OLD HABITS DIE HARD
Hello again! We've been home for a few days now and we are all back to our old habits...which is incredibly refreshing. Keller is getting stronger everyday and in fact, Grandma Clause thinks Keller might try his first steps within the next couple weeks-- if not sooner. I honestly think I would do anything to delay that milestone for a tad bit longer. Keller loves to wrestle and thanks to Grandma Nelson, he is also wanting to give 'noses' (our version of a gentle head-butt).
By the way, I'll do my best to keep posting updates, but they certainly won't be as frequent. Keep checking the photos link too.
Great Grandma Marcy said. . .Thanks for sending the pictures. Although graphic, they were the ones I wanted to see to put me in to the situation to fully understand. Of course, when you are sitting home you can imagine that things are worse. I was pleased that Keller still had his great moments like coming home with his parents. I am so pleased that he got to go home yesterday. I am always glad to hear the latest. Thanks for all the info you have sent me. Love, Marcy
Meredith Jurek said. . .Those pics are AMAZING. What a trooper. My fav is "Keller after 12 rounds with George Foreman". You just have to laugh and hug the little guy. Just think - in a few days Aiden will proudly re-gain the title of "Biggest Baby Head" of the Clause lineage. He is pumped. Cant wait to see you all in person. Love Meredith
PICTURES OF DAY 3 AND 4
Home sweet home! We've made it home, and [sigh] it feels sooo good. He had a long nap in his favorite swing and his no up and playing. It truly is remarkable how quickly he's bounced back. Even harder to believe is that a little tylenol is all that he needs for pain relief. But if he ever needs more we've got the stronger (prescription needed) stuff available. We've added photos of days 3 and 4 to http://kellernelson.shutterfly.com/action/. ENJOY! Also, for easier referencing, I've added a link to all the photos to the left side of the blog (see "Keller Photos" under the picture of Keller).
Elsy and Paul Davison said. . .That is so great that you will be able to be going home soon! I'm glad to hear that all is going great! I'm sure all of you are thrilled that you will spending the night in your own place! Thanks so much for the updated! It's greatly appreciated! - lots of love - elsy and paul
HOMEWARD BOUND!!!
We've received the green light to take Keller home! Man, kids really do bounce back fast! For those of you who have seen the pictures and the CT Scans, I'm sure you'd agree that it is absolutely incredible that he is able to come home less than 72 hours after that surgery. In fact, the whole ordeal began at 2:50 p.m. on Tuesday and we'll be home by 2:50 p.m. on Friday - unbelievable! Thank you so much for all of the well-wishes and prayers - reading your replies to the blog really helped us through this! We'll have a few more posts from home (and some follow-up pictures for sure) but we're feeling pretty good about Keller's prognosis at this point. We can't wait to get him into his own bed again!
Thanks again to everyone for the amazing support - Mark, Hillary and Keller
Jeff and Megan Hodge said. . .Mark/Hill:
I apparently am blogger challenged (never gotten into the blog thing, although what a great idea for your current situaiton) but I have been reading the updates and the posts people have been writing...I just wanted to say that Keller as well as you both are in our thoughts and couldn't be more elated that everything is going so well to date. Although I've never met Keller, if he's anything like mom and dad (which I'm sure he is) I know that he's a very strong and determined little fella and is going to be just fine when this is all done. Tell him to keep it up.
With love,
Jeff and Megan
NO MORE BRAIN DRAIN!
The plastics team came by this morning and removed the drain from his head. It looked a lot worse than it was - Keller only cried for about 30 seconds. Next the neuro team stopped by with a very encouraging assessment. They think that we'll be able to go home this afternoon, provided we don't encounter any setbacks and feel comfortable taking care of him on our own. The nurse helped Keller get some of the dried blood cleaned off of his incision site - we haven't been able to do anything with that since the surgery. Now he's cleaned up and doing great, sitting on mom's lap and watching Elmo again. The day is off to a great start!
