Thursday - We have good news! Charlie's condition is improving slowly. After lying in a bed either at the ER or in the hospital room for 2-1/2 days, Charlie is able to get up and move around with minimal assistance. The physical therapist (PT) and occupational therapist (OT) came to work with Charlie and helped him to sit up in a chair (still needs a pillow behind him for support, mainly because sitting straight up still hurts his legs), put his shirt and shorts on, eat by himself, and walk around the PCU floor (holding on to something for support). He did amazingly well! He is wobbly on his feet and has a difficult time just standing still. He is not walking on his tiptoes as much, which is a good sign. He is still unable to put on his shoes and socks - bending his legs hurts. The OT will continue to work with Charlie one time per day (fine motor skills - dressing self, eating), and the PT will work with him twice per day (gross motor skills - walking, kicking a ball, climbing, sitting).
The PCU doctor says Charlie is progressing well and put in an order this morning to move him to a regular floor. Procedures have been taking a while here, as we have learned that TX Children's Hospital is currently filled to capacity (Now we know why we were in the ER for almost 24 hours before being moved!). Luckily, we have had some really wonderful nurses and staff who have been helpful! We are so grateful!
The neurology team also came to assess Charlie. He is still experiencing leg pain and continues to wake up in the middle of the night crying. His pain medication has been increased - we'll see if that helps. Charlie continues to have pain in his legs when he lies on his back or sits straight up. This is something that the neurologists are not sure about. Although it may be related to his GBS, it may be related to something else in his back / spine. (We are still waiting for some of the results of the spinal tap.)
Friday - We finally got moved to a regular floor this afternoon! Yea! I have to say, the accommodations here have been good. TX Children's Hospital really provides some wonderful services to the patients and families.
Keep sending up prayers for Charlie. His doctor mentioned that the earliest he might go home is Monday (he would continue to have outpatient OT and PT to help him regain his strength and mobility).
Love to all,
Lori
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Hi Lori. I know it is so hard, what you are going through. It tests us as mothers to see what we can really handle when it comes to our children. As you've learned recently, Texas Children's will take good care of you. They are all about the kids, especially the little ones.
ReplyDeleteWe're keeping you, Charlie and Emma in our thougths and prayers, sharing with you what you've shared with us over the past few months- love and support. I would love to bring you guys dinner one night when you're all back home together or maybe if you'd like, I can order some pizza to be sent your way. Once I hear that you're home, I'll try to contact you to see what you need. Much love to you all- Holland, Kira, Lena & Naia