Alex and Maddy

Alex and Maddy

Sunday, December 17, 2017

The Things I See

I look around and could see hospital walls, but I see a room decorated by friends.
I look around and could see a sick little boy, but I see strength and bravery matched by few.
I look around and could see strangers, but I see Doctors and Nurses who love my son.
I look around and could see a hospital, but I see a place filled with hope and love.

The past month and really much of the past years have not gone how I envisioned my life going, but I see so much love and generosity, and goodness all around me. I see so much to be grateful for. I decided to livestream church this morning. When the band started to play the first song, I realized it was a song that means so much to me. It is a song that speaks to me. It makes me think of Alex and his story:
Life is short, I wanna live it well
One life, one story to tell
Life is short I wanna live it well
And you're the one I'm living for
Awaken all my soul
Every breath you take is a miracle
Life is short; I wanna live it well

I got one life and one love
I got one voice and maybe that's enough
Cause with one heartbeat and two hands to give I
I got one shot and one life to live

So it brought tears to my eyes as I heard a little voice singing from the bed this morning along with Sean and the praise band. My son is such a miracle and so able to see things in the right way. He always thinks of others. In the middle of the night as he was awake with horrific pain, he said "Mom, I'm sorry you may have to spend Christmas in the Hospital because of me." I assured him Christmas was about us being together and not where we are. It gave us both a good chuckle this morning when Pastor Chris started his sermon talking about Christmas not taking place in the place you expect.

The praise band finished the service with the song See the Love. I see the love. I see it in hospital staff, I see it in meals delivered, I see it in visits from friends, I see it in generous gifts, I see it in calls and texts and messages. I see it all around me and I am so grateful!

Ali

Oops- I almost forgot the medical update...Things are pretty much the same. Last night Alex was in a ton of pain. We through every med we could at him and he was still sitting at a pain level of 7. We finally drained his Jtube this morning and he drained over a liter of fluids in the first 3 hours. He is continuing to lose fluids at an alarming rate. We are replacing the fluids for now. His GI system is just completely shut down. We have changed all possible meds to IV to alleviate as much going in as possible. We are also watching a spot near his incision that appears to be draining pus. There is concern that could be a small abscess. We are checking labs this afternoon and an xray in the morning to help us assess where we are and come up with our next plan.

Saturday, December 16, 2017

Saturday Update on Alex

I have been waiting all day to update because I wanted to be sure we saw everyone and had a plan before I updated.  Alex has had a better day from a pain standpoint. He is still on some hefty pain meds quite frequently, but at least he is more comfortable.

From an infection standpoint, he is on 3 strong antibiotics and has not had fevers so things are status quo there. As far as endocrine we have tried lowering his dose of steroids and he doesn't feel fabulous, but not horrible so we are going to try and stick with it.

Things look okay from surgery. He has one small area with some possible pus so we are watching that closely.

Our biggest issue is from GI. Hi GI motility has completely stopped. Dr. O came in and we have switched some meds to IV and added two new meds to try and get things moving. Right now everything is backing up and dumping out his Gtube. We can not attempt any feeds until we get things moving in the right direction. The meds we started are supposed to help the stomach. Once he stops dumping so much we will start a different medication to help his intestines. Unfortunately, Dr. Osuntokun was not optimistic about us making it home for Christmas.

Please pray for Alex's gut to wake up and for his pain level to decrease so we can make it home!
Ali

Friday, December 15, 2017

Rough Night

Alex had a rough time last night. His pain started to increase overnight and his gastric output is extremely dark and quite a bit. We are running some labs to rule out pancreatitis and we have increased his pain meds to try and get him more comfortable. The goal today is to try and get him out of bed. please say some prayers for some pain relief and overall improvement so we can work towards getting home.

Ali

Thursday, December 14, 2017

Surgery Update

Last year when Bruce took the job in San Antonio and we thought about moving, we ultimately decided we could not move because of our support system here. Never have I felt that love and support more then this past week. Thank you to our "village". The love, the prayers, the meals, the help with Maddy, decorating our room, so many texts and emails. It is felt...All of it and it means so much.

When we started putting together the puzzle pieces on Tuesday we weren't even sure that we could get everyone on the same page. Tuesday evening surgery came by and said we were a go, but that it would be Thursday or Friday. Later that evening they came in to let us know that surgery would be Wednesday at 2:00. Yesterday morning they came in at 8:45 to tell us that they would come for us at 10! From there it was a scramble to make sure everything was ready and to meet with Alex's surgeon. Alex was really scared, but did a great job. He was wheeled into the OR around 11 and we got back to our room around 4:30.  Surgery went well, but it was a very long day.

He is having some pain, but is on a pain pump and is doing well. We will most likely be in the hospital until mid next week. I will try and update again soon.

Tuesday, December 12, 2017

Hospital Update on Alex

I am trying to get out a quick update on what has happened and where we are at this point.

