Saturday, August 9, 2014

Post op day 5

Abe is doing amazing. He made his first trip outside and downstairs yesterday. We made it to the playroom only 20 minutes before they closed but it was better than nothing. I let Luke out of the Ergo and Abe saw Luke on the ground playing so naturally Abe wanted to play to. When I told him I was not sure that he could get down right now due to his surgery and his casts on his feet he became very upset and wanted to leave. They offered him a truck but he said no and  began to feel happy again when paper was offered to him. Luke really needed to run around. Since I was so frazzled from caring for both boys in a non typical environment I completely forgot to prepare Abe for the changes that recently occurred with his mobility. It was a super busy Friday and around 245pm I finally got to get something to eat. I will plan to bring lunch and dinner now especially if no respite care is available that day. The social worker did tell me that a nursing mom meal would be provided for 3 days but unfortunately it's against hospital policy because the sibling is the nursing baby however no one bothered to tell me this until the last minute.  Glenn does have a job so we do receive a pay check but the biggest obstacle was actually getting to go there to get food. Luke enjoyed playing in the water foundation and Abe thought it was hilarious. It was all fun and games in the water until another parent mentioned that her baby playing right next to Luke in the water was just seen in the ER for a stomach virus and diarrhea. Most of  you know I am a nurse and mom of a former preemie (Abe) so just imagine how quickly I got him changed and cleaned up. Another kid from Bremerton area had surgery too so his mother stayed with Abe while I took Luke upstairs. Security approached me as I was trying to get Luke upstairs because it probably didn't look right since I was holding him at distance and trying to get his wet clothes off of him.  Good to know they do a great job at keeping kids safe here. I got a Starbucks treat, a peach green tea lemonade, super good by the way, and Abe a cookie. Getting outside and getting Starbucks seemed to make the busy stressful day a little better. Abe got new super boots (casts) yesterday. He did pretty good but the sound of the saw was upsetting to him and Luke got fussy since I would not let him play in there. The purpose of the casting is to stretch the Achilles tendon so he hopefully down the road he won't need tendon release surgery. Abe points his toes significantly so the plan with serial casting, (every 3 days for 2 weeks) is to help his feet to be a more neutral position. He started PT and OT. He is tolerating being in a wheelchair and his therapy without narcotic pain medications however the last two evenings I have noticed he does not want to move so has required Tylenol. He has a huge oral aversion to oral medications so the first few days were very difficult but seems to except them from nurses. The plan is to wean him off Baclofen but so far I have not heard when this will occur. I have already noticed less tightness in his legs but his right arm and elbow are tight. Today rather than rushing to get here Luke and I slept in, did some laundry and took a break. I sure hope his shoes dry out soon because they got soaking wet. A dog named "Abe" came to visit Abe today and left his picture. Abe is enjoying the cards people made for him.  This week was incredibly busy and stressful but one week is almost over. Thank you friends for all the support this week, staying with me the day of surgery since Glenn was working, coming to visit us, bringing food and small portion freezer meals that are portable and watching Luke. The best advise I can give for any family that might go through a planned surgery for their child or family member: pack some lunch for yourself the day of surgery especially if pregnant or nursing, we had a 4 hour delay and I was starving, bring another adult (preferably a parent) with you if a child having surgery so you can step outside the room to eat since the patient can't eat. They did not want me to leave the pre surgery area even though I had a friend in the room with Abe because she can't make medical decisions for him.Make freezer meals in small dispoble containers that can be microwaved (I made large portion in seal a meal bag, not so handy in the situation we are in right now), arrange child care for you other children, pack non perishable snacks, bring a water bottle to refill and bring your own pillow. I will keep you updated on his progress. Sundays is a no therapy day so hopefully Abe can enjoy some time driving his power wheelchair (I got it fixed so it goes all the way to ground now Thursday and it tore me up to leave Abe but respite stayed with him that day and he did amazing having mommy gone). I felt like a terrible mother leaving him but I had to get the chair taken of and the reason I was gone was for something for him. The lift for the power wheelchair has been shipped, just waiting to get it installed. I can't wait to see him be able to stand and crawl again and potentially walk. I picked up his tricycle this past week. I can't wait to see him get strong enough to pedal again.

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