Wednesday

Good Morning, World! This is a beautiful day! It is SUMMER! Since I just finished my graduate classwork last night, I feel like today is my first day of summer break! Here are the things I know right now:

• This is the day the Lord has made! Let us rejoice and be glad in it!!
• My house is going to get some serious cleaning up today.
• Celebrity gossip is a totally fun distraction and a great way to get some awesome perspective.
• My favorite celebrities are Kelly Ripa, Kelly Ripa, and Kelly Ripa
• I cannot wait until my new iPhone comes!!
• My husband is on the golf course again
• My sweet boys are going to have to help clean the playroom today. It's not going to be pretty
• I want to get rid of so much garbage in my house - I think I will call the Salvation Army.
• Pink will always be my favorite color
• coffee, chocolate and roses are three of my other favorite things.
• HGTV rocks....pretty much everything on HGTV.

Gotta go create the cutest thank you cards in the history of the world....using pictures of my child, of course!

have a wonderful Wednesday everyone!!!

Finally - bird video is on youtube

Bird video - check this out!

you are not gonna believe this.....

Okay sorry for taking so long between updates. Major busy week last week. Except I can't tell you much what I was doing other than looking for my lost checkbook, which I still cannot find, taking Whitaker out for daily air-conditioned rides in the car, and working on a massive, annoying, seemingly endless project for my Library Media Technology class I am taking right now. Almost done. Thank God.

Other stuff: We went to see "Grown Ups" and the boys LOVED it. John and I thought it was really funny and not even raunchy at all. (how do you spell "raunchy" anyway?) Whitaker got his stitches out today and he is doing awesome. He only flinched a couple of times and I was so proud of him. I really like the Nurse Practitioner that worked with us today. She is super sweet. The incision looks a little bad today but it is just a step in the healing process. He is very excited about getting to swim tomorrow. Tomorrow is full of fun as the new Harry Potter Lego Wii game is coming out, and we are going to the Tuesday morning free movie at the theater. yee-ha!

I ordered iPhone 4's today for John and me, and they will be here in three weeks. So excited about that and really hoping we can drop our home phone - we are hardly ever here anyway and mostly it just gets messages, so I'm thinking it is on its way out. Plus, despite loving my iPhone, I kind of strongly dislike AT&T so I am all about paying them as little as possible.

John has played golf four times in the last week, so don't let him whine to you about never getting to play golf. I'm not saying he doesn't deserve to play, and I know he works really hard all the rest of the time, but he has played OFTEN lately. Today we looked at new irons for him so he could get his old ones cut off for the boys. He won enough gift certificates in his recent scrambles to buy new golf shoes at the pro shop, so I guess it's all good. Right now he is watching a movie that I don't want to watch which will have repercussions for him later.

Whitaker still cannot get hot, get rowdy, run, jump, dive, etc. for four more weeks, but he can throw a ball in the backyard and dribble around as long as he stays hydrated. The risk of developing a CSF leak is almost completely gone, so as long as we keep praying and don't let him stand on his head while watching TV, we should be in the clear. We feel so blessed and so relieved that the surgery was successful and that his recovery has been as smooth as it has. We are so thankful for all of our friends who have brought food, presents, balloons, games, cards, candy, and smiles to us in addition to their prayers. You will all get a thank-you note eventually, but we can never thank you enough.

If possible, I am going to upload a video of what happened at our house yesterday while John was playing golf winning his golf tournament. It is amusing and might serve as more evidence that we should have our own reality show. Not in a crazy-balloon-boy-family sort of way, just a funniest home vidoes sort of way.

O.M.G.

Short update tonight because I can hardly keep my eyes open. Partly because one of them is highly infected.
Here's a timeline of today; happily reporting that it is rather boring other than the getting out part.

7:30 am Substitute neurosurgeon came in and said, if he eats he can go home today.

9:00 - We slowly get up and Whitaker does not want to eat.

9:30 John goes to my parents' house in St. Matthews to get Tretter ready to go to basketball camp at Franklin College.

10:00 My parents bring Tretter to see Whitaker and to tell me goodbye before he leaves. Uncharacteristically sweet and heartfelt exchanges between the boys showed that they will both be happy when things get back to normal.