Saturday night Alex woke up around 10:00 and said he wasn't feeling well. We checked a temp and it was normal. He took some medication for nausea and went back to sleep. He woke me up at midnight still not feeling well. He still did not have a fever so I gave him medicine for stomach pain and sent him back to bed again. He woke me up just before 1:00 saying he felt worse and his temperature was 103.4. We quickly headed in to the ER.

On Sunday right before lunch his blood cultures came back growing the same bacteria that he has grown every other time. A quick explanation for all the people who have asked...Alex's intestines especially his colon are extremely damaged from years of not working correctly. The continuous horrific distention from gas has caused the lining of his intestines to stretch to the point that it is leaking into his bloodstream. At this point the only solution is the major GI Surgery that we were planning to do in January or February.

Alex ran fevers until Monday morning, but has been fever free since then. He is being treated with the only two antibiotics that this bacteria is sensitive to. There has been much discussion about trying to leave his port in place and treat with the antibiotics or pull his port finish his course of antibiotics to be sure we have cleared the infection and then replace his port. Infectious Disease feels strongly that removing his port is the safest course long term. The fear of leaving this port and trying to treat is that if we don't clear it we are allowing the bacteria to become resistant to the only two medications that we can use.

Here is the catch...putting in a new port makes no sense until the GI surgery is done because we will just infect the new port as well. So we are trying to get all the specialties here to talk and do one surgery later this week to include the GI surgery and remove his port. Then we would finish the antibiotics and replace his port after the holidays.

Alex is doing pretty well emotionally today. He is feeling as ready as he can to do the major surgery. He is scared,  but doing a great job talking about his feelings.

Please continue to pray for Alex, physically and emotionally, pray for the doctors to coordinate and make this plan work, pray for Maddy as our hospitalizations are hard on her, pray for me as I am so tired.

Thursday, December 7, 2017

A Really Rough Week!

We have had an incredibly rough week. Last Monday, Bruce was informed that his company had drastically over forecast their sales predictions for 2017. Consequently they reduced the workforce by one third. Bruce was a casualty of those layoffs. It was completely unexpected. It has left us scrambling. There is never a good time to face a lay off, but December is brutal and having no warning adds insult to injury. Bruce is searching and we are hopeful that he will find employment quickly.
Last Wednesday, Maddy had an endoscopy and colonoscopy to investigate her stomach pain and vomiting. Despite doing a 24 hour clean out and receiving an enema she never had a bowel movement. Dr. O is confident that her slow motility and constipation is causing her pain and making her reflux worse. We are working hard to get her constipation under control so she can feel better.

Alex's acting class had their spring recital Friday and Saturday. Alex was amazing. It is so fun to watch him perform with so much confidence and really enjoy himself. By Saturday he was not feeling great, but he still gave a good performance. By Saturday night he was really starting to decline. His stomach was hugely distended and he was in quite a bit of pain. It continued to get worse all through Sunday to the point we were considering going to the ER. We knew there wasn't really anything they could do so we stuck it out at home. Luckily, Dr. O had a cancellation on his Wednesday procedure schedule and he was able to get Alex in to decompress his intestines and buy us more time before his surgery. Alex is feeling much better today!

Please continue to pray for our family. Pray for Bruce to find employment. Pray for Alex to feel better physically and to come to terms emotionally with his upcoming surgery. Pray for Maddy to continue to stay healthy and thriving. Pray for me to be there for everyone in the way that they need me.
Ali
We are so blessed by this incredible nurse. She is so much more then just a nurse. She truly is family and we all love her!

Alex going to his youth group progressive dinner.




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Sunday, November 26, 2017

Long Overdue Update

I have been trying for a month to find the time and sit down to get a blog post done. The fates have not been kind, but I am finally doing it tonight!

Maddy had such an awesome Birthday and Halloween. This was the first year she really got that Halloween was her birthday and she loved that the whole day was full of celebrations. She started the day with a Costume Parade at School. Then we brought donuts for her class to enjoy.



After lunch her class had a halloween party with crafts and snacks. We left school and headed to therapy for trick or treating. We quickly opened presents before it was time to hand out candy. She was exhausted by bedtime! 

On November 4th, Alex participated in Extra Life for the Second year in a row. It is a day he looks forward to all year. It is amazing to be able to do something you love for a good cause. Thanks to the generosity of our friends and family, Alex was able to raise over $2000 for Cook Children's Hospital!


The rest of our month has been pretty busy medically. Alex has made 3 trips to the ER, 2 of them winding up in admissions. Maddy has been sick twice and has had an increase in her reflux and we've had a host of doctors appointments. 

For Alex, the problems we are having all stem from his GI system. His GI system has been cruddy for years, but starting in January we saw a decline in function leaving him with horrendous distention, increased nausea and relentless pain. His GI function has declined to the point that he has now had two episodes of sepsis (serious bloodstream infection) caused by his gut leaking bacteria into his bloodstream. We have tried as many interventions as we can and are at a crossroads. We have decided that the only option is to have a pretty major surgery to try and alleviate his symptoms and the infections. It is not a decision we have reached lightly. Alex will have surgery after the first of the year (probably February). In the meantime, we are going to do a procedure to try and offer some short term relief. 

