Well, we had a whole 6 days out of the hospital before we had to stay again at Hotel Emanuel. We just can’t stay away from the luxury suites, gourmet food, unlimited amenities and pampering staff-okay, I’m sorry for the sarcasm but I wasn’t kidding about the pampering staff! There are definitely benefits to being a frequent flyer.
Kennedy had count checks on Monday and I was not surprised to see that her red counts were very low. Because her appointment had been in the afternoon, it was really too late to get blood so we decided to return Tuesday. Kennedy received a unit of red cells and everything seemed to be cruising along fine. She was feeling so good that we were able to join Grammie, Papa, Bammie Kathie, Uncle Jeff, Auntie Caryn, Emily and Amber for dinner at Szechuan Kitchen for Auntie’s birthday. Kennedy even ate some of their infamous egg drop soup-for those of you who know her well, she will eat this no matter how crappy she feels. After heading back to Auntie’s, to get in to her jammies and say goodnight, we headed home and she crashed out. As I was laying her in bed, she started vomiting blood; not just old blood but bright red with clots in it. This sure woke us up. I was bummed for her but also because I really wanted to sleep in my own bed and read my book. I called Dr. Olson and she thought it would be a good idea to do a direct admit to receive platelets. A direct short-stay admit allowed us to avoid the ER which is very traumatic for Kennedy. After arriving, and being admitted by our favorite RN-Megan, Kennedy continued to throw-up blood and we had no choice but to deal with the resident who was on. Now, I realize that the residents have to use this as a learning experience and are the eyes, ears and hands of the drs. when they can’t be there, but they drive me crazy! Dr. Norwood reminded me recently that he was once a resident-I told him that I would not have liked him either. Every month it is someone new and they always ask the same questions…again, and again, and again. I want to ask them if they have read her chart-I mean, 8 months later and they’re still wanting me to recite the story of how we found out Kennedy had leukemia. Anyway, she had not written the orders for platelets despite the fact that we had been there over an hour! By the time the platelets arrived, were administered, Kennedy received Zofran for vomiting and was hydrated, it was after 2:30am. So much for a short stay. I arrived at h0me in time to see my husband out the door to work.
I was able to sleep a whopping 2 hours before Kennedy started having horrible diarrhea. Now, for those who do not want the graphic details skip the next few sentences. *The first diaper leaked on my bed and was thick, gooey and bloody. The next 4 were also yucky but managed to stay in the diaper. When I stripped my bed, it was actually bright red despite being dark in the diaper.* I called the clinic but they were swamped and after 30 minutes no one had called me back so I called and asked Darlene to get a nurse. Now, on top of dealing with this, I also had to find a way to get Austin back to the doctor for his asthma. He had been having problems for a while and had even seen Dr. Skau on Friday but he did not seem to be improving. I was able to get Kennedy in at 1pm and Austin at 3:30pm. I figured that way either I would be able to take him or Keith or my mom would be off in time to take him.
After arriving at the clinic, we found out that while Kennedy’s platelets were stable, her red counts were shot again. All I could think was, “Oh my God! Didn’t we just go through this?” She fell asleep and I began to worry as I watched her cheeks get more and more flushed. Sure enough, she had a fever. As most of you know, a fever means an automatic 48 hour stay. They probably would have asked us to stay anyway because of the unexplained bleeding. Keith arrived in time to take Austin and after adding another med to his regimine, they returned so I could go home and get a few things to get us through for a couple of days. Kennedy was admitted and there were orders to receive blood and an abdominal x-ray to check for bleeding. Dr. Olson thought it could be that Kennedy had developed vericose veins at the base of her esophagus as the result of her VOD and that the NG tube could have irritated them. Combined with low platelets, this would cause bleeding in her stomach. They started Kennedy on IV antibiotics, started her feed back up and waited. By Thursday she had no more bloody stool or vomit and was onery as could be. She also had no fevers but that night her cultures came back and it revealed that she had a bacterial infection in her PICC line. Now, to go home, she needed to be fever free for 24 hours and have 2 negative blood cultures. This put us going home possibly Saturday. Ugh!
