Sunday, May 24, 2015

Our holidays, with a twist

Our 2014 Christmas holidays started off like usual, with a trip to New Orleans the weekend before Christmas.  Everything was going great until Sunday, the day we were going to be driving back to Houston.  Aiden slept through Church on my shoulder instead of being his usual busy-body self.  Then after eating half of his beignet, he gave me a look I had seen a hundred times before.  So I quickly took him outside where he threw up in a garden... and so our journey began again.

Aiden enjoying his beignet on 12/21/2014, and smiling for the last time for the next few days.
Aiden ended up not being able to keep anything down the rest of that day, although every time he would go about 3 hours without throwing up we would be optimistic, only to have those dreams shattered.  We drove home at nighttime, hoping that Aiden would get some rest.  But every couple of hours he would wake up and start screaming.  So I would quickly pull over, get him out of his car seat, and hold him over so he could throw up without getting any on himself.  It was pretty terrible, but we did manage to keep Aiden and the car clean.  We got home and put him to bed where he slept a few more hours, but he was only getting worse by this point.

The next morning was spent watching Thomas the Train videos on my phone with a bucket in my lap and giving Aiden sips of Pedialyte every 15 minutes.  He was so dehydrated that he would cry out for more liquid; it was heartbreaking.  By 7am it was obvious we needed to take him to the ER to get an IV.  He had a number of vomiting fits over the past year and a half, but he would always be able to keep liquids down after 6-12 hours, and we were way beyond that this time.  So we dropped Michael off at a friend's house assuming we would be back shortly to pick him up, not knowing that this was going to require a 10-day hospital stay.

We took Aiden to Clear Lake Regional, had one room at the ER and then another room in the pediatric section of the ER.  They eventually got an IV in him and admitted us to a room; we still thought we would be out later that day or the next at the latest.  One of his nurses told us they would try to have us home by Christmas which seemed a bit ridiculous to us as we had no visions of staying three more days.

One of the moments where Aiden did not feel sick to his stomach and I was able to take him to the play room.  He was getting skinnier by the day though, falling below 20 lbs at one point even though he weighed 26 lbs months earlier (23% decrease in body weight)

Aiden basically continued his same routine where we monitored all of his intake and thought he was making strides, only to throw up twice as much volume a few hours later.  He went 12 hours without throwing up at one point, but he wasn't getting better.  He would alternate between looking OK and being doubled over in pain.  An enema did not help the situation any.  The doctors were stumped, and they did not see anything unusual in the diagnostic images that they took.  Amada specifically asked if a surgeon could look at the images but was told that wouldn't happen because it wasn't a surgical issue.

On Christmas Eve at 5:30pm, Aiden was transferred to Memorial Hermann Children's Hospital.  Amada rode in the ambulance with Aiden while I drove our car there.  It took a few hours to get settled in, but we immediately saw a difference in this teaching hospital with different teams of doctors caring for Aiden and discussing the case amongst themselves: pediatrician, GI specialist and surgeon.

A whole lot of toys get donated to children's hospitals during Christmas, so on Christmas morning Aiden got a large garbage bag filled with toys.  Not surprisingly, he was not very interested in playing at this time though.  The staff gave us another bag full of toys for Michael too, even though Michael (under 12) was not allowed in the room. Amada and I tried to take little breaks to spend time with Michael while he was spending time mostly with GiGi who would bring him to the hospital play area for hours every day -- it was a tough experience for all of us.
Michael at the hospital cafeteria.  Given our priorities at the time, he may have been allowed a few things outside the norm  :)

On Christmas Day additional images were taken, and at this hospital the surgical team saw them and thought there was definitely some blockage.  The other doctors saw the same images and thought that the issue was not structural, but the surgeons felt so strongly given Aiden's history and current situation that the nurse came into our room and told us he was going into surgery as soon as they could get a pediatric anesthesiologist ready.  The head pediatric surgeon Dr. Tsao was already on his way.  It all happened so fast, but after initially crying over the news of the surgery, we realized this was probably the only good option at this point.  Aiden had been fighting so hard throughout this ordeal, but by noon or so this day he had completely given up.  His body could take it no more.  His eyes no longer had life in them.

