May 20, 2011

Max Update

Max is hanging in there. We arrived back to Wichita last night around 9:30. It felt so good to see that little boy again. I missed him! :)

By the time we had gotten there, the neurologist had already been in and visited them with the results. Since I wasn't there, what I'm about to write is just what had been repeated to me and I'm hoping its accurate.

Unfortunately, our sweet Max doesn't have good odds. The doctor gave him 1 in a million odds of a full recovery and a 1 in 500,000 odds of a partial recovery. He said that Max would not have a good quality of life, either way. He would most likely need to be hooked to the ventilator for the rest of his life as well as bed/wheelchair bound, I believe. The results of his MRI and EGG came back with the fact sweet Max is not brain dead, but does have severe brain damage. It was noted that he had 2 strokes effecting both sides of his brain. A spinal tap was done, but results will not be in for another day or so. He has had a feeding tube placed a number of times, but each time it coils in his stomach, so he has yet to eat. Radiology is supposed to come in today to place it, so hopefully Max will get some food today. The ophthalmologist is supposed to be coming by as well. No other tests will be done today, from what I understand. They also have taken him off his seizure medicine, Phenobarb, and we are hoping he tolerates that well.

As far as breathing, he isn't assisting much, but he did have a period of time last night for about an hour where he was assisting regularly. Today they will be weaning his vent settings a little to see how he tolerates it. He's also been moved to a crib bed so Kelci has been able to snuggle with him a little. She still has not been able to hold him! We have been reading books to him and telling him stories. Sean and I are making sure to tell him how great the Jayhawks are! :) We have been by his side letting him know just how much he is loved.

They weighed him again today and he is about 11 lbs. Such a chunky monkey! He does have some swelling around his eyes but overall looks as good as he can. He sure is a cute little boy!

Unfortunately, Kevin and Kelci have a tough decision before them. I ask you to lift them up in prayer and to have peace with the decisions ahead. As a family, we are amazed but the outpouring love and support everyone has give them and the family. The comments, messages, and texts are wonderful! God is amazing and miracles happen everyday! Max is our sweet miracle!!

We love you, Max.

ETA: I've also had people ask where they can send cards or donate to an account. An account has been opened for Max at Credit Union of America. If you would like to donate you can make deposits at any CREDIT UNION OF AMERICA LOCATION or mail checks payable to: BURKEY FAMILY FUND, 711 W DOUGLAS,WICHITA KS 67213. As far as cards, Max is currently at Via Christi- St. Francis or the hospital has a website you can leave messages for Max! THANK YOU to everyone. You have no idea how much it is appreciated!

3:15 update
They tried placing a PICC line but was unsuccessful. Both veins are too little to thread the line through. He was also having trouble with his catheter and they have now removed it and just monitoring it for now. We are still waiting for radiology to come and place his feeding tube. They also are adjusting his vent settings to see if he'll assist with breathing more on his own. He's had some aganol breathing which has been happening off and on since he was admitted. The change in the vent settings is a big step so please pray for great things!

5:15 update
The radiologist has come and the feeding tube is now in place. He started his feeding just a few minutes ago, getting 2 ml per hour, I believe. The neurologists also came in a bit ago and said there was no change except for a little grip on the first 2 fingers and his thumb on his right hand. Nothing substantial, but something worth noting. Thank you for the prayers!!!

10:45 update

Max wasn't tolerating the new vent settings very well so they upped them from 18 forced breaths to 22 breaths. He's also having a bit more agonal breathing. Also, the ophthalmologist didn't stop by and is supposed to do so tomorrow. His right leg is beginning to feel a little "hard" compared to the left leg and we are hoping that we don't lose the IV that is in that leg. He's also getting 6ml of breast milk per hour continuously. Other than that, we are just loving on him, reading to him and telling him how much we love him! He's had a lot of visitors love on him as well! I can't express how much everyone appreciates the prayers, notes, messages, and calls! Love to all.
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