Bigger is NOT Better

Life with Hope is always full of ups and downs, anything else would be too simple.  This morning we arrived at the hospital and Sadie wanted to hold her sister.  Hope was in a great mood and laid nicely on Sadie's lap for quite some time.  I love to see the two of them together and enjoying each others company, it's beautiful.  I was then able to steal Hope away for some cuddles of my own.

The surgeon came down early, at 9:30, and had me sign an ECMO consent.  As I mentioned yesterday, this is basically a life support machine that is used when the heart or lungs fail.  I have never been asked to do this before, but I reminded myself that they were being extra cautious.  I felt very comfortable with the anesthetist and knew that Hope was in the best hands possible.  We tried to count how many people were going to be in the OR with Hope and guessed that at least 10 people were surrounding her.

One hour after Hope was wheeled out of the ICU, 2 doctors from GI came to meet with me.  Things were worse than we'd thought.  Hope has 4 very large varices in her esophagus that were almost blocking off her esophagus completely.  Hope was then intubated and put under deeper sedation so that the surgeon would be able to inject these varices to shrink them.  If she was bigger, they would put bands around them to destroy them, but this is not possible when you're only 5kg.  As a result, they injected the varices today, and will need to do this again multiple times.  They plan to take her back into the OR in 2-3 weeks.

Hope came down 2 hours after she was taken and was still intubated.  At this time, 7 hours later, she remains intubated.  She did well through the surgery, the varices responded well to the treatment and her heart was stable.  They are struggling to extubate her as she is very sleepy and not breathing on her own.

We have been waiting to meet with the liver specialist.  After hearing about Hope's scope I inquired again about why he had not come to see us.  We found out that he is currently away and will be coming to see us on Monday or Tuesday next week.  We look forward to that meeting as he will be able to give us a lot of perspective on what is next for Hope.

Hope's portal vein clot is VERY severe, even the two branches that come off the portal vein are clotted.  This is not good news for Hope going forward and is going to be a difficult journey.  With the level of pressure the portal hypertension is causing, the varices will return.  There is a good chance Hope could have a bleed in a part of her body that they are not able to reach with the scope, this could be deadly.

We are hoping at this point that Hope will be able to have the portal shunt surgery.  We're not sure how big she needs to be and if this is even an option.  We hope that it is, as it may be our only option.  It was not a day full of great news and there are still many unknowns.  We still praise God that Hope came through the operation and appears to be doing well.

Please pray for strength for our family, we are not anywhere close to being finished with this journey.  We are tired, but still standing and we know that only God could give us that strength.  Thank you for continuing to pray for our sweet girl!