Friday, October 26, 2007
As you can see, his scab had mostly gone by this time and so much of the redness as well. Even the swelling beneath the skin had gone down significantly. It looks really good for less than 3 weeks later! Oct. 15, 2007.
We've been making so many changes in our diet to be more heart healthy and one of the favorite changes has been the reintroduction of fresh home made bread! I have two breadmakers and Josh and Emmy enjoy watching them kneading the dough! We also had a beautiful rainbow over the valley on this day, two weeks after Joshua's surgery. God never forgets his promises. Oct. 10, 2007.
Emmy had watched me put on some makeup before going out with Colby for our anniversary, and a couple of days later she got into the drawer in the bathroom with my makeup bag and got out some eye shadow. Boy, they just grow up at younger and younger ages, don't they? :P And here's a picture of Elayna gumming a feeder with a piece of a banana in it. She LOVED it! She went through three chunks of banana that way, and then slept about 10 hours. So now we have two banana munchers in the house! Oct. 8, 2007.
Posted by Lisa at 9:49 PM
When we left the hospital, Josh still had many bandaids and even his 3 electrocardiogram sensors and wires stuck to his chest. There was no way he was going to let anyone near enough to touch any of those things to remove them. In his mind he equated the removal of sticky gluey substances to a lot of pain. So we figured they'd fall off eventually anyway, and left them alone. Within the first day home he had caught the monitors on things and pulled them off on his own. By the one week mark, the only thing he had left on him was the bandaid over his tube site suture. The look he has on his face here is because I asked him if I could take it off! The answer was a definite NO! It fell off in bed a couple days later. Oct. 3, 2007.
At times during those first few days at home I was beside myself with worry that something would happen, a fall, a bump, an internal malfunction, that I couldn't fix, and the experts who could fix were more than 2 1/2 hours away from us. Gradually we began to see that he was growing stronger by the day and that he was sober-minded when it came to keeping his incision and ribcage safe and not overdoing it. Six days after his surgery he was helping me do laundry in the back room. I left to take some clothes to the living room, and when I came back this was what he was doing - sitting on the ledge of the window looking out over the farm. October 2, 2007.
We were told to be back at the hospital at 6:30 am for Joshua's final chest x-ray. So first thing in the morning I took Josh in the stroller over to the hospital and completely got the run around for about 2 hours before we finally were able to get that done and receive the all-clear. Then we went back to our room and got our things out to the car, and packed up Elayna and JOSHUA! into his seat, stuffed his pillow and blanket in around him, took a Deep Breath as we drove away from the parking lot, and headed north. We were going back home, and we were taking our son with us. PRAISE GOD!!! Sept. 29, 2007.
Josh was released from the hospital on Friday afternoon on the condition that we stay overnight at the Renucci house, which is connected to the hospital, and come back early Saturday morning for a final chest x-ray. So we felt it was best to not keep Emmy with us that night for the sake of keeping Joshua as quiet as possible, so she was sent home with Grandpa and Grandma J. Grandma M headed home to Indiana, and Colby and I set up one big bed in our Renucci house room with Joshua on the trundle bed in between the other two beds so he couldn't roll off or fall out if he got disoriented. We were getting pretty settled in for the night around 9 pm when the fire alarms started going off and lights were flashing in our room and the hallways. So we grabbed the two kids and my purse and headed out! We went down the hall to the stairwell and to the lobby where we saw the firefighters and security guards trying to figure out how to reset the alarm system after a false alarm! We left so fast I didn't even have my shoes on! And they're just Crocs! So we went back to our room and the kids played on the bed for a little while since we were all wide awake after that. Sept. 28, 2007.
