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