A Very Sad Day

Noah has been re-admitted to the hospital.

I took him to clinic this morning since he has to go in every Monday and Thursday to have blood drawn, get an EKG and an Echo and be evaluated by the Transplant Coordinator. Over the weekend he seemed to be progressively getting sicker. He started breathing very heavy and got very cranky. When I told Allison (his TC), I could tell she wasn't happy. She didn't say much but sat there and held him. Then she said she was going to call the Dr because something just didn't seem right to her. When Dr. Pietra came in he squeezed Noah's incision and it oozed out puss (from a section that looked completely healthy). He immediately said to admit him and get him started on IV antibiotics right away since he thinks it's sepsis (when the infection has spread to his blood and begins infecting his whole body).

Then the real scary part... Shortly after he was admitted, I was holding him waiting for the Nurses to come put in another PICC Line. He started grimacing and an alarm started to sound. This wasn't the normal "hey something is up" alarm. This was different. I looked at the monitor and his EKG was freaking out and his heart rate was 205! A nurse came rushing in but just then his rate returned to normal and everything seemed ok. He still had the unsettling down beat and it was a little more common then you would like to see but at least his heart rate was back to normal. Well... that didn't last long. A few minutes later the rhythm came back and this time he didn't snap out of it. His heart was racing! At one point it was reading 356 beats per minute. Suddenly the room was full of people rushing here and there. Allison came in and I could tell she was worried. They couldn't get him to snap out of it so they had to use a medicine to stop his heart. Then it restarts on its own and causes it to break the bad rhythm it was in. All of this was VERY scary. I just stood against the wall and watched and tried to hold it together. If I don't stay strong I might crack.

After this they ran some labs and with all of that info (decreased kidney function, slightly elevated white cell count, etc) they believe he was having this rhythm over the weekend and might be rejecting. So he probably has an infection and he's rejecting his new heart on top of that. This is scary because they can't treat the rejection if he has an infection. The last thing you want to do is kill off his immune system even more when he's fighting an infection. So, we should have a better plan of attack tomorrow after he has been on the antibiotic a day. But hopefully it works because if the infection doesn't start to clear up fast they may have to cut open his incision again to clean it out. And we can't treat the rejection until the infection is better. *sigh*

They also had a very hard time getting an IV or PICC line. They eventually had to stop trying and will try again tomorrow. So right now he has an IV in his hand and his head. We'll have a NICU Dr come down tomorrow and try for the PICC. They tried so hard that he screamed and screamed. I thought my poor little boy was going to choke.

Please keep Noah in your prayers. He's having a very hard time and had such a rough day. He's so strong and such a fighter but he's really having to go through a lot. We were so happy to have him home and then to have such a set back is devastating. On top of all this, Shane went back to Salt Lake today. He has to keep working to pay our bills and keep our insurance. It's SO incredibly hard to be here without him. When he's here everything seems different and more bearable. Without him I feel like I'm running on empty and hanging by a thread. But we are so happy he was here when Noah was out of the hospital and that he got to celebrate Lilly's 2 yr birthday with us. She was SO excited her Daddy was here. He is such a wonderful Dad. Lilly, Noah and I love him so much. We can't wait to see him again.