And We're Back

I know many of you already know what's been going on with Aiden but I am more or less writing to document our journey over the past week.  After 2 return visits last week to the pediatrician we were admitted into the PICU at St. Francis on Friday afternoon.  When I had arrived at the ped office Friday, my impression was I was just there for a weight check.  I had been on that Thursday and Aiden hadn't gained any weight.  After talks with out pediatric cardiologist we decided to increase his milk intake to 3 oz. and add Neosure, which is a supplement to help babies gain weight.  Therefore, I just knew on Friday when we returned that he would have gained an ounce. 

I arrived at the office and unfortunately Ben couldn't go with me because he had gotten a kidney stone that morning and was in severe pain.  When the nurse weighted Aiden I almost died.  He had lost 2 ounces over a day with the supplements I had been giving him.  When Dr. Slusher came in she immediately called Dr. King.  Over the past several days his breathing had increased and that along with the weight loss are 2 of the vital signs of heart failure.  When she came back in the room, she told me to go to the PICU and be prepared to pack your bags and be airlifted to Oschner in New Orleans for surgery.  As soon as I got in the car I broke down. Ben met me at a gas station, hopped in the car with me, and we headed to Monroe.  Even though it wasn't an emergency, we had our friend who is a CECP coach with Ben and full time sheriff escort us to the Ouachita line so we could get there faster. 

Ben did really well until all the nurses started hooking him up tot he machines and poking at him.  Since he was in heart failure, they couldn't get an IV or any blood to come out of his veins and for the first time since he was born we saw real tears coming down his face.  It was horrible to be that helpless.  Another Xray was done and this time it did show fluid in his lungs. Dr. King was out of town but was constantly checking in on us. I just can't say enough about him.  He was immediately started on Digoxin which is for heart failure as well as Lasik which is a diuretic to help the blood flow out of the heart and away from the lungs.  Because his respirations were so high (over 80 breathes a minute), we could only feed him about an ounce every 3 hours from a bottle so he wouldn't aspirate.  Could you imagine how mad you would be if you could only have like a cracker every 3 hours? 

Saturday came and went and he seemed to be doing better. Early Sunday we had another Xray.  There was still some fluid in the lungs but not as much.  Dr. King got back from out of town and made his way up to St. Francis to check on us.  He then started Aiden on medicine to calm his blood pressure and prevent backflow of the heart.  It typically takes 72-96 hours for the heart failure medicine to work so we knew we weren't going home any time soon.  He informed us that Dr. Lucas from Oschner would actually be in town on Tuesday and he wanted us to meet with him to talk about surgery.  Thankfully we were able to move into a room that had an actual door on Sunday which allowed us to get some sleep instead of a space with just a curtain that you close for privacy. 

Monday we repeated an Echo cardiogram to see if the size of the hole in Aiden's heart was still the same  size and it was.  I didn't really expect it to get any smaller since the 10 days when we first saw it.  By the end of the day Monday, Aiden's blood pressure was so good that he got to come off one of the medicines.  I also learned how to give him his medicine since I would be in charge when we got home. His breathing continued to decline to about 50 respirations a minute.  They have never been that low since he was born and some of the time I wasn't sure if he was breathing because I was so used to hearing him gasp for air and being able to see his chest move up and down. 
Tuesday was a waiting game.  Dr. Lucas got tied up and couldn't make it up here so Dr. King released us and we will meet him on his next visit to Monroe.  Him and Dr. King did talk and came up with the same consensus.  If the hole in the heart starts to close within the next couple months, then we have bought ourselves at least a year from having to do any surgery.  If it doesn't and he put on weight, then we will probably have to do surgery.  He forewarned us that the first year is the toughest.  After that, things get easier and you learn what to look for and how to manage the complication.  Looks like we will be seeing Dr. King alot this year.  In his own words, "we are going to give God a chance to fix it first and if he doesn't then we will."

I want to just take a moment and say how much I appreciate all the support and prayers that we received.  Ben and I were seriously overwhelmed and we can't say thank you enough.  We felt all your prayers and believe they worked.  To have gone from being told to be prepared to have surgery this weekend to maybe getting to wait a year can only be the grace of God.  We are so blessed to have such wonderful people in our lives.  Thanks again.

                    Hooking Aiden upto the monitors and trying to start the IV

                                                       Finally getting to eat more

                    We had to go home and get the Sleep Giraffe. Clearly, it worked!