I’ve been a bit MIA here on the blog. I posted last on bingo day, Wednesday, and it is now Sunday night. So much has happened since then, but I just didn’t take the time to write it all down.
Thursday morning, Asher slept in until 9:00 (well after being woken up at midnight and 6 a.m. for his meds, vitals, and pleural caths drained). I had moved him in bed with me at about 3:00 in the morning, and he seemed much more comfortable in the bed by me than in his hospital bed.
The cardiologist came in and said that she had seen something on the echo that may be a cause for concern. Basically, where the blood comes back into his heart from his lungs, the flow may be a bit too high. They can’t measure it great on an echo. They were wondering if that might be why the fluid is still going so strong. At that point, his total fluid numbers for the day were over 200 ml per day. She said that because of this, they wanted to do a cath on Tuesday if his numbers hadn’t gone down significantly. In the cath, they could measure more accurately, and the could also increase the size of his fenestration, the pop-off valve that they put in the Fontan to help if the pressure got too high. I asked what would happen if there was an issue in the cath and they fenestration didn’t help. She said at that point they would need to do another open heart surgery to fix it.
I couldn’t believe what she was saying. All along, I had thought that the fluid levels were normal and would just go down, which is what they kept saying too. Asher is finally recovering and doing so much better, and definitely through the worst of the pain and the risk of this surgery. I couldn’t even wrap my head around him having to go through a cath in a few days, nonetheless a surgery. She said the surgery would be about a week after the cath. It all just seemed so risky and so much for Asher to handle. It was a rough day. I kept wiping away the tears so Asher wouldn’t know what was going on, and had to sneak into the bathroom many times to cry without him noticing. Shane was at work all day, and he had a temple trip with the youth (Landon’s first one!) that evening. I wasn’t even sure he would be able to come up, but he left the temple a bit early and came straight up here. I was so glad, even though the second he walked in the room I couldn’t keep in the tears and had a good cry. Shane gave Asher a blessing, and then we walked down to the first floor and outside the building for a bit. It felt good to get outside, and Asher had fun walking up and down the hills with Shane. He cheered us up just when we needed it, and I’m so glad he knew that I needed him to come up.
Asher at the Mario Hills with Shane, and Landon at his first temple trip with his friends Dylan and Sam
As I lay in bed that night with him cuddled by my side, the tears soon wet my pillow as I read through the scriptures and quotes I had tagged under “trials” in my journal. Each one, read over and over, slowly brought peace to my soul and reminded me that we are not in this alone, that Father in Heaven has a plan for Asher far better than our eyes can see, and that He sent His Son just for moments such as these. I knew, like Shane and I have always known, that Asher came to our family for a reason, and that Heavenly Father has been blessing him and sending many miracles around throughout his life. I knew that we just needed to continue to have faith in Him and His plan, to do all that we could to help Asher, to pray and fast, and then to wait for His will to come forward.
The next morning, while it was still hard and I felt myself tearing up at times, I also felt more at peace and knew that whatever Heavenly Father’s plan for Asher was, we would have faith in that, and He would help us get through it. The outpouring of love and support from so many family and friends far and near was humbling and strengthening. We planned a fast for Sunday, and we tried to “cheeryfully go about doing all things that lie in our power”. All we knew that would help his fluid levels go down was to get him moving around more and make sure he followed his high protein/low fat diet. He hadn’t been motivated to get up and move around as much the last couple of days, so I made sure the nurses started giving him tylenol around the clock. That morning, his buddies Carter and Drew came to visit, as well as Stacey with her kids. Asher was excited to have them here, and he walked clear to the garden, all around, and back by himself. His fluid numbers on Friday continued to drop, and we saw him go from 170 ml on Thursday to just under 100 ml on Friday.
Friday afternoon, my mom came up and stayed with Asher while I went home. I went to James’s Author’s Celebration in first grade, where he read me four books that he had written throughout the year. He was pretty excited to see me there, and he snuggled up close right next to me on the grass while he read me his books. I sure do miss my other four kids while I am up with Asher! I took him home from school and spent the rest of the day at home. I took Davis to his baseball game, and since Asher was doing great with Grandma, Shane came and watched Davis’s game too before he headed up to the hospital to spend the night there. My dad arrived that evening, and he drove up with Shane to pick up my mom and to see Asher.
The cardiologist was surprised when she came in Saturday morning and saw Asher’s totals from Friday. She said they would re-evaluate Monday morning if the cath was still needed, but that this was a good sign in the right direction. His numbers would still need to drop more in order for them to cancel the cath, which she thought would still be a challenge, but it was still a good sign. Shane ordered Asher some French toast, and it became his new favorite breakfast at the hospital. It’s been hard to get him interested in eating much of anything! Shane spent most of Saturday up at the hospital. He and Asher had a great time going on a walk to the first floor garden, making Lego guys, doing puzzles, visiting with a dog, and of course, getting more pleural caths drained. I got up and ran with friends, then helped Landon get his stuff packed for outdoor school, and helped Davis with his project on Walt Disney. We also walked down to the Farmer’s Market, and got some ice cream cones. Davis read his joke book that he had got up at the hospital the entire way there and back, asking us all sorts of jokes and riddles.
After Madeleine woke up from her nap, we all went back up to the hospital and brought some dinner. We ate out on the garden, and Asher was happy and walking all over the place, seeming to enjoy all the attention. We all went down to the “Mario” hills, as Asher calls them, and the kids ran and slid up and down them while we enjoyed the perfect evening weather. I kept having to remind Asher not to run or be too wild – we soon had to make a rule that the big brothers couldn’t do anything Asher wasn’t allowed to do because he just wanted to keep up with them! Shane and my dad took the kids home, and I stayed up with my mom and Asher until Asher went to bed. We played a game of memory and had a visit from the Boyntons before he went to sleep. Then, I left my mom with Asher so I could go home, sleep in my bed, and go to church in the morning. It was hard to leave him, but I knew he would do fine with my mom.
Sunday, we all fasted for Asher. I was once again humbled and amazed at how many people are praying for him and even fasting for him. He is one special boy, and with all these people fasting and praying for him, we are reassured even more that whatever the outcome is, it is what the Lord has planned. Asher’s numbers throughout the night and that day continued to be in the low 20’s, with one 28 that made us a bit worried, but then he leveled back down after that. He has been more in the teens since that one. They pull his drains four times a day, at 12 and 6, so he really needs to be in the low teens for the cath to be cancelled.
Asher having fun coloring, texting, and napping with Grandma.
After church, I quickly gathered my items for the hospital, ate some dinner, and drove up to meet my mom and dad. My dad had left after Sacrament meeting to come up and be with my mom and Asher. They hung out with me for awhile, and then Shane came up with his mom and the kids. She had flown in late the night before to help Shane’s brother Kelly and his wife Jessa with their baby, due to be born any day. Asher was excited to see Grandma Malan, and he took her on a tour of the hospital, showing her all his favorite places. My parents left to stay the night at Jake and Stacey’s, and we enjoyed visiting with grandma and relaxing on the Mario hills once again in the nice evening. While we still don’t know what the future holds for Asher, we were grateful for the peace we could fill today as we fasted and prayed for him.
Grandma showed Landon how to do some family history, and Landon and him already found two names for Landon to take to the temple. When Grandma Malan arrived, Davis was excited to have someone else to read all his jokes to.
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