Courage for Kennedy – Journal


January 7, 2006

Category: Gratitude,Treatment – Melenie 5:18 am

Now that Kennedy is awake, that has it’s own host of issues! Rather than make excuses about why I haven’t updated her site, please be aware that it is 4 am on a Saturday morning and I am in the resource center rather than sleeping.

I’m going to go back to New Year’s Eve and catch everything up so that you are all back in the loop…when kids start waking up and screaming in the PICU, it is time to move them! Kennedy managed to stay off the ventilator and because she was in serious but stable condition, they thought we would all benefit from moving back to the schoolage unit. Dr. Norwood, bless him, knew that I would not be happy if we were stuck back in 3530, so he generously moved us to 3526. Oh, how nice to have a shower!! Okay, I was still taking showers, we just didn’t have a shower in our room. Kennedy was moved with a HUGE amount of nursing orders and she still required close monitoring, oxygen and respiratory therapy every 4 hours but we were home (our 2nd home at least). It was quite a production to move her and all of her things. She still had fluid in her right lung and needed her “air” bed but was improving. We were worried about how she would do, in my opinion she still needed more nursing care but I wasn’t going to complain, and it was understood that should she back slide at all, we were to return to the PICU. I slept with her that night just to ensure she wouldn’t have too many problems and to ease my own anxiety.

New Year’s Day-Kennedy continued to do well despite having a bad night of little sleep and vomiting. She was still on the Morphine drip but we were trying to decrease the dosage. Needless to say, mom did not get much sleep for sure. Her ammonia levels and liver enzyme levels hadincreased slightly so her med that attaches to the ammonia was increased. Now, Kennedy has NEVER been great with taking oral meds-even before she was diagnosed with cancer-and to ask her to take 40ml, 3x per day seems very excessive to her. This became a battle for all of us and she either flat out refused to take it (spitting it all over us) or would vomit it up 15-20 minutes after we finished getting it in her. How frustrating!!!! Oh, she is her mother’s daughter! When she was born, we worried about giving her such a strong name-and while she needed it-she can be so difficult! Aunt Amy and Alan were here for the weekend. On Saturday, Austin and mom ran home to get some work done that included paying bills-Yippee-so we missed seeing them. Sunday we were there and really enjoyed visiting. Amazingly, Kennedy really liked Alan and enjoyed playing with him-ok, she threw her kitties at him but she was laughing. They took some really great pictures of the kids and I hope to have them up on the website soon. Sunday night she did better. Oh, I forgot to mention that on Saturday, Kennedy accidentally pulled out her IV in her foot and bled like a faucet. This caused mom to have a little “freak out” at the realization that a new one had to go in ASAP. I demanded that Dr. Norwood get on the phone but he thought it would be a great learning experience for the resident to actually deal with me-we haven’t seen her since. I’m really not that bad but when it comes to my babies, I am as protective as a mother bear. I had had it with the whole “poke her forever just to get one line” and told them they only had two shots at it, could not use her badly bruised arms, her abdomen or head regardless of how good the veins looked. They managed to get one in on the first try. When Dr. N came by Sunday, we scheduled her PICC line in for Tuesday. I was absolutely at the end of my rope. I’m sure poor Keith thinks his wife is turning into Godzilla! Okay, Sunday. Kennedy’s liver function has essentially stabilized and plateaued. They do not expect her to get worse, but there is no time line for her liver fully recovering.

Monday, Keith returned to work and I had Austin for one more day. Kennedy is awake more and getting all kinds of therapy (occupational, physical, speech, music, art, etc.) so things are very busy around here. She is very clingy and anxious after all that has happened. We are having to build trust relationships all over again. She cries if I am just out of her sight! This is emotionally exhausting for all of us. We were still having medicine issues and this is now her chosen battlefield. This and food-her two favorites! She continues to be on TPN, but her drs. want to see her eat to truly assess her liver function. Also, TPN must be processed by her liver. There was some talk about an NG tube to get meds in and for food but we haven’t heard anything more in the last couple of days. Because her ammonia levels were not decreasing, they doubled one of her meds to 20ml every 8 hours. She was so delighted-she just had more to throw up. She was very happy to see daddy when he got off work-she had gotten so used to him and papa being there everyday that she really noticed when they were gone.