GREAT SLEEPLESS NIGHT
Keller had another great night. It didn't include much sleep, but it proved that he can now assume all of his favorite sleeping and lounging positions. Each time that we finally fell asleep, Keller almost immediately woke me up to as if to say "look, dad, I pulled out my last IV," or "look, dad, I figured out how to lay of my knees and forehead again," or "look, dad, I've spun around three full times and pulled all of my monitors off." While it wasn't exactly restful, Keller never cried the whole night. I'm getting to the point where I feel like know more about what Keller needs than the nurses (they're at a disadvantage because they rotate, while we're with him 24 hours a day), so it must be getting close to time to head home.
Chuck and Pat said . . . With God's healing grace and modern technology, along with your strength and the love of family and friends, this is a fascinating experience for us all to share with you. We are so eager to check the updates on Keller's blog and are thrilled that things are going so well. You are constantly in our thoughts and prayers. Keep up the good work Keller !!
THE BIG MOVE
Well, they finally moved us tonight. Nini and Baba, Nana and Papa - we're on the third floor of the giraffe wing now (I think room 3010) - good luck finding us! We're guessing even mommy will have trouble finding us tomorrow. . . We've gone from the plush accomodations provided in the PICU to the not-so-plush surgical recovery floor. Keller probably won't notice the spartan accomodations, so no big deal. Ok, I admit it, I'm slightly concerned that the bed I have to sleep in tonight is half my size, but that's a personal problem. . . Keller has hit a few more milestones tonight. He is getting more and more anxious to get back to his old ways and actually tried to stand up in his bed this evening, which we took as a good sign. He also had a peak or two out of his left eye. More patty-cake and peekaboo played as well. Can I say that he also had his first bowel movement today? This becomes a permissible subject during a hospital stay or camping trip, right? Anyway, we should get the drainage tube out tomorrow, which may mean that they can also take out his last IV. I suspect Keller is more concerned with the IV, but I think I speak for the rest of us when I say that we're all looking forward to having that tube taken out, none of us more so than Jim Bob. He looked to be on the verge of passing out today when Keller started yanking on it like a madman!
Cheri Kulik said . . . We are so happy to hear that Keller is doing well - making progress every day. You have been in my thoughts many times this week. When you experience something like what you are going through right now it becomes very clear what things are most important in life. Looking forward to reading more good news! Love, Cheri and Tony
Cousin Quinn said. . .Dear Keller. I love you. dont worry. i have been to the hospital before and I was not scared. I loved it. I miss you. I wish you could come back to your home soon so i can play with you. Dont cry. Dear Hillary and Mark -I hope your baby is going to feel better. And I love you. I wish you could come to my house. And I love Keller. Dear Nana and Papa - I wish the baby will feel better. I love you too nana and papa. I hope you will stay at that hospital. I wish Keller can feel better. And I wish he can get out of that hospital. and thats it! Love Quinn
Josh and Susie Kimelman said...I am speechless.....so thankful to you for keeping us updated on Keller, his surgery, recovery, and the unbelievable photos...I am checking my computer for updates and am so glad to hear Keller is progressing so well....the tennis gang all wanted to hear how things are going and I was pleased to update them...they all send their best...you are all to be commended ..we will continue to pray for Keller....Love ....Susie and Josh
Hilarey Kirsner said . . . Hey Hill-I'm so glad everything went well with his surgery. I was taking a look at the photographs Mark posted and it's absolutely amazing. It's also good to hear he's acting like himself, even though he's in a big scary hospital. Do you think he has any idea what's going on? I know he will really appreciate you documenting this process when he gets older. Give everyone my love and I'll check in to see how things are going too.Love,Hil
We wanted to thank Paul Davison and Katie Nielsen for stopping by to say hello yesterday. Once again, seeing some familiar faces brightened our day. Both Paul and Katie, as well as Andrew, spend a lot of working hours here at Children's Hospital. What an amazing place to work! We can certainly see that each of you must fit in wonderfully with the extremely dedicated, deeply compassionate people that we have encountered during our stay at Children's. You guys are incredible!
