Sunday, September 2, 2012

Aiden is a Superstar!

Be forewarned: what follows is practically a book.  I've written to share the details of Aiden's eventful trip back to the hospital with close friends and family, while also writing everything down for my own recollection.

Aiden's first week at home was going very well.  We loved having our family of four.  Aiden was on a schedule and overall a peaceful baby, with everything by the book.  On Thursday night he ate every three hours during the night as usual, and during his one stretch being fussy, I actually enjoyed spending an hour walking and bouncing him around our backyard with a pacifier in his mouth.  He seemed the most calm when I climbed the toy castle, probably because there was a little breeze.

Then during his 7am feeding, he wasn't nearly as interested in eating as usual.  He ate a little, and then threw up.  I didn't see it, but Amada was concerned because it wasn't a normal baby spit up, being yellow instead.  We had plans to go to a park to visit Karen, Molly and Nathan one last time that morning while they were still in town, and Aiden looked really good to me, so we went ahead with our plans.  We were at the park an hour or so, with Amada planning on feeding Aiden there, as we figured he'd be hungry by then and everything would be fine.  But after playing with Michael for an hour, I checked back in with Amada, and she gave me a look that I knew we had to leave immediately.  Aiden still wasn't interested in eating, and that just was not right.  As we were walking back to the car, Aiden threw up again, it was yellow and a large volume, and this time I saw it.  Amada and I were both quite scared, but we tried not to panic and not to frighten Michael.  However, on the entire drive home I was very concerned and was thinking of the closest ER if it came to that.

It felt really good to be at home once we got there.  Aiden was still doing okay, but he was becoming extremely lethargic, was difficult to wake up, and was completely disinterested in eating.  We decided to try feeding him one more time around 11am, and if he threw up again or didn't eat we would call his pediatrician.  As it turns out, he didn't eat and I called the doctor's office to make an appointment; 2pm was the earliest they had.  We of course thought we might be overreacting, but all things considered, we were really hoping that was the case.

When the doctor saw us around 2:30, she took some quick blood samples, ran a few tests and checked him out.  She couldn't determine anything that was wrong, but she was nervous to send us home.  After a little more time in the office, Aiden threw up again, and it was a lot.  The doctor saw the yellow throw up first hand and had quite a reaction to it, saying something like, "Oh, that's not good.  That's not good."  This wasn't very reassuring to us.  She told us we needed to go to the ER right away as she feared he might have some type of obstruction in his bowels.  Talking to her after the whole ordeal, she had never seen such a case in person before, but thank God she had studied it in medical school because that's exactly what it was.  If she had sent us home, the outcome might have been very different.

So off we drove to the Clear Lake Regional ER; it was quite an unsettling five-minute trip.  But the three of us got there (Michael was at home with family) and Aiden got checked in quickly.  The next 6 hours seemed like an eternity and I'll spare some of the details, but it was surreal watching our 7-day-old baby go through everything, not being able to help him, and not knowing what was wrong.  Aiden was admitted to the PICU, and perhaps the scariest part of the entire ordeal was the difficulty the staff had getting an IV in him.  They poked and prodded him thirteen times without success, bruising up both hands, both feet and his scalp.  We were feeling desperate, and I questioned his pediatrician if he should be transferred to Children's Hospital, but she assured me that the staff and equipment at our hospital were top notch.  When all the nurses left his room for a bit, probably to discuss Aiden's dire situation without alarming us, Amada and I baptized Aiden -- we learned in Michael's Baptism class that anyone can Baptize someone, it doesn't require a priest or deacon.  We also knew that family was praying for him too.  And wouldn't you know it, the next IV attempt worked, and things began to move quickly.

Now that Aiden was relatively stable, they rushed him to get a fluoroscopy scan where they injected dye into his stomach and took X-ray video/pictures to watch what happened.  Amada and I got to watch just behind the glass, and even we could see on the monitor where the dye in the intestines stopped due to an obstruction.  The radiologist told us he would likely be in surgery in a couple of hours.  Turns out Aiden had malrotation that resulted in a volvulus.  Amada was scared to think of her baby having surgery, and I was relieved to finally know the cause and that it could be fixed.

We met with the pediatric surgeon on call, Dr. Kimmel, who was as calm and confident as you would want a pediatric surgeon to be.  Being that the surgery was starting around 1am, I was also glad that he was as alert as he was.  We gave Aiden kisses, prayed over him, and told him we'd see him soon.  Here's how our adorable baby looked right before they wheeled him into surgery.

