November 30, 2008

We are finally home (hopefully for good this time)

We got home from Kosair late yesterday evening. Aiden is still not eating consistently, but he will take a few ounces here and there when he feels like it. They felt that based on his input v. output measured while in the hospital, that he was okay to be discharged.

The bigger news is that we have removed one of Aiden's arm casts to reveal his brand spankin' new fingers. Over the past couple of days, we noticed that his left arm cast had a very pungent odor that continued to get worse. It smelled different from the other casts.We had spoken to Dr. Fearon and his nurse Cindy and they told us that we could go ahead and remove it at our discretion if we felt that the odor was bad enough that it might indicate a problem/infection. I didn't feel comfortable making that decision, so while we were at Kosair, I asked to have an orthopedic doctor come visit to get his opinion. As we were waiting to be discharged, the orthopedic resident came by and I filled him in on the situation. He said that he thought it was necessary to remove the cast to check for infection and be on the safe side.

I was panicked. I mean I know Dr. Fearon said it was okay to go ahead and do it (2 weeks early), but I was nervous, excited, and worried all in one. I wasn't sure if I was prepared. He spoke to his boss and he agreed. I had Dr. Fearon on the phone as he rolled the cast off his tiny little arm. He laid there calm as could be.
I won't post pictures of his hand for the mere fact that it looks VERY rough (which can be expected after surgery of this type and being bandaged and casted for 8 days). But let me assure you that the moment I saw his hand exposed and he wiggled his little fingers, I was a bigger mess than the pile of bandages left on the bed next to him.
My little boy has fingers. Amazing.
By the time I got him home, he was staring at them with as much awe as we were. He immediately used his hand to bat at toys and rub his eyes. All I can say is that it must be such a relief for him to be able to open and close his little hand after all of this time.
I am very excited to show everyone his new hand, and will share pictures on this site once it has healed a little more. But if you are anxious to see it and don't have a weak stomach, please email me separately and I will be happy to send some of the pictures to you.The remaining 3 casts are set to come off a week from Tuesday.
Oh, and the hand had no signs of infection. :)






November 24, 2008

A Day in the Life

We're finally able to do what we love to do - hang out as a family with both kids good and healthy, watching random stuff on tv while we laugh and act silly. It's been a long time coming with Aiden's surgeries but finally, we're back to "normal". Of course some people might question if dancing to the Wiggles and playing in a laundry basket or an empty box is "normal", but hey, that's a day in our life.

Here's some of the best moments captured in photos:















Ethan preparing to eat his favorite thing in one of Daddy's old t-shirts...BLUEBERRIES!







Yes, that is a drop of blood on his chin - he just busted his lip climbing in and out of the box. Like I said, just a day in our life!



Aiden enjoying his brand new hand! Check out that pinkie!!!






November 23, 2008

Ethan's special day

We've been so busy with Aiden's doctor visits, the trip to Dallas, and his recovery that Ricky and I wanted to take Ethan out for a "special" day. My mother-in-law watched Aiden and we started our excursion by having lunch at Pizza King. They have a big train with booths that you sit in and each table has a little window where you can watch an electric train go around. It has flatbeds on it that bring your drinks to your table. Obviously, this is a big hit with Ethan!

Next, we dropped Ricky off to get his haircut and Ethan and I headed to a medical store to get some supplies we need for Aiden (not really meant to be part of Ethan's special day, but it was in the area so I was multi-tasking!) There was a 4 ft. fake Santa Claus right when we walked in, so once I peeled him away from that, he wanted to help me shop. I let him carry around (drag around really) the little shopper basket as I threw in the things I needed. He was sooo cute - he would throw random things into the basket and then I would take them right back out and reshelf them - but I would ask him what each of the things was. The first was a small box of gauze pads and for whatever reason when I asked him, he said "It's 'tatos mommy" (that's potatos in toddler speak). He was cracking me up.

Finally, we headed to our next destination - Puzzles Fun Dome. Ricky nor I had ever been here before, but it was clear that Ethan would have a blast when we walked in to see 4 or 5 HUGE blow-up bouncies - a 30 foot double slide, a Superman obstacle course/slide, moon bounces, tunnels, toys, and more! Ethan was in heaven. And quite honestly, I wasn't sure who was more excited when we walked in, Ethan or my husband!

