Tuesday, January 26, 2010

The nurses almost panicked...

On Wednesday of last week, I took Ryan to the peds office to get her physial. Everything checked out just fine and she has actually grown a half an inch in a month. WOO-HOO!!! She is now 34.5 inches tall!! Almost to that 3 feet mark. The doctor said Ryan is growing nicely and she was cleared for her surgery on Friday. As I said before, we were not concerned about the ear tubes going on, we were worried about her having trouble with the gas again that would be used to sedate her.

at the peds office for physical

We got to the hospital at 10:15 on Friday morning and Ryan was already nervous. All she has to do is see the hospital in her view and the whining begins. Once we got upstairs to same day surgery, child life came by and gave Ryan some toys to play with, and also gave her a baby doll. Ryan refused to put her gown on so we got an extra one to put on her baby....it didn't help. She still wanted nothing to do with it. We also had an extra mask from the gas machine in the room and I kept putting it up to my face to make her realize there was nothing to be afraid of. That too, didn't help. The nurses asked us several questions just to make sure they had all of Ryan's medical history. I told the nurses and the doc about her having trouble coming out of the sedation with gas when she had her cardiac cath done last year. They appreciated the warning!!! Although Ryan's surgery wasn't scheduled until 11:45, they were able to get her back about a half hour early....YAY!!

the nurses were blowing bubbles to try to make her happy...this actually worked

We decided after a lot of consideration that we would go back with Ryan while she was put to sleep. I have been warned not do this in the past, but I thought it would probably be more comfortable for her. I really think she remembered having her balloon done because as soon as the OR doors opened, and she saw the medical team, the meltdown began. They closed the doors to make her feel better and she wasn't able to see them anymore. We were in a VERY small room where she was put to sleep. I held her in my lap while they held the mask on her face....not fun. I felt so bad because she just stared at me the whole time. The nurses warned me about how her breathing would change once she was asleep.....but OH LORD...it was SO SCARY!!! She honestly sounded like she was struggling to breathe. I knew she was ok, but it sounded pretty bad.

asleep on the bed, ready for surgery

We walked back to the waiting room, and it really was only about 15 minutes that went by until we got called back into a meeting room. Dr. Myer said surgery was done, and that they were waking Ryan up and we could go back to the PACU (post anesthesia care unit) in about 5 minutes. Well, we found it pretty odd that 30 minutes went by and the EPIC sreen in the waiting area, said that Ryan was still in the OR. We finally got called into PACU and asked what took so long. The nurse told me that if I hadn't warned her about Ryan having trouble with gas, they would have PANICKED. It took them 30 minutes to wake her up, after she was only under for 15 minutes?? The nurse seemed concerned, but once she was awake, she was acting pretty good. She wanted to eat and drink and walk. She got down and walked with me holding her hand and was doing really well. Everyone was very impressed at how well she was doing after it took so long to wake up. We went over the discharge instructions and we got to leave about an hour after she woke up. THANK GOD, because she was getting CRANKY!!! The affects of the gas were not bad the rest of the day....it all went pretty smoothly. So, the tubes are in, she is now done with her ear drops that she needed, and we are good to go. Dr. Myer did have to suck a pretty decent amount of infected fluid out of both ears first, but at least it's all out now. He said he is surprised with how bad her ears were that she was able to hear anything. She is scheduled to go back to see him on February 22nd for a post-op follow up.

back to normal once again!!

On to some Q&A:

I have received some emails with some questions....I will not say who they are from because if they wanted everyone to know, they probably would have posted them on the comment section of the blog instead of sending a private email.

1. Since you live in KY, has Ryan ever been taken to St. Jude Children's Hospital?

The answer to this is NO. Memphis, TN is not exactly right around the corner. We live 10 miles south of Cincinnati, OH. So, we are located in the VERY northern tip of Kentucky, not from the south. The other reason is, St. Jude's focuses more on pediatric cancer. I'm not sure if they have a cardiac unit or not. I have never looked into it. We are very confident in the doctors that she has at Cincinnati Children's.

