Home Sweet Home

Guess where I’m blogging from? Home. Yep! Home. Can you believe it? Our God is so cool! A little over 72 hours ago P had heart surgery and now we’re home! Awwww. It is glorious to be home. So here’s what we’ve been up to these last 40 or so hours…

We were released from the ICU around 11ish Friday morning. We received the most incredible care on the floor. By the end of day 1 I was thinking our odds of being moved to the general floor the next day were slim to none. Pierson was tired and in pain and having a hard time walking. It was hard. But – the next morning we woke up and it was like we had a whole new kid. He progressed so much overnight (because of the prayers for sure). I slept on the foot of his bed that night. I didn’t want any test to be done, lab to be drawn etc without me being there. It’s not that I didn’t trust the nurses, it’s just that if he woke up I didn’t want him to be scared. We have a stud, he did great with everything that had to be done during the night.



By the next morning the ICU hospitalist came in and said he thought we were ready to move on up to the general floor. Then we met with the dietician who made a few dietary recommendations for P – as it turns out he’s a bit anemic. Who knew. There were a few other things we needed to do first… like pull his central and arterial lines and remove some IV’s and tubes. Holy cow. That central line is forever long.

The incision across his shoulder blade is how they got to his heart. The tube coming out of his chest in the chest tube. Please pray for perfect healing of both of these incisions


Right before pulling his central lines and arterial lines. P is a stud.



We could not believe it when they pulled that huge thing out of our little boy! It hurt but he did great! They also had to remove the arterial line which was really… um… have I mentioned our kid is a stud? I think I would have had a complete meltdown if that were to be me in the bed. They got a wagon for him to go upstairs in and he needed to walk to it. He was so not up for that but he soldiered on. It was only about 10 feet but it must have felt like 10 miles for him. So up we went!


Last picture in the ICU







 Once we got upstairs we got settled in, ate a little lunch (P’s first real food in 3 days!) had some visitors and then P was down for the count… for 4.5 hours! He woke up about an hour before his best friend Jack and his mommy arrived to visit. They played together with cars in the bed for a little bit and P pretty much laid there rolling the cars around. Then P asked me to help sit him up and said "Jack! You want to ride in my wagon?" So we loaded the boys up in the wagon and rolled them all around the floor. Best friend therapy was the best therapy we could have had for P.  

Jack and P playing in his bed on the general unit



The boys looking at the awesome train mural. Little boy heaven!



 After Jack and Christi (his mom) left P rested for a while and then we had round 2 of visitors. My aunt and little cousin came, my parents also came by and then my director of nursing and her husband came by (bearing gifts that included a truck sticker book, Thomas book and a new UNT football shirt for the 2011 season might I add) and then Pierson got to eat his second meal, mac-and-cheese. He wasn’t eating much but he was eating and it was staying down (which can be a problem after all the anesthesia and surgery meds) He was in heaven. He kept sliding down while feeding himself in bed and we had to keep picking him back up. Luckily my director of nursing was a congenital heart unit nurse for a very long time and she knew how to do this trick with a pillow to make him sit up and relieve pressure from the incision sight. Genius! A little later that night we gave P his first bath on our own since the surgery.

I will never take a run-of-the-mill bath time for granted again! Washing his incisions caused pain so that wasn’t fun, we couldn’t get the places on his wrist and shoulder that had pressure dressings wet, we couldn’t sit him down in the bathtub or fill the tub with bubbles as usual and he couldn’t understand why and he was getting really tired by this point so it resulted in a full blown meltdown which freaked Jeff and I out because we didn’t want him to raise his blood pressure. Whew! That was harder than I remember bath time ever being. We all slept really well that night.

The next morning started with a blood draw, then we went on another wagon ride to x-ray. The x-ray assistant couldn’t understand why he couldn’t raise his arms, especially his left one up for the x-ray. It’s because he just got sliced and spliced back there lady. Finally the real x-ray tech came out with the same spinning light ball thingy that Dr. Laird had in echo so he could raise them up a little bit. Pierson has been very guarded with his left arm. He tucks it and carries it close to his side/front as if he had a sling on it. Here’s a pic of his incision. On the way back from x-ray we ran into Kathy, Dr. Mendeloff’s nurse practitioner and she said she’d be up to see us later and that we could probably go home today. WHAT?!?! WOOOOO-HOOOOOOOOOO!!!!!! We stayed cautious though incase it didn’t happen so we wouldn’t be disappointed. They said 3-7 days in the hospital and we were on day 4 so we were defiantly in that window. Pierson was the best little patient. Not once did hey say the phrase "I want to go home". We told him we would spend a few nights at the hospital and we are sure that God just helped him have peace in his heart about that.

