WE ARE HOME!

And, guess who's already been up on his tippy toes?!?!?!


I guess that Motrin kicked in pretty fast! His meds were starting to wear off when we left the hospital, but he fell asleep on the way home. Our Walgreens does not carry the formula of oxycodone that was prescribed, so now we have to drive across town to have it filled. We will do it, of course. The doctor says that Ethan will likely be in more pain over the next week just out of soreness and his increasing activities.

You wouldn't know that he just had back surgery by looking at him though. He's all over the place already! I think he needed it though! He had SERIOUS cabin fever going on!

Good to be home! Thank you for being so good about praying for Ethan. We love you.

No other sign of infection

They say that the blood and protein is due to the "trauma" of having the foley. :( We just took the cath out about ten minutes ago and he is definitely happy about that! A sample was sent to the lab to culture, but because he doesn't have any fever and is otherwise acting fine, they feel it is just trauma. We'll see...(Thank you to all of you who responded before! Tom- thank Michel, RN for me!!!)

His IV will be coming off/out soon. The IV is blown. But, we don't have to re-stick him since we have graduated on to just plain motrin versus the IV stuff.

We may get to go home this afternoon. An order for the PT to come by and work with him has been put in. So, it really depends on how he does with that. I think he's going to do fine. He has been a champion this entire procedure process, so I do believe I may be in my own bed tonight!!!

HELP! Blood & Protein in Urine

I just noticed stuff floating in Ethan's cath tube. Prelim report says that it is blood and protein. The blood could be from having a foley in the first place, but what about the protein? They are going to run a culture. This is not anything we have ever dealt with before. Any answers/suggestions???

Someone's got the giggles!

Such a big boy!

Ethan helped push his own antibiotic a little while ago!!! AND, he said hi to the nurse in sign language on the first request. I do believe Ethan has grown up a bit this surgery experience!!!


Like this, Miss Bridget?


We also just had our visit with PJ, Kathy, and Daniel. Unfortunately, the boys were cranky and tired, so I didn't get any pictures. But, it was great to see them all!!! Thanks for stopping by!

Cabin Fever

Someone has it, and it's not me.

He's UP!

This is from last night. Finally, he slept. And, he slept well. He did start wanting to turn over in the middle of the night, so I knew that he was going to be wanting to sit up today. We had a good night- the only occurence was when he peed through his catheter (again), so the bed had to be changed. That was at 5am, and he went back to sleep after that until 10am! That was nice...

As soon as he woke up, he was UP. I have tried to get him to lay back down with the bed headrest raised a bit, but he wants to just be up. Can't say I blame him on that one. Dr. Fuchs came by and said that it's ok if he is up- preferably, he should start slow with the angled bed, but it's more of a guideline than a rule, kinda like the pirates "code". LOL!


Yeah, he probably shouldn't be bending like this!




He is such a good boy. I am SO proud of him!!!

Aw, presents!

Tonight, Ethan's teacher (Miss Mary) came to see us. She was so kind to go by my house and pick up my pillow to bring to me! THANK YOU!!! She also came with gifts for Boogs...a balloon, a card signed by three different classes (and Mrs. Darlene!), a Cars stuffed toy with fleece blanket and book, a lighted wand, a letter from Abby, and a ball.





We had a really nice visit. I really wanted for Firehouse Subs to deliver to the hospital- I mean, they are right down the street and you can order online, so I just figured they may deliver to the hospital- being so close and all. Alas, they don't deliver, so Jason's Deli it was.

Ethan enjoyed having Mary here too. It was so sweet of her to make the drive over here and deliver such wonderful things. Ethan is so loved at his school. The kids love him and the staff loves him. I even got an e-mail from his PT wanting to let us know that she is thinking of Ethan.

We are looking forward to seeing Kathy and PJ tomorrow! They will be at Duke for an appointment and plan on stopping by to say hello! Hopefully, we will both get sleep tonight so we are not zombies for the visit tomorrow! LOL!

Good night...

He is doing SO good!

I just want to thank everyone who has been praying for Ethan! They are definitely working! Ethan has had a WONDERFUL day. He has not tried to sit up once, and he even had a needle blood draw without major incidence. He did yell at the phlebotomist, but it was over before he could get too worked up. Such a big boy!!!


