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!