So who needs neutrophils anyway, right?! This is the first time I've seen Kennedy's at a big fat zero! The rest of her counts are on the way up though so the neutrophils should follow soon... Dr. Frangoul said MAYBE we can be out of here by the middle of the week! (Trying not to get TOO excited! LOL)
Anyway, all is well here. On Saturday the kids came up (not to Kennedy's room, I met them downstairs) and we went to lunch. Kameron informed me that The Bridge to Terabithia (sp?) is an awesome movie but I may not want to watch it because it might scare me. :o) What a great guy, looking out for his mom! It was nice to spend time with them though they were sad they couldn't see Kennedy too. I promised them soon! If nothing else, the incubation period will be over this coming Saturday and they can come up here if we're not home for some weird reason.
Kennedy is doing well. She's been very defiant today LOL. My mom said the nurse came in once to do her vital signs and she absolutely refused! She usually cooperates so well, so I had to laugh a little. She also started a fun game of throwing all her babies off the bed... behind the bed... at me... at Keeghan... whatever! At least she's finding ways to entertain herself!
My mom stayed with Kennedy and Keeghan last night while I went to a party for our local Down syndrome association. It was a kick off party for the Fall Fiesta that we throw in the Fall. It raises TONS of money for Down syndrome, which is awesome! The Down Syndrome Association of Middle Tennessee serves over 800 families in the area! Just amazing! I had a good time there, it was thrown at one of the board members homes and it was just beautiful! I heard a rumor Alan Jackson lives down the street from them.
Anyway, I guess that's about it. I just got done getting my butt kicked at cards, so I'm going to pout and go to bed! (Just kidding! LOL) Oh, here is a video Frank took of Kameron on Saturday... he is on the stage here at the hospital. Notice how he's looking around to make sure people are watching him?! I think I have a future performer on my hands! Enjoy!!
I am thankful for sleep... and thankful that Keeghan likes to sleep too! (I'm tired, can you tell?! LOL)
7/25/07 WBC: 1.0 Hgb: 10.1 Plt: 79 RBC: 3.47 Nt: .21 7/27/07 WBC: 1.4 Hgb: 9.9 Plt: 23 RBC: 3.44 Nt: .05 No venting tonight, promise! :) Kennedy's had a better day today. She walked a lot for PT FINALLY! (She usually only does PT stuff for OT and ST! HA!) Then we had some friends visit for awhile and my mom came to stay the night which made her REALLY happy! Frank is at home with Kassidy and Kameron and they've been hanging out and watching movies. They're going to come here tomorrow so I can see them, it's been almost 2 weeks! We asked again about them coming in to see Kennedy but haven't heard an official answer yet. I got out for a bit this evening and went to Target to buy an outfit... I have a dinner to go to tomorrow night for the Down syndrome association and realized that not only do I not have nice clothes up here (why would I?!) but nothing at home fits me either! The joys of being post partum, I guess. (How long can I use that excuse anyway?!) SO it's always nice to buy something new to wear :). I realized I haven't talked much about Keeghan the last couple days... he's just hanging out being good! He LOVES to get out of the room and see people, and the nurses up here have had fun holding him and talking to him. He's still puking quite a bit, but I weighed him the other day and he was 11 lbs 15 oz! Something is staying in somewhere! He continues to be very smiley (is that a word?) and he's "talking" a lot and finding the different ranges in his voice. I love this age! As you can see above, Kenn's counts are mostly still dropping so we'll see how the next few days go. The wound care specialist came back to look at her line today and said she agrees it doesn't look very good. She said it's not infected, yet, but she felt that it should be replaced because it's definitely heading towards infection. The residents agreed with her, but the surgeons want to wait until she actually gets an infection *sigh*. With no immune system that should be interesting! Anyway, I'm just going to let them fight that one out and just go with whatever they decide. I'm tired of causing problems already! (Was that a vent?! Sorry!) Anyway, I guess that's about it, I just wanted to post her counts and get the negativity pushed down into the archives. I can't wait for the day I look back at all this and say, "Oh that wasn't so bad!" It'll happen. Please keep Chloe Newbold and her family in your prayers. They got some not so great news today and they have some decisions to make. Keep praying for that miracle!! I am thankful for a place to vent when I'm frustrated and I am thankful that even when I am frustrated I can still be thankful!