10:45 My dad takes Tretter back to his house where our good friends are meeting to pick John and him up.

11:00 slightly bitchy nurse from yesterday comes in to ask if we are ready to leave. We tell her that Whitaker has only eaten A GRAPE, and that the doctor said we could go home IF he eats and feels well.

11:15 lunch arrives; Whitaker is not interested in it.

12:00 slightly bitchy nurse comes back to ask if we are ready to leave. We tell her that we are taking it slow and easy and not rushing him, and that he still hasn't eaten much. She says the paperwork is ready when we are.

12:15 Whitaker has eaten almost all of the grapes and eats a couple of bites of his lunch (which was awesome, because I ate the rest when he was done.)

12:30 Mom and I decide we are good to go, he says he feels fine, we pack up stuff and tell nurse we are ready for discharge papers.

12:35 she has finished going over the paperwork and made me sign everything and she was going to call a transport person.

12:36-12:47 I cannot find my car keys in the mess of crap we have frantically packed the last two days in anticipation of getting out. I start to freak a little, but only inside, of course, because I rarely freak out on the outside.

12:50 - find keys, go get car, load up Mom and Whitaker and go successfully (aka: puke-free) to my parents' home (only four miles from Kosair!)

the rest of the day went like this: eat a little sleep a little, eat a little, watch a little golf, John comes back, give father's day cards, load up stuff and go HOME to our house! (all puke-free....yay!)

On the way home, I called my nurse friend MG and asked her if she could come over later to look at my eye as it continues to swell and is painful. She says she will when she finishes eating. Later, I remember that today is her birthday and I feel like a total heel for calling her. I call her cell phone and tell her to forget it, but she came anyway and brought her daughter who is Whitaker's BFF since Kindergarten. She looked at my eye, said it was a stye that became what she believes is peri-orbital cellulitis and I need to see a doctor, but not tonight. This was wonderful news, because we all know what a great procrastinator I am.

So first item up for bid in the morning is a doctor visit to see what the heck is up in my eyelid and then a trip to the vet to get the dog. When the dog comes home, he is coming in the house, because dogs are therapeutic, so there.

I'm really tired, like I-came-home-from-the-hospital-with-a-new-baby tired. So peace to everyone, and thank you all for all your support.

I'll check in tomorrow and tell you about my lovely eye. ;-)

Ready, Set, NO!

Last night, Whitaker had a hard time getting comfortable and did not get very much sleep at all. Therefore, neither did I. When I woke up this morning, my eyelid which has been hurting progressively each day this week, was almost swollen shut. It looks awful and I took a picture of it and put it on facebook to request help from my nurse friends/family on facebook. I cannot understand why no one clicked "like" underneath that picture. It is so lovely. ;-) The responses were varied throughout the day, but the verdict is a stress-induced stye that might need medication to get better. I really appreciated everyone's suggestions, and have tried some warm compresses which may have reduced the swelling a tiny bit. It still hurts like crazy and looks "pretty gross" in Tretter's words.

Our day started like this:

Substitute Neurosurgeon comes in and looks at the back of Whitaker's head, says he looks good, and we can go home. Some student nurse comes in to take his vitals and takes FOREVER doing it. Nurses give him meds again, and he looks really tired and uncomfortable. John and I feverishly start to pack, excited to bust out of this joint.

The nutritional team brings breakfast, and Whitaker has no interest in it; he looks kind of nauseous and requests a bath. Then he says, "Sooner or later, I'm going to throw up." Great.

Nurse: May we help you?
Room 427: Can we get some more emesis bags, please?

Then we had some confusing exchange from a slightly bitchy nurse that was not keen on typing up discharge papers for us and told us to settle down because it would be at least an hour. Then we told her we didn't want to leave if he wasn't eating and doesn't feel well. We requested more zofran, because it is the reason he still has two IV ports in. Blah, blah, blah, we didn't leave today.

Whitaker refused to eat any lunch as well, kind of fell asleep, and John left to go mow yards in Tell City. My dad came and then my mom brought Tretter.