We called for the hospital chaplain who prayed over Aiden, and then he entered surgery at 6:10pm.  I have to say that I was much less nervous this time around than when he was 7 days old, but it was a very long 50 minutes until the nurse came out at 7pm to tell us that the surgery was successful and the surgeon was closing him up now.  The surgeon came out another 30 minutes later and told us that they encountered exactly what they expected and were able to fix it without making any cuts to his intestines.  I later ordered the full operative report from the hospital where the surgeon wrote that there was an extreme amount of adhesions around the intestines (from his initial surgery) that can cause constrictions.  Worse though was that his duodenum had twisted around itself one and a half times, not allowing food to pass out of the stomach... which then caused the lower part of his stomach to be twice its normal size.

After surgery, Aiden looked so good and he was in better spirits.  I'm not sure if he thought he may never see his parents again, because when we finally got to see him he got so excited and even stood up in his bed as I was going to give him a hug.  The nurse said she had never seen someone stand up like that immediately following abdominal surgery.  He called for Mami so she slipped into bed with him and he immediately went to sleep.

Right after surgery

The next six days were a very slow recovery process.  We were told he was "fixed," but we still had to worry about occasional blood in his NG tube that was sucking out the contents of his stomach until his intestines were all healed up, facial swelling from the IV, morphine for the scar pain, and lack of a BM.  It was very painful for him to move at all, but he did love all of the trains he received as presents; GiGi and Michael brought him a new one every day!  But he was on the path to recovery, and he was on cloud nine when he got to play with his brother again.

When Aiden wasn't watching countless YouTube videos about Thomas the Train, he was doing train puzzles or playing with toy trains.

Aiden finally feels well enough to make it out of his room, toting the IV machine and all, to see Michael!

More presents!

Best buddies
Feeling better, and about to go home.
Amada and I had to continually advocate on Aiden's behalf, asking the doctors or nurses to lower his IV when he was drinking on his own, remove a backup IV location as the skin was getting extremely sensitive, reposition the NG tube when it was clearly drawing up too much liquid, allow foods when his stomach was obviously feeling better, and providing pain medicine when necessary.  We did everything we could to get him out as soon as possible, and by New Year's Eve after staying in six different hospital rooms we finally got our wish.  After a full meal and a hospital party (where probably every other patient was not as lucky to be getting discharged that day), we packed our bags and had our family of four back home again.

Aiden was happy to have food again -- essentially his first in nearly 10 days

Hospital's New Year's Eve party for the children, 12/31/2014.  I think Aiden was more than a little tired of being a patient by this point.  Putting pants on him did help some.
We celebrated Christmas on New Year's Day morning which actually turned out pretty nicely.  Michael had written a very nice letter to Santa on Christmas Eve explaining that his brother was sick and asking if Santa could return once his brother was home.  Michael was a champ throughout the entire ordeal, and his love for his brother was clear.

In the five months since, Aiden has done extremely well.  His scar has healed and faded a bit.  He has only thrown up once, and although that caused quite a scare (mostly because it was green which was normal for his past but is not a good sign), it was different from all his other episodes and likely just related to some bug or virus.  He has put on some weight and in general seems to be very healthy and happy.  I hope he remembers nothing of this, but he should know how many people prayed for him, visited him, brought him gifts or his family food, and cared for him in other ways.

I've tracked Aiden's weight along with notes about his health for the past 1.5 years.  In the picture below you'll see progress for the most part, but some major dips along the way (and this doesn't include his extreme measurements during his hospital stay).  Each dot represents a single measurement, so the clusters of measurements indicate that things weren't going well and I was weighing him nearly every night.  I also kept a mini food diary, but given the cause that we eventually figured out it is not surprising that we never found a real connection with foods.

Aiden has become all too familiar with the scale
We were given no guarantees that this issue couldn't recur again in the future anytime from a week in the future to 50 years down the road; however, the surgeon said he had never heard of a patient needing a third surgery for malrotation.

We are so happy to have Aiden at home being so healthy, and it is such a relief to no longer worry about him all the time.  He seems proud of his scar and I hope he always feels that way.  Here's hoping that 2015 will be his first year to remain out of the hospital!

Back to full strength




What could be better than spending time outside with family

Doodle bugs are his favorite

Friday, July 18, 2014

Summer 2014

I can't believe it's already going to be August!! 

A little update on Aiden:  He's been doing really great ever since we found out he is extremely sensitive to DAIRY.  Even though we thought we had taken out all dairy, we started to read the labels carefully and found that even Veggie Chips have dairy.  Aiden had his GI appointment last Tuesday, July 8th, and the specialist decided to go ahead and start giving him Prevacid every other day instead of every day.  We're still a little uneasy about this but we will go with what he says for now.

