A Day in the Life of Madison

Thursday, May 26, 2011

We have had a busy past few days.  My dad was admitted to the hospital on Monday and was put in to ICU on Tuesday.  Mom and Dad were in Dallas last week and came home on Tuesday.  On Monday, he started feeling bad and by Tuesday, he was worse.  First thing Wednesday morning he went to the doctor as he was retaining fluids and we didn't know why.  By Wednesday, he had retained 21 pounds in fluid since the end of March.

They put dad on a diuretic to help him lose some of the fluid but it didn't help.  By Sunday, he had only lost 3 pounds.  He went to his doctor on Monday and they told him they needed to run some test but because they would need preauthorization from the insurance company, it would be faster for him to go through the emergency room. 

The emergency room did a CT scan to see if dad had an intestinal blockage which came back negative, but did show a spot on his liver.  The spot is about two and half inches long which they say is pretty big.  They need to do a needle biopsy on it but because dad is on plavix for his heart, they have to take dad off of it for five days before they can do it. 

Dad just had an echocardiogram done while we were in Birmingham.  That test didn't show anything abnormal.  Dr. Evans, dad's GI doctor, ordered another one to be done on Tuesday.  That echocardiogram showed a blood clot in the right side of dad's heart, which is the reason he is in ICU.  They now have him hooked up to a heparin drip to try to help dissolve the clot.  At first we were told that the clot could be a tumor but now they are leaning back towards a clot.  We just won't  know for sure until the heparin has time to work and they are able to do another echocardiogram. 

The plan is for dad to stay in ICU over the weekend.  The are going to do the needle biopsy on Friday and because of the long weekend, we will more than likely not get the results until Tuesday.  Depending on what the biopsy shows will depend on what is next.

We appreciate all your phone calls, emails and texts to check on dad, but most of all we appreciate all your prayers.  We as a family have laid all of our worries at the feet of God for we know that it is in his control.  Dad is being showered in prayers and we have definitely felt them.  We are so thankful for Dr. Evans and how he felt the need to order another echocardiogram because there was really no need for him to do so since he had just had one 3 weeks ago.  If he had not done that, the blood clot would not have been detected. 

Mom is doing good.  She is tired from being up at the hospital all day.  We are sending all the results as we get them to UAB to see if that is where we need to transfer to if surgery needs to be done.   It has been hard on Amy to be in Dallas and away from home.  Amy might come if dad has to have surgery.  As badly as I want to see the three of them I hope that is not the circumstance for the trip home.

Madison has been a trooper these past few days.  I have had to leave her with friends which I think has been harder on me than it has on her.  She and I have stayed up until about 11:00 these past few nights getting caught up on our snuggles.  Last night she said "I love you" for the very first time to me.  She has repeated it when I asked her to but she did it without me even telling her to.  Talk about tears of joy!!!!  I have waited three and half years to hear her say that and it just melted my heart. 

~ 1 Peter 5:6-7
"Humble yourselves therefore under the mighty hand of God, that he may exalt you in due time.  Casting all your care upon him for he careth for you."

I recorded this video last night as I was getting Madison ready for bed and putting her PJs on.  It was 10:15 at this point and Madison still had the giggles.  For some reason, she thinks it is HILARIOUS when you bump into something and say "ouch."  I hope this video puts a smile on your face!



video

Tuesday, May 17, 2011

Yes I know, it has been a long time since I posted, again!  I can't get over how long it has taken us to recover from this trip.  Madison slept longer for a good week.  Almost 15 hours each night and about a four and half hour night each day.  This week she is sleeping about 12 hours each night and about a two hour nap in the afternoons.  That is her normal routine.  I feel bad for my mom and dad.  Mom was in Dallas for Aubrey's birth and flew in the day before we left.  We got home on Thursday and mom and dad both flew back on Tuesday to help out with the new baby and they are flying back home tonight.  I know that they are drained but also know that they are enjoying every minute that they get to spend with their grandchildren.

