As you all know Connor had surgery to correct his Chiari Malformation on December 14th. I wanted to let you all know about our time in the hospital and how his recovery has been. This will probably be a long one so grab a snack.
We were told to check into Cardon Children’s Hospital at 9am on December 14th. Of course, the one random day it decided to rain pretty hard was the day we were to drive 50 miles across town to the east valley. Traffic totally sucked and it took us over an hour to get to the hospital. We finally arrived (only a few minutest late, too!) but as we were signing in with the security desk I got a call from the surgeons office that Dr. Moss was also stuck in the crappy traffic and Connor’s surgery was being pushed back to 1pm. I was annoyed because I hated that Connor couldn’t eat and I was afraid he’d get really irritated by that. But he actually did so good and we were able to keep him distracted. Our sweet friend Crystal came to the hospital to be with us all day. She was so good at keeping Connor distracted and helped keep us in good spirits.
Finally it was time to get back to the hospital. We got checked into the pre-op area. First step was height & weight check and vital signs. He rocked it, of course.
Then we waited to meet with the anesthesiologist & talk with the surgeon again. The nerves were definitely setting in but having Crystal there was such a good distraction for all of us. My dad also came to the pre-op room to spend some time with Connor before he went back to the OR. The Child Life specialist brought a mask for Connor to put stickers on and he was even able to put chocolate scented oil on it! She brought a wagon over for him to use to ride into the OR. We used it beforehand for a few laps around the unit.
Connor was taken back to the OR right at 1pm. This was super hard because it seemed to happen really quickly and abruptly and I didn’t really have time to prep Connor for when we would leave him. I hated seeing him crying and reaching for us as the nurse took him back.
Less than 2.5 hours later the surgeon came out to tell us how beautifully surgery went. He mentioned that he was so glad we decided to do the surgery because “things were very tight back there”. He also told us Connor’s skull was super thick and a portion of it was shaped incorrectly and that was likely causing compression on the brain stem. He said the procedure could not have gone better, there was very minimal blood loss, and his incision closed up nicely. Phew. Praise God for such a successful surgery!!!
About 20 minutes later we were allowed to see Connor. He had a really hard time waking up from the anesthesia. He was experiencing some delirium and was absolutely inconsolable. He was screaming out for me even though I was holding him in my arms. I couldn’t get him to make eye contact with me. It was scary to see him this way and not be able to help him. He would settle for about 90 seconds and then begin to scream and thrash around. During this time his O2 sats were dropping down to low 80’s & I overheard one of the nurses suggest re-intubating him. I silently panicked and just prayed that we wouldn’t have to do that. Thankfully after about 2 hours in recovery Connor was stable enough to transfer to his room on the regular floor, not the PICU like we initially thought. Praise God!
We got Connor settled into his room & he slept for about an hour. My mom, Lindsay, Noah, Gavin and Gwynn came up to the room to see Connor for a few minutes before leaving for the night. It was hard for me to say goodbye to Noah but he did so well, I think he knew that Connor just needed to rest. And I’m sure he just couldn’t wait to get back to my mom’s house to see “my dog”.
A little later Connor got a nice visit from Kevin, Jane & Cynthia. They brought the sweetest basket of yummy snacks and cards from the Sunday School kids. Connor rested most of the visit (after vomiting the turkey sandwich I let him eat :/) but just when we thought he wasn’t awake enough to be listening he blurted out that he would be Cynthia’s boyfriend if she wanted! 🙂 He must be feeling ok!
Around 10 that night I sent Abe over to the Ronald McDonald house to get some sleep and Connor & I settled into his bed for the night. Around 1130pm I woke up and saw that Connor’s IV had come completely out. I was so bummed because he still had 3 more doses of IV medication and he was still getting pain medication though the IV along with IV fluids. So I knew a new IV would have to be started and I knew Connor would not be happy with this! I notified the nurse right away. After a pretty horrific experience in the treatment room (and the worst attempt at starting an IV I have ever seen!!! I’ll spare you the details) the new IV was finally placed and Connor finally got his dose of pain medication that he so desperately needed.
I don’t even remember the rest of the night (I think even I have some PTSD from that treatment room experience!) but I think Connor got several hours of uninterrupted sleep.
Abe came back to the room early Tuesday morning just in time to see Lindsay, the NP. She was impressed with how well Connor looked. She was encouraging us to get him walking and eating/drinking throughout the day.