May:  Mother's Day, Zoo, Crawfish Boil

June:  Father's Day, GranCamp, Aiden's 2nd Birthday party

June has been a very busy month.  It started off with Charles and I going to Mexico for a friend's wedding and my parents taking care of the boys. It was a much needed vacation for us since that was our first alone since babies!!
Father's Day was spent at our house with Grampa and Gigi coming over for the festivities.  We tried out our new water slide and pool.  
The boys had so much fun with Grampa and Gigi, Molly, and Nathan during GranCamp.  This was Aiden's first time ever being there the ENTIRE time!!! 
Aiden turned 2!  It was a Medical theme because that has been his theme since he was born and we're hoping that this is it...God willing.  We also had to include Mickey because he LOVES "Kickey"!!

Dairy Free Cupcakes made by me and frosted by Gigi

Hitting the piñata

July: Horseback Riding & Writing Camp

Michael has been going to many camps this Summer.  The Little Gym Camps, Space Center: Rocket Camp, Horseback Riding lessons with Abuelito, Swimming lessons with Caitlin, and our latest, Writing Camp.  Writing Camp was done in our home because it was something I decided on doing since May.  I wanted Michael to go to this camp but figured that I, along with my friend, Beckie, could do one of our own since we were/are teachers.  We invited some of his and Hannah's friends over and it was adorable!  All of the kids had fun and I really enjoyed being able to teach more than just one child at a time :)

Aiden didn't want to be left behind

Wednesday, April 16, 2014

Aiden's GI appointment

Today we had an encouraging appointment with Aiden's GI specialist. The specialist wants to do a series of tests depending on the outcome of each test and he says this needs to be done quickly.
The first test will be an imaging of the lower GI to check for any obstructions.  The main reason for this is that the last time Aiden threw up, it was green and the specialist says that it's not normal.  It should be yellow or white, not green.  If there is an obstruction, then Aiden will have surgery.
If everything is normal, then Aiden will have an endoscopy on April 28th.  This is to check for any stomach lining infections, which we think he might have. 
During that time, they will also put a tube down to his esophagus to monitor and record anything that goes on for 24 hours. He will come home with the tube and we will see if he even keeps it in for that long!  We recall very well how he did not like the tube down his nose after his surgery and pulled it out 3 times.  He was only a week old so who knows how he will be with this tube...
If everything is normal there, then he will have a Hydrogen breath test.
If that comes out normal, then they will do Motility Testing.  "Gastrointestinal (GI) motility refers to the movement of food from the mouth through the pharynx (throat), esophagus, stomach, small and large intestines and out of the body. The GI system is responsible for digestion. The moment you even look at food, your body starts beginning this complicated process."
This test, according to the specialist, "is a little hairy" because there aren't really many good tests and it's hard to treat.

Keep those prayers coming, please.  We really appreciate them :).

Tuesday, April 8, 2014

Aiden's Status

Aiden, like I mentioned before, will be having an appointment with a GI specialist on April 16th.  It can't come soon enough for us.

We've been frequently seeing his pediatrician because he has been throwing up more and more.  She changed his medicine from Prevacid to Nexium and prescribed Reglan.  During our visits with her, she always asks if he is having bowel movements.  We've always told her that he is very regular and there are no issues there.  She asks us because it is a symptom of abdominal adhesions, which could very well happen because of his surgery. 

On Sunday, April 6th, he had not had a bowel movement since Friday and he had been throwing up.  Charles and I decided to take Aiden to Texas Children's ER.  We have amazing friends and we dropped Michael off with them.  After about 4 hours of being there, they took 2 x-rays and confirmed that there was not a blockage and that there was, in fact, a lot of poop.  After 6 hours, we got a prescription for Miralax (softens stool) and we went home.

The next morning, I called his pediatrician's office and she returned our phone call telling us that we needed to go see her.  Aiden had still not had a bowel movement and was still throwing up.  She gave him an enema.  She also said to stop the Reglan since it's what coincides with when he started to be constipated. He was in so much pain and had no idea what to do but he finally had 2 dirty diapers.