July 26, 2007 11:28 PM CDT Another day here is done... YAY! Kennedy is hanging in there, but man, she's bored. Frank and I can only entertain her for so long, and we have her therapists and child life and the chaplain coming in to play every once in awhile, but the masks make it hard to breathe and the gowns and gloves are hot so they can only stay for so long (can't really say I blame them!) not to mention they have other kids to see too. Night before last she cried and cried every time that door was opened because she wanted to go out. I think she feels like she's being punished and of course does not understand why! I feel so bad for her! The infectious control doctors said no to the mask so we could take her out in a wagon. They said they don't have masks small enough to fit her. Imagine that... no child size masks at a CHILDREN'S hospital! UGH We have seen SO many inconsistencies this admission that just DON'T make sense. I can't blame Kennedy for feeling like she's being punished when I feel the same way. The hemoc doctors and some of the nurses have really tried to find compromises to help us (THANK YOU for that!!) but it really all comes down to infectious control and they keep shooting us down at every turn. Who cares if Kennedy develops a fear of hospitals or thinks her parents are being cruel as long as she doesn't breathe on anyone because 2 weeks ago she came no closer than 10 FEET of a child who just happened to come down with chicken pox and we just happened to hear about it. Who's to say that our previous times at home she wasn't exposed to chicken pox by someone else, or something even worse and we never knew?! Who's to say that the kid next door to us wasn't exposed to TB or something worse? A LOT of crap has happened here this time and I'm trying not to whine (much) and I'm trying to be positive. I joke about being kicked off the island and having cooties, and I was doing ok until Kennedy got so upset. *sigh* OK enough negativity! Other than being bored, Kennedy is doing ok. Her temp was up a little bit this afternoon but it went down on its own in about an hour, so maybe she just got overheated. She also was holding her chest and whining a lot so I checked her Hickman line tonight and her site looks pretty bad. It was bleeding a bit and more skin is coming off in chunks. The stitches are out a little more than before. Her nurse agreed it didn't look good at all so we had the resident check it out. She's going to have the wound care specialist come look at it again tomorrow, hopefully she'll have some suggestions. We put some antibiotic ointment on it for the time being and wrapped her back up. Kennedy's so funny, she will let you do pretty much anything to her without complaint, but you even want to LOOK at her Hickman line and she goes down swinging! She doesn't cry, but she'll tell you "NO!" and "STOP IT!" and you just may get a Groovy Girl thrown in your face! LOL At least she's learning to defend herself! This week OT decided to work with Kennedy on undressing herself. She had a little dress on today and pulled the bottom of it up over her head and it got stuck! I was so torn between helping her and laughing! She started to get a little panicked when she couldn't get it off so I got up to help her and she pulled it off and just looked at me like "Did you see that? It attacked me!" SO funny! She is doing GREAT with zippers so we'll need to start tackling those buttons next... or maybe snaps. Anyway, if she has no clothes on next time you see her... blame OT! I guess that's about it. Please continue to pray for Kennedy and for all our Vandy friends. Erica and Sam are both newly post transplant and are hanging in there pretty well. David is really sick with fever and pneumonia. Mya is doing well, her counts are climbing on their own which is awesome! Riley is doing well too and they are hanging out at the Ronald McDonald House. Our friend Logan got to go home yesterday finally! Matthew is here in town waiting to see if he needs a donor boost before he can go home. Max is back on 6B with us after just going home on Monday. He's having horrible headaches resulting from a REALLY bad spinal tap experience. Braxton is still here finishing out antibiotics, he gets to go home tomorrow I think. Nevaeh is getting ready for transplant. Austin is doing great and is just counting down the days until he's off chicken pox isolation... we know that feeling! Umm I think that's it up here! Remember too to pray for Chloe Newbold in Virginia as they try to get her back in remission. Also, please remember to pray for the families of Angels Cody, Charlie and Rayley as they are still trying to adjust to life without their wonderful kids. Pray as well for baby Hazel who was just taken home on hospice. We're praying for that miracle for her! There are links above to almost all these kids' pages and several more. Please check them out and let them know you are praying if you feel led. I know thier families will appreciate it! Until next time, Renee I am thankful for Kennedy. A smile from her makes the world seem right again.