2. Do you know how lucky you are to have a heart kid that likes to eat?

YES YES YES!!!! As most of you know, a lot of heart babies have a problem getting enough calories. Ryan has PLENTY!! In fact, she was always off the charts for her weight until she was a year old. At that point, she was still in 95th percentile. Now, she is in the 80th percentile. She doesn't eat near as much now as she did when she was a baby. When she was a baby, she wanted that bottle and baby food ALL the TIME!!! We didn't let her have it whenever she wanted, but she was VERY CHUNKY!!!

Ryan at 5 months old...check out the arm rolls

3. Did Ryan have any symptoms of heart disease when she was born?
Ryan was born with a blueness to her lips and nail beds, however, when we asked the nurses and docs about it at the hospital, they told us that because her head was in the birth canal for so long and I had such a long labor (17 hours) and Ryan was taken via c-section, she could have had a lack in oxygen. We didn't question it anymore because by that night, it was gone. It may have been cyanosis, but there is no way to know for sure now. We are just thankful that the doctor's found out about Ryan's heart when they did.
4. How old was Ryan when she was diagnosed?
Ryan was diagnosed at just under 1 month with her CHD.
5. Do I think I will have more kids and if so, are they at risk for CHD?
I will probably not have any more children. I would like to have a boy one day, but I'm not sure that will happen. CHD's are not genetic as far as we know, so another child would probably not be at higher risk for heart disease, however if I did have another baby, I would get tests done while pregnant to find out if the baby was ok.....I would rather know ahead of time, then get another surprise diagnoses.
That is all the Q&A that I have for now, but feel free to ask more!! I have no problem at all answering any questions about Ryan. Thank you for all the support once again for Ryan!! It is very much appreciated!! We are so blessed to have so many people in our lives that care so much!!! I have a pretty busy weekend ahead of me so I'm not sure when I will post again, but I hope everyone has a great week!!

Friday, January 22, 2010

Surgery Day and Q&A

We will be leaving in about an hour to head over to the hospital for Ryan's ear surgery. I will keep everyone posted later today on how things went. Hopefully, she will be able to sleep when we get home. Also, I have been getting more emails with questions about Ryan and a few other things so I will post some Q&A as well. I hope everyone has a good day!! Wish us luck and please pray that Ryan wakes up from the gas with no problems unlike last time. That was scary!!! Thanks for all the support.

Wednesday, January 20, 2010

You obviously don't know Ryan

Yesterday morning we left the house at about 9:00 am to make the 20-30 minutes trip up to Ohio to visit the ear, nose and throat specialist, Dr. Charles Myer. Once we got to Children's, Ryan had a feeling something bad was going to happen. Don't you hate that?? These kids just see a hospital or doctor's office and know something is up and they know they don't like it. We walked over to the C building and got on the elevator and went to the 2nd floor. Cardiology is on the 4th floor so it was a nice break to hit the "2" button on the elevator wall. Ryan was being very friendly to everyone on the elevator, as usual. She said Hi to everyone and then talked about the doctor that was going to "get my ears." HAHA. She hears what she wants to hear, because I told her the doctor was just going to look in them....not get them. :)

Once we got to Otalaryngology, the wait wasn't that bad but Ryan got nervous when her name was called. The nurse said she would give Ryan a sticker if she walked back like a big girl....so Ryan started running really fast to get to them. Once in the back, the nurse asked me several questions about Ryan....you know, the normal routine things. Dr. Myer came in and said he needed to LOOK in Ryan's ears. He also asked me a few questions, and then came the time to hold her down. She FLIPS OUT anytime anybody tries to look in her ears so I knew it was coming. I sat in the chair with Ryan in my lap facing away from me. I had to literally wrap my legs around hers, and then bear hug her from behind to hold her arms down. Dr. Myer held her head to look in her ears, and with all of that, Ryan still wiggled free!!! She's SO STRONG!!! It really amazes me how physically strong she is. Once we were done with wrestling the beast, the doctor told me what the deal is with Ry.

showing her HUGE muscles!!