We got home and tried giving him the Miralax but he would not take anything.  We tried Gatorade, juice (different types), Pedialyte and nothing.  He kept throwing up and just wanted water.  His nurse called to see how he was doing and told us that water was not the best since it could agitate his stomach and maybe causing him to throw up more.  We were at a loss.  Aiden finally stopped throwing up at 9 pm.

Tuesday, April 8:  We decided to take a different approach to his medication.  I made him a Vanilla Arbonne shake with a Greens mix powder and Charles would put a little bit of the shake in a cup with some Miralax and he would actually drink it.  Charles made deals with him in which Aiden could drink a sip of water (all he wanted) but then he had to have the shake.  Aiden took the deal and finished up his medication.  He finally had a dirty diaper close to 2 pm!!!  Then he had another one and is now acting more like himself. 

Aiden is looking really skinny but we Thank God that he is doing better.  36 hours with no vomit is a very welcome sign for us (and gives our washing machine a break).

October 2013-March 2014

It's been a very long time since we last wrote and we apologize.  Here are some recaps of what has been happening in our lives.
Aiden has been walking for a long time now and LOVES to run with Michael.  It's really very cute!

Amada turned 30!!  Charles had a surprise birthday party planned and it was truly amazing.  He made this special book that has my life from when we met until now :)

Michael dressed up like Woody from Toy Story and Aiden like the Scarecrow from The Wizard of Oz for Halloween.  Charles dressed up like a triathlete and I, like a runner.  We went trick-or-treating around the neighborhood and Michael loved saying hi to everyone.

We went camping in Grampa and Gigi's new camper, which Michael absolutely loved.  We did quite a bit on that camping trip.  Michael went fishing with his new fishing pole, we tried out their new boat, we ran (saw a long snake), and we hiked quite a bit. Aiden loved his Elmo flashlight and really enjoyed camping.

We received turf from Kyle Field from Grampa and Gigi as an early Christmas present.  It is beautifully adorned with maroon and white rocks.

We spent Thanksgiving in Zapata.  The boys rode horses to their hearts content.

Christmas Time!!!  We did quite a bit during the month of December, especially one weekend in New Orleans.  The girls went from one party to the next.  It all started with a bridal shower, then another bridal shower, and then the Pilié Christmas party.  Very fun but we were certainly tired.
Michael did his very first Fun Run!  It was the Jingle Bell Run and boy, when I told him that we were close to the finish line, he RAN!!!  It was awesome!!
It was definitely a "Puzzle" Christmas.  We got about 6 puzzles all together as Christmas gifts.  We've been putting a lot of puzzles together.  In fact, Charles, Elsa, and I rang in the New Year doing a 1500 piece puzzle :)

Aiden got his first haircut on December 31st.

We got a cat.  She came to our doorstep, I picked her up, took her around the neighborhood to figure out whom she belonged to and no luck.  When we took her to the vet, they found out she was chipped.  They called her owner.  Next morning, she was BACK!  I took her back to the vet to get the owner's information and I called her.  She came to pick her up that afternoon.  She came BACK 4 days later and we've had her ever since.  We call her Sol (sun) and Michael calls her Sol Tiger Knee Cat (don't ask).
She's sweet and beautiful!
Michael went to the movie theater for the first time ever and we saw the movie Frozen.
Charles celebrated his birthday by having a fun ULA.

Our first born turned 4!!!!  For some reason, 4 seems old to me and he really is getting older in the way he speaks, thinks, and acts.  My baby is not really looking like a baby anymore :(.  He's a sweetheart!  His birthday was a Western Theme so naturally we had ponies, cowboy hats, and bandanas :)

We also had some ADORABLE pictures taken of the boys by Rebecca Penny.  They are seriously precious.

Michael completed another Fun Run.  He ran a 1k on the sand! The run was in Galveston and it was cold and windy but he had a lot of fun and loved it.  We would go out for practice runs on the running tracks close to our house so he was well prepared :).

Our little Aiden has not had the easiest life yet.  We will be going to a GI specialist on April 16th and see what they tell us.  We hope and pray that they have some answers and that he has a simple solution.

We have also found out that Michael can read and write in Spanish.  He recently started getting reading homework in English from Montessori, so he's also reading in English.  I am truly impressed.

Aiden has been talking a lot more and can repeat most things such as: por favor, ya, si, mama (finally!!), Michael, Mickey, mum mum (snack he calls by name), and a few more that he's been saying for a long time like Dadda.