When I tell people my husband’s sister is very sick, they of course are sympathetic. But I can tell it’s hard for them to understand the severity of her sickness. After all, someone can be very, very sick, but they will probably get better in a week or so. When I tell people that Harlie is doing better (because she is!), I can see relief wash over their face. “Oh, GOOD. Things will be back to normal soon,” is what they are thinking.
Things aren’t going to be back to normal for a very long time. I think we have all had a gut feeling that that is the case, but since a medical professional had not yet given a specific prognosis, we were able to dance around the subject.
That dance is over. My in-laws were given the facts. I will relay my MIL’s own words that she used for a facebook update this morning:
Harlie is resting better this morning. The Surgeon finally talked with us on Friday. Harlie will be in ICU for a few more days until she is over the drug withdrawals and then they will move her to the floor where she will be at least 3 weeks. He said the average person has about 21 feet of intestines and she only has 1 foot left which is not enough. He will do surgery again… in 3 to 6 months to connect what she has in some way for them to do what they call Trophy Feeds thru a tube in her stomach to keep her liver and pancreas active. She will get her feedings thru what they call TPN “Total Parenteral Nutrition” which will be given to her thru a pic line in her arm. She will not be able to have anything by mouth because it has nowhere to go. And she will have to have a Bowel and Liver transplant. They will set up a consultation for us with Doctors in Miami, but they said the transplant would be at least 4 years down the road. A person can survive only a few years on the TPN feedings because it starts to damage the liver. I am having a hard time comprehending all of this. I can’t imagine anybody not being able to drink or eat. How do you tell a 4 year old they can’t have candy, cookies, etc…This will be a life changing experience for our family, but as long as we still have Harlie, we can handle anything!!!
I think that paragraph really puts into perspective the severity of what’s going on. That’s why prayers, encouragement, and yes, even financial support are still welcome! Harlie’s recovery is not going to be a short sprint, it is a long marathon. I am so glad that she is surrounded by such a great cloud of witnesses for her marathon. The love and support around her is tangible.
On a different, but not different enough, note, Melanie’s sweet baby Will is also hospitalized for a GI Tract problem. Prayers for this innocent tiny baby are also appreciated!
I’m not sure how to end this post. With my frustration with having friends and family hurting and sweet children going through pain noone would ever wish on anyone? With my concerns for this upcoming week as I am away from my family again? With the fact that Season 2 of Downton Abbey is available to watch at pbs.org for only 8 more days? (I’m sorry, I had to fit something lighthearted into this!) But I think it’s best to end this post with a Psalm.