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Managing Pain, “I’m not Leavin’”, Attempts to Move, and Visits from Tan

Last night went well in terms of pain, and Kelty was able to get some sleep in between the nurse visits (and there are a lot of them that first night). She is definitely more alert this time around, which is great. That also means she is more aware of the pain fluctuations. On a scale of 0-10, she seems to be living between 4-6, which isn’t ideal. There’s no expectation she will be at a zero, but I think closer to it than she has been would make her happy. Besides the lumbar plexus catheter, they supplement with Vicadin, Tylenol and Oxycodone. And yes, she really is still more alert than in the past even with all of those narcotics. ;) Kelty actually had the catheter amount increased this morning to beef up the area it was covering, but physical therapy afterwards “just made everything hurt.” Not sure that was effective then...

Kelty used her grown-up voice this morning (she is now 18 and I am a visitor in all of this, not the decision-maker) to let the doctors and nurses know she would not be going home today. It’s not that she loves the hospital so much (and she does love “her hospital”, just not the need to be here), but that the idea of moving and managing her own pain at home made her very anxious and scared. They weren’t telling her she had to, but at the option, she was clear that she wasn’t interested. We are hoping for tomorrow so that we can have Christmas morning at home, but that depends on her getting her move on more than anything.

P.T. was here mid-day and worked to get Kelty out of bed. She got to the edge. Because of the nausea and pain she couldn’t get off the bed or transfer to the wheelchair like we hoped, but we are going to try again tonight. Because she is taking the oral meds okay, that will really determine if we go home tomorrow or not. 

Dean and Tanner showed up just before noon. Both boys get so worried about Sis when she has surgery, and I so love seeing them love on her when they are here. Tanner was especially happy that they stopped at Dick’s Drive-in for lunch on their way here. Yum!

It’s been a much better Day 1 than in the past, so I’m feeling good about things so far. We are looking forward to a decent night’s sleep, some P.T. work tomorrow, then hopefully heading home. Kelty is reading all of the Facebook and Twitter posts, as well as her texts. Keep them coming...it makes her smile. :)

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Remember the 400+ blankets @awsl2015 made for @seattlechildrens and donated through Katie's Comforters Guild in October? That gift came back around for Sis today. Kelty was blessed with a beautiful quilt from @karengberger and #katiescomfortersguild during her hip surgery at SCH. Thank you to the glorious quilter Bonnie P. for the obvious love and talent embedded in Kelty's gift, and to Karen for making sure the special delivery happened. You are a treasure! 

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Surgery Success (we think)

We hugged and kissed our girl goodbye about 8:30 this morning as Kelty headed back to the O.R. She had a lumbar plexus block placed via catheter, which means they did a localized block so that only her right hip and below were numb rather than the entire lower half (the case if she were to have an epidural). The placement of the block takes some time, so surgery got started about 9:30. We were told it would be about 2 hours, but it was close to 1:00 before we got word that she was done. Dr. White is pleased with the outcome, and explained that it was kind of labor intensive to get to where he needed to be (there is a lot of scar tissue and funky bone structure in there by now), but that he was able to clean things up quite a bit and really improved her range of motion and alleviated the impingement. We won’t really know how it all feels until she is up and moving again, but this was a much more positive conversation than the one we had two years ago on the same hip.

Kelty is asleep next to me in her room and resting comfortably. We have a big room and are the only ones in here so far...and I have the window. Any of you who have been here overnight understand the coveted back-of-the-room-window-spot jackpot. :) Carter is back from his Russell Wilson/Ciara/Chris Pratt hunt (they were here, but he didn’t find them), and he and Dean are both napping. 

Hoping and praying for a comfortable night. Thank you to all for your positive thoughts, prayers and well wishes. More tomorrow. <3

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The Tumblr is back because we are headed back to Seattle Children’s Hospital tomorrow for SURGERY #11! Our girl is still in a lot of pain in her right hip, so Dr. Klane White will be working to shave a bit of her socket to alleviate some of the pesky impingement that didn’t want to go away after the last round (December 2013). The procedure should take about an hour and a half and is much less intense than the last two. That said, we know we are at over two dozen trips to the O.R. over the years for a variety of purposes (cast changes, closed reductions, scans that required die, pin/hardware removal), and it doesn’t get easier. We are all a bit nervous and really, really tired of these visits and hospital stays. 

