Aiden's Rough Start to 2011

It all started January 22, 2011. It was a typical day except for the fact that Aiden started coughing. It was one of those deep chest coughs with no phlegm. It didn't really concern me too much because sometimes that's how his normal cough sounds. And I wasn't too surprised because many of his classmates had been sick, so I figured he'd be next. The cough went on until Tuesday when the cough got more wet so that concerned us. We still sent him to daycare and asked that his teacher keep an eye on him. She let me know around noon that she thought he was having difficulty breathing, so a few hours later he took him to see the pediatrician. She tested him for RSV and strep. Both tests came back negative. She sent us home with an antihistamine and told us to keep an eye on him. At that point he hadn't had a fever so they ruled out the flu. That night he got a mild fever and we gave him some ibuprofen which seemed to help the fever. He woke up about 3 AM that night with another fever, but again it was helped by the ibuprofen. That morning (Wednesday) we made another appointment with the pediatrician thinking that it must be the flu. She tested for the flu and again for strep since his throat was so sore. Both tests were negative. She explained that she is seeing a lot of viruses that aren't RSV or the flu and that we'd just have to ride it out and there wasn't much you could do for it. Just as we were about to leave the doctor's office, Aiden started breathing kinda funny. The doctor even mentioned it, but then his breathing would go back to normal. That continued once we got home. Shawn and I assumed that since his breathing would go back to normal that Aiden was forcing himself to breath funny and just kinda explained it away.....until the weird breathing never stopped. We called the doctor again Thursday morning and explained that he wasn't breathing normally and should we come back in for another visit. The nurse seemed concerned about his breathing and said we should come in. So for the third day in a row, there we were back in the pediatrician's office. The doctor listened to his chest and said immediately she thought it was pneumonia. Just in case it was something milder, she gave Aiden a steroid and a breathing treatment. She said if this helped his airways open up, we will be able to tell immediately. It didn't. She called Children's Medical Center's ER and told them we'd be on our way. Needless to say, Mommy was a little freaked out at this point. Little did I know, there would be plenty more freak out moments to come.

We were admitted into the ICU around 5:00 pm on Thursday, January 27, 2011. They put him on oxygen through a nose tube (cannula), put in an IV for fluids because he was very dehydrated, and sucked all the mucus out of his nose and throat using a long tube down the nose and into the throat. He didn't like it by any means, but he tolerated it very well. The doctor and nurses came in what seemed like every 5 minutes until about 5 in the morning. They were doing x-rays, "beating" his back to try to loosen the "gunk" in his lungs, putting in antibiotics, you name it. They noticed in his x-ray that there was a lot of air in his bowels and stomach so they suggested putting a tiny suction tube down his throat and into his stomach to get some of the air out. Again, he tolerated that like a champ. They had to take another x-ray to make sure the tube was placed in the right location. Good news - it was in his stomach as planned. Bad news - it was looped in his esophagus. They had to pull it out a little bit to try to straighten it out and seat it back in the right place. Another x-ray was taken to see if that worked. It didn't. They pulled it out yet again and tried to get it right. They assumed they got it this time and didn't do another x-ray.

He was now getting daily x-rays to see the progress of the pneumonia. When we were first admitted into the ICU, the x-ray showed the disease throughout the middle and lower right lung. Now that he was hydrated, the x-ray showed the real picture which was the entire right lung was diseased. This really upset Mommy and Daddy because it seemed like even though he had the antibiotics, we were taking a step back instead of forward. That morning's x-ray showed that the tube in his stomach was still twisted so they adjusted it one more time. He was also getting daily blood work multiple times a day. This involved finger pricks or needles and Aiden again took it like a champ. I honestly couldn't have been more proud of him. He handled everything better than I would have for sure.

We had an ultrasound done on Saturday morning and it showed a small amount of fluid around his lung. The doctors suspected this would be the case, but since the amount of fluid was so small they decided not to do surgery and just wait to see if his body would absorb the fluid. We continued with the respiratory therapy and the antibiotics as usual until Monday - the worst day yet. It started out very early in the morning when his IV finally gave out. We had already scheduled him to get a PICC line that morning. A PICC line is a super duper IV that goes up his arm and into a large artery near the heart. This type of IV can last for months and is much easier on the veins. I was hoping his temporary IV would last much longer, but two hours before the PICC it gave out. They told us they'd have to put in a new temporary one so that when they did the PICC line they could deliver a mild sedative. The first nurse tried on his other hand..FAILED. A second nurse tried on another vein on his other hand...FAILED. A third nurse tried on his foot...FAILED. The fourth nurse finally got it on his left foot. Aiden was screaming and squirming the entire time. Who could blame him? They were hunting and pecking with that needle four different times!! Mommy about lost it. After that nightmare was over, the PICC line people showed up to put that in. He again went through a tough time with that because all these doctors and nurses were in his room poking at him.