BABY STEPS
Keller continues to break new ground and reach personal milestones. This morning he opened his eye for the first time since the surgery. While he struggled to get a look at mom and dad, it was an Elmo DVD that coaxed him out of his darkened world. We're not jealous - he spent the next half hour sitting up, swiveling his head back and forth from mom to dad and clapping his hands in celebration of the fact that he's not completely blind. Needless to say this was overwelmingly touching for mom and dad, and we think we even caught a few tears from our nurse, Daria. He's only looking through a very small slit in his right eye, and the swelling will likely increase after they pull out his drainage tube to the point where he is again unable to see, but being able to catch glimpses of people he knows has helped to lessen Keller's frustration. He's almost back to his normal food intake and is really enjoying being held and rocked by mom.
The attending let us know today that we'll likely spend another night in the intensive care unit, as there are still no open beds on the surgical recovery floor. Again, we love the extra attention of the PICU, so you won't hear us complaining. Still, moving to a different floor will mean less restrictive rules regarding visitors, which would be a welcome change for Nini, Baba, Nana and Papa. Only two or three of us are allowed to be in the room with Keller at one time, so everyone is spending a lot of time in the PICU waiting area. Nini and Nana are master Sudoku players by now and I think Baba and Papa have each gone through a book or two. For us, this blog has become our saving grace.
Sarah Friedland said . . . Keller you are the man! It is truly amazing given all that you have just gone through and at such a young age you are able to give your mom and dad hope and rays of light! Hillary and Mark, thank you for the pictures and CT scans, it really helps us understand what Keller has just been through. Stay strong and positive and know that people from all over are sending well wishes, love and prayers your way. Love, Sarah & Adam
Michelle Evans said . . . Mark & Hillary...What a journey little Keller has been through this week. Thank you for keeping us all up to date with his progress. Its very emotional to see the pictures of Keller after the surgery. I can't imagine how it must be for you and your family. You two are incredibly strong...I am truly amazed. Take care...I'll be thinking about you this week. ~Michelle
Elsy and Paul said...
Mark and Hillary - it is so great to hear that Keller is doing well. Thank you so much for the updates on him, it's amazing to see all that has been done to him and hear that he is on the road to recovery. thank you so much for sharing with all of us. Lot's of love - Elsy and Paul
A PEACEFUL NIGHT
Good morning! Keller had a great night--slept soundly and ate a lot, which meant that Mom got to do the same. Yesterday we heard that his drainage tube could come out today--I still hear that from the neurosurgeons, but the plastics team feels that tomorrow might be better. Perhaps we'll learn more and get a final decision during this morning's rounds. We're still waiting for an open bed on the surgery recovery floor, but having the undivided attention on the PICU squad is worth the wait.
Hilarey Kirsner said... Hi Hill, Mark and Keller- I have been thinking of you all non-stop since May 1. You have so much courage- I'm sure it's the hardest thing in the world to see your baby go into surgery. Luckily- as you said- this will be such a minute part of his life, even though it seems like such a big deal right now. He will grow up to be a very handsome little guy! I will continue to read the blog- so I look foward to reading about his progress. I'm glad you have family and friends around to help out, but if there is anything I can do, please let me know!All my love, Kirsner
Great Grandmother Clause said...
I was finally able to get through to your web site and it is so exciting to hear the wonderful news.!I realize you have all gone through so much, but be assured that all of us have kept you in our prayers constantly.
It is also wonderful that you had so much family with you through this trying time and such great help from Doctors and Nurses. This is all so exciting and your idea for the web site is miraculous. love, grandmother Clause and best wishes to my GREAT Grand SON
Andrew & Chandra Mullenix said...
These scans (with Mark's notes) are amazing in helping us to understand the doctors' work -and what joy for you to be seeing Keller's playful self come through so early in recovery! We continue to check back often for your updates, and are so grateful things are going so well...