Tuesday, Kennedy’s friends Rebekah and Gage were admitted for chemo. Rebekah’s family brought us food and even made us cookies! Thank you, thak you, thank you-another family who spends so much time up here and living out of their trailer can truly understand what the gift of home cooked food means! Kennedy was delighted to see Rebekah and they spent some time playing. Gage and his family had just returned from Boston so it was fabulous to see them again. More physical therapy and a wheelchair on Tuesday. Kennedy can at least sit unsupported for up to 3o minutes but is unable to even stand. She was less than interested in the chair until her brother saw it after school and showed her just how cool it really was. It helps that Amy, her PT, found a pink one! Tuesday was the day that Kennedy realized she had slept through Christmas day. When Austin went to school, she knew break was over and she had not had Christmas. She was pretty ticked off about it but I reassured her that Christmas did not have to happen on a certain day and no one would unwrap her presents or take down the Christmas tree until we had truly celebrated. This helped calm her and gave her something to work towards. Dr. Barclay and Dr. Riley, liver drs., came by and asked a lot of questions about Kennedy’s state of mind because her ammonia levels do not seem to be decreasing. I tried to explain that with the increased amount of meds it was becoming more difficult to administer them but they had no interest in changing that. Aunt Tammy picked Austin up from school and he had a lot of fun hanging out at their house and eating spaghetti for dinner. Cheryl came by to visit, so Keith picked him up from Kylee and Cody’s. We had a great visit. I forgot to mention that Kennedy is also struggling with her speech. It is frustrating for us because we can not understand her clearly and she gets mad and gives up trying to talk. She has to make a concious effort to make her lips, throat and tongue work together and take a deep breath to project her voice. Sometimes she seems to do very well and at other times, it is just not worth all the effort. Lisa, her speech therapist, made her a board with pictures and she does know signs but her desire to speak and be understood at this time is more important than just getting her message across. Just keep bring on that crap buffet!! It will improve and everyone on her care team really believes that getting her home is the best therapy of all. So, she had visitors and seemed to tolerate that well. Before Aunt Tammy picked up Austin, they came by with yummy food and Kylee had a Strawberry Shortcake poster for Kennedy and a red rose for me. She has so much love and compassion for others-what a gift. We had a nice visit with them and even Auntie Caryn and the girls were here. Amber did great and Kennedy just lit up at the sight of Emily. Amber even got in my lap with Kennedy and gave her lots of love. Overall, it was a very busy day and I was happy to hit that pillow.

Wednesday, more therapy. Dr. Barclay declard Kennedy “out of the woods” and feels that it is very unlikely she could slip back now. Kennedy did much better and was only requiring oxygen at night. Daily chest x-rays were still the norm and she continued the Bi-Pap every 4 hours. This made it very hard to sleep. I forgot to mention that on Tuesday Kennedy was supposed to get her PICC line in and an LP with intrathecal Methotrexate. Her counts were too low for any chemo and there was some confusion about the PICC line. While it is possible that she would only need another line until Saturday, it is equally possible that she would need it for future chemo. Because we are not ready to make the decision about adding another central line, this gives us a way to give her meds without adding IVs and 6 months to see what her chemo will look like. So, wednesday, that was done and despite the large amounts of “sleepy milk” as Kennedy calls it, she woke up before we wanted her to. She became upset but quickly calmed down when she realized why we were holding her down and her arm still. We had to hold her this way until x-ray was done and we had the results. I was very pleased with how she reacted. Dr. Olson believes that we can slowly introduce chemo drugs and wait and see what happens. I plan to send Kennedy’s file to several docs at top universities and medical facilities just for opinions before we proceed too quickly. I just want to know that we are doing the very best thing for Kennedy.