I will use this blog to keep everyone updated, but you are welcome to check in directly with me or Dean as well. We expect to be in the hospital at least two nights, but Kelty usually has a hard time getting back up to speed and managing her pain meds orally, so we’re anticipating three nights. Not the way we want to spend Christmas. :( We will be reminded almost immediately, however, that Kelty is not the sickest patient there, and we are always grateful for the gifts and strength God has given our girl. This will add to her story, but she will be so very okay when it’s over. 

Please keep Kelty in your prayers and think happy hippy thoughts these next few days. 

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I know it's self-serving, but as the librarian on this trip, a visit to the Library of Congress is required. It really is the most beautiful building in DC. The sun's glorious appearance after all of our rain was so welcome, too!

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Yes, It's self-serving as the librarian in the bunch, but a visit to the Library of Congress is required on this trip. It is really the most beautiful building in DC. What a glorious, sunny day, too!

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Founding Father Pin-Ups, 2nd Ed.: Tread on Me

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My girl is already poring over college options. #halfwaythrusophomoreyear #sheworkssohard #thisgirlhasoptions

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Back at PT and it's going great. So proud of our girl!

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One Week Home, Two Weeks Down

So many of you were following along every day while we were in the hospital, and then I just left you hanging! So sorry for the lack of updates, but the good news is that after two weeks (that long ago already?!) Kelty is doing well and I think we are ahead of where we were six months ago. 

The biggest hurdle once we got home last week was pain management. Kelty was really watching the clock through this weekend, and that was with just 4 hours between the serious meds (oxycodone). She was also taking Tylenol, Advil and valium (for muscle spasms), and then we added gabapentin just after she got home for nerve pain. Her original Rx for oxy was to run out on Monday, and we knew that was too soon, so she transitioned to Vicadin then, and seems to be adjusting to that okay. She also transitioned to her own bed last night (from mine), and although she says she misses me, that's progress too (it means she is managing her own meds at night, and I am not reliving my middle-of-the-night-infant-feeding schedule. Ach!). 

Kelty's mobility seems to be moving a bit faster this time, and I credit that in part to muscle memory (how to use the crutches to get up and down, how to slide her foot when learning to crutch), and then simply to motivation. She doesn't like being dependent on us to help her on and off the couch or in and out of bed, and the hardest part is simply sliding her leg sideways to make those things happen. She is able to bend it at the knee much sooner, and we discovered the stairs are much faster and less traumatic on her butt than on crutches. Of course, that won't be an option at school, so again...motivated. She starts physical therapy tomorrow, and as much as she loves her PT DeeDee, and is looking forward to seeing her, she is not looking forward to the work and pain DeeDee brings. She also knows she will see her twice a week for the next 5 months or so and that feels like a reeaallllllyy long time. Maybe this time will be better knowing she doesn't have to turn around and start over when this one is done, though. Hopefully. She is also motivated by the fact she is going to Boston February 12th to compete in a national debate tournament at Harvard...she needs to be as mobile as she reasonably can, and her goal is to be on a cane, no crutches. It's good to have goals. :)

Having Sis home has been nice in that it has kept some of the holiday craziness to a minimum, and we've had a pretty quiet vacation so far. Thank you to the visitors who have come to check on Kelty (and me), providing smiles, hugs, coffees, lunch, sweets and love. Until Monday night, she had not been any place since surgery. She ventured to our friends' the Ebners for a couple of hours of Christmas cheer on Monday night, but even their cozy couch was not the same as home, so dad took her home a bit early. We attended Christmas Eve service last night and there are no couches there, so as beautiful as the candles of "Silent Night" are, again, she was ready for home sooner than later. This afternoon we (finally) made it to see "Frozen" (Oh, I am now IN LOVE with OLAF!), and she sat in her wheelchair, which is actually relatively comfortable with blankets and pillows. Looking forward to the fourth day of climbing in and out of the car (or maybe not) for PT tomorrow. I told her we also need to start toughening her up for school anyway...which will bring all new issues and hurdles. Okay, not thinking about that now. 

