It was supposed to be a nice quiet week. Back to "normal" only 2 scheduled appointments for the whole family - 2 therapy sessions. A full week of work. I knew it was too good to be true!
Callie started to have her twitching episode again on Wednesday. By 6pm she was screaming and not eating. She took one 15 min nap by 8:30p. We took the bandages off her head from the shunt surgery and her soft spot looked indented. We had no clue if this was normal or not since we were so used to this raised lump. Our nurse assured us it was ok, but we should just call neuro in the morning. The screaming continued so we called the PICU doctor about 10:30p who suggested we bring her to Marshfield. We really did not want to be there knowing what type of care we would get... no help at all due to lack of staffing with all the cuts. It sure makes for some long days and nights when you average 2-4 hours of sleep a night, in 15-30min increments. Not knowing if this was shunt related or one of her episodes it was best to be checked out though. She had a CT scan that confirmed the shut is working properly and everything looked great. She was getting dehydrated from not eating with all the screaming so she was admitted. They adjusted the shunt on Thursday and monitored her. These episodes go for 36 hours and then we are fine. Still no clue what they can be. We kept telling everyone by Friday morning at 6am she will be fine. Really I think they thought we were nuts. Friday morning she started eating again and perking up.. just as we thought. Sometimes I wonder why they just don't listen to parents and accept it is practice and they don't know everything. She had a great day of eating. Her last good bottle was 10pm Friday. We have been fighting with her since to get her to eat. Ahh.. Sometimes she goes in these little spurts, but not an all day thing. Finally at 8:30pm today, of course when there is no walk in. We went to the ER. Sure it was an ear infection. Really - the ER for an ear infection, but what do you do at this time of day when you really don't want her be in pain all night long and have to wait until morning to be seen? So off to the hospital. It was an awesome visit. We went to St. Clare's. No reason for a 45 minute drive to Marshfield. We were in and out quickly. Sure enough it was an ear infection. Her second already. They even filled the prescription there for us so we did not have to figure that out at this time of night. We have had some great experience with that ER. They also took a bunch of wax out of her ear and sure enough, she started to eat again. It was so nice for her not to fight with us, when all she wanted was a full tummy. What a great experience! Thank you.
Zak and I went to Gabe's 4th birthday party today. It was so nice just to get out and do something fun rather than the regular routine. It was so cute, when we got there I told him happy birthday and that Zak brought him a birthday present. He said I hope it is transformers..thankfully it was. I told him I did not know he had to ask Zak. He said Zak does not even talk yet, he is not big like me. I just had to laugh it was so funny. Little does he know Zak is older, yet he is smaller. That is all kids really know age by when they are so young. Kids do say the darnedest things :) I told Gabe's Mom we are coming over more just to eat. Zak ate so well. A half of container yogurt, a whole hot dog, cheese, Cake and Ice Cream.. and Cheetos! A new food for him. He even bit them, I was shocked. I guess we will have to go shopping. Then I set him in the grass to play. Something we cannot really do at home since we have so many bugs being by the woods. He rolled right to his tummy, and stayed there playing in the grass for about 2 min. He never stays on his tummy. Then he sat and pulled the grass. He sure liked it. What a great day he had!
Then to top off the day, we even went to dinner with some good friends of ours. They are busy with 2 little ones as well so it is hard to get sitters and get out. An adult evening just to catch up on life. Something we have not done in a while. It was much needed. So even after a crazy week we had a good day.