My dad also stopped by tuesday morning for a bit.
Then we got Connor out of bed and went downstairs for some crafts.
Even though he looks miserable he actually really enjoyed the craft and I think getting out of bed was good for him.
Connor took a nap after craft time and by midday Tuesday he was already taking pain medication by mouth and tolerating eating and drinking! Both were milestones he needed to reach in order to get discharged from the hospital so we were super proud of him!
That evening he had several visitors. His cousins, Auntie Lindsay & Uncle Adam, my mom & Noah, Crystal and even Mrs. Garretson- Connor’s kindergarten teacher! She came all the way from Anthem to visit with Connor and bring him gifts & cards from his classmates!
He was so happy to see Mrs. Garretson & it meant so much to Abe and I that she drove all that way after a long school day to see our boy. She is the sweetest woman and we are so thankful that Connor ended up in her classroom this year.
Tuesday night was much less eventful and Connor got some pretty good sleep.
When Dr. Moss came in to see Connor Wednesday morning he was pretty surprised to see how well he was doing. After a few questions and some instructions for managing his care at home Dr. Moss gave us the go ahead to bring Connor home! We were elated!!! We knew he’d rest & recover better at home and we so badly wanted to get him there. After a quick visit with the hospital physical therapist the nurse came in with discharge paperwork & we were on our way out!!
Connor was invited to stop at the lobby to see Santa before we left the hospital. Connor got to sit with Santa and then pick out a toy that the Mesa police officers & Mesa fire department brought for the children in the hospital. It was so special and I’m sure he will likely never forget seeing blue Santa.
When we got home we opened the door to the sweetest surprise. Cari had the apartment decorated for Connor & stocked our fridge with fresh fruit & veggies, dinner for the night & lots of snacks. I cried. The love we have felt from our friends and family has been so overwhelming. We are so blessed.
Wednesday night Abe and I put the boys to bed and I think I was finally able to relax. Here we were at home just 2 days after Connor’s major surgery. Wow! God is good! I felt such peace.
And then…
I went to check on Connor before I went to bed. The boys are currently sharing a bed while we’re at the apartment & I think they missed each other while C was in the hospital. They were sleeping so closely & looked so sweet. Of course I had to take a photo.
As I left the room I looked closer at the photo and almost died! Connor had ripped off the bandage and steristrips!!! The steristrips were supposed to stay on until we saw Dr. Moss for his 2 week visit! Abe and I kinda panicked.
After a quick call to Dr. Moss on his personal cell phone (sorry Dr. Moss!) we were reassured that Connor’s incision was closed really nicely with internal sutures so we didn’t really need to worry about the steristrips being ripped off.
Phew. Ok. I really didn’t expect to call the neurosurgeon less than 12 hours of being discharged but ya know. It happens.
The next several days Connor just continued to impress us with how well he did. We were giving him pain medication (kinda) on a schedule but he very rarely complained of any pain. He is a rockstar!
The week after his surgery he was already back in therapy. He saw his occupational therapist on Wednesday (9 days after surgery) and she was already commenting on his balance being better than ever! She has been working with Connor since March so she knows him really well. The first visit he had with her post surgery he was able to walk across the balance beam twice without falling! This is a huge success for him, especially since it is so soon after surgery! (Dr. Moss doesn’t expect to see any real progress for about 3 months!)
Connor had his 2 week post op appointment last week.
We met with Lindsay, Dr. Moss’ nurse practitioner. She was really happy to see how well Connor looked and felt. She informed us that Connor still has playground and PE restrictions until he is 6 weeks post surgery. We really want to keep Connor from falling and causing a problem with the incision. She wants to see Connor back 3 months, 6 months & 1 year post surgery and then we will just see them annually! Unless Connor starts to have headaches or some of the same issues they don’t even need to do an MRI for at least 1 year! I was so relieved to hear her say that we shouldn’t have to put Connor under anesthesia for an entire year! Praise God!
So, as recovery continues and as Connor continues with therapy we are hoping to continue to see improvements with his balance, endurance, & speech. We hope to keep him headache free & just hope to see a lot of progress over the next year. God has been so good to us during this time & I have hope in Him that things will really progress nicely for our sweet boy!
Again, thank you all so much for all of the love and prayers. We could not have done this without all of you!
Big hugs!
Renae
So happy for your successful surgery. Thank you for sharing. Sending prayers for continued improvement!