He was pretty tuckered out after that so he went back to bed. Pierson had asked about his little "girlfriend" Bethany pretty much first thing when he woke up that morning and Bethany’s parents sent a video to Jeff’s phone for Pierson. It was Bethany all dolled up for ballet class saying "I hope your heart feels better. I miss you come home soon. I love you!" Pierson got the biggest smile on his face and we think he even blushed a little!

P watching the video of his little girlfriend!

P's Beads of Courage necklace. It tells quite a story!

Pierson took a pretty serious nap after that. Slept through medicine, blood pressure and vital check and everything. Later that day Dr. Laird came in and said that the chest x-ray, blood tests and P’s activity level all looked great and we could go home. WAH-HOOO!!!!!!!! Praise God! I think we would have grabbed Pierson and sprinted out of there right then if we didn’t have a sleeping 3 year old, luggage, balloons and that pesky discharge paperwork to take care of. We also asked Dr. Laird to explain in detail a little more about what Dr. Mendeloff had said about Pierson’s aorta. He said that a normal coarctation is present on an otherwise well developed aorta. As it turns out, Pierson’s aorta in the area of the coarctation was not normal either. It was small and underdeveloped, which is why Dr. Mendeloff had to remove more of the aorta than just the coarctation. Dr. Laird said he was suspicious of that during the echocardiogram and that was why he had ordered the CT Scan. We had wondered why. It’s good to know! Another way God has provided for us.

While we got ready to pack up the child life specialist came in and gave us our final beads for Pierson’s bead of courage necklace. Each bead represents a milestone, procedure, test, surgery or act of courage. Pierson ended up with a pretty significant necklace. They tell the story of Pierson’s journey through this. We’re lucky to only have one necklace. Some families have several. We pray that this is the only surgery or procedure Pierson will ever have to have again in his very long life and that our bead collecting stop here. It will be cool someday for him to show this necklace to tell his story. We know we’re lucky to just have a coarctation. Of all the CHDs you could have this is the one you want. It usually requires only 1 surgery and then they can go on with life as normal after they are recovered. We met several families in the Congenital heart surgery unit who are in for 4^th or 5^th visits or who have been there for months. Months. Complete misery. Pray for those families as you continue to pray for P.

Now that we’re home it feels so much better. Pierson is not by any stretch of the imagination better yet. He tires easily and guards his left side of his body. We’re washing everything we use in hot water to kill any germ that might make its way in to our house. Loading Pierson in the car is harder than you might think. You can’t pick him up like you would a normal 3 year old to put him in the car seat. You have to make a bench with one arm/hand for his tooshy and use the other hand to support his head/neck, avoiding his back and incision all the while. That being said, we’re not going any where for a while. Just as well. It will give Pierson a chance to recuperate and not over do it.

Our last picture before being discharged! Praise God!


We're outta here!



Last night was rough. He woke up every few hours screaming that he had to go to the restroom. He did, then he went back to sleep. I don’t know why that was? Lingering lasix? Whatever. He’s home.

Our challenges now include building up his stamina back up and making sure he chest tube sight and incision heal and are kept clean and properly cared for. Being in home health I’m a bit of a wound care freak and have seen worst case scenarios so wounds concern me. Pray Pierson’s wound is free of infection and heals beautifully. Pray that Pierson’s heart heals correctly. Specifically we are praying that no scar tissue forms on his aorta. "Realistically" we should be hoping that little scar tissue forms, but we’re praying that God would make it where no scar tissue would form at all. We have faith.

We have a follow-up cardiology appointment soon. Keep praying for P. We’ll keep updating here on progress, milestones he is reaching in his recovery and requests. Please keep praying for our little boy! Surgery is over but we still have some miles to go. We look forward to the day when we can post that Pierson has been released from medicine by his cardiologist. We can’t wait to put up his soccer pictures on this blog. That’s in the future though… today we’re praying for our needs for today.