Vicious Cycles

I struggled today. I questioned people. I got angry. I got upset. I got emotional. I got discouraged. I got sad. I got a little pushy. I got exhausted. I got humbled. And I got put in my place.

After some miscommunication overnight and early this morning, I was not a happy camper. However, things got better. I think I just needed to vent a little frustration. I have to remember that things don't always go perfect in one of the best hospitals in the country and that there are going to be hiccups. However, I want the best for Hayden. I am still happy that we are here and feel that very first night when I searched the phrases "Omphalocele" and "St. Louis," God led us here. Go ahead and click HERE.....see what happens when you search those and experience what I saw back on September 17th, 2012.

As Kelsea and I were sitting in the surgery pre-op room on Monday, I was telling her that I couldn't believe the "luck" we had ending up where we did. I know luck had nothing to do with it. This was the path that God led us down the entire time. I couldn't believe that 9 months and 1 week earlier I had searched the three phrases and the first website I came across (as hopefully you did when you clicked on the link above....if you didn't...do it now by clicking HERE, and then open the first website and read "Blair's Story." Actually, if you open several of the websites on that Google results page, you will come across quite a few familiar names, places, and people that I have mentioned over the past few months) mentioned the guy who was going to be walking through our door any minute. There were close to 6 general pediatric surgeons, and 40 specialized surgeons who could have been the lucky one, and the one who first worked on Hayden's Omphalocele after he was born, followed him for the past 5 months, and was now going to make him better was the first name I read about that night. There is no way that is a "coincidence" or luck of the draw. That was something that God had planned all along. Too many things fell in to the right place (or the stars aligned as some say) for it too be anything less than that.

Anyways, back to today! We haven't taken any pictures of Hayden in a couple of days because he is so swollen. He really doesn't look anything close to himself, which has been the hardest on Kelsea and I. I think we could make it not holding him and hearing him, but when you take away his looks, it has been really tough.

For the next part which will bring us up to speed, I am just going to copy and paste from a couple of e-mails I sent. There is a lot of information (and there are still a lot of unknowns), but it gives an excellent account of what has happened and what they hope to see happen overnight.

 

E-mail #1

 

"Ok....Hayden is getting the blood "transfusion" right now. However, it is not as scary as it sounds. His hemoglobin was low (anemia) which could be from a number of things. First off, it could be from the surgery. They said intestines can easily lose a lot of blood when they are in open air during a surgery.

Another possible cause is due to his swelling. He is really retaining water/fluid and it got kind of worse today. They are giving him Lasix (water pills/diuretic) to help release the fluid. Now, why is he retaining fluid? Could be from "trauma" from surgery. It could be the breathing tube agitating him. It could be due to him being immobilized. It could be due to his heart working "differently" than normal. They are investigating some things with his heart. They think he could have what is called Pulmonary Hypertension (which is a common thing associated with Omphaloceles. On an X-ray he had, the tech thought his heart looked enlarged. It is not enlarged, it is actually just something called the Thymus that is on top of the heart that the X-ray machine can't see through.

 

So, they did an Echocardiogram yesterday, and found what looked like a flattened septum. The septum is the wall between the left and right lower chambers of the heart. The right chamber pumps blood (w/oxygen) to the body while the left chamber pumps blood (w/out oxygen) to the lungs. Normally, the left chamber pumping blood to the lungs requires less pressure than the right side, so the septum pushes away (curves) into the left chamber because the right chamber has greater blood pressure. However, his is flat (or actually straight) which could possibly mean there is increased pressure in the left chamber, pushing the blood to the lungs (pulmonary hypertension). However, his "numbers/figures" don't necessarily agree with the echo, which doesn't make the doctors think they need to treat it immediately. However, it also raises a question about if the heart is having to work harder to pump the blood into the lungs, and if so, what about the lungs makes this true. It could be because there is some underlying issue with his lungs, it could be due to his newly diagnosed Tracheomalacia/Bronchomalacia. It could be a number of other things.

Originally they were going to do a CT scan on his chest today to investigate the lungs more, but surgery is not ready to do that. They want to rule out a few other things first before they subject him to more radiation with the CT scan. In just the time that I have typed this e-mail, Hayden has "peed" out almost 250 ml of clear fluid.....and his face is looking better. The doctors said everything is a vicious cycle and they just have to find the thing that breaks the cycle. Once his blood transfusion (which again, is not as scary as it sounds) is complete in about 90 minutes, then he will get started on his TPN, which will be the first real calories he has had since 4:30 Monday morning.

Surgery's goal is to get him off of the ventilator and they feel the TPN, as well as the released of some of the retained fluid (hopefully) will help him move towards this goal.

 

Email #2

 

Just had a good conversation with nurse, PICU drs., and surgeon via phone! First time in several days that I am not uptight, stressed, and I am smiling. I am not sure why, but I have a good feeling. PICU doctors were doing rounds as nurse was emptying his urine bag (sorry....all of the medical terms and I can't remember the simplest one!). He had a little over 250 ml of urine that were emptied out (almost 350 ml now) and his face looks a TON better! The doctors on rounds said they were going to push surgery, radiology, and Cardiology to sit down in the morning and come up with a plan. He said I am ok with letting him rest tonight and seeing if the diuretics help, but we are not going to go another day without a plan. He was very adamant! My kind of guy! As they were talking, surgery called on the phone and checked on his swelling. They were pleased with the fluid output in his urine and hope to continue to see if that helps with the swelling. They are going to increase the sedation medicine so he gets a good period of rest without interruption from pain (hopefully) and in the morning, do either an ultrasound or another x-ray of the chest to reevaluate and take to surgery to decide if they need a CT scan or not.

I have not been a happy camper with (what seemed like) lack of communication. However, I feel good now. Prayers for the continued effectiveness of the diuretics which will allow the doctors to really get a good evaluation of his heart and his breathing/lungs tomorrow!

 

After sending those two e-mails, Dr. Warner and Dr. Fialkowski (I finally got her last name right....I'm believe there were several posts from January/December that not only spelled it wrong, but completely had the wrong last name....sorry Elizabeth if you ever happen to see this!!!) stopped in to check on Hayden and they said he was doing very good, surgery standpoint. They were very pleased with his fluid output and Elizabeth said his face looked a ton better (she had seen it a couple of hours before when it was really bad). We are going to do a CT scan on Hayden's chest in the morning to hopefully rule out any issues with his heart and the pressure.

Transfusion just finished. So far no problems. I know he doesn't really see things, but it is such an awesome feeling the few times Hayden has opened his eyes.Prayers were heard today because God calmed my nerves and eased my pain. I also didn't realize it, but our nurse snuck in at some point and turned down his oxygen. One thing he needs to shoot for is breathing at "room levels" of oxygen which is 21%. For the past 36 hours, he has been at 50%. However, it is down to 40% and he is doing great!

Hopefully he will get that good night of rest with minimal discomfort, continue to drain the fluid, and be ready for the CT scan in the morning.