Dr. Myer filled me in that Ryan's ears are both severly infected. His exact words to me were "after 35 days of 4 different medications, I cannot believe how bad her ears look." GREAT.....so what can we do about it?!?!?! When she had her last infection like this back in May, he said all of the fluid probably didn't clear up completely. Meaning, she has most likely had a minor infection in both ears for almost a year. He said he's surprised she can hear anything that anybody tells her. OH NO!!! At this point, I was highly concerned about the future of her hearing. Dr. Myer assured me that he feels very strongly that she will have no long term damage to her hearing. We will not know for sure until she gets another hearing test, which will not be until after her tubes are placed, and then fall out, which can be around 6-12 months. Ryan's peds office typically refer's patients that need tubes to the Head and Neck Associates in Ky, but with Ryan's heart issues, I always feel more comfortable if she is seen at the hospital because they have her records and know everything going on with her. Dr. Myer told me I made the best decision with that, because the Head and Neck Associates wouldn't have touched her due to her "cardiac status." POINT FOR MOMMY!!! haha. I know that when she is at the hospital, she is in good hands. I really do trust all of their staff. They are all amazing people.

Surgery info is as follows. Ryan is scheduled for the surgery this Friday at 4:30 pm. We have to arrive at CCHMC at 3:00 pm. I'm sure most of you know the food/drink regulations that go with anesthesia. NOTHING to eat or drink AT ALL for 4 hours prior to surgery, and for the 4 hours before that, ONLY clear liquids. She can have jell-o, applesauce and popsicles. Those are the only semi-solid foods. I didn't really have a choice as far as surgery date and time. It was either take the appointment this Friday at 4:30 or wait a month....which the doctor STRONGLY advised NOT to do. The nurses and Dr. Myer both assured me that Ryan would be fine, just let her eat as much of those things as she wants so she gets nice and full since she will have to go 4 hours without anything. Really?? You think she'll be fine?? YOU OBVIOUSLY DON'T KNOW RYAN!!! :) Ryan is the queen of eating. SERIOUSLY. She really doesn't eat near as much as she used to, but for her to not eat or drink for 4 hours is going to be TERRIBLE. I'm hoping I can get her to take a nice long nap so at least we will have some time where she won't care about her throat being dry or tummy being empty. UGH!!! The procedure itself, only takes about 15-20 minutes. Before they make the incisions in her ear drums, they are going to vacuum out the infected fluid that has been taking up residence in Ryan's ears for so long. Once that is done, surgery will begin. After she wakes up, we will remain at the hospital for about another hour or so. When Ryan was given the "gas" for her cardiac cath, she had a hard time waking up from the anesthesia and they said it will probably be the same this time around. She is not given the "gas" for her echo's, that is something different. Her discharge time from the hospital really depends on how well she wakes up. We will be there until at least 6 pm. It's going to be a L-O-N-G day!!

UPDATE: I just received 2 calls within 20 minutes of eachother from the hospital. Both to tell me that there have been cancellations on the surgery schedule. Ryan's surgery has now been pushed up to 11:45 am!!!! This is amazing news. Now, she will not have to wait as long to eat or drink which is great for all of us. Maybe they will call me tomorrow to make it even earlier!! HA.

Such a beautiful princess!!! (don't mind the messy hair :)

I have an idea that I would like everyone to do. We always are telling the stories of our kids being at the hospital, so I'm curious to know what your child's hospital looks like. I was not able to find an actual photo of the entire hospital online that we have here, but I found sort of a blue print photo. I will try to remember to take a picture Friday. The picture below is an overview of Cincinnati Children's Hospital Medical Center (CCHMC) or as us "locals" say....."Children's Hospital."

Our hospital is divided into concourses. Sort of like an airport. The main concourses where the different divisions are, are labeled as A, B, C, and D. Ryan's consultation yesterday was on C2 (concourse C, 2nd floor.) Her surgery will be on B3. Cardiology clinic is on C4 but her cardiac cath was done on A4. It can be a bit confusing, but once your there all the time like us, you get it down pretty quick. On your next update, include a picture of your hospital. I'm interested in seeing how different they look since we all live in such different areas. Next time, I will also try to include some pics of our town. Do the same, that way we can see the area where eachother lives.

Please say prayers for Ryan's surgery on Friday. Although it's nothing major, it is always a concern when she is sedated, especially with gas. Also, continue to pray for Logan Jacks and Derrick Carter. Thanks for all the support!!!

Logan's page: www.whenlifehandsyouabrokenheart.blogspot.com

Derrick's page: www.carolinacarters.blogspot.com

Monday, January 18, 2010

This is getting ridiculous...