We bought some tubing to use as a straw while laying down. He has been doing really well with this too!


And thenk there is George. Ethan LOVES his Curious George.

Overnight fun

Yesterday may have been one of the longest days of my life. Scott left at 7pm and it felt like midnight. Ethan had some definite times of pain and the fentanyl wears off after an hour and he can't have another dose for 4 hours. Then, he could have the oxycodone every 3 hours, but it takes longer to take effect. It took over 2 hours the first dose. Poor baby was miserable.

I have to brag about how smart my boy is, though. He was crying and crying, then pulls back his blankets. He is nekkid, so I tried to get him to at least keep a sheet and he just kept taking the sheet off to expose himself. Well, lo and behold- his catheter was pulling. YOUCH!!! After we fixed that, he calmed down more.

We went through a period where he kept trying to sit up and then screaming in pain. I really thought that I was in for a very long night. I guess it kicked in to him that when he tries to sit up, it really hurts, so I really haven't had that issue with him since yesterday.

He had to have a new IV put in around 4am. For some reason, his IV had kinked off so the line occluded. The nurse tried and tried to keep the IV, but one swift move from the Boog's and it was a gone'r. I have to say, he was awesome during the next IV stick. I had them put it in his foot so he didn't want to pull at it on his hand. There was a moment there that we thought that the new IV would also have to be replaced, but thankfully (again) our nurse- Lisa- had a great deal of patience and made it work.

We have both gotten a smidge of sleep. I have a headache. Thank goodness I bought that excedrin the other day! Ethan is in a great mood- giggling, chewin' on his chewy, and playing with Curious George.

Ethan's teacher, Mary, will be coming today afterschool. She may be able to bring Ethan's friend, Abby, but not sure yet. Today, should be uneventful as long as Mr. Man doesn't get a wild hair to try and sit up.

Oh, and to everyone who is asking how he is eating while laying down???
Very carefully and slowly

Hello, my name is Mama Bear...

Oh my gosh. I am about ready to drop kick someone. So, we get back to the PACU to finally see Ethan post-op and the first thing the nurse says is, "He's already sat up on me." Oh.My.Freakin'.Gosh. Are you kidding me!?!?!?!?!? (bleepity bleep bleep bleep) Ok, keep your cool Kristen...

When he started waking up, he was such a good boy and stayed flat. The first thing he did was sign for 'hungry'. Poor baby hadn't eaten since last night. And, it was close to 1pm by then.

We got up to our room. Now, I was told that the rooms here at Duke were small, but holy smokes! I think I am getting claustrophobic in here! See for yourself...




It is now 2:30pm and we are just now being able to get Ethan some applesauce. He was very agitated a little bit ago, so we got him some pain meds that calmed him down (fentanyl). He also has some oxycodone on order, but he hasn't been given another dose of that yet.

(One applesauce down and crying for more...)

I am really trying to like our nurse. She seems a bit ditzy. Everytime I ask her a question, I get a blank stare. But, she did just bring us the applesauce and apple juice, so I will give her good props for that. All I can say right now, though, is that if our night nurse sucks, I do believe armageddon could be in the iminent future.

He's out

10:45 am SUCCESS!!!

Dr. Fuchs just came out to give us the report. He did very well. Ok, now let's see if I can remember this right...

He had to shave a bit of bone off of the L5 and S1 in order to get to where he needed to be. The filum was "extremely thick". The MRI said about 4mm, but it ended up being more towards 8mm!!! There is NO doubt in Dr. Fuchs' mind that he needed the surgery. The filum sprung after it was cut. It was so tight.

Thank you, thank you, thank you for all of your prayers!!! Please continue as now the hard part starts with keeping Ethan flat for two days.

In Surgery

I just left Ethan behind in the OR. I was with him until he was asleep- my eyes were the last thing he saw before drifting off into la la land. In true Ethan form, he repeatedly pulled at any sticker placed on him, and kicked, grabbed and wiggled away from the doctors and nurses. And, since Mommy looked like one of "them", I wasn't much help in keeping him still.


Ethan trying out the surgical cap


And, the surgical mask


Even though we are at Duke, Ethan needs to be "representin'" Wake Forest for the #1 Soccer Team!!! The mark at the bottom is where the incision will be, and for those of you who didn't believe me when I told you that Ethan had more hair on his back than the average adult male...here you go.