Good evening from Vandy! Kennedy is doing well... she's starting to go a little stir crazy (right along with mom), but we're hanging in there! Her doctor talked to the infectious control people about getting her fitted for a mask so we can take her out to the hallway on wagon rides. We're still waiting for an answer on that. I know it will make Kennedy SO happy to get out of this room for awhile! Here are her counts for Sunday and Monday... they didn't draw them today, but they will tomorrow. 7/22/07 WBC: 1.3 Hgb: 10.4 Plt: 164 RBC: 3.55 Nt: .65 7/23/07 WBC: 1.1 Hgb:10.4 Plt: 145 RBC: 3.58 Nt: .48 Today is Kennedy's 100th day admitted to the hospital since birth. I had a tally going on her caringbridge page and realized last night that we are going to hit that 100 day mark... it doesn't mean much really except that she's spent a LOT of time in the hospital... most of it at Vanderbilt. In her 3 years of life she has had over 15 surgical procedures resulting in over 10 different diagnosis'. From the major one repairing the blockage in her intestine, to the minor endoscopies, she has shown repeatedly that nothing is going to get her down. She's proven that a "major" surgery can turn out to be a small inconvenience while a "minor" one can turn out to be a huge ordeal. She has made several doctors scratch their heads and say, "I've never seen that before"; she has captured the hearts of nurses and spread smiles on the saddest of days. She is truly my hero! Anyway, here are some recent pictures of the kids... some of the ones of Kennedy are from last admission, then there's some from home and some from this admission. I'll let you figure out which are which! Just click on the pages to go to the next page. Please remember to pray for Chloe Newbold tomorrow from 3-3:30 EST and pray for our friendEricawho got her transplant today! I am thankful that 100 days in the hospital has not crushed Kennedy's spirit. I am thankful for the nurses who have helped keep her happy!
First let me say that Kennedy is doing well. Her counts are on the downward spiral, like they expect them to be. I will post those tomorrow. Tonight I am posting on behalf of our little friendChloe Newbold. Chloe is a beautiful 2 year old with Down syndrome. She was diagnosed in January with AML. In April, Chloe's parents received the horrible news that Chloe has relapsed. They immediately tried a stronger round of chemo but on July 11th they were told that Chloe has 66eukemic blasts in her marrow. The doctors at Inova Fairfax Hospital in Virginia where Chloe is being treated are giving Chloe a 10hance of survival. They are trying hard to get her into remission so she can go to Duke University to receive a bone marrow transplant. They have 2 bags of cord blood there waiting to start Chloe's new life. I am asking that you keep Chloe in your prayers every day. Pray that she goes into remission and that her bone marrow transplant will be a complete success. Pray for the medical team working with her, that they will choose the best treatments for Chloe. Pray for her parents, Rick & Kristy, as they stay strong for their daughter even in the scariest of times. On Wednesday, July 25th, a pastor will be going to the hospital to pray for Chloe. This will be from 3:00-3:30 PM EST. Chloe's family is asking for people all over the world to pray for their daughter. Please if you can, stand with us in prayer and faith for Chloe's complete healing. I will keep you posted on our little friend, or you can go read her site for yourself by clicking on her name above. If you do visit, please sign her guestbook and let Rick and Kristy know you are praying. Thank you all for letting me introduce you to our friends, near and far, who are traveling this journey with Kennedy. Thank you even more for praying for them and for loving them as much as you pray for and love Kennedy. We appreciate it more than words can say. I am thankful for Chloe's life and the blessing she is to her parents.