Brooke and Mike Miller said...
To Mark and Hillary,
Thank you so much for letting us be a part of this event in Keller's life. We would not have missed it for the world and are so glad that everything is going well. For those of you who couldn't be here, you would be amazed at how incredible Mark and Hillary have been. Keller is very lucky to have such strong, amazing parents. They have not only made it easier for Keller but also easier for those of us who were supposed to be helping them. This hospital has also been incredible. Little things all around like trains, whales, bright colors and amazing staff help make this place a little easier for young children to feel comfortable in. Just to give you an idea of how we, the family, have handled everything, we pretty much broke every rule in every room we were in-most unintentional. We had liquid where we were not supposed to, we answered calls and made them where the was no cell phone use and we stayed well past visiting hours the first night-about par for our families. Again, thank you Mark and Hillary for the chance to be part of Keller's life and for being the pillars that you have been throughout everything, Keller is lucky and blessed to have you in his life.
Brooke and Mike
KELLER'S CT SCANS
We've added some incredible images to http://kellernelson.shutterfly.com/action/. Follow the link to see Keller's before and after CT scans. Mark has added some comments to the photos to give you a better idea at what you're looking at. At times it can be hard to understand why we went through all of this...these pictures help remind us. The difference is remarkable.
THE RETURN OF THE K-MAN!
As always, when we're feeling a bit tired, Keller comes through with a pick-me-up. Without any prompting, Keller began to clap and pat his legs, and even play "SO BIG!" tonight! Grandma Clause even claims that she saw a hint of smile. After all that he's been through, it is incredibly heart warming to see the K-Man we all know and love. YEAH KELLER!
Great Grandma Nelson said...Keller, Mark and Hillary
I am so happy the surgery is over and that Keller is now able to eat and start to gain his strength back! I appreciate all the information via the blog. The pictures Hillary sent today were very helpful in trying to understand the whole situation. Thanks a million! Will keep on praying for all of you. Love to All,
Bill and Joan Bonnema said...Mark and Hillary - We are so thankful the surgery for Keller is finally behind you and that he is doing so well. It's been a long, difficult wait, hasn't it. Keller must be quite a trouper! We send love to you from Michigan and prayers to the Great Healer for continued progress and a rapid recovery (and some rest and peace of mind for mom and dad!) Blessings! Joan and Bill (Laura L.'s folks)
PRE AND POST OP PICTURES...FINALLY!
Pictures are uploaded and ready to be viewed! Follow this link to see the album, http://kellernelson.shutterfly.com/action/ Look for the album titled, "Hospital Pictures (Pre/Post Op)". DISCLAIMER: These pictures are fairly graphic and may be hard to look at. But again, we want to keep you informed.
Cousin Quinn said...Keller dont worry. Keller I bet there are a lot of toys there. You can play with them there. but you have to wait your turn. Your hospital guys are going to be really gentle. I miss you Keller. Can you come to my house someday? Can you come to my up north house please? You can play and play and play. And you can see my pony Jake at my up north house. We love Keller. And when you feel better I will give you a big hug. Love Quinn.
Anne Atchity said . . . Wow!! Mark and Hill, you are amazingly strong! We are so happy that everything went smoothly and appreciate you guys keeping us posted on the progress and updates of brave lil' Keller. You are in our thoughts and prayers and we send big nebraska hugs your way!Love ya!-Annie and Brandon
Sheryl Carlson said...
It has truly been so special to be included in these updates and read the heartwarming comments from all of your friends and family. What a great bunch. I've had countless people popping their heads in my office door asking for the latest news. We're all pulling for you and very happy for Keller - what a good mom and dad he has.
TUBES COMING OUT
Breaking news - Keller's arterial and catheter have been removed. Fewer ways to introduce infection is good news for the K-man!
