrating chair that I am also rocking with my foot as I type. She hasn't been asleep for long and I'm praying she'll stay asleep as I transfer her! If you're still awake, please pray we all get some much needed sleep tonight.
Sadie is really sick, she has a terrible cold and appears to be getting worse each day. She wants to cuddle with me and I'm terrified of Shawn or I getting sick. Please pray that we would be protected from this cold as it would make taking care of both children almost impossible. I have been able to have dinner with my family more often with the help of many loving people, thank you to each of you that has come to cuddle Hope for us!
This journey is full of ups and downs. Today has carried a few small victories and for those, we celebrate! I can only hope that we continue to climb up in Hope's recovery and stop taking the dives back down.