We are grateful for our baby girl's recovery, for the love and prayers that surround her, and are looking forward to a hospital-free 2014. Merry Christmas to all and we hope you are enjoying your holidays and vacation (and staying healthy) with your loved ones as well.

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Young Life just came to our door to carol, so I invited them in to sing to Kelty. What an awesome group of kids. They made her night. ❤️ Thank you, Puyallup Young Life!

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Going Home!

After six days, Kelty is headed home. Yayy! She was able to get up and around on her crutches a bit and did some serious hard work on the stairs. She is wiped out (has been asleep since we got back an hour ago), but is happy to be getting out of here. We LOVE Seattle Children's Hospital and she will forever call this "her hospital", but we are hoping to never have another overnight stay here. Our best case is that we get way down the road into adulthood before she is in so much pain again that she needs to then finally have hip replacements. I have no idea when that might be, but I do know that our girl has big plans for the next 5-10 years, so there is no time to do this again any time soon. :)

We will be home in a couple of hours and will be open for visitors as soon as tomorrow. Kelty will be stuck in the house for a couple of weeks, so please feel free to call, Facetime/Google Hangout, come say hi or watch a Christmas movie or two with her. She is missing a lot at school these days and is very sad to not be there when so much fun is happening. She could use some holiday cheer.

My posts will slow down now, but thank you again to all who have prayed, sent love and hugs, and happy healing thoughts. Feel free to send me or Dean a note to check in if you go through any kind of "Kelty update" withdrawals. 

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Last Day?

Still here (Day 5 post-op), but we are hopeful. Kelty was able to get out of bed four times yesterday to sit, she ate a bit more and has successfully transitioned to oral meds. She said she had a good night's sleep (no baby roommate helps), only waking up to take medicine. I don't know when PT will get here, but her goal is to go home today, so she needs to get on the crutches and handle some stairs (her bedroom is upstairs at home). Getting ready for some hard work.

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Meet Clada. One of the nurses here also volunteers with Pet Partners and brought in her adorable and snugly Westie to visit today. Kelty loved it, and Clada had a fabulous nap on her lap. Great afternoon!

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Post-Op Days 3 & Beginning of 4

Oh, we are tired! I really do love little babies, and have even still had moments of “could we still do another one?” as recently as this past year (keep the “crazy lady” label to yourself, please), but sleeping in a room with one who had surgery on her intestines is VERY exhausting. She is not sleeping well, and so we aren’t either. I was actually so frustrated last night because I knew that Kelty was not sleeping, so that meant she was using her button more than she probably actually needed to. I can hear it every time she pushes it. I’m sure the morphine is playing a huge part in her lack of appetite, which means she is less likely to eat and do well with oral meds. We need to get off the morphine (and we are working on it…more on that next). As for the baby, she is going home today, and we are praying for her to feel better and that her parents also get to get some rest. Of course, we certainly understand they have anxiety as well, about her health as well as their lack of sleep, and they are clearly aware of ours. 

I feel like we had a long day of not a ton of progress for much of yesterday, but then it got better in the evening. Kelty was still not eating much all day, but I finally got a bite of rice cake in her here and there, so she managed to eat half of one throughout most of the day. PT was here in the morning and we were able to sit up on the side of the bed, but she threw up again, so no standing or wheelchair transfer. Expending that energy always takes a long time to recover from. She gets really pale and clammy, shaky and dizzy, and then has the nausea as well. You can see why she is not excited to try again. But…she did and it went much better. In the evening we made sure the anti-nausea was on board first, and she had eaten a bit more. The nurse and I were able to get her up and sitting a bit longer and stronger than in the morning. And then resting again (because sitting must always be followed by resting).