Here is where my day got MUCH more fun. I left the hospital, repeat: left the hospital, and went out to eat at Buckhead with my dad and Tretter. It was hot out there, but I didn't care because I got to see the sun, and the river, and Tretter. After lunch we checked on Whitaker (still asleep) and my dad took me to their house to take a shower and put on clean clothes. After a short discussion, I decided to take Tretter to the movies and dad decided to go back to the hospital to be with my mom and Whitaker, and John's parents.

We initially went to see Toy Story 3 because we have heard great things, but when we got there, Tretter wanted to see Karate Kid, so we did. It was great! The acting was awesome, the scenery was gorgeous, and yes, I liked it more than the original. Jaden Smith is absolutely ADORABLE. Two thumbs way up from us! Tretter let me hold his hand in and out of the theater, which means, he still loves me and he might have even missed me a little. He leaves tomorrow for basketball camp in Franklin, Indiana and it is his second sleep-away experience for more than one night, the first being this whole week he spent with our friends who graciously agreed to keep him and take care of him while we were at Kosair. When he comes home, we are going to have lots of snuggling to do. I feel like he has grown up all of a sudden, in a matter of days. I would likely go to pieces about that, if it weren't for the fact that I already have internalized enough stress.

When we returned to the hospital, some friends were here visiting, and John had returned. My parents were still hanging out and John's had just left. We visited for a little while, and Whitaker was feeling better. Shortly they all left and Whitaker put in a movie, which is just about over and we are going to try very hard for a better night than last night. Hope I find my house in one piece.

Peace out!

fun and full Friday

A very excited Whitaker eating a good lunch. Who knew how much hosptial food had improved? It actually is awesome here! He wasn't quite ready for breakfast today, but by lunchtime, he was holding nothing back.

He read magazines today and fussed at me for not giving them to him sooner. I'm pretty sure I offered, or I would have, if he had been interested. When I offered, he was in ICU, and he looked like this:

 

We obviously like it much better when he looks like this:

Whitaker's full Friday included  two meals with brownies for dessert, a bath, a development and disappearance of a rash, a visit from two neurosurgery nurse practiotioners, two physical therapists, one nutritional consultant, all four grandparents (who have been here everyday), two uncles, one aunt, three out of five cousins, the one and only special brother (complete with double-back-tap-bro-hug), a family of friends, the neurosurgeon, and one extremely nice Chaplain named Steve.

Highlights include a care package with balloons from the Lady Marksmen basketball team (super sweet!), the game ball from Wednesday night's baseball game signed by his entire team (sniff, sniff) and Granddaddy downloading a texting app to his iPod touch (watch out, world!)

(sigh)

I'm pooped.

We might get to go home tomorrow.

Thank you, God for all our blessings, our health, our insurance, and our Whitaker.

Much, Much BETTER Day!

We started out the day with more puking, but since then have made a huge improvement. He is off the morphine, has his bandage off, is out of ICU (in room 427!), and he is talking more, eating more, and tinkling more. He has been pushing my buttons again, which brought a big grin to his face, and he is currently trying to stay awake to watch the Celtics win.

He has been getting up and down out of bed some, not moving his head from side to side a whole lot, but has been tolerating food, drink and medicine, which is great. We really believe that the worst is behind us.

Not sure how much longer we will be here, but we don't really care since he is doing so much better. We will stay as long as they want us to.

At his request, I took a picture of his incision with my phone and showed it to him. He made me promise not to put it on facebook or the blog. So I won't. But in a rare moment of good-mommyhood, I took a picture of the front of him first and made him look at his face and how healthy and normal he looks from the front before I let him look at the back of his head. I felt that would be reassuring, and it sort of was. He decided he didn't look too amused in the picture, so that motivated him to play a trick on me, which was mean, and shows he is almost back to his old self. gotta love that! He thought the back of his head looked bad and that he looked like Frankenstein. We told him it looked really, really good considering what all was done to him.  Of course, we think he is adorable, but he is particularly adorable when he feels well.

Thanks again for everyone's kind thoughts, cards, and especially prayers. When he gets all better, we are going to have a huge "Well Whitaker" party to celebrate. Everyone is invited, and I do mean EVERYONE. Even if we don't know you or you don't even like us, you are still invited to come celebrate the wellness. It won't be for three months, because we have to follow doctor's orders, but I'll let you know.

