11 November 2011


I noticed that I never updated on how things went in the hospital and after we got home.

Nathan was discharged from the hospital on October 26 - just a week after having surgery. Everyone said he did amazing and we agreed! On the 4th day of being home, Nathan's started throwing up and was pretty lethargic. I thought he was getting sick but since he had a follow-up appointment the next day (10/31), I knew that we would get more information then. At the appointment they took a chest x-ray and found that his right lung was completely filled with fluid. They immediately admitted him into the PICU so that they could insert a chest tube and drain the fluid. I was glad they found out what was wrong but was sad for him and nervous that this would be serious. Thankfully, this is somewhat common after having the Fontan so that was a bit comforting.

Nathan is on a blood thinner so they had to check his levels before performing the procedure and it came back as outrageously high (they want his level between 2.5 and 3.5 and it was 13). They initially thought it was a lab error so they repeated the test and found it was in fact, NOT a lab error. So, they started him on vitamin K to get it back into range. By the next afternoon (11/1) they were able to insert the tube. After doing so they got 1 liter of fluid out! Obviously, Nathan felt much better after that. The chest tube continued to drain fluid for about 4 days or so. On Sunday, they removed it and he was discharged that afternoon. We took him back for a follow-up yesterday and there is no reaccumulation of fluid!

I can't tell you how wonderful it feels to be on this side of all of his surgeries. I realize Nathan's always one to pull a fast one and we could be back in the hospital at any time but there are no more planned surgeries and that feels great! I need to schedule his one year follow-up MRI of his brain so the surgeon can see how that's doing but I'm hopeful there's nothing going on there. Infectious disease said that the likelihood of it reappearing is like lightening striking twice. Now that he's had this final procedure, he is safe for those types of infections since all of his blood is being properly filtered just like a normal-functioning heart. Yay!

Thanks for all of you who prayed for Nathan and us as well. I just don't say that but I am truly thankful because I know that without your prayers, we would not have gotten through this in one piece - they really have sustained us. We are so thankful that you have played such a role in our lives. May you all be richly blessed.

19 October 2011

It Went Well!

Everything went well with surgery! He is up in the PICU now and is sleeping.

Thank you so much for praying! I'll update as needed.

18 October 2011

Heart Surgery on Wednesday - the Fontan

I just wanted to update everyone on the plan for Nathan's surgery on Wednesday. He will have surgery in the morning at 7:00 (Central Time) so we need to be there at 6:00. They expect the surgery to be 4-5 hours long and we will be getting an update about every hour. Afterward, he will go up to the PICU and then we will be able to see him. They expect he will be in the hospital a week. Apparently with this surgery, there is a lot more drainage so he will have his chest tube in for the duration of the week. Once the drainage subsides and they can remove the chest tube and determine that everything is going well with his heart, he will be discharged. The surgical nurse said this takes about a week but everyone is different.

I want to thank you for your prayers! We really appreciate them so much. I will post an update after surgery to let you know how it went.

19 January 2011

A Long Year

We have good news! As of Nathan's last MRI at the end of December, his brain abscess is finally GONE! He has 1.2cm of scar tissue left which is unchanged from his MRI in October. He is scheduled to get his line out tomorrow morning. He has to be sedated for it but it isn't supposed to take long. Up until this afternoon, I didn't really think he would get it out. He has a rash on his chest which his pediatrician treated as ringworm. However, we went to the dermatologist this afternoon and she believes it is either eczema or a fixed drug reaction. Neither are infectious so she wrote a note to the surgeon stating it was ok to pull his line. In addition to that I've also been sort of "trained" to wait for the other shoe to drop regarding Nathan's health. I know that sounds pessimistic but I feel like there's always something. Finally, I'm believing that this aspect is over and we'll be able to move on from this.

Tomorrow marks 11 days shy of one whole year that he's had a line in. He had his brain abscess drained February 1st of last year. Believe me when I say it definitely felt like MORE than a year. It was hard and exhausting and mentally and emotionally draining. But I'm definitely looking forward to this year. A year filled with less health issues and maybe more fun. We're looking forward to doing things we haven't been able to do. Nathan hasn't had a real bath since March! Since his line is in his lower abdomen and he can't get it wet, we've had to sponge bathe him. Looking forward to real baths! Looking forward to taking Nathan to the beach for the first time this summer! Looking forward to sleeping this year!

Thanks so much for all of you who've prayed for us!