Christmas 2012

Oh, what a couple of weeks we have had! Wednesday, Dec. 19: Autumn had her school Christmas party & then came home that afternoon with a low grade fever. Thursday, Dec. 20: Gage had his Christmas party & then that evening started running a fever. Autumn still had a low grade fever. Friday, Dec. 21: Gage & I took Madison to the airport to fly out to have Christmas with her grandparents. Took Gage to the clinic & he was positive for strep, got meds. Autumn was not running anymore fever & doing fine. Saturday, Dec. 22: Gage still had fever. Ran to the grocery store. Sunday, Dec. 23: Gage fever. Sent my brother to pick up Madison from the airport because did not want sister-in-law to watch Autumn & Gage & carry germs over to her house. Monday, Dec. 24: Gage fever. Cancelled our traditional Christmas light looking that evening. :( No nursing Tuesday, Dec. 25: Gage fever. Opened presents. We get snow! James starts running fever. Autumn has low grade fever. No nursing & since daddy was sick then mommy got put on 24 hour Autumn duty. Autumn needed oxygen while sleeping that night. She has not needed oxygen overnight since she was 4 months old! Wednesday, Dec. 26: Gage STILL has fever. James still sick. Tried to send boys to clinic but our drive was iced over & we could not get out. Later that afternoon, sent both boys to clinic. Both tested negative for flu but since they had all the symptoms, they put them on Tamiflu. Gage strep test was negative so we know antibiotics were working. Autumn was not looking well at all. She was very pale & bluish. Needed on her vent ALL day. Still no nursing & my SIL (respite worker) went out of town. Mommy is getting tired. Madison watched Autumn while I got a shower & changed sheets on our bed. Autumn still needs oxygen while sleeping & is very demanding. Thursday, Dec. 27: Daddy still sick. Gage seems to be improving. Autumn still not feeling well, low grade temp. Autumn is still demanding. Mommy has been on Autumn duty with no breaks for 2 days & getting exhausted. Autumn still on vent & oxygen. Still no nursing. Friday, Dec. 28: Daddy still sick. Gage no more fever! Autumn is upset about everything & keeps desatting on me & pulling her vent off. Madison comes down to help so I can get dressed to take Autumn to ER. I have a little breakdown. I'm nervous Autumn may have a shunt malfunction & need a revision. The only time she has ever needed oxygen while sleeping is when her shunt malfunctioned at the age of 4 months. I don't want to deal with a hospital stay. I know James can not go with me because he's sick & they will not allow him in the hospital. Madison will have to go with me but I'm nervous to drive in traffic with her taking care of Autumn if Autumn decides to stop breathing on the way. I'm SO overwhelmed & extremely tired! I have no one to call for help that is trained on Autumn. I cried. I get myself & Autumn ready. Pack bags & equipment & load up car for the ER. Our children's hospital is about a 40 minute drive. We arrive after some desatting & turning blue on the way. Big sissy handled it great! ER was packed but they know how to treat a kid on a trach & vent. No wait for us, they took us straight back. They did bloodwork, gave her an IV, did a CT scan, chest & head xrays, flu test, RSV test, trach aspirate, & urinalysis. Diagnosis was uti & trach infection. Bloodwork, xrays, & scan all looked fine. They wanted to admit us for IV antibiotics. After talking with the doctor, we made the decision to go home. We were there for 7 hours & I had not eaten since breakfast. Madison was breaking down because she was so tired & bored. I knew if we stayed that James would need to drive there to get Madison & I would have no help & be alone in the hospital & James would have no help at home. Autumn always does much better at home as well. We had left about 12pm & got home about 9:30pm. We finally had a night nurse so I was able to get some much needed sleep which I know would not of happened in the ER. Saturday, Dec. 29: I was back on duty, Autumn was looking much better. Still needed oxygen & her vent though. Sunday: My SIL & brother came home early from my parents to help me. I was finally able to leave Autumn's bedside to clean my house & put away Christmas decorations. We all played some games together. It was just so nice to have people here & get a much needed break. Daddy is all better too! Monday: Received call from ER that Autumn's RSV test came back positive. So, we finally have an answer for needed the vent & oxygen. My day nurse was back from vacation. I actually got to leave the house to do some grocery shopping & Gage & I even ran a few errands together. I cried while driving to the store because I felt so refreshed after having people over the day before to help & I was just so thankful for them. I was also thinking about Madison & how awesome she had been throughout the week helping me. I often feel guilty when people help because Autumn is not their responsibility & I don't want to inconvenience anyone. Madison should not have to have the responsibility she has at 13 years old to know how to suction her sister & give her oxygen to save her life if needed. Both of my kids sacrifice a lot because of their sister. They can not go much because I can't take them & they can not do as many activities because of Autumn's needs & how we are limited. It gets very lonely for our family because we do get stuck at home quite a bit. I try though when we do have a break to get my kids out as much as possible to do fun things. I do however know God put all of us in this family for a reason & my kids will be better people because of the sacrifices & responsibilities they have with their sister. They rarely ever complain about it & I'm just so blessed to have their help & understanding. I also know we could not do it everyday if we did not have family & nurses who are willing to help us as much as they do. It's stressful to always have people in our home but after my week without them, I remembered how much they are needed. It does take a village to run this house! This was one of my hardest weeks I've had in a long time but God gave me the strength to get through it. I sit here thinking of all we are blessed with & feel overwhelmed by His unconditional love. God is good.