Hangin' out with my chewy and George before heading out


Ethan with Momma in her "bunny suit" before heading to the OR (Don't be hatin'- you know you want one!)

(9:36am OR update. Surgery has officially begun)

Dr. Fuch's is very optimistic and can't wait to see Ethan's progress post-op!

While in the waiting room earlier, I saw a mom come in with a tiny little baby girl. I only saw a glimpse of the baby, but I just had a feeling that she had Down syndrome. So, I did it. I became the Ds stalker. I went up and talked to the family and sure enough, little Maggie is blessed with that extra chromosome just like Ethan. Maggie Belle is 9 weeks old today and she is currently having her heart fixed. I know that I am asking you to pour your prayers into Ethan, but I would love for your overflow to go to little Maggie. Thanks.

More updates to come...



theDailyBibleVerse.org

Ethan's Button

My friend, Meredith, created the html code for Ethan's button. She has posted it on her blog, but I don't know how to repost it to my blog without it just showing the button and I am too tired to figure it out right now. LOL! Thanks Meredith!!!

Click Here to link to Meredith's post where you can grab the button code. And, you can look at her gorgeous babies while you're at it. ;-)

Surgery scheduled

We have to have Ethan checked in for surgery by 7 am which is good since he will have to go without food/drink after midnight. Today went well. He was a little disoriented just because he was out of his routine of going to school and stuff. We had a great tour/explanation about everything from the child life department. And, I have told everyone and anyone that Ethan will need extra help staying flat post-op. We'll see how that all falls into place.

We are staying at the
Millenium Hotel. It's very nice and comfortable. Ethan and Scott just woke up from a nap and we are getting ready to go meet up with one of Scott's friends from high school who lives in Raleigh. I think that's pretty cool to have a familiar face so close.

The Ronald McDonald House called as we were checking into the hotel, just to tell me that they now have a room for us. How's that for timing? If we were paying full price for this room, I probably would have jumped on the opportunity with RMcH, but we are only paying about $20, so we're good.

That's all for tonight, I believe. Thanks everyone for praying for my baby. *muah*

Pre-op today

We are getting ready to head on over to Duke this morning for pre-op. We still don't know where we are staying tonight, but what I do know is that I need for all of you to:


(Thanks to Renee Garcia for the graphic!)

I don't know how to do html codes and jazz, so I don't know how to make it a button for you to grab and link to your blog. If you do, feel free and just post the code in the comment section so I can grab it and post it. Thanks.





theDailyBibleVerse.org

Ethan and his love for Curious George

Make an on-line slide show at www.OneTrueMedia.com

I can watch this over and over, but the real deal is towards the end- the last two minutes, about. Enjoy. LOL!!!

Endo results

So, I got a hand-written note in the mail on Saturday from Ethan's endocrinologist. It said to call him at my convenience. The doctor hand wrote a note. I had never had a doctor do that before!

I called him today and I got his voicemail. It was actually his voicemail and not the secretary's. He called me back within the hour and gave me the news.

All thyroid/kidney/blah, blah, blah levels are normal. (another normal result! WOW!) Growth hormone levels are low. So, it is highly possible that Ethan is also growth hormone deficient.

We will wait and see how Ethan's growth changes over the next six months post cord release and then chat again in May. I already told him that if it will not affect Ethan's health, I am not that interested in treatment. It requires daily injections of the hormone and a whole lotta understanding from insurance. And, I am guessing that since Medicaid wants to cut Ethan off from OT, I don't think that they will be approving the $15k annual charge for the treatment. The treament will only help him be taller. I am fine with Ethan just being small.

My friend, Kimberly, and I were talking about how it would be interesting to know how many kids with Ds have low GH levels since the majority seems to be shorter in stature. I just don't know how often the test is ran in people with Ds unless there is a specific request. I am thinking that doctors would tend to just not do the test since it is assumed that people with Down syndrome are typically shorter. Deep thought...

Wazungu!!!