Once that was over the new doctor on staff wanted a little more support to help him take deep breaths so he put him on a BiPAP or a bilevel positive airway pressure machine which provides support through a mask that fits over his nose. The first mask they put on was a little big but no one really said anything. The respiratory therapist that night mentioned it and said he wanted to try a smaller mask. Well, changing the mask is no small task. The mask attaches to a cap over his head so we had to move him and mess with his face a lot and it really upset him. The smaller mask was still too big, so they found an even smaller one so here we go again upsetting him. It seemed like they couldn't get a good seal with the smaller one, so they put back on the original mask. Meanwhile, Aiden is working double overtime to breathe because he is freaked out to say the least. Mommy finally told everyone to get out of his room so he could calm down. Mommy fixed the mask and he finally calmed down for the night.

A second ultrasound was ordered on Monday so we could see if the fluid had gotten worse. It had. We consulted with the surgeon and he suggested surgery to remove the fluid from the cavity around his lung. We decided that he had had enough trauma for the day and decided to wait to see what the morning's x-ray would show and make a decision in the morning. Meanwhile, the doctor ordered a CT scan for the morning so that we would have more information to decide whether to have surgery or not.

Tuesday morning (February 1) we had the CT scan and it showed a totally colapsed right lung with a ton of fluid around it. That made our decision for surgery very easy. The surgery was then scheduled for that day at 1:00 PM. They had also decided to do a bronchoscopy which involves putting a scope down into his lung just to see if there was any obstruction that could be causing the infection. There wasn't. They then drained the fluid (which amounted to about two coke cans full) and did what they call a decortication. This is where they peel off a thin layer of more "gunk" that lays on top of the lung. They call it a rind because it is like peeling a rind off of an orange. If that is left on, it could harden and make it impossible for the lung to expand. The doctor took pictures of the procedure and by the looks of them Aiden definitely needed the surgery. They took an after x-ray and the right upper lung was already much better. I couldn't believe the improvement!! The pictures from the surgery are below.



And that brings us to day 8 of our stay at Children's. That day was a great day. Aiden laughed and smiled and was even a little whiney. I would normally say I hate the whine, but it kinda sounded nice. :) At this point we still weren't seeing a lot of improvement in the middle and lower right lung, but he was a lot more alert and coughing up a lot of gunk which are all good signs.

On day 9 we had a bit of a set back. Aiden's emotional state was pretty fragile. We had a night filled with "it hurts Mommy" every time the nurse would come in and do anything. I think he got to the point where he just didn't want to be touched anymore. I also think that Mommy and Daddy weren't really prepared for him needing pain medication through the night. Since he did so well during the day, we lost track of the need for it at night. Once we got him back on the pain meds through the night, everything was much better.

The chest tube came out at about 9:00 AM on day 10. Mommy and Daddy were anxiously awaiting this for days, but we were also not looking forward to the amount of pain he would be in. Luckily it was a very quick procedure. They doped him up with pain meds so he was pretty out of it until about 2:00 PM. The doctors and nurses encouraged us to try to get him moving. He was still very weak, so we did move him around but there wasn't much movement without support. He was eating and drinking and laughing and talking a lot that day. Everyone who came into the room said he looked like a totally different boy. His lower right lung was still yucky, but the upper lung was sounding better and better every day.

They confirmed on day 11 that it was MRSA in his lungs along with the RSV. The doctor told me that years ago it was a mainly hospital type bacteria, but now with all the outpatient procedures they have there are many people out in the community walking around with it on them. They weren't sure what came first, the MRSA or the RSV. Either way, one on top of the other was what caused him to get so bad. The infectious disease doctor actually presented Aiden's case during one of their meetings because he was so impressed with how bad he was and the immediate results after the surgery. I wish I could have been there to hear it.

On day 12 we got the word that the MRSA responded to one of the less harsh medications, so he was able to get off one of the antibiotics. He also was able to move out of the ICU and onto the regular floor.

I guess 13 was our lucky day. Aiden basically weened himself off his nasal canula. It kept coming undone and when Aiden and I woke up it was about an hour before I even realized it had been off. When I attached it back, Aiden was NOT happy. For about an hour after that it just kept coming off over and over again so I just decided to play ignorant and keep it off. Aiden's oxygen levels remained the same or better without it. When the respiratory therapist came in, I told her about it and she agreed that we should just keep it off and see how we did. The doctor agreed and it was off the entire day and it was wonderful! The surgeon came to visit and encouraged us to keep trying to get him to walk and move around more, so after lunch we unhooked all his many cords and tried walking. He wasn't into it AT ALL! He just wanted to sit and even sitting on the floor or the couch didn't sound appealing at first. The nurse suggested we go to the playroom, so around 4:30 PM we did and man am I glad we did! As soon as we got in there he asked to walk! I looked at Shawn in disbelief. We put him down and held his hands and he walked all around that room playing with all the toys. He also ate really well at dinner time. The infectious disease doctor was very impressed with his progress, but wanted us to stay a few more days so she can feel comfortable sending him home with oral antibiotics.

We were finally released on day 15. Since then, Aiden has been doing really well. He's not had a single fever and is getting stronger and stronger each day. Today was his first day back in school, and so far so good. I know a lot of you that follow this blog prayed for Aiden and continue to pray for him. Shawn and I are so blessed to have such great family and friends and thank you so much for supporting Aiden through this rough time. The prayers definitely worked!