Grant's Journey

The countdown is on and it really hit me yesterday. Four weeks from now, we will be on recovery day one, surgery completed. Four weeks is such a short amount of time. I have been combing the internet and my heart mom friends for information in the last few weeks. I have been listening to every Fontan story I can find in hopes of gaining some information about what to expect during that surgery and its complicated recovery time. This is both a good thing and a bad thing. I feel like I am going into this with my eyes wide open, but at the same time, if I have learned anything in the last month of information gathering, I have learned (again) that EVERY child is different and with that knowledge, the whole thing is as unpredictable as it always was. All of the risks are real (I have seen kids with just about everything!) as are all of the success stories. Some recoveries have been laden with complications and some kids have been home in a week. We have been busy distracting ourselves so t...

We are safely home, at least for now. I have to say that this cath recovery has been unlike any other cath recovery. Usually, I expect a slightly grouchy kid coming out of anesthesia which wears off while he sleeps it all off and then by the following day, it is like nothing ever happened and Grant is back to normal. Grant anesthesia recovery was harder this time around in the hospital and our home recovery is also really difficult. He was playing and happy when we finally got out of the hospital Monday night, but by Tuesday night, he had a high fever, wouldn't walk, looked really puffy, couldn't keep anything down, and was clearly miserable. WHAT?? Of course, this all developed after we were giving permission to travel home, so we sat at home waiting for Dr. Cowley's office to call us back yesterday. With his fever hitting 102, I knew we were in trouble. A fever is an indicator of infection in kids, but in a kid without a spleen, a fever (especially that high) usually indi...

My heart is full of gratitude today. I went into this telling myself that it was no big deal, it was just a cath, yada yada. Of course, meeting this morning with a new heart family who's little girl went in for surgery this morning at the tender age of 7 days old helped that mentality. But, the overwhelming emotion that hit me the second I walked out of the cath lab, with GOOD NEWS made me stop and think. This is a big deal. This is a HUGE deal!! We are the lucky ones. Grant is heading into his FONTAN surgery. The LAST big planned hurdle on our quest for a normal childhood with our miracle. We made it. There are so may sweet angels who did not get this chance and I think of them today, as I feel their presence in these hospital wings. Praise be to God for allowing us to raise this little boy and for giving him such a courageous spirit to fight through all that we have asked him to do. Now, onto the results. Grant's cath and echo were finished in about 3.5 hours. Dr. Cowley told...

We handed Grant over at about 7:45 this morning. He had a nice dose of Versed (LOVE THAT STUFF!) and was then as happy as a clam! I love to see him on his drugs because it makes handing him over so much easier. He was blowing kisses and giggling, and then he was pretty much glazed over and sleepy. Not too shabby. Dr. Cowley is performing the cath and I feel very safe knowing Grant is in his care. They will do an echo while Grant is intubated and sedated and we will have a pretty good idea about the shape of his heart, pulmonary and cardiac pressures, and his ever so worrisome pulmonary veins. Thanks for checking in on us today! We really appreciate the prayers and concern. We will update in a few hours when Grant is finished and we have had time to meet with Dr. Cowley and Dr. Williams.