I'm sure many of you are probably wondering what it is that I feel is so RIDICULOUS. I promise I will get to that but first, prayers are needed.

Logan Jack's received another open heart surgery on Thursday and is still recovering in the hospital. The doctors see now that he has an effusion (thanks to his parents paying close attention to Logan's symptoms!! GREAT JOB STEF AND RYAN!!!) This may extend Logan's hospital stay to an extra 3-4 days. Please pray that he gets better and also say some prayers that his big brother Wyatt is doing well in school despite the constant worries of his little brother. They have a special bond with eachother so I'm sure he's very concerned. My thoughts and prayers are with you Stef, Ryan, Wyatt and Logan....get better soon!!! If you would like to stop by Logan's blog page to give them some words of encouragement, or just to let them know you're thinking about them, the site is www.whenlifehandsyouabrokenheart.blogspot.com

Derrick Carter is also having surgery, but his is today. Derrick is a very special little guy and he's ADORABLE as well!!! We are sending our thoughts and prayers to you all as well and hoping that D's surgery is a success and that he recovers quickly!! To visit Derrick's page, please go to www.carolinacarters.blogspot.com and leave them a message. Good Luck baby D and we are thinking about you today!!!

So, onto this ridiculousness I was speaking off earlier......Ryan is sick AGAIN!!! I'm so irritated about this whole situation I feel like ripping my hair out. She was on 4 different meds for a grand total of 35 days. Once on each med for about 3 days, she seemed great. No more cough or runny nose or anything. Her last medication ended just 2 days ago, and last night, the runny nose started. She woke up this morning with the runny nose continuing and she is having trouble breathing. I am not going to bother taking her back to the peds office just yet because she is scheduled with the ear, nose and throat specialist tomorrow morning up at the hospital. I am hoping and praying that he will schedule her to have tubes put in her ears so I can stop having to take her to the peds and we can keep her off the antibiotics. This is her 2nd ear infection since May but both of them lasted a month or more. The last one caused her to be on meds for 30 days, and this one, 35 days. I hope the doctor makes the right decision. I will keep everyone posted as to if/when Ryan will be scheduled for surgery. Thanks for the support!!! It's time to watch "Happy Feet" again, so I gotta run!!! :)

Sunday, January 10, 2010

The missing pictures!!!

I'm excited to say that my brother is here visiting!!!  He flew home from Pheonix on Friday and is staying until Thursday.  He is leaving for basic training for the Army on February 1st so its great to spend time with him before he goes.  I'm on his laptop now in order to load a few pics from Ryan's birthday and from Christmas so everyone can see the fun.  My brothers name is Robert but goes by Bob and Ryan calls him Uncle SpongeBob.  HAHA.  So, thanks to Uncle SpongeBob, we get to share pictures.  I will try to update again asap but not sure when that will be.  Just real quick though, Ryan is now on her 4th antibiotic so once she's done with it on the 16th, that will total 35 days of meds for her ear infections.  POOR GIRL!!!  I will try to update before her appointment at the hospital with the ear, nose, and throat doc but don't know if I will be able to.   So, here are the pics....ENJOY!!

My dad, Joe, my brother, me and Ryan

Happy Birthday Ryan!!!

first time sledding...with daddy.


loving the snow


new hoodie for Christmas.

wow.....a Dora kareoke machine!!  Thanks Grandpa!!!

feeding her baby in the baby's new high chair!!  Santa sure knows what to do!!!

look at all this stuff

Bubba and Sissy

listening to her baby's heart...so precious but sad that she knew just what to do.

opening more presents.

Dora and Boots cupcakes!! 

getting ready to blow out the candle.....so much fun!!

cutest thing ever.....this dog says her name and all the things she likes!!!

sorry the pics are so scattered as far as their order.  I am trying to get this done to spend more time with my brother!!!  Hope you liked them!!  There was, of course many more photos taken, but it would have taken DAYS to put them all on here.  Until next time....I hope all of our followers are doing well.....and I promise I will get caught up soon with everyone else's blogs...I KNOW I'M A SLACKER!!!!  SORRY!!!