PICU DAY TWO
Keller is still doing great. We had a meeting with a team of doctors this morning to go over his progress and the plan for the day. They are watching his temperature and his clotting agents closely, but they are very positive about his progress. The doctors even got a chuckle out of the fact that nurses thought Keller was more concerned about his teething issues than he was about his swollen head. While he appears to be doing well enough to move out of intensive care this afternoon, the surgical recovery ward is all booked up, so we get to spend an extra night under the watchful eyes of these extremely knowledgable nurses! His swelling will still increase over the next 24 hours and then we'll see it reduce a bit. So far today, we don't see any bruising, only swelling. Pictures are coming, I promise.
Sarah Hoard said . . . Mark and Hill, Woke up this morning thinking of your little man, we are so happy you are keeping us updated and that Keller seems to be recovering well! It is also awesome to read all the blogs of all these people who love and support your family! Looking forward to more great updates. All our love, Mike, Sarah, Liam and Milo
Ben Lappenga said...
Wow, it's emotional for us just to be thinking of you and waiting for updates... can't imagine all that you're experiencing. You are so inspirational to us; your courage, dedication and love are so obvious and exceptional! Our prayers and thoughts are very much with you today, and we're so thankful everything sounds so positive! Ben and Laura
Cindy Dilliner said...
God is good! So happy to hear that all is well with Keller today. Had a crowd gathering around me this morning to read your updates. Have faith in the healing process. I know it seems like forever now, but in a couple weeks you'll hardly even know this happened!! Looking forward to hearing about recovery! I was thinking of you all night!!
FIRST NIGHT
Keller did very well last night. He had two PICU nurses (Marc and Tressa) who watched over him the entire night, so we felt like we were in very good hands. Aside from some minor adjustments to the morphine and a new transfusion of platelets to help with clotting, the K-man was very low maintenance. This morning we were visited by a craniofacial doctor, who let us know that Keller seems to be doing great - if anyone out there thinks they've got a stressful/intense job, I suggest you watch these guys work for a day! Keller also drank some water and some formula, so he's on schedule to start removing some tubes later today. We're looking forward to seeing Hillary this morning - she'll be shocked to see the swelling, but hopefully she'll also be encouraged to see that the old K-man is slowly returning!
FAMILIAR FACE IN THE PICU
Andrew Mullenix was able to stop by the PICU and see us during one of his breaks from his work in cancer care. It was great to see a familiar face in this foreign environment.
MARK AND KELLER IN THE PICU
Get some rest mommy! Keller is doing great - he's sleeping comfortably and only has moments of whimpering every once in a while when his roommate cries. Morphine will help manage his pain tonight so he can get some well-deserved rest. Dad, on the other hand, doesn't get any opiates but has a pretty nice fold out bed that might see some use. . . Otis can have my spot in the bed tonight! - Mark
Angie Weber said . . . I just wanted to send a quick note to pass on my well wishes for you, Hillary and Keller. I hope recovery is as smooth as possible. It sounds like you guys have been wonderful parents; you've done a perfect job making sure he gets the great care he deserves. What a cutie ... and a brave little boy, to boot.Again -- my best to all of you, Angie
RESTING IN PICU
Wow, what a day. Keller is now resting comfortably in the PICU. I'll ask Mark to speak for himself, but for me, I thought the hardest part would be saying our goodbyes before surgery. That ended up not being the case. I felt that I had prepared myself with enough before/after pics to get a general idea of what to expect--but as you might imagine, when it's your little guy--it's incredibly difficult to take in. As we were walking towards his room I could see a little boy ahead of me but truly thought we were walking into the wrong room. I read the charts with his name, but still had to make sure that I was looking at my Keller by checking out his little nose and 2 bottom teeth. I need to say that beyond the swelling and bruising, he really does look incredible. Dr. Ellenbogen (nuerosurgeon) showed us the CT scans and the results are amazing (I plan on scanning them sometime soon and adding them to the site as well). I'm sorry I don't have pictures to post tonight. I regretfully forgot the card scanner at the hospital, so I'm unable to upload photos. I promise to make that happen as soon as I can. Thank you everyone for your prayers and kind words--I'm off to get some much needed rest.