We spent a few hours there until Ethan was thoroughly tuckered out and then headed home. He was so good and it was really nice to be able to spend some one-on-one time with him since we've been so busy with Aiden. Unfortunately, our camera battery was dead, so I don't have photos to share, but we did have our video camera so if I can figure out how to get those on here I will.






November 17, 2008

Back to the hospital...

Yesterday, my mom drove Ethan down from her house in NKY so she could come visit Aiden when he got home. She kept Ethan the week we were gone...and she survived! He had a great time at Nana's and didn't want her to leave. But he was happy to see his mommy, daddy and little brother and was completely wound up the whole night. Ahhhh - back to normal.

Well, almost.

Aiden was doing great until he decided to be stubborn and completely refuse to eat anything all day Sunday and Monday. So we called Dr. Trone who thought it would be a good idea to have him get some fluids via IV. I took him to his pediatrician who was going to draw blood in the office to check his level of dehydration and then hopefully we could 'force' liquids by mouth at home to avoid another hospital visit.

"Where are you going to draw from?" I questioned, thinking it probably slipped her mind that it wasn't going to be easy since he was casted. "Well, shoot, I guess we'll have to send him to children's downtown," she replied. We were trying to avoid having to bring him here - I mean, hospitals are germy places - but with the difficulty of trying to draw blood from a scalp vein, it had to be done by an IV nurse. The blood work showed him to be borderline - that is it was probably necessary for him to be admitted.

So that's where I sit now. In ANOTHER hospital room. I had one good night sleep in my own bed and now I'm back to a pull out chair. This stinks.

But my trooper Aiden is doing just dandy. Now remember he wouldn't eat ANYTHING AT ALL for the past 2 days. Not formula, pedialyte, water, pureed foods, nada. Not in a bottle, through a syringe, from a spoon. And what does he do after they put us in our room for the night? Scarf down 7 oz.. What a stinker. I think he just missed flirting with nurses...

Again, I must say that I am very blessed to have an awesome family and wonderful friends. My friend Kristin brought me dinner - comfort food staple chicken pot pie - and visited with Aiden for a while. And my neighbor surprised us yesterday with a pot of chili and some chocolate chip cookies. Man, I'm never going to lose any weight!

Here's some pics from tonight. He looks like an indian with the IV sticking up out of his head and the green head wrap holding it in place. He kind of looks like Karate Kid too! You be the judge. Regardless, he's pretty stinking cute! As usual, the nurses all just want to eat him up...I told you, he was just craving attention, that's all.








November 14, 2008

We're heading home on Saturday!

Dr. Trone came to see Aiden and was very pleased with his progress. He decided that it wasn't necessary to keep him here until Sunday, so he's said Saturday will be okay. Yippee!

We're flying home Saturday around 4pm and will arrive in Louisville around 9. I am so looking forward to getting Aiden home in his own bed. We will all be much more comfortable there.

Thanks so much for everyone's thoughts and prayers - it has been a long week and we really couldn't have done it without our friends and family.

Also, I mentioned earlier that we were able to see pictures of Aiden's hands post-surgery before they put the casts on. We've asked Dr. Fearon to email them to us and he said he will be doing that this weekend. The photos are too graphic to post on here, but if you are interested and don't have a weak stomach (that pretty much eliminates the Cozzie side of the family), please email me and I can share them with you separately. Otherwise, you can wait until December 3 when his casts come off and we can get his new fingers all cleaned up - I will definitely be posting those pics on here!

Unless anything changes in the next 24 hours, this will probably be my last post from Dallas. Thanks again everyone for your support!






November 13, 2008

Yet another...

Good news - we were able to move to the pedi floor late Thursday night at around 10p. Luckily, the nurse after shift change told me just as Ricky had made his way down to the car to head back to the RMH so I caught him before he left the hospital. He and I are both staying the night with him now. We've decided that sleep is over-rated...

Aiden continues to do really well. He's eating more and fussing less. We've been very pleased with the staff here at Medical City Dallas. That combined with the wonderful team of doctors that we've chosen to care for Aiden and do his surgeries only reassures us that we have made the right decision in bringing him here.