Monday, January 4, 2010

Celebrations and a major tragedy

Ok so I admit....it's been WAY TO LONG!! Our computer bit the BIG one and wasn't working. I am on it now, but am not able to get my pics on it. So, unfortunately I am not able to share any of Ryan's birthday photos, or pics from Christmas. I hope everyone had a VERY MERRY CHRISTMAS and a WONDERFUL NEW YEAR!!!
Ryan's birthday parties went great! Her favorite gift BY FAR is the Dora the Explorer backpack she received from my aunt, as well as the tea set she got from my dad (her pee-paw as she calls him.) She says that the tea cups are for FOFFEE (coffee) She is too funny. She also got a lot of clothes which were very much needed. A week before Ryan's party I had taken her to the doctor and she was diagnosed with a left ear infection and that's when she was put on Augmentin for 10 days. On the 14th, I took her back for her 2 year check up. A resident came in to do the exam and said her ear looked better. Once her meds were done, she got worse. She had a nasty cough and her nose wouldn't stop running. I took her back again and the doctor looked in her left ear and told me the resident was wrong. It was worse. Ryan was then put on Omnicef for 10 days. The ped was SURE it would take care of it this time. This past Wednesday, we were back AGAIN!!! They had told me to bring her back on January 21st to see if the infection was gone from the second meds. I'm glad I followed my intuition and didn't wait. When a different ped looked in her ears on Wed. she noticed that now BOTH ears were filled with a bunch of yucky fluid. I knew something was up because her cough and runny nose just wouldn't get better. So, after 20 days of 2 different medications, her ears were worse. This same thing happened to her back in May, where she was on 3 different meds and it finally went away. Therefore, the peds sent a referral up to the hospital. Ryan now has an appointment there on January 19th to see Dr. Myer who is an ear, nose, and throat specialist. I was really looking forward to not being back at the hospital until June, but that's just not going to happen.
Before I get to the tragedy that took place here, I will just quickly say that Christmas and New Year were great for us. We loved spending time with our family and feel so blessed to have them in our lives. Especially after what occurred just before Christmas.

When Josh played baseball last year, he played for a team called "Hustle." His assistant coach's name was Tony Campbell. He had been Josh's assistant coach for 3 years and his step son Devin played for the same team. Tony's wife, Emily, and myself were pregnant at the same time. She gave birth to their son, Ryker, on December 1, 2007. On Sunday, the 13th (Ryan's birthday) Ryker had a party for his birthday as well. The only thing missing, was his dad, Tony. Tony was deployed to Afghanistan in September while serving in the Armed Forces. On Monday, the 14th, Tony called home to speak to his family, and Ryker surprised him by counting to 10 on the phone, and he then said "I love you Daddy." Emily, Devin, Ryker and Jordan (Tony's 7 year old daughter by a previous marriage) had no idea that would be the last time they would talk to him. Sadly, early Tuesday morning, December 15th, Tony was killed while serving our country. His job overseas was to disarm roadside bombs. There was one that detonated and he was nearby. He was only 35 years old. On Tuesday, December 22nd, Tony was laid to rest in Williamstown, Ky at the veterans cemetary. He was also a Cincinnati Police Officer which was his dream job that he had fulfilled just last year. Even though you may not know them, please just say a prayer for his entire family. They are all wonderful people. Emily will now be raising the 3 kids without her best friend and Husband. Although she has many close friends and family and we are doing everything we can to help, it is nothing like having your life partner there with you. Tony will surely be missed and he was a very brave man. Once again, I remind you....never take anything for granted. Life is too short to sweat the small stuff. Live your life to it's fullest. It was amazing to see the amount of people that showed up to the funeral to show their support. Service men and woman lined the church to pay their respects, along with police officer's from all over. It was amazing to see and nobody deserved it more. He fought hard for this country and after his death, Emily received Tony's awards of The purple heart, a combat star and a medal of honor.

Please take a moment to remember all of our fallen soldiers, and those who are still fighting for us all.

One of the newest soldiers to join the U.S. Army is my brother. He is beginning his basic training on February 2nd at Ft. Benning in GA. He is flying home to see us (from Arizona) this Friday. I cannot wait to see him!! He has not seen Ryan in person Since August of 2008. I will try to post again soon and have pictures of everything going on lately. ENJOY YOUR WEEK!!