Four weeks out now. . . here is an update on Hope's recovery. . .
Hope continues to improve. . . S-L-O-W-L-Y!!! : ) It's hard some days to feel like she's moving forward, but then when you compare today to a week ago, you realize, she is improving . . . it's just really slow progress. Which is to be expected with this kind of surgery. Hope's first follow-up appt with her surgeon was this past Friday. Hope had her dressing removed. . . it was pretty miserable for her, but she was tough. Trying to remove the remaining adhesive from her sensitive skin was probably the toughest part of the appointment. . . her skin was red and sore to touch and scrubbing off adhesive was super unpleasant. However, her incision looks fantastic!!! It has already healed significantly with no signs of leakage or infection. . . wonderful wonderful to see! Good news was that Hope will not need repeat x-rays until her 3 month follow-up appointment. The surgeon wanted us to wean her off of all pain meds, however, Hope is only taking Ibuprofen once per day, 30 mins before getting up in the chair now, and we feel this is reasonable and necessary to continue for the time being to help her through this very painful time for her. But we will continue in that direction as her endurance in the wheelchair increases. We are quite thankful with how quickly the Lord has brought Hope down off of pain meds through this past 4 weeks!
This was supposed to be the week for Hope to start a modified return to the school. She has not been able to do that for a few reasons, but the biggest is her length of time tolerated in the wheelchair. She needs to be able to tolerate about 4 hours total to get through a morning or an afternoon at school, along with the drive there and back. We have set a goal for her to be up each day now, and it has not been easy. On Monday we encouraged her to go as long as she possibly could. After only about 90 mins, she felt she could not go any longer. We worked with her, reading Phil 4:11-13, to try to help her push as far as she could through the pain. It was very hard, but she made it to 2 hours and we decided that was enough. We have set the goal to increase her time in the wheelchair by 15 mins daily, which would have her up to 3 hours by Friday. Today, she did make it for the full 2 hours, 15 mins, but not without a lot of tears and a bit of a melt down about 20-25 mins prior to the end of her set time. It is so hard to ask your child to endure more pain when they are saying they can't do anymore. It is hard on her beloved EA, Mrs. Kornelson, who loves her dearly, yet understands why this goal is important, along with us. So we all band together and do everything we can to distract her, comfort her, pray with her, encourage her, and cry out to God to sustain and strengthen her. Hope is growing in her faith and understanding of how to seek God. Today, she shared that she is practicing Phil 4:6-7 as she gets into her wheelchair, praying and seeking the Lord for what she knows will be more than she can handle by herself! Goal for tomorrow will be 2 hours, 30 mins. . . please keep praying for Hope's pain management and her rehab to increase her endurance in the wheelchair. This is the time where the majority of the pain now will be from rehab more so than from healing. It is her neck that gives her the most grief still. However her incision, back area, and left side are also very sore still. We will consider next week again for Hope to return part time to school (3 mornings or afternoons) if she has worked up to the 4 hour goal!
Another huge area of prayer request would be for sleep! Hope has had a really bad past 9 days of sleep. There have been a couple of days where she has had no sleep at all! As hard as it is to be tired, lack of sleep is much more adverse to Hope, as it puts her at higher risk of seizures and other more adverse effects due to her brain injury. Trev and I also experience lack of sleep due to being up with her. . . we are tired, for sure, but I know that she suffers the most with this lack of sleep. Even mentally, she is less able to do school work and to cope with pain. So please continue to keep her ability to sleep at night in your prayers for her as well!
We are doing showers with Hope seated in the bathtub every other day as usual now. Hope is not thrilled about this, as she is still really struggling through this tiring and painful event. However, in spite of her struggle, she really has come so very far from that horrible first shower! We even noticed her sitting up without support in the tub tonight. . . that was encouraging. Having more regular showers will hopefully keep her incision clean and healthy, keep her hair from matting as bad, and just make her more comfortable, as well as be part of her continued rehab back to normal activities. So in spite of the struggle for our poor girlie, it is necessary. Just another task we need to do, and just get it over with!
Hope has been back on a normal self-initiated bowel routine for a little over a week now! She is thrilled. . . we are thrilled for her! How much excitement comes from a regular poo! : )
Hope has not been having any spasms. . . soooooo thankful for these being resolved. Her pain is primarily soreness, with the exception of her neck being more complex and painful. The way she is holding her neck is also quite different than usual. . . her neck seems to jut out forwards now (rather than her trying to correct as being off to the side). We are not sure if this will stay this way, or if it is sore and weak neck muscles and retraining her brain to control her neck. We asked about the severe pain she still experiences in her neck and any ways to prevent or help comfort this; the surgeon just stated that it was not unusual for their to be a significant amount of neck pain still. So something we will just watch and wait.
Hope stood at the sink with her daddy's support for me to brush her teeth for the second time. She is trying to figure out how to get her head over the sink enough to spit as she is unable to bend forwards now. But still feels like a big accomplishment to have her back at the sink and working towards figuring it out.
That's all I can think of for now. Thank you so much for your sweet prayers and continued support of our girlie and her family! God is faithful and we praise Him for the so far major complication free recovery from such a huge surgery! It feels and is an amazing mercy as Hope's history is chocked full of complications from far less major surgeries and procedures. We love you dear friends and family, and praise God for your willingness to share this journey with us! We grow exhausted some days, and hurt to watch our girlie hurt and not be able to take it away, but we are thankful that we never need to feel alone. . . our God is with us, and He has surrounded us with you. . . YOU ARE LOVED, dear ones!!!