Until next time...






Another update...

Okay - so we are staying another night in the PICU, but not because Aiden needs the extra care and monitoring, simply because they don't have any open rooms on the regular pediatric floor. This stinks because this room is too small for both of us to stay and Ricky really wants to but I am kicking him out (I guess the mommy wins this one!) Don't get me wrong, there is nothing comfortable about (not)sleeping sitting up, hearing your child cry on and off all night and having a nurse pop in just when he does actually fall asleep, but my maternal instincts just won't let me leave him for the night.

Dr. Trone (the ENT) and Dr. Fearon (the craniofacial specialist) had differing opinions about when Aiden would be ready to go home to Indiana. Apparantly, Dr. Trone won this fight and we've been told that Sunday is the best we can do. We're okay with it because we want to have him be 100% ready to go home with us, but it is still frustrating. We miss Ethan terribly and are ready to be back in our own digs.

Anyway, Aiden is smiling some (finally) and even eating his formula in small amounts. We tried giving him pears but he wasn't ready for it. I'm sure I'll continue to update while we're here so keep checking.






November 12, 2008

Surgery #2 Update

Surgery #2 went well. Aiden is now tonsil and adenoid free. Dr. Trone said he had a little trouble getting his IV in - they had to put a central line in his jugular and it took several attempts. No problems though. They did an x-ray of where it goes in to make sure it looked okay and it does.

He (and I) will be staying in the Pediatric Intensive Care Unit (PICU) to have very close monitoring throughout the night. He seems to be in some pain and is just very irritated that he can't suck on his paci without his throat hurting. He still hasn't taken a bottle so the fluids in the IV will have to suffice for now. He definitely wants to eat, he'll try sucking, but then stops and cries as I'm sure his poor little throat hurst terribly. (Not to mention his Mega Man arms and legs too!)

Ricky went back to the Ronald McDonald House for the night to try and get some rest. Knowing him though, he won't be able to stop thinking about Aiden and how he is doing so that will pretty much be pointless. But only one parent is allowed to stay in the PICU as the rooms are very small. I'll be sleeping (or not) on a recliner chair - and let me tell you, it ain't no Lazy Boy! The broken pull-out love seat in the room on the regular floor where we stayed last night doesn't sound too bad now...

If all goes well tonight, that's where we'll be tomorrow night. And then (fingers crossed) we may be able to go home on Saturday. I'll continue to update everyone here. Thanks for all the thoughts and prayers. We're really glad to have the surgeries over with finally so we can focus on getting Aiden back to his normal, happy self.

PS - Some people were wondering what all the stuff was on his hands and feet. From the picture, you can see his dark blue casts underneath all the foam padding. They put the foam padding on so that he doesn't bonk himself in the head with the casts before he realizes that they are there. The padding also helps to keep his hands and feet elevated. Tomorrow, the padding will come off and it will just be the casts. They are soft wrapped casts (not plaster) and will only stay on for 2-3 weeks. Our local pediatrician will be removing them so we don't have to come all the way back to Dallas for that.






Aiden surgery update #4

Dr. Trone is able to do Aiden's tonsillectomy this afternoon at 12p. Yay! So now we don't have to wait until tomorrow - when Aiden would be feeling much better than he is today - and do it all over again to the poor little guy. At least this will blend his overall length of feeling like crap and shorten the recovery time (even if it is only a day).

He didn't get much sleep last night. He woke up frequently, crying, fussing, lifting his heavy little arms and legs in the air trying to figure out just what in the world we had done to him. Man it broke my heart. It's not his normal "I'm mad/tired/hungry" cry. It's a very pathetic soft whimper.

So the plan for today is to wait to speak to Dr. Trone, surgery at noon, stay one night in the ICU and go from there. We could go home as early as Friday - but more likely, it will be Saturday or Sunday.

I'll update after his surgery.






November 11, 2008

On a lighter note...

Too bad he didn't have this surgery done before Halloween - we would have had the perfect costume. Introducing...Mega Man!

(I wasn't personally aware of Mega Man's existence, but Ricky knew of this video game character and I have to say, the resesmblance is uncanny!)








