Grant's Journey

Cheering on the family "Minute to Win It" games... We have a lot to catch up on since we got home from Grant's cath! First off, I have not had a chance to express (since Kyle wrote the last update) just how grateful we are for how well things went. We were literally shocked at the results considering that just before that, we were told that the state of Grant's veins left us with almost no other options for his care. What a relief we feel now. Whether things were really that changed in three weeks or not, I prefer to recognize the wonderful hand of God in our lives once again and His ultimate power to heal. After Kyle posted about a new possible surgical option (the AV Axillary Fistula) for Grant our primary cardiologist came by to talk to us in our room. He told us that he would really advise against the fistula procedure because in his opinion, it puts too much strain on Grant's single ventricle. We were again told that he would not qualify for the Fontan as t...

Allison is holding Grant while he is recovering from the anesthesia so dad gets the opportunity to update the blog. After only 1.5 hours from the time we left Grant in the cath lab did we get the page to go down and talk to Dr. Cowley and the fellow. Everything Dr. Cowley had to tell us was great news. First, the procedure was so short because they didn't have to do anything - no balloons, no stents. The width of his arteries at the scar tissue measured 5 mm where everything else is 7 mm so there wasn't nearly as much narrowing as was perceived from the echo Grant had 3 weeks prior. The other good news is that the pressures in the arteries were still well within the normal range and right where they should be. This news was happily received and much better than we were expecting. Since no work had to be done with ballooning and placing a stent, Dr Cowley had some to explore what else might be happening inside that little mystery/miracle son of ours. Time was spent analyzing his...

We arrived at 7:30, got Grant back to the cath lab around 9 am and now we wait. It is nice to know that some things are predictable. Our favorite hidden alcove was empty as usual, the hospitality cart came around at the same time as always, and Kyle was able to get his chocolate milk from the same wonderful lady. On days of worry, it is nice to know that some things just don't change! If they are able to place the stint, we will be around 3-4 hours. He will be done sooner if they can't get the access they need. Grant was pretty grouchy this morning. No food and lousy sleep will do that to a little boy. At least he flashed a nice grin just before they took him in. Thanks for all of your well wishes and prayers today. We truly appreciate your support.

The countdown is on to Friday's procedure. I don't know what it is about this cath, but my nerves have been in full force. Maybe it is because this cath was unexpected. As I have explained to friends, the cath itself doesn't scare me at all. A cath is considered surgery, however it is a very minor procedure comparatively. Dr. Cowley will take a small catheter and enter through Grant's neck weaving the line down until it is directly within his heart. They will look at his blood flow by injecting dye in his veins and watching how the heart works the blood through. They will attempt to remove scar tissue from his Left Pulmonary Vein, balloon the artery, place a stint to keep the vein open, and investigate the damage to his pulmonary veins. They will measure all of the pressures in his heart. We know that Grant might have rhythm problems in the cath lab and that there is always a risk for blood clots and stint problems. But we really don't expect any complications. Gran...

We are finally home again after what turned into a long hospital day. I wasn't expecting anything major to happen while we were down...mostly just a routine check up right?! Unfortunately, we got both good and bad news. Good news is that Grant's heart function is looking good. His ventricle continues to have decent squeeze and his valve leakage is mild. Bad news is that the patch that was placed during his Glenn to try and enlarge his very small left pulmonary artery hasn't been as successful as hoped. From the looks of things, his left PA now has some additional scar tissue from the last attempt that is making the artery very narrow. We will get a fast pass now to the cath lab where Dr. Cowley will see what magic he can work. The hope is that they will be able to balloon the artery and place a stint in hopes that the artery will grow with increased blood flow. In reality, I know that the cath lab is not my favorite place on Earth, but Dr. Cowley is very good to make sure ...

It's official, Grant is on the move!! He has figured out the whole crawling thing and though he is slow and quick to tire, he is moving! He lacks confidence, so he still turns around frequently to see if we are paying attention to him and praising his efforts, but he can make it across the room to get to what he wants pretty well! I think with another month of practice, he will be all over into everything! I am very proud of Grant. We have had a rough month around here. I came down with a cold and despite my best efforts, Grant picked it up too. His turned into a nasty bout of croup that has drug on for weeks. With his body already down, he became even more susceptible to junk and got another round of stomach flu. We kept him out of the hospital and off of IV's this time, but he dropped a precious 9oz overnight. We work so hard to keep that weight gain, so any setback is tough to take. He is back to his 19lbs 2 oz place. Luckily, I think he is finally past all of the germs and ...

Anniversary day today! One year ago, we held our breath, said a prayer, and took our sweet little boy out of the hospital and HOME for the first time ever. I was scared out of my mind. It was the first of many sleepless nights, worries about medication dosing and timing (he went from 13 meds given at 6 different times a day and finally to our current 4 meds given 2x a day.) and worries about whether we would make it to the next surgeries. I am so glad to say that we got it figured out, and have been lucky to avoid lengthy hospital stays for the most part since! Happy Homecoming Grant! Today it would sure be nice if you would celebrate it by sleeping through the night, but since you have come down with a pesky case of croup, I will just be glad we are at home!