Discharged Today

Levi is having a much better day so we left the hospital. We will continue pain meds for a few days at least. Anjie didn't know if it was smart to make him ride 2 hrs yet so we are staying up here tonight. You can see he's already figured out how to sit and he's playing around like his normal self again. He is getting very frustrated that we won't let him try and stand though. Its going to be an adjustment. Ill try and check back in tomorrow. Thanks for all of the contacts though!

McCumbees 

Overnight update

Levi had a better night. He was restless but slept from 11-4. Then he woke up screaming in pain. It has been about 8 hrs without pain meds so that's understandable. He got settled back down around 5 and is sleeping again now. He is off of O2 and they even just disconnected all the vital trackers. So at this point we are just making sure he can get by without morphine. That was last dosed 2pm Friday. So we will likely ask for discharge this evening or wait until first thing tomorrow morning.
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Day 2 Update

Today was pretty rough. Levi seemed settled this morning early but as the day went on the pain really ramped up. The only thing we could do was keep asking what meds he was allowed to have until we exhausted all the options. Its really difficult for us as parents to make these decisions on what is right. The nurses and doctors are doing a fine job at empowering us and giving us advice. In the end we just try and do what we think is best and hope that we aren't allowing him to suffer too much. At one point he screamed and writhed for about 20 min until we had no choice but to give him morphine to calm him enough to rest.

This evening was definitely better. He actually wanted out of the bed a couple of times. Anjie held him in a chair some and he spent time in his wheel chair watching youtube kids videos haha. Whatever he wants right now we will pretty much do. We still have no idea when we will go home. I think he has to be off O2 overnight and not take meds like morphine for sure. We are praying for rest for all of us tonight and hopefully staying off the O2.

Thanks for all the many contacts and prayers over the last two days. We can't answer them all but we do read and appreciate them!!!

Levi had a rough night...

Those smiles we got yesterday didn't last and Levi was hurting bad overnight. He had to get a lot of meds to stay sedated. He was waking up writhing in pain otherwise. Anjie was up all night so now she's leaving to get some sleep while I stay the day with him. Really there isn't much to update. It's all about pain and oxygen for Levi so those are the big goals to get out of here. We hope to only be here through the weekend. It's hard even imagining taking him home like this.

A few smiles

Levi gave us a little bit of happiness tonight to cheer us up but mostly it was rough. He is sleeping on and off in short spurts now but waking in pain and needing to receive meds often. Its the worst pain we have seen him in. So please continue to pray. We will try and keep everyone updated tomorrow. Both legs are casted like the picture above. He wants to roll around in bed but its not happening. Anjie and I are taking shifts now so hopefully we can stay fresh. Thats for all of the contacts from everyone. Hopefully we are able to keep up with everyone.

Surgery update

Just a quick update. Levi did well in surgery. He is currently still waking up. He is definitely in a lot of pain. We will be staying at unc at least a couple of days. I'll try and give some more updates later. Anjie is with him so please pray for her as she's by his side in the recovery room.

Levi Update - Surgery Tomorrow

Sorry but it's been a long time since we last posted. I just sort of wanted to send this out as a test post and give everyone a heads up to please pray for our family. We have been through a lot of surgeries but this one feels different. It is more of an elective surgery but we feel it is very necessary to give Levi the best chance at one day walking. We have known for a while it was going to happen and that means we have had way too much time to think about it and worry. 

Tomorrow (02/08/18) around 830-9am Levi will have corrective surgery to both legs. His left leg is rotated in about 10 deg and his right leg is about straight. Normal would be an outward rotation of about 30 deg. Levi's left foot is also in need of some minor reconstruction. He has been trying to take steps for a while now. Although he can push himself fairly well in a gait trainer his legs cross over too much to get to the next level. So basically in the end he will have both feet rotated out to a more normal position. We are assured this surgery is not as bad as it sounds but that doesn't really help a parent feel any better. He will have full leg casts on for about six weeks before he gets walking casts. Those that have been around him lately will understand how much he loves to crawl all over and stand supported on anything he can find to hold onto. So this will be a major change in our lifestyle for a couple of months to say the least.

Please pray for the pain to subside fast, for the surgeon to have steady hands and everyone involved to do what's right for Levi in the recovery.

Thanks!

McCumbee Family