Aiden surgery update #3

Okay - change in plans. We thought we were home free, but I guess we were counting our chickens before they hatched. As I mentioned before, Aiden had a follow-up sleep study done last night to look for any type of apnea. We met with the ENT during the pre-surgery appointments yesterday and after his examination, he concluded that Aiden did not need to have a tonsillectomy during his operation. He did, however, want to get the sleep study results to make the final call before starting surgery. That did not happen. We made several calls to the sleep lab but couldn't get anyone to get this done. So we went ahead with surgery.

After sitting in our room for a few hours, Dr. Trone (the ENT guy) came in looking concerned. He said that he finally got the results from the sleep study and it showed mixed apnea - a few episodes each of both obstructive and central. He then said that he recommends to go ahead and have Aiden's tonsils removed while we are here. Ugh.

So what this means is that instead of spending tonight in the hospital and tomorrow night back with us at the Ronald McDonald House before heading home on Thursday, we will now be here a few more days. We have tentatively scheduled his tonsillectomy for Thursday. He'll spend 1 or 2 nights in the ICU, then a couple extra nights in a regular room to monitor the swelling and his ability to take in fluids.

We keep throwing around the "if only" scenarios - if only we would have had the sleep study on Sunday instead of the night just before his surgery; if only we would have pushed the sleep lab more to get the results prior to the operation so they wouldn't have to put him under anesthesia again (for the THIRD time this week!); if only Dr. Trone would have been able to contact them to stress the importance of getting the results ahead of the surgery time...but we are just going to put all that aside and focus on the here and now. What it comes down to is that we want to do what is best for Aiden. And if that means a little more time here in Dallas, so be it. Heck - it's 74 degrees here and a lot colder back home so we'll take it.

So, if we can, we'd like to ask for a few more days of prayers our way!






Aiden surgery update #2

Great news - the surgery went well and Aiden is now in his own room for the night. We had been told the surgery would take 4-6 hours. He went back at 7:40 and was finished right around 11:45 so not bad! Dr. Fearon came out to meet us in the waiting room and he showed us some photos he took of Aiden's new hands (after first warning us that they might be pretty yucky looking). We didn't care - we wanted to see them. It was amazing! (and a little yucky though too).

Right now Aiden is very comfortable. He's sound asleep. We took some photos of him in his casts in the recovery room and I will load those in a little while. I'm waiting for Aiden to wake up so that I can feed the poor thing - he hasn't eaten all day! We'll start with Pedialyte to make sure it sits okay on his stomach, then he'll go back to a normal diet.

Ricky and I are so relieved the surgery is over with. It's been a very long and emotional day. We're both pooped, but still holding up well. We're in much better spirits now that the hardest part is behind us.

Thanks again for all the emails and phone calls!

PS - a big thank you to my sister for putting together two beautiful DVDs of photos of the boys (one of Ethan, one of Aiden). I miss Ethan so much so I've watched it over and over. And having pictures of Aiden smiling and acting like his normal self makes it easier since he's so not himself right now. Thanks Lauren!






Aiden surgery update #1

I arrived at the hospital bright and early to meet Ricky and Aiden in the surgery department. Aiden was happy as can be. They asked if we wanted him to have any "goofy juice" which would help with any anxiety when they took him back for anesthesia. He was so content that we decided against it - one less med to have in his system. (I did ask, however, if they were able to give goofy juice to me as I would probably be the one with the separation anxiety. Unfortunately, they couldn't...)

We met the anesthesiologist and then Dr. Fearon arrived. They assured us he will be well taken care of - but it didn't make it any easier to hand him over and watch the nurse walk away with him into the OR. Of course, I cried. Luckily, Ricky was there with me to keep me strong and hold me tight. I feel very blessed to have such a strong relationship with my husband. I couldn't do this without him.

Now, we sit in the pediatric surgery waiting room and watch a large television screen for updates. It shows the names of each surgery patient (abbreviated for privacy) and details as to what part of surgery he is undergoing - holding, OR, recovery, etc. You can see from the below picture that when there is a scalpel next to the name, that is when surgery has begun. Aiden's as of 8:30am (9:30 EST), still doesn't show a scalpel. The nurse said that it will take about an hour and a half to prepare the room, make surgical markings on his hands and feet, etc. Then they will begin by taking skin grafts from his groin area to use between the incisions of his new fingers/toes. We are then able to call directly into the OR for updates as often as we want (they recommend every 30 minutes).

