A whole lotta action

A lot has happened in the last few months and I have not had a lot of time to post. About six weeks ago Oliver was in significant pain, we happened to be at Gillette for another appointment at the time when Oli had a wet diaper and we realized he was passing stones. A whole lotta stones, which would explain the high level of pain. They did an ultrasound and his bladder was full of sediment. So now we cath Oliver if he holds his potty too long. We were hoping the pain was resolved at this point but Oliver had some more going on. He had been passing some blood from his tummy which we have been managing from home but the amount kept increasing so Oliver went to the hospital for a quick five day tune up. They scoped him and found small erosions in his tummy. They figured it was a mechanical injury from his extreme movements. His G-tube was scratching his tummy causing it to bleed so they did a quick procedure and put in a different tube. This will cause less damage when he does have his crazy man action going on. So, now we are home preparing for Santa to come. Every time Adina is being a stinker I just have to say, "oh, I'm calling Santa!" Works every time! We will milk that one until she figures the whole Santa thing out! Do not worry, all of you who do not believe in teaching kids the magic of Santa. She knows the whole Jesus part of Christmas too but kids are only kids once.

Unfortunately, it looks as if we will have another hospital stay this week. Oliver has two meds that run through his IV continuously for pain and irritation. One of those meds is Versed. We were running low on our supply over the weekend, which rarely happens, because the pharmacy is so on top of things. I called and we learned that there is a nationwide shortage of that drug and all of the drugs in that family. It is a drug that cannot safely be stopped abruptly because of withdrawal and there are no other IV drugs to switch to because they are all out as well. Our safest option is to bring Oliver to Gillette to safely find an alternative where we have doctors that know Oliver well and can help quick without making many phone calls. It is just life and now we are thinking of ways to make Christmas just as special if Oliver is still in the hospital. We will be figuring this all out on Thursday as we have enough meds to get us through that day. We are so lucky to have such great resources for Oliver. His Gillette team is amazing and the hospice team have all become special to our family as well. The kids got to see Santa at Gillette and decorate Gingerbread houses. If you are ever questioning if there are genuinely nice people left in this world go and sit in the waiting room at Gillette. Everybody that works there is really a special kind of person. It is the one place that we can go where people see Oliver in his chair and say, "What a cute little boy!" Usually people see him and do the pity thing, which gets old. All kiddos are treated this way at Gillette, it is a safe place.
Kids are all doing well. Adina is on a LONG two week break from school. Cora has learned that hitting big sister is fun. She is also learning a lot about the time out corner. Phinneus is two months old and is one easy baby! Oliver is happy and has been playing on the floor with his siblings a lot!
Sorry for the mother load of posts. A lot has happened the last month. We hope you all have a peaceful Christmas, Hanukkah, Christmauka, Kwanzaa where ever you are.

Our many attempts to get all four kids to smile nice for Christmas pictures!






Adina loves to take pictures, usually of her foot. This is one of my favorite pics of Phinn!

Bummer

We had a good few months and managed to stay out of the hospital but we hit a bump or two. A month ago we realized Oliver was having pain when he went potty and then he actually passed some sediment. They tested it and realized Oliver had kidney stones, OUCH! That explains the pain. We had a few appointments and are managing that, at least we were managing all from home. Then Oliver had blood from his tummy that kept increasing. He is at Gillette PICU trying to figure this out. Of course we get there and it stops!! It is more frustrating than I can say! I will post more soon but wanted to let everybody know. Now the balancing act of staying with Oli and getting the other three back and forth!! Sorry for typos, didn't proof this one.