the plan

Okay, more text, we should be able to get back to more pictures soon...

Today was an exciting day on many levels- we have a plan. Rory's care has been transferred over to the GI (gastroenterology) team specializing in liver transplant and intestine. The plan is basically to start from scratch and get this girl's weight up already. So, she is getting all of her nutrition through an IV (via total parenteral nutrition (TPN)). With IV nutrition, there is no question whether or not she will get the proper nutrients and she should gain weight. She will be on this exclusively until they can confirm that she is not losing anymore protein or blood. They will check her albumin level and blood count daily to see if the level drops. If it is stable they will very slowly introduce the elemental formula through tube feedings (food goes into a tube in her nose directly into her stomach) while continuing TPN. They will slowly increase the amount of formula she gets through the tube feed and then slowly introduce oral feedings (formula or breastmilk depending) while slowly decreasing the TPN. IF everything goes PERFECTLY smoothly (as in no vomiting, diarrhea, blood or protein loss) this process will take about two weeks.

While Angela was talking to the nutritionist to go over details about the dairy free, soy free, peanut free diet she has been on, Dr Mohan (GI attending) walked in with the biopsy results from the endoscopy/colonscopy done a couple of days ago. The results showed some mild acute inflammation and no histologic abnormalities or elevated eosinophilia. Basically, this means that Rory does not appear to have an allergy or sensitivity to anything (cow's milk, soy, peanuts) or a lack of digestive enzymes. So her nutritional problems (weight loss, protein and blood loss) looks like it is all related to her Hirschsprungs disease. A lot of inflammation from having all the poop sitting backed up in her gut for so long. Soooo with this news the nutritionist told Angela to eat whatever she wants and she promptly ate a piece of chocolate with nuts.

Rory's blood count (hemoglobin/hematocrit) dropped again (to the 6's) so she is getting another blood transfusion. They would like her hgb to remain around 10 so that she continues to gain weight. The hemoglobin is the oxygen carrying component of her blood- when it is low the body has to work harder to get sufficient oxygen to all of its cells (example can see increased heart rate or breathing rate).

Susan (Peter's mom) has generously shared her self and her time and has been here with us for most of this hospitalization. She has been helping out a lot with both Alex and Rory. Jill has also been pitching in tremendously. Yesterday Jill and Susan spent time with Rory at the hospital to free up Angela and Peter to spend time at home with Alex on Chinese New Year. We put on red for the Chinese New Year and then started to head off to Chinatown for the parade. While checking information we discovered the parade is actually on Sunday. Instead we went to over to Leora, Eitan, Amaila and Jerome's house. Afterwards, we met Joiwind, Amit, Lila, Aloe and Meli for dinner at a Greek restaurant before heading home. This worked out so well we did the same thing today and played with Alex at home, then met friends at the playground before coming home and eating chinese takeout.

While this has been a long process with lots of ups and downs along the way, we realize that there are so many things we can be so grateful for: that Rory's medical issues are all treatable, that we are here in this country were she can get this sort of medical attention and care (we realized had we been in one of many other countries, she would most likely have died those first few days), that her doctors are so amazing, that we have medical insurance (that first hospitalization bill is over $100,000!), that we have such great kids and that we have such incredible friends and family.

Our friends and family have been such an important source of support for us. We are so lucky that you are al in our lives. Here's to hoping all goes smoothly and she's home in a couple of weeks.