We're holding up well - just very anxious to make that first call. They have asked us to wait until the screen shows the scalpel. I can't remember ever wanting to see a scalpel in my life until today...

I'll keep everyone posted!

In the meantime, here are some photos from our trip so far:


The television update screen in the waiting room.



Last picture of Aiden's cute little feet before his toes!



In the pre-surgery area. Notice his shirt - it says "High Maintenance". I've always called him my high maintenance baby (well, he is!) so I just had to get it when I saw it at Children's Place.



All hooked up during the sleep study. I told you there were a ton of wires!



Just as happy as can be!



After a bath.



Daddy and Aiden



He's sure going to miss sucking on those feetsies. He won't be able to get to them until the casts come off. I wonder what he's going to think of his new toes!!!!






November 10, 2008

Farewell old hands, hello fingers!

This moment is bittersweet. I am flooding in emotions as I prepare for Aiden's surgery tomorrow morning. It seemed like this day would never get here - and now that it is, I'm starting to get all sad and weepy thinking about how my perfect little Aiden is going to change so much in a matter of a couple of hours. His little hands, all curled up like a rosebud, are going to blossom into an actual thumb and fingers with Dr. Fearon's gentle touch. Of course I won't be able to see what it looks like until the casts come off on Dec. 3 (might be earlier for the feet). I've had dreams since his birth that his hands suddenly start to open up - fingers sprouting like they just had to continue the process of separation in their own time. And now, this surgery is going to make that dream come to life (well, sort of).

I keep thinking about his soft little feet. I'm going to miss those feet. The smooth, kissable little feet with stuck together toes. With the surgery and the casts and the healing, it might be a while before I get to kiss them again. And even though his feet will look more "normal" - they won't be the same untouched feet that God gave him. Bittersweet.

Aiden has spent many hours staring at his hands, then looking to mine in amazement and wonder with my fingers dancing around in front of him. I could see the wheels turning in his head - I just know he was thinking "Wow, what are those and where can I get me some?"

Well Aiden, tomorrow you will. But always know that I love you just the way God made you.






A Million Thank-yous!

I'm sitting at the Ronald McDonald House thinking about Aiden and how he is doing during his second sleep study. Ricky and I decided to split shifts - he is staying with him at the hospital tonight while I (try) to get some sleep, and I will stay tomorrow following his surgery while Ricky heads back here to rest.

I'm not supposed to have food in my room, but I couldn't resist sneaking in the wonderful box of cookies sent by our friends April and Tate to munch on as comfort food. Man are these things delicious. Although I'm trying to lose a few lb's, I think there is some kind of unwritten diet rule that says it's okay to eat bad while out of town when your child is about to have surgery. (Alas, I don't think it says it's okay to eat ALL of the cookies in the box...hmmm, better put that one back...) A HUGE thank you to The Gormans for sending these our way.

Having Aiden has brought so much joy into our lives that we never imagined possible. During those first few days when we were dealing with the emotions of learning about Aiden's condition, we were in a very dark place. Nothing that anyone said to us could make us feel okay. We worried about what our family's future had in store. We worried that the way we imagined our lives turning out was never going to be our reality. After a few weeks though, something changed. And I have to believe that the love and support of not only our friends and family, but also complete strangers, is what has helped us pull through.

I've already mentioned the Gorman's. We had never before met in person, we'd just sent emails back and forth and read eachothers blogs - but it's amazing how comfortable it was meeting them for dinner. It's like we had known each other for ages. I feel very lucky to have been connected with them. It will make our trips here a lot easier knowing that we have a support system who has undergone some of the very same things with their child as we are going through with Aiden. Their adorable son John is Ethan's age and we're hoping to bring him along next time so they can meet. They also have a little girl, Rory Cate, who is so beautiful it briefly made me get the baby bug and had me thinking about trying for baby number 3 just to try for the girl I so want to have (Don't worry - I said briefly - it will be a few years...trust me we've got enough on our plate!)