On Friday morning preparations started for Joshua to be moved down to the 7th floor regular pediatric unit and out of the Critical Care Unit. That was an exciting idea, one that involved not being hooked up to monitors and having no more IVs, but that also involved removing his drainage tube from his chest. Neither Josh nor I really understood how awful that was going to be. I knew removing the IVs wouldn't be fun, especially the one in his neck, but I also knew how relieved he'd be once they were out. But the drainage tube was an entirely different ball game. It was traumatic, and painful. But he was promised a trip to the play room after it was over, and as soon as it was out, he was asking to be taken to the play room, so we got through the paperwork and the rest of the preparations, and off we went to the 7th floor! Once we got there, we dropped off our things in the new room and went straight to the play room! He got out of his wagon and walked over to the Cozy Coupe and pushed that around for a few minutes before he got tired. It was exciting to see him playing, and terrifying at the same time! There were germs, and things to trip on, and ways to get hurt, the list went on and on! A few minutes after we got there, Grandma M came with the girls and Josh and Emmy got to play with each other for a few minutes. You could tell they had missed each other. After Josh got tired out and went back to his room to rest, I took the girls back to the Renucci house and Grandma stayed with Josh. The girls took naps and I took a shower, then we came back to the hospital just in time to hear them say Josh could be released that afternoon! Colby came back just about that time, and Grandma and Grandpa J were there for a visit as well, so we all got busy getting things in order to leave the hospital! Unbelievable that he could go through open heart surgery and 2 days later be healing well enough to leave! God is SO GOOD! Sept. 28, 2007.
The day after his surgery, Joshua was sitting up and asking to watch Cars, nibbling on crackers, enjoying his balloons from his great-aunt Linda, and sleeping a lot. He didn't talk much, since his breathing tube had made his throat really sore. He kept his blanket close and didn't cry or complain, just rested. My parents had to head out on their long drive home, Grandpa M and Auntie Raini headed back to Indiana with little Levi, and Colby drove north to work for the day before coming back down on Friday. Grandma M stayed for the duration, and traded off with me between sitting with Joshua and staying with the girls in the Renucci house. Breastfeeding was a trick with a 4 month old in one place and a little boy recovering from heart surgery in another. Siblings could only visit for a few minutes at a time, so on the whole, the two situations mixed about as well as oil and water. But the staff was incredibly helpful, Grandma M was indespensible, and Joshua was so calm and collected. He needed information. And as long as he was informed about what was going on so he knew what to expect, he was fine. He handled it all with bravery and calmness. Sept. 27, 2007.
Friday, October 19, 2007
Despite my reluctance the morning came. I woke up to see Colby laying in the big bed with Josh and Emmy kind of strewn around him. The surgery was early and we just had time enough to get dressed and rush off - no time to dwell or think about where we were going and what we were doing. Even if we did, there just was no room to be upset, Josh needed us to be strong. We were in this waiting room for a while while they did some paperwork and got Joshua his wrist band and hospital gown. We waited there and sang songs and got some "Toad Toes" as the minutes slowly dragged by. The nurse finally came in and gave Josh his dose of "relaxing" meds, then immediately moved us up to the waiting room where families of children having surgeries that day watched their children play and waited for the moment to come when they'd send their babies off to the ORs. They warned me that Josh would seem hyper at first, then would suddenly crash and become unable to keep his balance. And as he played he suddenly started to fall off his chair. I caught him, thankfully, and carried him back to where the rest of our family waited in a separate sitting area. Ours was the most serious of the pediatric surgeries, and they treated us kindly. Joshua sat on my lap and complained about wanting to go play and how he wasn't going to fall off my lap, and generally got sillier by the minute. It was hard not to laugh with him, his giggle was so unreasonable and so contagious! Then, the anesthesiologist came. He had a certain look in his eye, and I knew it was time. I stood up and handed him my son, who went willingly, blankie in hand, with the Dr. through those double doors and down a hallway, and finally out of sight.
He was not wheeled away on a cold, stark bed, he was carried. And later I learned that he was put under by the use of a mouth and nose mask, before any of his IVs and such were done. I was so grateful that he wasn't scared and in pain after they took him away from me.