Here are a couple of pics - not the ones I promised not to post, but a couple of others from our week.

above: pre-op with some happy juice. below: post-op and not so happy

 

 peace to all. 

better, better, better

Successes: lots of pee and no more pee problems. (Yippee!) Baby L got good news this morning and some more good news this evening, so prayers are working for her too!!!

Started off the day kind of rough - was awake from about three to six andhe couldn't get comfortable. We moved the pillows, the bed, and his head, but he just kind of grunted at us a couple of times. This morning he got really sick when the neurosurgeon's nurses were in there and asking him about trying to eat something. Just the thought of eating something solid mad him puke all over the place. Then they worked out some more zofran and less morphine to see if that combination would help. So far, so good. He has had two doses of liquid baclivan (sp??) by mouth, and one colace pill, some blue slushy and now some chicken noodle soup and all of that has stayed where it was put! Another huge success.

Still in a small cubicle in the ICU and not too hopeful that we are getting out of there. Got the bandage off this morning and did great - he didn't even whimper. The incision is awesome-looking - no infections, swelling, or drainage. He got in the chair two times and sat up for a while, once for an hour and once for about a half an hour. He had a pretty good nap and he hopefully will have a good night.

Thanks for all your continued thoughts and prayers.

baby "L" is crying

I don't know whether that is a good thing or a bad thing, but it is stressing me out. I also am slightly to severely stressed out because my child cannot pee. He has puked out more than what has been put in today, but they are still probably going to cath him if he doesn't produce something in the next three hours. I feel so helpless because he is just laying there.

Earlier today, he did get out of bed and sit in a chair. The doctor came in and explained some things to us, but basically just reassured us that anything kids do is acceptable because every kid is different. He asked Whitaker if he had been watching the World Cup and if he watched the US. Whit said no, so the doc asked him if he could remember what teams he did watch. Whitaker thought about it for a moment and said, "Japan and Camaroon." I was trying to remember and all I could come up with was a visual image of an Oriental guy in my head, so I am taking his correct answer as a great sign of his cognitive abilities.

Spending the night (or until further notice) in ICU. Can't sleep much due to lots of beeping and checking and children crying, but W gets really good care in here, so it's all good. Just hoping tonight is quieter than last night and tomorrow is a better day.

Summary: Couple of med changes, hoping for some pee, still waiting for a regular room, not even close to being ready for visitors.

and one more thing.....how ironic is it that they have a MCDONALD'S in a hospital?  I'm thankful for the coffee, though, and please say a prayer for baby "L". Her daddy just came over and gave us cupcakes and offered some movies for Whitaker to watch, but he's so not interested.  She's sleeping now, too.

another day, another bag of fluid

Whitaker is having a little bit of a rough day. The nurses are assuring us that he looks "good" and is doing "great" even though it may not seem great to us. He cannot sit up without puking, which he hates. The bed has been adjusted to where he is sitting almost all the way up and his incision is not leaking too much, but it is still kind of nasty. All of this is to be expected after such a surgery, but it is still hard to see him laying there and know he doesn't feel well. We have asked for a different medicine for nausea next time since that other one (Zofran??) doesn't seem to be working. Some one sent a gift and when they brought it in they asked he wanted it now or later and he said later. He is still in the ICU and we are hoping to move to a regular room later today.

Next to us they have moved in a baby who was born with half a heart. They are a young couple and they have been here for 27 days. She is so cute and if you want to pray for little "L" while you're praying for Whitaker to quit puking that would be great.

I am going to need so many spa treatments when this is all over. Luckily John is great with Whitaker, all the time, but especially when he doesn't feel well. Therefore, I am forbidding John to leave - at least today. If you don't get your lawn mowed, please understand.

He is sleeping now - says his pain is between a three and a five on a scale of 1-10, but he is not about to move unless forced to do so. The catheter is out (I'm sure he will love that I shared that) and his vitals are all stable and strong. We stroked him a little and told him that he will not feel like this for long - even though he feels bad right now. I think he wants to believe that.