And then there is Glenn Dixon, the direct sales guy who works for Samtec and lives here in the Dallas area. He and his colleagues at a local rep firm arranged and paid for a rental car for us to use. The rep company, Kruvand, hand delivered a care basket to the Ronald McDonald House with fruit, a veggie tray, drinks, snacks, crossword puzzles, magazines, you name it. The kicker...we've never even met these people! Out of the kindness of their hearts, upon hearing about Aiden from Glenn, they so generously donated their time and money to put this basket together for us.

Finally, all of our family members who sent us their kind thoughts, prayers, and things to help us relax (no, not drugs!) and keep our minds off the tough stuff, have also played such an important role in helping us stay positive and strong. We simply cannot thank them enough for their support.

We feel truly blessed to have such amazing people in our lives - family, friends and even complete strangers. A million thank-yous go out to you from The Skees family!

And what the heck, I might as well go ahead and eat that last cookie. I mean, I'm gonna eat it for breakfast tomorrow if I don't eat it now - so what's the difference - right?






November 09, 2008

We are in Dallas

We made it to Dallas with no problems at all. Aiden was great on the flights - we came prepared with toys this time since we knew he probably wouldn't sleep the whole time like he did as a 3 month old.

Once we got in, we were met at the airport by a direct sales rep from here in Texas who works for Samtec (where Ricky works). He had offered to let us use his car while we were in town, however it turned out he needed it for out of town travel so he and his colleagues pulled some money together and rented us an SUV for our stay. All I can say is WOW! A big thank you to Glenn and those who made this possible (and don't even know us!)

We went to the Ronald McDonald House and after getting settled, we had arrangements to meet with a couple and their 2 children for dinner. I met them via the internet - April emailed me a while back after doing a google search for Dr. Fearon and coming across our family website. Her son also has a craniofacial syndrome, Crouzon's, and they ended up having him treated by Dr. Fearon as well. It was so nice to finally meet them in person. We had a wonderful time. You can read more about them at www.thetatertot.blogspot.com.

So - tomorrow is going to be a long day of doctors appointments and pre-surgery visits. He'll then spend the night at Medical City for his sleep study before surgery on Tuesday morning.

Check back for more updates to come later!






November 04, 2008

And the results are in...

Aiden did wonderful at his early morning visit to Kosair for his follow-up ABR and his MRI. He was put under general anesthesia which was needless to say very nerve racking for me. Luckily, I had my cousin there with me for support. She flew in all the way from Chicago to be my "nanny" for the week! Isn't family wonderful???!!!

He passed his ABR with flying colors - once again, they said he had text book results. I really didn't have any doubts about it though. He always flips around when big brother Ethan enters the room or the tv turns on.

The MRI was the "big" test that we were really nervous about. The need for it came about quite suddenly after his sleep study last week showed possible central apnea. He was finished with the MRI by 10am and we were told we had to wait the standard 24-48 hours for results. Ugh.

I did get a copy of the images on a disc to overnight to Dr. Fearon though, so of course I had to check it out myself the second I got home. I pulled up the images, then googled "MRI images, chiari malformation". My sister (who also came in town to help out!) and I sat there comparing what we saw and determined that things looked good - that is we didn't see the same blocked area that the images of chiari malformations showed. We still had to wait to hear for sure.

I called the pediatricians office to ask if they would make a note to call as soon as they received the results, as I was very anxious. Although it was only 2pm, she said it wouldn't hurt to call and check to see if they had by chance completed them. A few minutes later, she called back with the news...

MRI results show NO chiari malformation, no fluid, and no pressure on the brain! Yippee! What a relief!

So, after speaking to Dr. Fearon's office about the results, the plan is back to normal for his surgery next week. We will still do the sleep study on Monday night to see if there is indeed some apnea. But he doesn't even think we will do the tonsilectomy at this point if we can avoid it while he is so young.

Thanks for everybody's thoughts and prayers! And a special thank you to my helpers - my cousin Joy and my sister Lauren. I couldn't have gotten through today (and the rest of this busy week for that matter) without their help!

Also, another thank you goes out to my grandma who sent a lovely note and some Lourdes water from the Sacred Spring at the Grotto in France.






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