Thursday and Friday were of course more therapy. Kennedy can be cooperative but does not always choose to be. She did ride her bike in PT on Wednesday but screamed for all but 10 minutes on Thursday and was some what willing to participate on Friday. She wanted nothing to do with ST at all on Friday and pretty much refused to help. She has started eating small amounts of food so we plan to go home with TPN. She has also begun taking Marinol again. When a person doesn’t eat for long periods of time, their body stops telling them they are hungry and they just continue not eating. Marinol will tell Kennedy that she is hungry and once she begins really eating, her body will get back to “normal.” Grammie and I took her to the cafeteria for dinner and she actually had some spaghetti. It’s nice to just see her being willing to eat something. Dr. Olson told her that her two jobs were to take her meds and eat food. They did talk on Friday that she would try to find better tasting, smaller amounts or just different meds for Kennedy-we’ll see what she comes up with. They are also planning to send us home on Saturday! Woo Hoo!!! Kennedy still requires supportive care for her liver but is no longer requiring Morphine to manage pain or oxygen. In fact, on Thursday, they reduced her Bi-Pap to 2x a day rather than every 4 hours. She will not be walking or standing so that requires more work and she doesn’t talk much but that will all improve with time. Austin stayed the night at Skyler’s house and Kim stayed the night with us. In fact, she and Kennedy are snuggled up and snoozing right now. This allowed me to catch a few zzz’s with Keith in the trailer. Oh, I can’t wait to sleep in my bed again! Also, our Arthur Academy family has been wonderful. They are providing meals for us, providing lunch for Austin (and not just whatever the hot lunch is but stuff he actually likes!) and they are planning a fundraiser at Papa’s Pizza for our family. I will have more details regarding that soon. The Moose Lodge is also working on another fundraiser, perhaps a casino night with movies and popcorn for the kids. There will be another poker tournament in the spring and were working on a golf tournament, too. A quick word of thanks to everyone who has donated through PayPal and to Oregon Catholic Press for their donation of $3000 to Kennedy’s medical fund! We have been so moved by everyone. Thanks to State Representative Jeff Kropf, my former boss and friend, for allowing me to share Kennedy’s story during the Lars Larson show on December 30th’s First Amendment Friday. That really helps to get the word out and I’m thankful for the help and concern that has poured in as a result. I’m sure I’m leaving out things that have happened this last week and people who have visited or helped but know that we appreciate everything that you do-all the prayers, visits, phone calls, e-mails, food, help with Austin, prayers (can’t get enough of those!) and just loving and caring for us during this time. God has angels working right here on earth.

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
Margaret Mead (1901 – 1978)

“Life is a long lesson in humility.”
James M. Barrie (1860 – 1937)

Many thanks this morning to the “small group of thoughtful, committed citizens,”

Melenie

January 3, 2006

Category: Gratitude,Treatment – Melenie 1:59 am

I apologize now for the short journal entry but I have had several nights of no sleep and am very tired. We appreciate all the wonderful e-mails, guestbook entries and prayers for our girl during this difficult time. Kennedy is no longer in the PICU. I’m sorry we did not post sooner-she was able to leave and go the schoolage unit on Saturday with many, many orders and only on the condition that her respiratory function improve. She still is receiving the Bi-Pap every 4 hours but can go long periods without her oxygen mask. We are turning the corner for sure. They are placing a PICC line tomorrow because after 5 failed IVs, and more than 30 attempts, I put my foot down and demanded a better means of giving her meds. She is too unstable for heavy sedation/surgery, so this will be performed Tuesday in Day Treatment. Because everyone knows so little about the Defibritide, it must not be combined with other meds or TPN. She is doing much better and appears to be on the mend. She has also been upgraded to Serious but Stable condition. I will write more tomorrow.

Here is to a full 6 hour stretch of sleep-may it be mine!

Mel