We haven't had much exciting going on around the Riley house.  We had a wonderful Mother's day.  We got up and went to church that morning.  We have been visiting Hiland Park Baptist church for a few months now but we have been listening to the sermons at home most of the winter.  Shane and I both felt in our hearts that this was the place we needed to be.  We had been talking about joining but we just hadn't done it yet.  After the sermon on Mother's Day we both knew it was time and went up during the invitation and joined the church.  It couldn't have been a better Mother's Day.  Of course, I didn't have my camera on me for Mother's Day so I called the church and asked them if they could send me the picture that was taken after the service for new members.  This is the only picture I have from Mother's day but one that I will cherish.  Of course, Shane isn't smiling.  We all know how much he LOVES to have his picture taken!!  Notice the sarcasmm.


Madison is going through this stage right now where she loves to wear sunglasses.  I try to always put them on her when we go outside because her little eyes are so sensitive.  She will NOT wear her sunglasses.  She has to wear one of mine.  I am surprised but she will keep them on.  Well since I don't buy expensive sunglasses and just get mine at Target, her and I share sunglasses.  She cracks me up because when we are in the car, I will give her a pair of mine and put another one of my own and we are constantly trading.  I took these pictures of Madison just being silly putting two pair of sunglasses on at a time.  She was really cracking herself up.  I will try to get some new video of her this week and post on the blog as well. 



Wednesday, May 4, 2011

I am still smiling so big and praising the Lord for all of the good reports we have received this week.  All of Madison's big appointments just happened to be today and all of them were great!

Genetics were the first this morning and they were so pleased with how well Madison was doing.  I do believe they were in shock at how much she was talking and of course, Madison had to put on a show. 

Our second appointment was with cardiology and nothing has changed from the last visit.  He as well was please with Madison's overall health.

Our last appointment for the day was with pulmonary.  They were so happy that Madison didn't have any colds this winter.  We are still trying to decide if we should do another sleep study on Madison.  The doctors want to make sure that Madison's Co2 are not elevated and to check that, we still have to do another sleep study.  Of course, these are torture in my eyes for any child who has to go through one.  Shane and I just have decide if we want to put Madison through it.  Right now, she doesn't show any signs of those numbers being elevated but he wants to double check.  Please pray that we make the right decision for Madison.  If we do decide to do one, it will take place on her next six month check up. 

Dad had his check up today with cardiology as well and he also got a good report. 

We met another family tonight at the hotel who were victims of the tornado in Tuscaloosa.  The lived in Pleasant Ridge, which was one of the hardest hit areas.  She was home with all of her kids and two of their friends kids and they ALL survived.  Her husband called her 2 minutes before it hit and told them to look out the window because he had heard that it was heading their way.  As soon as they looked out the window they saw all kinds of debris flying in the air.  They went down to the lower level of their house and put a mattress on top of them.  They are still amazed that they made it through alive.  The mother was telling us that they live in a pretty popular neighbor in a culdesac.  Their house, along with one more in the culdesac where the only houses that were not leveled but they were the only ones on their street who made in through the storm. 

I sat their in shock with tears in my eyes listening to their stories.  This mom had 4 kids.  One is a senior, one is in 9th grade, 6th grade, and 3rd grade.  We listened to the 3 younger ones tell their story about the tornado.  These kids still have such a look of shock and disbelief all over their face.  As soon as they got through telling their story, I went and gave all the kids and their mom a hug.  I can't even imagine going through what they have gone through. 

We are actually leaving to come home first thing in the morning.  Shane's grandmother's funeral is at 2:00 tomorrow afternoon in Geneva, AL.  All we have is a dentist appointment so I am going to cancel that one and just take Madison to see our regular dentist on home.  We aren't going to make it back in time for the funeral but mom and I are going to go down to the tire store and help them out. 

Thank you for all the prayers that you lifted up this week for Madison for I know that is the real reason why we have gotten all the good reports.  I love and appreciate you all more than you will ever know.

Note- please excuse on the grammer mistakes and misspelled words.  Spell check isn't working for some reason and I don't have time to go back and reread what I wrote.  I just hope it all makes sense!  =)

Tuesday, May 3, 2011

Well today we saw the nutritionist and the orthopedic doctor.  We were pleased with both appointments.  The nutritionist wants Madison to get more fluids down during the day.  Right now we are averaging about 12 ounces a day and she wants us to work up to 20 ounces slowly.  Madison weighs 20 pounds and she made 24 her target weight to where she thinks she needs to be.  Of course, this isn't going to happen overnight and probably won't happen within the next year.  However, that is a long term goal that we are going to work towards. 

