So the past two days Raygen has stated to be more and more like herself. She still has moments where I wonder if we have missed something especially since the doctors office called and said they were not 100 percent sure it was a UTI. How frustrating not to know for sure what was bothering her, but since she is improving on the medicine I am just going to let that go. I did call Raygen's surgeon at Children's and she is still on the schedule for August 21st. So our next appointment is pre-op the week before surgery. I am trying to prepare myself as much as possible, but I don't think I can ever truly be prepared. For now I am making a hospital bag for Raygen with lots of stickers, bubbles, books, elmo, anything that I think will help us keep her happy and comfortable at the hospital.
Saturday, July 19, 2014
So yesterday we finally figured out why Raygen has been so sick. Even though the ibuprofen gave Raygen some relief from what ever was bothering her it didn't last too long. Friday morning we felt like we were back at square one. Raygen had another fever and chills and just wasn't improving like we thought she should so we headed back to town. After waiting about an hour we finally got a pee sample and it was positive. Raygen has a bladder infection. I know this may sound weird, but I was so happy that it was positive. Now we know what is wrong and can get medicine to treat it. She is still feeling pretty yucky today, but I hope by tomorrow we should see some major improvement. Best part is when I call her surgeon I can tell him what was wrong and then he can make the decision if this infection will postpone her Fontan. I really can not wait till the medicine works and we can all get some very much needed sleep and I especially can't wait to see Raygen smiling and laughing again.
Thursday, July 17, 2014
So if you have happened to see Raygen's Face Book page you know that she has been very sick since Tuesday. The ear tube surgery went wonderful till about 3am Tuesday morning. Raygen ran a very high temp and couldn't keep down any food and was very, very fussy till today. Today she seems more like her normal self. We still have moments of needing lots of snuggling and walking around, but she is keeping her feeds down and has even started to play a little. Even when she does start to feel warm her spikes in temperature are lower then they have been the last few days. It has been a very scary few days on wondering what is wrong and what to do. Randy and I believe she must have picked up some sort of virus from the hospital. If she is better Monday I am going to call her surgeon and see if they feel like we should push her surgery back since she was sick this week. It is all so stressful and overwhelming, but when I see her today start to play a little and talk again I take a deep breath and realize how lucky I am to have this little miracle in my life.
Monday, July 14, 2014
Raygen was such a big girl this morning. We watched Elmo while waiting to be taken back for her ear tube surgery.
They gave her a pre-med which helped relax her so she didn't cry at all.
She wasn't too impressed with her bracelets.
The surgery was a success. She did have fluid in her ears so I didn't feel like it was an unnecessary procedure. This surgery was so unlike all her other ones even the ones that you are told are "easy for normal kids." Raygen didn't have to have an iv and we were out of the hospital by noon. She is a little fussy now, but overall seems to be doing pretty good.
Thank you for all your prayers.
Sunday, July 13, 2014
Tomorrow Raygen will have her second ear tube surgery. We check in to Seattle Children's at 8:15 am so it will be a very early morning for us. Hopefully this will be an easy quick procedure for her and we can be on our way home by noon. I can't believe we are less then 6 weeks away from her Fontan. The nerves are really kicking in. Please say a prayer for Raygen tomorrow that everything goes smoothly and she has an easy and as much as possible stress free procedure.
On another note: AIDEN IS HOME!!!!
On another note: AIDEN IS HOME!!!!
Tuesday, July 8, 2014
Today we had Raygen's pre-op appointment for her ear tubes and since we were at Children's we got to visit with Aiden Ray Lescher - HLHS and his mom Elsa. It's always so nice to get together and caught up. We understand the ups and downs of having a child with HLHS and it has truly bonded us. I feel like Elsa is a long lost sister. I am truly blessed to have met her and her amazing family.
We will find out on Thursday what time Raygen's ear tube surgery will be on Monday. It is the first step in our plan to make sure she stays healthy for her Fontan in August. We have started to live in our bubble again.
Please pray for Aiden. He was so close to going home this week and then today it was discussed placing another chest tube tomorrow if he still has fluid in his chest. He is such an amazing little man and he is going on 40 days in the hospital. So many ups and downs. It truly is a roller coaster.
Monday, July 7, 2014
Saturday, July 5, 2014
We were able to rent a boat for a few hours to see if were a "boating" kind-of family
and I think we decided we like our feet on dry land. It was just our luck that the day we rented our boat happened to be very windy so the water was pretty choppy.
There were moments of enjoyment, but the rough water and wind did scare Zoie a few times. Raygen decided to nap during most of the trip, but when she woke she was just happy moving and sitting on my lap.
I love getting to experience new things with my girls.
We have so much happening in the next few weeks it's nice to just relax and enjoy being a family.
I know that tomorrow we head home and back to reality and preparing for ear tubes and Fontan, but I'm going to try not to think about that now and just enjoy this time of being "normal."