Kristen and Hogie Fritsch said...Hill and Mark, Our thoughts are with you. We know how stressful this time can be, you are on pins and needles from one checkpoint to the next. Holding your breath, then sighing in relief that Keller has made it through each hurdle. Hang in there! We are so relieved surgery went well and hope the same for his recovery. We would love to bring you dinner sometime in the upcoming weeks and look forward to hearing about his progress. Love- K,H,M,K +L
POST-OP UPDATE
Keller is all stitched up and headed for his CT scan. We spoke with Dr. Hopper who reported that all is well and Keller performed admirably! He explained that, since Keller will need to grow into his new forehead, they had to overcompensate his brow (extended approximately an inch from where he was before) but that it will soften as the months go by. He has a good-sized soft spot and also has a drain behind one of his ears to help reduce any swelling. The drain should be removed within 3 days. We should be able to see him in 15 minutes! More to report later...
Cousin Quinn said...Dear Keller. I miss you. Don't worry- don't be afraid Keller. Everything is going to be alright. I hope you feel better soon. I've been to the hospital when I had an owie on my bottom. I have a knock knock joke for you:knock knock>whos there?>Olive>Olive who?>Olive you! Love, your cousin Quinn Jurek
Cindy Dilliner said...Molly and family, Everyone in the Governor's office-and many folks stepping into the office today-have been asking about Keller. Sounds like all is going well and the worst part will soon be over. Me, Monte and kids are all praying for Keller and hugging my own kids tight and being thankful for what we have. Funny how you somtimes take things for granted. Looking forward to hearing about recovery tonight!
SURGERY UPDATE 3
The doctors are in the final stages of putting Keller's bones back in the right spot. The O.R. Nurse expects that they will be finished in approximately 45 minutes. At that point, Keller will be moved to have another CT scan and we will get a chance to speak with Dr. Hopper, the lead plastic surgeon. Time for another coffee...
Darla Bedford said...I remember that hunger is always so hard when they are so little waiting for surgery. I'm sorry they started late - you all must be exhausted! We've checked a couple of times today to see how it's going and are looking forward to the "all clear". God bless you Mark and your wonderful family. Hugs,Les and Darla
SURGERY UPDATE 2
We've had our 2nd update from the O.R. Keller is still stable and the plastic surgeon is currently working on reshaping the bones. Keller is working on his second unit of blood and they suspect he'll need three. More to come...
SURGERY UPDATE 1
Keller's surgery began at 2:50 this afternoon. He was pretty hungry waiting for all of the doctors to get ready, but he kept a brave face. Our first update from the OR let us know that he's doing well so far and things are going according to plan. We'll have more information later. . .
Great Grandma Nelson said...
Keller, Hillary and Mark
Just wanted you to know that I am there with you in spirit today and will pray for all of you. Parents have to do many hard things - along with the good- when raising children. I am sure you have the best care for Keller and this will all be harder on you two than it will be for Keller. So glad you have supportive family with you there at the hospital. Keep the faith! I'll be anxious for a phone call from someone saying "all is well". Love, Marcy
Tim and Laura said...Hi guys! Tim and I are thinking about Keller and his family on this big day! We are so glad your family could come out for this event and that the surgery was not moved back. Keller, you are a strong little man and we know you will get through all of this wonderfully. Much love, Laura & Tim.
SURGERY DAY!
Today's the BIG day! We made it through all of our appointments yesterday and were given a clean bill of health! Surgery will be at 1pm, and will last approximately 5.5 hours. I will do my best to keep you updated with any news as I hear it from the doctors and nurses during surgery. Later tonight I will have a few pictures posted so please check back. Mark and I wanted to thank everyone for your support. Even though our friends and family are all around the world, we truly feel that you're beside us today. Thank you!!
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