When we were composed again, they took us to the Meijer Heart Center and up to the waiting room, where we waited. I don't remember much about those long hours, and I can't tell you how exactly I got through them. Except I remember praying and feeling some degree of peace through those prayers. And I remember thinking of all the other friends and family, and strangers who were praying during that time too, and that comforted me. Elayna and Emmy, and little Levi kept our hands occupied. I remember the PA, Kathryn, coming out to tell us how things were going from time to time, that he was going on the heart/lung machine, that his temperature was being lowered, that the surgery was beginning, and that the surgery was ending and how his aorta was the diameter of two pencil leads instead of the size of a man's thumb, that his temp was being raised again, and finally. Finally. that he was off the heart/lung machine and would be out of surgery soon. There wasn't any leaping for joy moment like I thought there would be, just a gradual ability to breathe easier, I guess because the moment one thing is over you realize there is more to overcome before it's all said and done.
When we could, we went up to the 8th floor Pediatric Critical Care Unit and they let Colby and I go in to see him. I thought the tubes and wires would be hard to see, that they would upset me, but the truth was that all I could see was Joshua. And Joshua was alive! And breathing! And Alive! And after only a few minutes he began to respond. He squeezed our hands and he looked at us for brief moments. That was when the biggest moment of relief came, knowing he was back from the brink and on the road home.
I have some pictures of Josh in his most critical state, which are really too graphic to post here. But if someday you want to see them, you are more than welcome to come here to my home and sit with me on my couch and we will look at them together and cry together and praise God together for the life he has re-given Joshua!
We left for Grand Rapids early Tuesday morning with Josh and Elayna in tow. Mom and Dad stayed behind to pack up their things and do some housework for me, and brought Emmy down with them later in the day. We arrived at the hospital and did our registration and pre-op testing out of an enormous playroom. They wheeled in a portable computer and asked questions while we sat and watched Joshua play. They came and put a numbing agent in the form of a cream on both of his arms and taped it in place, then sent him back off to play. 20 min. later they came and took us to a separate room where he never felt them draw blood! Then it was back to the play room again. For each test performed it was the same, easy, smooth, and as pain-free as possible. And nothing scary or painful was ever done in the playroom. Their philosophy is to have "safe" areas, and the playroom is one of those.
After his testing, we met with the surgeon, Dr. Neal Hillman, and the anesthesiologist. During that meeting, we learned that because Joshua's narrowing of the aorta (coarctation) affected not only his descending aorta but also the arch where the corotid arteries branch off, that it wasn't probable that they would be able to fully repair all that needed correcting through an under-arm surgery, which was the plan, as far as we knew, up until that point. What this meant to us was that instead of a soft-tissue surgery not requiring the heart/lung machine, we were suddenly faced with a much more invasive and complicated surgery that would require separating his sternum and putting him on the machine. It was an incredibly hard moment and I really wanted to run screaming from the room clutching my poor little Toad to me. But I couldn't do that, I had to be calm and not lose my grip on reality.
Later we checked in to the Renucci Hospitality House, and tried to settle in for the night, played some games, tried to watch some TV, and gave Joshua a bath. There were moments of disbelief, terror, many silent tears as the children slept and many prayers that night. Sept. 25, 2007.
On Sept. 21 my parents arrived from Washington, having driven for two days to get here. We went to church on Sabbath morning, though we were all so tired, and in the afternoon we drove out to watch the potato diggers at the farm working. Sabbath evening we spent outside watching the kids play in their beautiful innocence. At that point everything in me just wanted to stop time and not go to sleep so I wouldn't have to wake up another day closer to the surgery. Time is kind of a blur for pretty much the whole month of September. Sept. 22, 2007 (thankfully the camera knows what the date was!)
Posted by Lisa at 8:42 PM
Dinner time is usually hectic with three little kids! Here we are having dinner on Friday night with Grandma M and Auntie Raini and Levi; makes for a full kitchen, and a lot of fun! Doesn't Raini look fabulous! Can't believe her baby is only 7 weeks old here! Sept. 14, 2007.
Posted by Lisa at 8:37 PM
Raini and Levi came up with Grandma and Grandpa M for the weekend so we got to see little Levi again! We had such a nice time with them. Here are a few pictures, one of the cutie and his head of hair, and a couple pics of the two babies. Not to far off in size, but WAY different in looks!! Are we sure they're first cousins?! In these Levi is 7 weeks and 1 day old, and Elayna is 4 months 1 week. Sept. 14, 2007.
Posted by Lisa at 8:30 PM