We are all doing well here. Kennedy's chemo ended last night and she is completely unhooked now which always makes life easier. This morning she woke up and said, "Mommy, mommy... MOMMY?!" I opened my eyes and said "Good morning, Kennedy" and she said "Drive?????" She wanted to go out in the hall and drive her car! I told her we can't do that today and she showed me the end of her line (or tubies as we call them) as if to say "Look! I'm not attached!" LOL I felt so bad for her! We got her distracted though with a brand new groovy girl that I had in hiding and moved from one activity to another. She had OT and PT today so that helped keep her busy too. I went this afternoon to help sell lemonade again. We did pretty well on Friday but man today was amazing!!! SO many people were there and I'd say at least half of the people who entered Nashville Shores bought lemonade. We met some really neat people and hopefully raised some awareness. I will let you know how much money we raised when I hear the total! So, now we play the waiting game... we wait for counts to drop and then go back up again. I think they'll start checking her counts on Monday. She's feeling pretty good and has eaten TONS today. We ordered chinese food and she just LOVES fried rice! She's kind of tossing and turning in bed right now so I hope I didn't let her over-eat! Kassidy and Kameron are doing well, no sign of chicken pox yet. Kass had a headache and low grade fever yesterday so my mom was kind of wondering, but she said she was totally fine today. Anyway, I am off to finish up some laundry and then read a bit before bed. I am thankful for being able to get out in the fresh air the last couple days... and for all the people who gave to help find a cure!
We are winding down from another day here on 6A... no wait, 6B! LOL Kennedy did pretty well today, we played lots, watched a lot of Sponge Bob and Signing Time, and a few of our 6A nurses came to visit and made us feel loved. One of our friends from Clarksville came to visit us as well, so we stayed busy. This afternoon, Jenny came for music time and while she was here Frank happened to look down to see Kennedy's line undone (not out of her chest, just at a connector) and there was a puddle of blood pouring out. Fortunately it was the fluid line this time and not the chemo line. I swear she doesn't have the OT skills to twist those connectors off, so she must move just the right way to loosen them! Needless to say we got it fixed quickly. Jenny kept Kennedy occupied while we cleaned up the blood, so that helped a lot! We did receive another bit of yucky news this afternoon... one of the perks of being on 6B is we can have as many visitors as we want so we were looking forward to Kassidy and Kameron being able to come up and spend time with us. As of yesterday everyone said that was fine. Well today infectious disease decided that's actually NOT fine since they could technically still come down with chicken pox, so they won't get to see Kennedy at all until we go home now. They said that Frank and I can be around them still so my mom will come stay with Kennedy and we'll take the kids to lunch or something, but man we were all excited about it! They also said that Keeghan couldn't be up here because of risk to him since he obviously hasn't been vaccinated, but once I told them I am nursing they said he was fine to be here because he's getting anti-bodies from me. Thank goodness! Frank went home earlier today so he can go to PT tomorrow and then he will be back up here. I am going to go to Nashville Shores tomorrow and help sell lemonade for Alex's Lemonade Stand. Julie, our child life specialist, set it all up and it raises money for childhood cancer research. You can check out their site here:Alex's Lemonade Stand.If you happen to live in the area, stop by and have some lemonade with me! Some of the 6A families will also be at the Harris Teeter store near Vandy. Anyway, I guess that's about it. Both kids are sound asleep so I'm going to get things picked up and head to bed myself. Until next time, Renee I am thankful for bubbles. Kennedy had so much fun popping them today. There is no better sound than hearing her laugh!
