Tight Muscles

Abe is over 20 days post selective dorsal rhizotomy. Initially we noticed wow his muscles are nice and loose it is easier to care for him but now he wants to bring his legs up and his legs are super tight. He was weaned off the Baclofen a week ago. It was over the weekend we noticed the tightness. The rehab doctor that did the pre operative evaluation did not expect him to have a lot of dystonia, http://www.ninds.nih.gov/disorders/dystonias/detail_dystonias.htm. The surgery does not correct the dysonia therefore a night time dose of Bacolfen will be restarted tonight. Abe doing pretty amazing, rode a trike down to the play room and outside,getting his strength back quickly. Since yesterday evening he has been very tired, not wanting to eat very much, occasional cough and sneeze. He has been sleeping since about 245pm today, well occasionally waking up crying a little bit. I really hope he is not getting sick especially since school starts next week and he has so much physical therapy to do. The professionals working with him are impressed with his skills. He is tired and sensitive to light right now so I might have neurosurgery come and take a look at him. He had an MRI the day of surgery and his VP shunt was reset that day so I would think if there were any problems it would have already showed up. If he does need neurosurgery to check him at least we are already here. He gets to leave the hospital for a bit tomorrow but not for anything fun. His AFOs we picked up July 29th are too tight around his calves and are too long in the foot. Since an outside provider did them I will have to drive him there. I just hope he is feeling better. He is sensitive to light and noise right now. I know they let him play with Ipads and they had some magnetic trains in the therapy room. I rarely get to attend this therapy sessions because I am super busy with Luke. I only have time right now to update this because respite has Luke and Abe is resting. I spend most of my time here keeping Luke occupied. Just one more week. We have done this before, we can do it. His NICU stay 5 1/2 years ago was 11 days at Madigan and 96 days at Seattle Children's we can handle one more week. I am taking a break tomorrow night while Glenn watches the boys. Today is the last day of respite care at the hospital. I am very thankful that our hours were increased. October 1st we completely lose respite care since officially retiring. Although some would say, "you only have 2 kids". Yes only 2 kids but Abe requires a lot more care than an average 5 year old just at home not including the multiple appointments for ST, OT, PT, specialist care, dentist every 3 months,ect. I have used respite care for the last 4 years for my own doctor's appointments, dental, eye to go to MOPS evening events, ect. Not only do we lose our extended ECHO benefits with Tricare but we lose respite care.  It will be an adjustment for all of us. Glenn has been at Boeing for a month now but works a distance away from our house. So Abe is showing signs of respiratory infection. If Abe does come back postive for a respiratory virus then Luke can't visit which means I won't be able to either unless someone can watch Luke. It will break my heart if I can't see Abe and advocate for him. I especially want to be here because everyday he has different nurses everyday and sometimes a nurse from 7am to 3pm, then 3pm to 7pm then 7pm to 11pm then a different one 11pm to 7am. We occasionally get the same nurse every day but it's rare. From my nursing experience you get to know the ends and outs of your patient if you are assigned to them when you work. I am surprized that 8 hour shifts are still around combined with 12 hour nurses. When I mentioned today that he has an appointment in Bothell the nurse was shocked that I would be taking him out of the hospital. I thought for sure it was in his chart somewhere. The charge  nurse knew but not the nurses assigned to him. I know when I worked here it was stressful to have patients for 4 hours then I was floated to another unit with different patients.