I really, really appreciate how kind and supportive everyone has been and I would ask that you please keep the prayers coming. We know that all the love, prayers, and positive thoughts helped the surgery go well, so now we just ask the same for the recovery!! We are hoping things take a turn for the better very soon! This is a great hospital and everyone here is very knowledgeable and helpful. I know with each passing moment that we are closer to being out of here, so I am just trying to hang in there, one moment at a time.

More later.....lyons, out!

Thank God for parents

It has been a loooong day here at Kosair Children's Hospital and my Whitaker is blessed to have had four grandparents here the WHOLE time! Here at the crack of dawn with us, they have brought coffee, offered moments for laughter, been good listeners, worked sudoku puzzles, and shared their electronic toys all day. I cannot express in words how much this means to John and me and I am sure, one day, to Whitaker.

Even though we know there is a recovery road ahead, it makes it better to know that there are reinforcements supporting us as parents and ready to step in with a hand, or a sandwich anytime.

So, if you see Agnes or Gene Lyons, or Bonnie or Steve Johnson, you can say, "Hey, I heard you spent a day in the hospital!" and they might share their point of view. Any of us would have rather been the patient, but hanging out together made the day more bearable.

Out of surgery

Forgive me if there are typos, I am using my dad's iPad, and although it is awesome, the set up is a little different than my laptop.

We got the word that Whitaker was out of Surgery about three hours and forty-five minutes after the doctor made the initial incision. We went to a conference room and then Dr. Stevenson came in to talk to us. He said that Whitaker did great and assured us that he was doing fine before he went through the surgery with us step by step. Dr. Stevenson found that the first vertebrae, which was going to have half removed in the course of surgery, had actually fused to the base of the skull and therefore, the growth hormones would likely never have made enough room back there. Because of this, he removed all of the first vertebrae, after he separated the fused part from the skull. He told us this was not a big deal, just affirmation that the Chiari malformation was not going to be correctable without surgery. He said that he tried to see if the decompression of the brain would be adequate by only removing a portion of the skull, without going into the fluid-filled sack at the top of the spinal cavity, but it wasn't going to do the trick. Therefore, he went ahead with what he calls, "the full Monty". He did all the other parts of the operation, which included opening the pocket that protects the cerebellum, shrinking the tonsil that was descended below the base of the skull, and carefully, meticulously inserting an expandable patch to take the place of the missing bone pieces.

He also said that whitaker's neck is bigger than his, so he could absolutely not get away with dissolvable sutures. When the bandage comes off, he will have big black stitches for two weeks until he goes back for his post op check.

Whitaker is in ICU now and John and I went back to see him. He was trying to get comfortable and has wanting to lay on his face so the nurses/doctors/team of people back there in his room worked it out so he is laying flat, but still at a 20-degree angle. The risk of a leak of craniospinal fluid is greater if he is laying flat, so he has to be at a 30-degree angle until he gets out of he hospital. His incision is not bad, but the shaved part and the iodine make it look a little angry. He was asking for ice chips and John is giving them to him. There is only room back there for one at a time, and John is good at this part (which is code for "I don't want to be in there if he pukes") and John has to leave tomorrow to go to a conference in another city, so I am being "generous" and letting John be with him. I'll go check on him and give john a break after I update the blog!

dog update

Long story short....my wonderful friend Barb sent me links to two places:
here, http://www.softpaws.net/?gclid=CMjbltCClqICFYd-5QodsBxuGg
where I got some nail covers for the dog that are acrylic or plastic and you glue on over his own nails.......

and I got him some booties from here: http://www.amazon.com/s/ref=bl_sr_kitchen?ie=UTF8&search-alias=garden&field-brandtextbin=Ultra%20Paws%20Durable%20Dog%20Boots

Monday, John went to play golf, I picked the dog up from the vet and gave him a bath, flea/tick treatment and massage and brushing. Then I put the nail tips on him and I thought it helped a lot to keep him from scratching. When J came home, he was mad and grouchy for about two days. Then I whipped out the booties and they work PERFECTLY to make him not scratch the floors. I also played the sympathy card and told him that dogs are therapeutic in recovery and that we needed to do whatever we could to help Whitaker next week when we come home from the hospital. (No wonder he is such a maniputlative little guy!) Now the dog looks like this, happy and comfy in our house after his week of being an outside dog.