It's 10:00... do you know where your kids are? LOL Most of you probably think I'm nuts, but when I was little one of the news stations always started their 10:00 newscast that way. I don't know what made me think of it, but cut me some slack, it's been a long day! LOL Anyway, we are settled here in our new room... our nurses have been very nice today, especially considering I was so stressed out every time they came in! HA! I'm more calm now, just tired. This room is a little smaller than our other one, but everything fits nicely and they got us a mat to put on the floor so Kennedy can at least get out of bed. Child life is going to come by every day to play with Kennedy and Jenny, the music therapist is going to come by too... then she'll still get OT, ST and PT as well. I'm going to see if I can get her some new toys (I know, she's so lacking lol) so she has different things to do. It's going to be a long 2 weeks, but we'll make the best of it! One of our 6A nurses came over tonight just to say hi, that made me so happy! I had asked if I could go over there, not into a patient's room of course, just in the hallway, but they said no. *sigh* I DO understand why, really, I just feel like we've been kicked off the island! LOL In the long run this is no big deal, we're here so Kennedy can get chemo, and she's still getting that, and that's what matters... so as my friends say I'll "put my big girl panties on and deal with it". :o) On that note, to any of our nurses who check in here, my apologies for the high stress and emotions today. You know we love you guys! Anyway, Kennedy is doing well. Day 3 of chemo started at 8pm and so far so good. I haven't checked her line today... I may just wait until tomorrow to keep her stress level and mine at bay! She is saying more and more words every day... her new favorite word is "AWEsome". She is also learning to recognize her letters by sight, she's amazing! Well, I have nothing left to say! Thank you to everyone who checks in here... I know I've said that a lot lately, but we really do appreciate it! I am thankful for Anne and Khette who took the time to talk to me today and let me vent, and for Dr. Engle who was very patient with us.
Ugh it's already been an exhausting day and it's barely noon!! Kennedy did great with the anti-body last night. She had no side effects. Ironically, the benadryl they used for a pre-medication caused her cheeks to break out in a rash, but she slept through the entire treatment with no problems and the rash is gone now. This morning we were waiting to hear if we were off precautions now, they told us last night we probably would be, but instead we were informed that we have to change rooms after all! I'm a little irritated because I think they are really over-reacting.I understand why and would feel horrible if anyone else got sick, it just stinks. It wasn't her doctor's decision, infectious control decided. We're moving over to 6B to a negative pressure room. We're waiting for them to finish cleaning it so we haven't seen it yet, but we heard it's smaller, so I'm hoping all Keeghan's stuff will fit in there. The sucky part is that Kennedy will not be allowed to leave her room this entire admission. We still have at least 2 weeks left here, probably a little more. Keeping her entertained is going to be difficult! The silver lining is we can have as many guests as we want in there so my mom can bring the kids up and we can hang out. We're going to miss our nurses over here though, they really brighten up our day!! Anyway, I'll update again tonight after we get settled, I just wanted to post on how Kennedy was doing this morning, and she's fine :o). She's playing with her Groovy Girls and asking for lunch. That's my girl! I am thankful that Kennedy is pretty go with the flow... hopefully we can find fun stuff for her to do inside the room!
Never a dull moment on 6A! Today has been... different! LOL The surgeon came in this morning to look at Kennedy's line and wasn't quite sure what to do with it so he said he needed to talk to another surgeon and they would get back to us. Several hours later this other surgeon came in while Jenny (the music therapist) was in here playing music with Kennedy. This surgeon was... well... Jenny said she had the bedside manner of a flea! LOL (I think she was being nice!) I told this doctor about the chunks of skin that were falling off around Kennedy's stitches and the fact that it was oozing and that the stitches were letting go and she basically said "so..." GRRR She went on to say that the stitches aren't supposed to be permanent and they are going to fall out but the line would stay put. Obviously she's never worked with Kennedy before! SO after us going back and forth repeatedly I asked for another surgeon to come in and she couldn't understand why! HELLO! So she asked what I would like her to do and I said "I don't know, YOU are the doctor, YOU figure it out!" She finally agreed to get a wound care specialist up here and she decided to put a patch of silver over her stitches which she said would absorb the infection and then she put this soft silicone foam dressing on top. It is a little sticky on the back but she said she's never seen anyone react to it, so hopefully Kennedy won't be the first! THEN she brought in a bigger ace bandage and wrapped and wrapped so hopefully this line will stay put! As for the stitches I'm not sure what they've decided. The surgeon will be back tomorrow, I'm