The orthopedic appointment went well also.  Right away they wanted to do xrays and I asked if we could see the doctor first and then decide if we need to do xrays.  When they xray Madison, it is so painful for her because of how they have to stretch her out and position her to get them done properly.  The doctor waited on them and then after examining Madison he decided not to put her through it.  Thank goodness!!  His resoning for that was if they did find something, would we really do surgery to fix it?  The answer is no.  Shane and I have been pretty adament that we will only put Madison under anesthesia if it is absolutely necessary.  He also said that he would recommend that we stop physical and occupational therapies.  These therapies have gotten painful for Madison and I have been working with Madison this winter while she stayed inside.  He said that we could just continue with that.

Overall another good day.  Tomorrow is our busy day with genetic, cardiology and pulmonary.  Normally I am a nervous wreck before our cardiology appointment but I have such a peace about all these appointments.  On Thursday all we have is a dentist appointment. 

Shane called me this afternoon and told me that his grandmother passed away this afternoon.  She was admitted to the hospital yesterday and they were told she probably would only live just a few days.  She had been in a nursing home in Bonifay for several years battling Alzheimer's disease and had stopped eating 3 days ago.  I am going to talk to our genetic doctor tomorrow and we might end up canceling the dentist appointment and head on home.  Just depends.  I personally think the dentisit appointment is a joke because Madison does not cooperate AT ALL!  All they do is a fluoride treatment. 

I am ready to be back in sunny and hot Panama City.  It has rained here all day and it is freezing!!!  Okay, I am exaggerating a little bit but it is in the low 50s and in the morning it is going to be in the low 40s!  I did not pack for cold weather.  I did pack Madison some long shirts and sweat pants but I didn't bring any jackets.  We had to make a run to Old Navy this afternoon to get Madison some warm clothes.  We will find any reason to go shopping!!

Monday, May 2, 2011

We made it to Birmingham last night around 5:00.  I was very worried about whether or not we were going to have a room due to the tornadoes in Tuscaloosa on Wednesday.  We were guaranteed a room because I had made reservations six months ago but because the hotel has a smoking floor and they were at capacity, they couldn't promise us that we wouldn't be on the smoking floor.  Since Madison is on oxygen that wouldn't work.  To make a long story short, we did get a room and we are NOT on the smoking floor!

We always get to know people at the hotel while we are here since we stay for several days at a time.  We have gotten to know several families who have made this hotel their home for the next 30 days.  We have also gotten to know a lot of volunteers who are here to help.  It is so heart warming to see how everyone has come together to help others out, strangers at that. 

After Madison's appointment this morning (which I will get to soon) we decided to take a ride to Tuscaloosa and see some of the damage.  We really didn't think we would get to see a lot since the police have closed off a lot of the area that was hit hard.  As we started approaching where the tornado hit we some a lot of trees and signs down.  When we got the area where the tornado hit we couldn't believe it.  We all got silent and just stared in shock.  I can't even put in to words how bad that damage is.  That tornado was so wide we couldn't even see where the end of it was.  We turned down a road and started taking the path of the tornado and I still just can't even explain it.  I did take some pictures but the pictures don't even do it justice.  I can't even imagine what these people went through on Wednesday night and what they are going through now. 

I took some of them with my cell phone so they are a little blurry.

Now back to Madison's appointment.  We saw a neurosurgeon today.  I knew when this appointment was scheduled by our genetic doctor that I should question why we were seeing a neurosurgeon and not a neurologist.  I knew today that I should have gone with my gut because today was pretty much a wasted appointment.  He didn't tell us anything that we didn't already know and he questioned as well why we were referred to him and not a neurologist.  I know now that I should always go with my gut and not second guess myself.  The good news is that he did go over discs from previous MRIs and examined her and didn't see any need for us to continue to see him.  We will see our genetic doctor on Wednesday and talk to her about it and see if there was a mistake made when they scheduled the appointment. 

Tomorrow we will be seeing the nutritionist and the orthopedic doctors.  Wednesday is our busy day with genetic, cardiology and pulmonary. 

Thank you for keeping Madison and our family in your prayers.  We appreciate you all more than you know.  Please keep all the people that were hit by the tornado in your prayers as well.  After hearing the news that Osama Bin Laden was killed last night and seeing so many people helping one another up here, it sure makes my proud to be an American!!

Hobby Lobby hit by tornado





The Tide truck helping people was their clothes.