Max came out of the surgery without any complications. He now has a catheter on the right side of his neck that comes out behind his ear. Unfortunately the surgeon couldn't get it to tunnel and come out where his clothes would have hidden it. He said that Max is just too small right now. Although it is not attractive and it kind of made me queasy to be honest, if it works I don't care where it comes out of. When I left Max was still very sedated from the anesthesia, but Tim hung back to be with him.
As far as the hemo dialysis goes, the nephrologist is very confident that it is going to work for him. When he said this to me I made him promise that it would work and surprisingly enough, he did. The plan at this point is to have him on it for about 2 months and reasses him. If he isn't doing as well as they would like on the hemo they can retry the peritoneal dialysis. If (and we are praying so very hard) he is doing great on the hemo, they will continue with it and remove the PD catheter that is in his belly. What this means is that when he comes home we will have to take him into the Dialysis Clinic 3-4 times a week where they will hook him up to a machine that will filter out his blood for 3-4 hours. Tim and I are looking at the positives of this whole ordeal and that is that once he is off the machine and we leave the hospital, that's it. We come home and he can crawl, play and roll over without getting tangled in his wires and tubes. *sigh of relief* We will be able to walk around our house without dragging an IV pole behind us. I know it seems like such a little thing to be excited about. You don't realize how much you miss out on until it's taken away from you.
Let's see... he is still on a high flow nasal cannula, but they are slowly weaning him off of it. They are going to put him over a continuous feed to see if it will help with the gagging, coughing and retching that he has been having. Umm... I think that is it. As soon as Max is feeling better and up to it they will do his first round of hemo dialysis. This could be as soon as tomorrow. We'll see.
I'll keep you all updated. Thank you so much for all of the prayers!
5 comments:
Glad to hear the surgery went well. We prayed extra hard for Max today and we will again tonight. Let us know if you need help with anything. Keep your head high, he is a special kid and you should be proud to be his mom. Thanks for the link to Oprah about Eliot. I cried my eyes out. God really does have a plan putting these kids on this earth for a reason. I know that Max has taught me to stop and enjoy my boys and be thankful for their health. Health is something we take for granted and I know now that it is a gift. Dylan asked what Max was being for Halloween and I told him he is a fighter!!! He is fighting the sick inside him so he can come home again. He said "I really want Max to come home so we can take him dinner again." So ANY TIME you want me to bring dinner over, please let me know. I will do it!!!! Hang in there.
Katie, Brian, Dylan and Parker Ruschman
Just know that I am thinking about you guys this weekend and praying that Max is back to his smiling self again soon! I know that this week has been especially tough! Hang in there... he is such a little fighter!
Amie (dayshift RCNIC RN)
Max is such an amazing little fighter. He is truly an inspiration! We will be continuing to pray for him!
Hi Beth!
It's Andy and I'm hanging out in the hospital room with mom and dad. Max isn't the only one that has tubes in his neck. Dad is jealous that he isn't the only one in the family with these wonderful tubes in his neck. We all are still praying for Max, you and Tim.
Hang in there!
Andy
Max,
We are so glad your surgery went well. Keep fighting little man. Beth and Tim, you have it all right. Just when you think things are getting tough and you are tired of it all, you have to stay strong for Max. He is an inspiration to so many. Yesterday as I was nervously sitting in the Seton Center waiting room after my 1st ultrasound for baby #2 before my appt. with Dr. Hinton I saw another couple reading a magazine. I noticed a little face in it. I said, "Hey, I know that little guy and he is such a fighter." They were simply amazed at the things the doctors can do these days and said, "We will pray for him." As soon as they went in for their appt. I picked up the article. It was the Fall 2008 Edition of the Good Health publication. Max's little shining face was right there with his story from Children's website patient stories. It made my face light up and forget everything I was nervous about at that moment and leave my anxiety behind.
We will keep your family in our prayers.
Harmony, Eric, and Logan
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