sure. So with that out of the way we went on with our day until I got a phone call saying that one of our friend's sons broke out in chicken pox today and since we recently hung out with them Kennedy was exposed too. I didn't really think it was THAT big of a deal but I let Dr. Engle know and he kind of stressed a bit. He called infectious control and said we may have to change rooms to an isolation room where air comes in but it doesn't recycle out so no one else will be affected. He was waiting to hear back from them and put us on precautions in the meantime which means Kennedy can't leave her room and anyone who enters has to wear a gown and gloves. He said it would be that way for the next 10 days. However, infectious control finally called back and said that they wanted Kennedy to receive the IVIG anti-body to prevent her from getting the chicken pox. The good news is we'll be off precautions tomorrow (and we didn't have to change rooms), the bad news was that she was going to have to get an IV placed because the pharmacist said that they couldn't put it in the Hickman line because it would mix with the chemo. WELL Adele (one of our favorite nurses) was up here and said "no way!" and called and argued with the pharmacist until she convinced her that it was totally safe to put it in the Hickman line, so Kennedy escaped the IV! YAY! There are side effects to this anti-body including nausea, vomiting, fevers and chills, so they are pre-medicating Kennedy with tylenol and benadryl. We're waiting for them to start it right now and praying she will have no side effects. They already gave her the benadryl so she is passed out! OK so then right after I told Dr. Engle about the pox, I walked back into Kennedy's room and her line came unattached and chemo was dripping all over the floor! I yelled to one of the nurses and tons of people ran into the room. It was all over the floor, Kennedy, and her sheets so we moved Kennedy and I cleaned her skin while they reattached the line and cleaned the floor. They weren't too sure what to do with the sheets so they just threw them away! LOL See? Never a dull moment!! Pray this anti-body doesn't do anything bad to her! The consensus on how necessary this is varies from person to person... Kennedy didn't come in direct contact with our friend's son so chances of her getting chicken pox are slim, but better safe than sorry! I will let you know how everything went tomorrow. I am thankful for a sense of humor on stressful days!
Sorry for not updating sooner. We are back at Vandy on 6A in room 6308. Our little friendMyajust left this room today. She is post transplant... about 3 weeks I think... and she and her family are now staying nearby at Embassy Suites. (After transplant you have to stay within 30 minutes of the hospital for 100 days so some families stay at the Ronald McDonald house, others rent apartments or stay at hotels and some live close enough to just go home.) Please keep her in your prayers as she continues to recover. Our new friendSamhas his transplant today with his brother as his donor. Keep him in your prayers as well that the donor cells take over and the graft versus host disease stays under control. As for Kennedy, she is doing ok. We got to clinic at 9:40 this morning and they took some blood to check her counts which were all in normal range. Then she had her spinal tap and had chemo injected into her spine, then we hung out there for a few hours until they had a bed free to put in Kenn's room. I don't think we got up here until 5:30. It was a long day! We got unpacked and settled in while Kennedy went and socialized with the nurses and care partners. She's like a celebrity up here! LOL All the nurses were so happy to see her! She showed off her new found walking skills much to their amazement, and gave lots of hugs and high fives. She truly feels at home here, which makes me happy and a little sad at the same time. They started her chemo at 8:00 tonight. She's on the same stuff as before so hopefully no unexpected surprises! Tomorrow a surgeon will be coming to look at her Hickman line. I talked to her doctor today about the ER visit we had and the oozing around the line and she looked at it and feels that maybe she is allergic to the stitches... sure, why not?! I'm not quite sure what they can do for that, but we'll see what they say. I'm praying they will not have to take the line out and start all over! Her line also got snagged today in clinic. It bled quite a bit and a couple of the stitches came out but so far it's ok! She has also shown up with several new bruises in the last few days so they are keeping an eye on that. If more pop up they may do a bone marrow biopsy just to be sure everything is ok. Anyway, I guess that's about it for now. Kennedy and Keeghan are both sound asleep and Frank went home until Wednesday, so I'm going to read for a bit and try to get some sleep. Prayer requests: That this round of chemo is easy on Kennedy, but more importantly that it continues to keep the cancer away. That she won't get any mouth sores. That no new bruises will show up. That her line won't have to come out and they can treat any infections with antibiotics. That she continues to eat and drink. That her spinal fluid comes back clear of Leukemia (it always has before, but you just never know). Thanks for continuing to pray! I am thankful for the nurses up here. They make this whole admission process fun for Kennedy. That means the world to me!