Yesterday afternoon, Ethan, Scott and I headed over to Stephanie's for a Kenyan reunion. Stephanie has a beautiful home with plenty of room for all of the wazungu to mingle. Big thanks to Stephanie and Alan for being such awesome hosts! Alan made awesome ribs- yum, yum!!! It was so great to be together with all of the group again, minus Stan. Poor Stan was not feeling well and couldn't make it. More surprising was Mark's ability to make the party!!! (He lives in Florida).


John & Mark


You have something on your chin there, brother.


BUNNY EARS!!!


Jamey, Joe, and Mark


Wait a minute...Mark got very shiny! I should get him some oil picker upper papers! (*ONE CAMERA, and that would be Fred...*)


My new daughter, Alisha and Me


Mama Nancy, Caroline, and John getting their grub!


Amy's so serious with Joe!


Rut ro...John has a Mark growing out of his head!!!

We had such a great time. Seriously, we missed Stan and Mark so much! But, Mark will be home to visit the week after Thanksgiving and we are hoping to spend some time with him, Chere, and David!

BIG THANKS to Stephanie (again) for lending me her laptop for when Ethan goes in for surgery on Wednesday! I should be able to update regularly if the internet works like it should! THANK YOU SO MUCH!!!

Urodynamics

Yesterday morning, Ethan and I made the drive over to Duke. It was rainy but, surprisingly, people actually drove like good drivers. Oh, except that one darn Toyota Camry who almost plowed into my right side while merging onto the highway full speed ahead. Jerk. Anyway...

We got to the hospital on time and even a little early, but you have to go down an elevator from the parking deck, walk a tunnel walkway that is so long that it has a "you are here" dot to mark your progress of how close you are to civilization again, then up an elevator to the first floor, walk through a walkway in order to get to the Children's Center, then go up the elevator to the third floor. So, we ended up being 5-10 minutes late.

First, I went over Ethan's history with the NP. She explained the test that was going to be done. They would be able to see how much urine his bladder holds and if his pressures are good. This would, of course, involve inserting a catheter.

Because they didn't know Ethan or how he would react during the test, they had Ninna- the Child Life Social Worker (AWESOME!!!), come in and play around so we could figure what would keep Ethan the most calm. I love this woman already. I think that I may send her a Christmas card. LOL!

Time for the test. Catheter-ugh. Ok, it really wasn't that bad. Yes, he yelled. Yes, it was uncomfortable for him. But, she was awesome and got it in without any trouble really. Plus, they had put lidocaine gel on him to in hopes of easing some of the discomfort. I thought that was nice. During this process, we noticed that Ethan has a mild "double barrell", or hypospadias. Again, it is mild and does not need surgical intervention.

Once the cath was in, they started filling his bladder while an x-ray was aimed at his bladder taking pictures. I thought that Ethan would be screaming the whole time. Nope. He watched tv and was overall a good (big) boy. Now, when the bladder was full, full, he cried in pain. That was tough. Then it took forever to actually empty his bladder.

Ok, so all of that to know what? He has a normal bladder. Pressures are good and he empties properly without any reflux back into the kidneys. What isn't so normal is the size of his bladder. It held over 10 ounces of fluid...about what an 8 year old would hold. Ok, so Ethan is 7 so that shouldn't be a big deal, right? Not if Ethan were the size of a typical 7 year old. He is only the size of a typical 4 year old, so his bladder is twice the size for his size. This too, is not a big deal as long as he continues to empty properly.

Lastly, the urologist ordered a renal ultrasound just to make sure that his kidneys are in good shape pre-surgery. This way we have a baseline study of what his kidneys are like before his release on Wednesday. Dr. Wiener (yes, still laughing about that one) was very nice and very efficient. And, he would say "a child with Down syndrome" versus what doctors normally say..."a Downs child". I appreciated that. See, little things like that go a long way with me.

I don't know the results of the u/s yet. I will probably be able to pick up a report on Tuesday.

In true Faulkner Fashion, someone dropped the ball on our Ronald McDonald House paperwork. RMcH has no idea that we are coming, we are not in the system, the paperwork is lost, and the house is full. Great. Ms. Ninna did NOT find this acceptable at all, so she contacted another social worker who is working on getting us a hospital rate at a local hotel. So we may be able to stay at the Hilton or Marriott for $20. Not too shabby. We may stay at Hotel 6 for $20. Either way, it will beat having to drive home on Tuesday after pre-op just to return Wednesday.

That's all folks. :)