The surgery lasted maybe 90 minutes in total, but the OR staff called the waiting room 2 or 3 times to give us updates.  Answering that phone was quite nerve wracking, but they had good news for us every time.  Having my parents in the OR waiting room with us was amazing, as we talked about random things; I'm sure Amada and I would have been wrecks if we were there by ourselves.  Seeing Aiden again was the greatest feeling, and the surgeon said that everything looked really good while he was in there; he didn't see any dead tissue which will occur if surgery is delayed after a volvulus forms.  Once he was back in his PICU room, much of the OR staff plus the PICU staff were hovering over him.  The PICU nurses later told Amada that they don't usually see infants in their area, and that made him extra special to them.

Here's Aiden back in his PICU room.  The oxygen mask is about the size of his face!  The electrodes are just to monitor pulse, heart rhythm, blood pressure and oxygen levels.  These electrodes routinely got knocked off or had momentary lapses where they did not read the signal correctly -- it was so routine that the monitor would beep every few minutes, and nobody would come into his room even if his pulse was reading 50 or 0 bpm.

I used to think of an ICU or similar area surrounded by the best medical equipment in the world with trained physicians and medical professionals as safe places where nearly any problem could be solved.  But I saw first-hand a much different story, where doctors didn't have the answers and the nurses were mostly just watching over and taking care of basic needs.  The PICU is certainly no safe haven.  That being said, the staff did make all of the correct critical decisions, and I experienced the strength of human life.  Through the whole ordeal, Aiden was amazing.  You should go back and look at his calm, beautiful face right before his surgery -- this was after 18 hours of throwing up stomach acid and bile, not eating or drinking, having a tube down his throat, an IV in his scalp with an additional 13 battle wounds, plus having a spinal tap when we first arrived at the ER.  He was probably longing for the good ole days in the womb!

It was ironic that Aiden, who went drug-free through all of pregnancy and delivery, had now been given many drugs for anesthesia, pain relief, stomach acid reduction, nausea and probably other symptoms I've forgotten about.  But we also felt that his healthy pregnancy and delivery, plus a good first week where he had already gained more than a pound, were quite beneficial to his stamina before the surgery.

Once the surgery was complete, it was just a waiting game to see how fast Aiden would heal and when he could have milk.  After the second night, Aiden still had the tube down his throat to suck up any fluids that may accumulate so he wouldn't throw up... but it was no longer sucking out any fluids.  Aiden obviously hated the tube and had managed three times to remove it himself, even though either Amada or I were by his side the entire time, even through the night, with the primary purpose of keeping him from removing this tube that was taped down to his face no less!  Once he got it out just with his tongue, which was quite a feat.  And the other two times it was a quick strike of the hand that yanked it out.  After the third time, the nurse decided to leave it out until the surgeon checked up on him.  The moment the surgeon saw the tube had been out, he ordered the nurse to put it back in.  And while the nurse was preparing to do so, I questioned the surgeon if that was necessary.  He said he had done this surgery 20+ times and had never taken the tube out before 48 hours and we were only at hour 32.  But I explained to him the exact amount of fluid that had been extracted through the night, with the last 8 hours the tube being in only 1 cc was collected, and the tube had since been out about 4 hours without any signs of distress from Aiden.  In fact, Aiden was so much happier without the tube, and that's what Amada and I wanted.  The surgeon paused for about 10 seconds while thinking about it and then declared, and yes this is exactly what he said, "I've come up with a new theory.  This is the fastest healing baby in the world!"  He said it with a bit of sarcasm and I couldn't tell if he was mocking me or if he was actually going to cancel his order to put the tube in.  But when I asked him if he was serious, he said that he had never seen it before but that he was willing to listen to the patient and learn something new.

The next day they let us give him a bottle for the first time.  He only took in about an ounce during the first feeding, but it was great to have his body fully functioning again.  They removed the IV line so Aiden would become thirstier, and over the next 24 hours he began to take in enough to sustain himself, which was the requirement to be allowed home, and we were super eager to achieve that.  Not only is sleeping in a hospital room not a pleasant experience, but Michael was starting to have a rough time at home with his parents often away and not knowing when we were coming or going.

Aiden continued to impress the staff with his super-quick recovery, and Dr. Kimmel repeatedly called him a "superstar", and he said it just like this, without the hand motions though.  We left on a Tuesday and wrote a message to the staff on the whiteboard thanking them for saving our son's life.

All in all, it was a terrific experience that nobody should go through, but it did bring me and Amada closer together.  And if we didn't fully appreciate our boys before, we do now.  I think one lesson to be taken from this is that parents know their children better than anybody else, and if you think something isn't right, do not hesitate to call a doctor or intervene on their behalf.  We consider ourselves quite fortunate that the volvulus did not form until day 7 after we had gotten to know Aiden and his schedule and demeanor.

Aiden's condition has no long term consequences other than a little scar on his belly... and the lack of an appendix going forward.  But you can see from the below picture that our chubby little cherub is doing quite well today!  Amada and I would like to thank our family and friends for their prayers and support during those five days; it made a world of difference to us.