can you see the love on that face?Tebow is not totally crazy about the booties, but we are crazy about him, so this is how it is going to be. for a while. until the kids scratch the floor up so badly that the dog's marks will be unnoticeable. hehe

some great Chiari info

Found an informative and easy-to-read sheet about Chiari Malformation here.

http://www.conquerchiari.org/awareness/Chiari%20Patient%20Education%20Sheet.pdf

Breif details about Whitaker: his "tonsil" of the cerebellum is descended 23 mm below the base of the skull. It is attached to the top of his spinal cord and there is VERY little to no cerebrospinal fluid (CSF) between the cerebellum and the rest of the brain. He has been symptomatic with severe headaches in the back of his head during coughing, sneezing, exercise, and when he wakes in the morning. He also sometimes vomits in the mornings and has difficulty swallowing when he is congested.

Surgery outline: 4-5 hours, and from what I understand, the doctor will do the following:

• make an incision down the back of the neck at the base of the skull (about 4 or 5 inches)
• cut through the neck muscles and remove a section of bone from the back of the skull
• separate the top of the spinal cord from the tonsil
• shoot electrodes through the elongated tonsil to shrink it
• shrink the tonsil to the point where it is closer to if not all the way up to the base of the skull

this is where I get a little confused:

• he will carefully sew in an expandable patch that will be at the top of the spinal cord and the base of the brain and cranium.
• sew up the muscles and the fluid pouch at the top of the spinal cord
• seal the opening

Whitaker will have a neurophysiologist (I think ??) monitoring his spinal cord and nerve activity the entire time. He will have an anaesthesiologist with him the entire time as well to watch the levels of anaesthesia.  Yesterday he had blood taken so they could determine the levels and thickness of his blood in order to fully prepare for blood loss during surgery. We can give blood to be given to him, but it is only good for three days, so it would have to be Monday or Tuesday.  My blood pressure is too low to be able to donate, but I have O- blood, so we may look for an alternative method. We are hoping he won't need any, but John might give some on Monday if he can. I am pretty sure John and Whitaker are both A+ but I can't remember for sure.

He will be in intensive care for the first 24 hours. Other than bleeding, and infection, there is a risk of developing a leak of CSF after the patch has been placed, which might require a drain. We really, really hope this does not happen. We know that all the prayers will work for him to have no complications and a smooth recovery.

He should be moved to a regular room after he gets out of the ICU.  He will be there for a couple more days until he can eat and everything seems to be working well. Then we will come home and hopefully celebrate Father's Day together by being lazy and lounging.

The surgery will take place at Kosair Children's Hospital Our pediatric neurosurgeon is named Dr. Charles Stevenson. He is young and brilliant and we have every confidence in him. He went to SMU, then Vanderbilt, and is headed to Cincinnati Children's Hospital in a couple of months to become part of their team. We trust that God has put us in good hands.

Kosair Children’s Hospital

231 E. Chestnut St.
Louisville, KY 40202
(502) 629-6000
KosairChildrens.com

If you need to contact any of us, for anything, our cell phone numbers are as follows:

812-449-8981 (amy)
812-719-0402 (john)
502-819-5387 (Bon Bon - amy's mother)
502-777-4944 (Granddaddy- amy's father)
812-630-8282 (Grandma and Grandpa Lyons aka Gene and Agnes)

I will try to update people on the website or on facebook. Thanks everyone for your kind thoughts and prayers. We are so thankful that this is a fixable problem and that he is going to make a full and complete recovery.

Here are some pictures of Whitaker's MRI scans. His chiari and his spinal cord are basically fused, so it is hard to see anything except a big blob at the base of his skull and the top of his spine.

Another view looks like this, but I probably couldn't explain it if I had to.....

If anyone has any questions, feel free to ask me. We have nothing to hide, but we also don't always know the answers. We know that this is a routine surgery for pediatric neurosurgeons and we know that his Chiari is a large one, but we still are so thankful for so much: the diagnosis, the total lack of neurological damage, the resilience of children. If you have any knowledge to share, please feel free to write us or call us, as we are certainly open to suggestions. If you are a nurse and we come home with a drain, we might be calling you!