On Friday, Dr. Olson came by to say that she had decided that Kennedy was doing so well that we were going home (good thing because Kennedy was FULL of energy) it was just a matter of whether or not we went home with antibiotics for her PICC or not. After some consideration, she decided to just pull her line. I had mixed feelings about this-I mean all the work it took just to get it in-but decided it probably was our best option. Kennedy was less than thrilled to say the least but when she was ready she wanted it done immediately. Our disappointment in leaving so early was that we had been so happy to have Nurse Raeann. She is usually working in rehabilitation now so it has been awhile-Kennedy loves stories about naughty Roxy (her pug). She also loves stories from Amy (pt) about crazy Lucy. Soon we’ll have stories about our own wild Bailey (Kennedy’s dog at Papa’s).
Before we left, Kennedy had her therapy evaluation with Dr. Shih. After talking with us, he would like to have Kennedy re-evaluated by occupational therapy, read the assessments from physical and speech therapy and look at doing a “boot camp” style outpatient with Kennedy for 2 weeks (really hard 4-5 hours 5 days a week) then back down to 2 hours/week of pt, 1 hour/week of speech and 1 hour/week of occup. Of course, we have insurance to deal with. Speaking of, we just received a letter today saying they will not pay for dietary (what??? for a child who doesn’t eat???) or home health care! It is so absurd!! Many thanks to Gina, April, Al and Kim for giving me information regarding groups that will be able to help us in addition to fundraising. What a pain!!! Maybe when I finish school, I will make a career change working for healthcare/insurance reform. I hear that both Kitzhaber and Kulongowski are interested in this issue-while I won’t give up being conservative, I would be glad to give them input from a personal perspective!
Oh, Kennedy was supposed to have chemo on Friday but as you can imagine it didn’t happen. We have an appointment in the clinic on Tuesday so we’ll see what the plan is. It is not only dependent upon her blood counts but also on how her liver is functioning. Her liver hmm…according to Dr. Barclay she is doing just what we expect her to. Her numbers are still considered high by normal liver function but they are getting closer to normal-they are definitely stable.
Check out our fundraiser page for information regarding the Indoor Garage Sale. If you have anything to donate there is information on how to get donations to the site and there are also flyers available for print to promote the event. As you may have seen, both bracelets and t-shirts will be available soon. The bracelets have been ordered and I think we have finalized everything on the shirts to move them to production. This is so exciting! 🙂 I also know that there are other fundraisers in the works so check back soon.
Austin is doing better-he missed a whole week of school due to asthma-and I think we have it under control. I must say that having both kids to entertain at the hospital was a little much!
I also would like to thank Soft Star Shoes (Check them out in the links section) for their generous donation of shoes for Kennedy! Their elves are absolutely wonderful! They make shoes for all ages and the quality is outstanding. Every pair of shoes is handcrafted of top quality leather. Thanks to our neighbors, the Graves, for their generous donation, thanks to Kim and Roxanne and so many others at Arthur Academy for the Christmas gifts and food, thanks to Oregon Catholic Press for their generous monetary donation, thanks to all our close neighbors for their prayers and love and concern, thanks to Peter and Elaine for the donation of “Lunch” and “Dinner,” thanks to all who have made donations through her bank account and this website and for all of those leaving caring, loving messages in her guestbook and all who pray, love and adore our little baby. You are all so wonderful and we could never do this without you. Thanks to her nurses who are so devoted to their jobs and us as a family. Thanks to Becky for support and this website-you are the best. Thanks to everyone with advice and help in dealing with insurance. Thank you to Kristy Parrish and her stamping friends for the beautiful hand-made cards that have come for all of us from all over the US. Thank you to our family and friends for doing all that you do. Thank you, thank you, thank you to all of you; you all make this journey easier to walk. We are so blessed and ultimately we thank the good Lord for everyday.
“In prosperity our friends know us; in adversity we know our friends.”
John Churton Collins
Love-Hope-Faith
Melenie