Dean and Tanner came back after a day of kicking camp and basketball games so Dad could hang with Sis and I could go on a dinner date with Tan (to the Ram in U. Village…love my date (and adult beverage)!). While I was gone she finished that rice cake and had a couple of apple slices. We felt good that we could start the transition to oral meds this morning since she was keeping food down. Yayy! A couple of visit notes: “Dad likes to tell people how well I’m doing. He doesn’t know,” and after I told her Tanner had to leave because visiting hours were over for all but caretakers: “Tanner is the best caretaker of all…he snuggles, kisses and massages feet.” <3

After our very un-restful night, we moved forward on the oral meds plan…but not until after PT was here again. Again, we loaded up on the anti-nausea and morphine before the move. This time we were able to sslllooowwwllly transfer to the wheelchair, but not without a lot of dizziness, clammy skin and more nausea. No throw up this time, however, and she was able to stay in the chair (reclined and not by choice) for 20 minutes. We have had very nice PT’s but they are not Kelty’s favorites; they make her very uncomfortable. The nurses are her favorite; they bring her drugs. While she was in the chair, an ortho resident was also able to pull her wound drain and change her dressing (again, not a favorite). The nurse and I were able to get her back in bed and we then yanked the morphine button out of her reach to start the oxycodone by mouth. Almost two hours in, we are good so far. I think at the 4 hour mark we will try the chair once again (she has been given homework of 3 x today), once she’s had more meds and some food. Hoping we can get to crutches tomorrow so we can maybe head home. She will need to be able to walk as well as get up and down stairs. I am not sure we will get there in the next 24 hours…but maybe. We are very aware of all of you who are hoping we are still here on Tuesday to see Mr. Wilson. As fabulous as that would be…I’d rather be home. :)

A bit of “how to pass the time” trivia: I am well into Season #2 of Dexter since we got here. Love Dexter, love Netflix, need to be getting some work done instead. 

Thank you once again to all who are reading, praying and virtually hugging. We are feeling it all!

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Another great surprise visit! Thank you, Leighton for bringing little brother Beau and Mom (Brianne) and Dad (Phil) to see Kelty on Saturday. What a bright spot in her day!

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Friday (Day #2 Post-op)

Kelty is smiling pretty for the cameras and is so happy to have had a few visitors, but she is still struggling with her pain and nausea. She is still on the morphine button, but only needed one extra dose through a bolus syringe early in the morning. She managed on her own the rest of the day, and the orthopedic resident was just here and said her use of the button is slowing down a bit. We really need to get her on oral meds, but she has to keep things down first. She had a couple of crackers yesterday, but no more and is trying some Popsicle now. The goal is that if she can keep something down to coat her tummy, we will take the button away as we give her oxycodone orally and see if she can make it four hours. If she makes it eight, we can take the morphine away. That's a goal for today. She also had a couple of headaches yesterday, and that could be from the morphine, but it could also be from our new roommate...an infant who had intestinal surgery so couldn't eat at all last night. Poor sweet girl was so unhappy all night long (and then in turn so were her parents and us). :( They just got word that she can eat now, however, so I think the stress level in the room just went WAY down. I think naps will be in order today for all of us after a very unrestful night.

Physical therapy was back yesterday and Kelty worked really hard. She was able to get to the side of the bed (with a lot of help) and stand up using a walker. Well, she actually just leaned on her therapist as much as she could, but considering the nausea, shaking and the fact that she can only use one leg, that was big progress. We tried to sit on the edge of the bed again in the evening, but didn't get quite there. PT should be back this morning, so I expect more of the same. Besides the pain management (which is directly related to food management), the other requirement for going home will be to transfer to a wheelchair and to get up and down stairs on crutches. We are now not expecting to get home any sooner than tomorrow, and it could be Monday. A lot has to fall into place before we can go. 

Many of you commented on how great Kelty looks in her picture with her Papa. She does, doesn't she!? She was so happy that he came to see her (and we were all impressed at his secret-keeping). When she is awake and alert she is her usual happy and sassy self. The nurses are trying to recruit her to various nursing schools (the ones they went to) because they want her to come work with them. Ha! She is working her "mature, confident, respectful and kind" magic and I'm so proud of her. She has all the reason in the world to be cranky, but she is always remembering everyone is here to help her. I love this girl! 

Dean and the boys are on their way up and they will be in and out today (boys have kicking clinic and basketball games). I think we have one or two other visitors coming as well, and Kelty looks forward to that. Her best friend Grace came up yesterday with her super star chauffeur (I mean mom) Rachel, and they brought hugs and a great poster from school with more hugs and prayers on it. 

PT has arrived...will see how this experiment goes.