Since most bedtime prayers tonight revolved around two things 1) thank you that Emily is home and 2)help the doctors figure out what is going on "next time", I think most family members are realizing that another visit is probably inevitable. Bummer! I'm not sure HOW they seem to know this.
Emily had an appointment to see the pediatric gastroenterologist scheduled for this coming Thursday. Dr. Riedel met with us today at the hospital instead! Since he's the ONLY one I was so very grateful that he took the time to see us today. He was kind, informative, supportive, knew already who Emily is, that she's one of five, adopted, on a dairy farm, listened AND remembered what I had said, and lived up fully to ALL the wonderful things I had heard about him from other parents and staff. I would guess he should be enshrined somewhere in some doctors' Hall of Fame.
1)He approved everything that had been done so far.
2)He has a plan for "next time". If Emily's fine, great! If not, before she gets dehydrated and put on IVs he wants some tests run. The plan is in her file at the hospital. All we have to do is take a copy with us.
3)Parasites, food allergies (celiac came back negative), and possibly cyclical vomiting are possibilities. Cyclical vomiting would be migraines that take the form of puking your head off instead of headaches.
She'll keep using miralax and add a Disney Princess vitamin to up her zinc which is apparently low.
I'm bummed that after three hospital stays (well, four if you count the last two separately) we still don't have an answer and will probably be back, but I'm so relieved to be home. Emily started squealing as we came past Jim Bowman's. She squealed some more when four kids came pouring out of the house to squeeze her. I think I got A hug and an offhand, "Hi, mom" or two. :-P
This morning she had her repeat Upper GI (came back fine: very slight hiatal hernia, otherwise normal) and it took awhile to get her late breakfast approved and delivered. She was one MAD kid. When the "team" came in this morning to talk, she cussed them out in Chinese baby babble. A granola bar pacified her slightly. The doctors were still talking when Her Royal Crankiness' breakfast arrived. Clark Kent/Superman never did a faster transformation. She grabbed that tray and couldn't get food in her mouth fast enough. She CHEERED, GRINNED, and CHARMED as she stuffed cheerios, sausage, and eggs in her little mouth. She played, cheered some more, teased, and smiled. I was so happy to have them see her as her "real" self instead of the sick, listless ghost or Her Royal Crankiness. Emily was their last patient to see and they stayed for awhile after her evaluation just to enjoy her happiness. And, oh my, she was SO HAPPY!
Yesterday was pretty rough emotionally. I was pretty angry about some of the ineptitude that resulted in more suffering for Emily. I feel that overall her care was excellent, but a better communication between medical staff could have prevented some of this. Emily's nurse was wonderful. She helped me to be a better advocate for Emily. I'm her momma. Kenton and I make the final decisions, not the medical team. We need to look out for her best interests.
Warning: Do NOT say to this cranky, exhausted, PMSing momma "I understand how you feel." unless you have been in my position. You will get an earful. Yes, I did apologize later. He most graciously forgave me.
It was kind of fun to see a bunch of doctors cooing and grinning over a joyful baby instead of questioning the color of her emesis, the consistency of her normal stool, or the frequency with which she voids. What?!? What's wrong with vomit, poop, and pee?
I was informed by these professionals that she is SO CUTE, bright, and their only concern with her development is language. No less than three foreign looking/accented doctors, told me not to worry but that this would be delayed.
There were four Emilies on the pediatric floor the night we were admitted. We connected with five-year-old Emily M. She's also seeing Dr. Reidel for similar problems. Emily M. liked to play with our Emily and so her mom and I had frequent chances to chat in the playroom. One night the two Emilies were sharing a wagon ride when I realized that Emily M.'s mom most likely had a name besides "Emily's mom". Turns out her name is Holly, too. That gave us a smile. We made lots of trips around the pediatric ward with the two in a wagon, one Holly pulling the wagon, the other Holly steering the IV.
Anyway, we're home at least for awhile. Kenton(despite his nightmare schedule from chopping corn and parlor adjustment craziness) and the kids have the house looking pretty good!!! Kenton even did some laundry. Well, the downstairs looks pretty good, the bedrooms look like a bomb went off at a Goodwill store. I'm really exhausted. I don't think we'll do school this week, I think we'll just regroup and start fresh next week.
School? I've been asked. Here's the plan and a sincere thank you to those concerned. The school year is twelve months. As long as we have everything done (relative term), our overseer (the local school board) doesn't care WHEN we get it done or if it takes until the end of August. If Emily's health continues to put dents in their education, we'll take a serious look at switching them to public school. I spent around $700-800 on curriculum this year so I hate to just ditch it. Also, the kids have had a lot of adjustments with adding a family member and the stress on everyone with Emily being in the hospital. Really, I think moving them to public school right now would add stress instead of relieving it for anyone. If it becomes necessary, we're for homeSCHOOL, not HOMEschool. Education is important to us.
THANK YOU for your prayer and support. We have been so blessed by many of you. I feel overwhelmed to continually be on the receiving end and I have learned and relearned the agonizing truth of "It's more blessed to give, than to receive." I don't want to be a drama queen (usually) and Emily's long term health doesn't appear to be in jeopardy, but this has been a rough journey inspite of many blessings.