Maddy has had an easier time, but she hasn't had a great month either. She has had two colds and has been vomiting on a regular basis. We thought she had a stomach bug, but at this point we believe it is just reflux as it has been going on for weeks, and almost always happens when she is lying down. She will be having an endoscopy and colonoscopy on Wednesday to try and see if there is any signs of what could be causing this. She has also been complaining of daily stomach pain for a few months. 

Alex has not been able to participate in most of his activities, but he has managed to stay in acting. He has his performance this weekend and I am praying he feels well enough to enjoy it after all of his hard work. 

Maddy continues to thrive in school and dance. She hates to miss either one! I was sad to miss two special events while Alex was in the hospital, but was grateful for friends and her awesome teachers who took pictures and kept me up to date!


Maddy loves to help me cook!

Crazy girl!

Alex "riding" Zoey

Hanging out at the Hospital


Best Visitor


True Love

So happy to be together
We had a really quiet Thanksgiving. Dad was supposed to come visit, but because Alex was in the hospital and we weren't sure when we would be discharged, he cancelled his trip.

Baking on Thanksgiving

Best part...licking the bowl!
Today we went to get our Christmas tree. It was good for Alex to get out, but he only lasted a short time before he wasn't feeling great again.




Please continue to lift us up in prayer as we try and help Alex both physically and emotionally overt he next several months.

Ali

Details on Hospitalizations for my records... Alex went to ER on Sunday, November 5th, but was sent home from ER. Back to the ER on November 9th with 101.4 fever and cold symptoms (Maddy also had a cold). Discharged the next morning to make it to a pain team appointment. All cultures were negative. Back to ER on November 16th. Fever of 104.1. Admitted and blood cultures grew out in less then 12 hours. Inpatient until November 21st.

Tuesday, October 31, 2017

Happy Birthday, Madelyn Paige!

As I woke up this morning I thought back four years to a Halloween that was nothing like I expected. On October 30th, 2013, I called my OB/GYN concerned because Maddy was not moving as she had been for most of my pregnancy. They asked me to come in the next morning at 9:00. When I arrived at the office they tried to stimulate Maddy to induce movement. When they could not get any movements they rushed me to the hospital to be induced. Madelyn arrived at 4:50 PM and changed our lives forever.
Oh my Maddy Moo....She was and is such a doll. She can be the sassiest, spunkiest, most strong willed little toot. By she has the sweetest heart. She is a nurturer and has a kindness unlike any other. I catch her all the time consoling friends who are crying. She is quick to cuddle and hug and say I love you. She loves her friends and her teachers, but it is her family she adores. She looks up to her big brother and wants so much to spend every waking moment with him. She loves to read, play dolls, play with her animals, play dress up and do arts and crafts. She loves to dance. She is Mommy's helper and loves all things girly. She is funny, god is she funny. She makes us laugh all...the...time! Her joy is infectious. She is such a Gift from God.

2013

2014

2015


2016






2017
My precious Madelyn Paige-
How very long we waited for you. Oh my sweet girl, you were so worth the wait. I love to watch the way you tackle life head on. Your personality is so much bigger then that little body. You are the most determined little girl. You are smart and independent, funny and stubborn, joyful and kind. You have so much love to give. Always go after your dreams with the same passion and perseverance you do now. Go into this world knowing you are a beloved child of god and spread your light to everyone you meet. I love you my more then you will ever know, Maddy-Moo!

Love,
Mommy

Saturday, October 28, 2017

A Mixed Bag

This week was a mix of good and bad.

I'll start with the bad. Both kids have been feeling pretty cruddy. Alex has had some of the worst pain, he's had this year. We are waiting on a procedure in November that should help and then we need to make decisions about a major surgery that would be more of a long term solution. I feel bad as we try to keep him engaged and participating in life when he'd rather lay in the bed all day. Maddy is complaining daily of stomach and leg pain. We are trying to get to the cause of her pain so we can help her feel better!

The good...We had some fun events this week as well. Maddy continues to thrive at school. She is so happy to be there. I am so grateful for there love and care for Mad. Alex participated in the Cook Children's Haunted House this week where patients participate in scaring not only other patients, but also doctors, nurses and staff. It is something he really looks forward to and enjoys. Yesterday we went to a VIP showing of the Fort Worth Air Show for the sixth year in a row. We always enjoy it and appreciate Make A Wish inviting us. It was a little less enjoyable yesterday as out temps dropped from 86 degrees on Thursday to 56 degrees yesterday! BRRRR!!!We were all freezing!

Maddy's School picture

My Sassy Pants

Hair Cut Day

Air Show

In the tent waiting to see the Blue Angels

Alex's version of trying to stay warm

Alex and Erin


Sibling Love




Air Show 2017

Pretty Girl

Trying to stay warm this morning!

Please continue to pray for these precious babies. Prayers that they will feel better and be able to enjoy all of the fun we have planned over the next week to celebrate Halloween and Maddy!

Ali

PS- Alex's Fundraiser has one more week. He is doing great, but would be grateful for any other donations to help Cook Children's Hospital! Link to donate