November 8, 2009 was the one year anniversary of Max coming home, for good, from Cincinnati Children's Hospital's RCNIC. Unfortunately this big day got jumbled in a busy weekend with my brother's wedding, but what an awesome way to celebrate it! Max was the ring bearer in the wedding and did a fantastic job. I have to admit that I got teary eyed thinking about the fact that Max was even there to be in the wedding, let alone be in a tuxedo riding down the aisle in a wagon with the flower girl. I have to say that he was the cutest ring bearer ever known to man. He sat in his wagon in awe of all of the people looking at him and smiling. It was very cute.
Onto how Mr. Max is doing. We had bit of a scare last Tuesday when Max woke up having a hard time breathing. He was pulling and tugging pretty hard and I couldn't get him off of his oxygen without him dropping his oxygen saturation. I have seen him at his worse and this was pretty close to being at that point. I gave him a couple of hours to come off of dialysis and to sit up to see if it would help. It did a little, but not enough for my comfort. I called the hospital and found out that neither Dr. Ben or Dr. Brad were there at the hospital. I am one of those mama's that only likes to talk with Max's primary doctors so at this point I started to panic. I was speaking to Max's nutritionist so she paged Dr. Brad because Dr. Ben wasn't due to come in that day. To my surprise though, Dr. Ben is who called me. She had paged both doctors. Dr. Ben told me to bring him in with his oxygen and to pack our bags and that he would meet us there. (He's such a fantastic doctor). Of course I started sobbing with that news even though I knew it was coming. I had actually already started packing, but hearing him say it made it real. So I packed Max up, oxygen and all, and headed to the dialysis unit.
Max was sitting up in the bed being a complete ham. He was loving all of the attention that he was getting from the nurses, doctors and nutritionist. Dr. Ben said that if he sent him up to the floor acting like he was that they would laugh at him. We tried weaning him off of his oxygen there but to no avail. He was only needing a 1/2 liter rather than the full liter he needed earlier in the day. We waited for Dr. Brad to get there from the Anderson Campus to see what his thoughts were. He decided that if I was comfortable with taking him home on the oxygen and monitoring him that he was okay with that. If Max got any worse though then he would need to be brought back in and admitted.
So what caused all of it? We believe that he was fluid overloaded from his dialysis. He didn't have any other signs (besides a slightly higher blood pressure) of being fluid overloaded. He sounded great and was acting like himself, so they decided to change a few things with his dialysis and see what happened. We also hooked him up for 16 hours rather than 12 to try to remove a little extra fluid. Wednesday morning he was still needing a little bit of oxygen but I had him off of it by late afternoon. His breathing was calmer but he was still tugging a little. Dr. Ben was okay with it and told us to just keep watching him closely. Thursday morning, Max woke up, came off of his oxygen without any problems and was breathing beautifully. He has been like that ever since.
Thank you God for sparing Max from another hospitalization, especially with Bob and Ashley's wedding being that weekend. Thank you to Marissa (Dr. Ben's wife) for praying for Max during that scary time.
The transplant date is still in the works. I am really hoping to hear something this week considering it's been in the works for over a week now. I'll let you know as soon as I hear something.
Please continue to Pray for Grandpa Larry. He started his chemo and radiation last week. He is doing pretty well with both and doesn't have any major side effects.
Congratulations Bob and Ashley!!! We wish you nothing but the best in all of your years to come as husband and wife.
Also wanted to congratulate my brother Tony and his fiance Hillary on expecting their first baby in February. Can't wait to meet you Oliver!
Also for those of you that have been praying for Brooke and Baby Gabi, thank you! Both are doing very well. The doctor's can't find anything wrong with Gabi!!! she is due to be born on the 17th or 18th of November unless Brooke goes earlier. AND.... Brooke was able to get a 6 hour pass for the wedding. It was so great to have her there to celebrate in her sister's big day. It was hard saying goodbye to her when she had to go back, but I think it lifted her spirits to be able to get out for a little while. Please continue to pray for her and Gabi.
That's about it ladies and gents. Life has been very hectic with the wedding and another wedding in 2.5 weeks, but life is good. Thank you to those still following Max and his journey.
What a gorgeous weekend for a wedding! Here are a few pictures that I took the day of the wedding. Enjoy!!!
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