Sunday Daniel had two physical therapy appointments and a fair bit of time on his hands. He was handling his pain well and enjoyed visits from friends, most of whom were drawn into a game of Battleship, a game Daniel was introduced to for the first time at the hospital. Here are some cute pictures from Sunday:
Daniel had a really good day today. It began early with a dose of oxycodone to prepare for the removal of the epidural which has kept him pain free these last three days in bed. Getting the epidural out was not a big deal and he handled it well. Then at 8:30 he had his first physical therapy appointment which consisted of sitting him up and transferring him to his wheelchair, where he could stay for an hour. He was so pleased to be up and wanted to get moving. We visited a new friend, Noah, who had SDR the day after Daniel, and then headed out to explore and found the beautiful rooftop garden down on the 8th floor (we are on the 12th, four floors above the rooftop garden – figure that one out!) and we made a quick stop in the children’s playroom. Our hour was quickly up (and slightly extended), then it was back to bed until his 1:00 p.m. physical therapy appointment, where he went through the stretching regimen which we will need to implement at home. He was asking to walk, and does not yet seem to comprehend that, while walking independently is a goal, it will only come after months of hard work.
After his afternoon PT appointment he stayed up for another hour or more until he finally began to complain of his back hurting, so he was carefully put back to bed for the remainder of the day.
Last night was rough on Mom as the night nurse was frequently in the room and was not very quiet, so tonight Dad is staying at the hospital with Daniel and Mom gets a night of sleep at home. Sunday will bring two more therapy sessions and continued improvement. Our aim is a midday Monday departure for home.
Well, sorry for that grumpy post last evening. I am so thankful we did not move to the PICU. We had a really good night. Daniel was awake for a while around 3-4 a.m., and he contentedly played games and watched Finding Dory on the touch-screen TV he is so happy to have. Then he went back to sleep and slept until after 8 this morning, so we both had good sleep last night. David came in to see us for a while this morning and I got a shower, so things are looking up.
The itching got ahead of the medication this morning and while I was showering I heard a lot of screaming in the room. This was when the itching had become unbearable and Daniel was trying to sit up, which is still a big no-no. David was trying to keep Daniel from scratching (he has already drawn blood several places on his tummy by scratching) and get the nurse in to address the problem. This lasted a little while and then we had to deal with a misunderstanding with the nurse about the time periods when Daniel is supposed to be getting these meds for itching. This nurse hasn’t been here during our stay before and I think she missed out on some communication about how frequently the itching medicine is to be given. Hopefully we’ve worked that out now. When Daniel is beside himself it is pretty difficult to manage things.
Now he is sleeping nicely and I am listening to some irritating beepings announcing that medications have completed dispensing . We are in the far corner from the nurses’ station and I don’t think they always hear our beeps right away. I am glad he is sleeping through them. Ahhhh, sweet relief – someone just came in and turned them off.
I am thankful that the times when Daniel is really struggling are relatively short and spaced several hours apart. The times in between are peaceful and even enjoyable when we are trying to play games together. Please be praying that Daniel will start to eat soon. He has really had very little since we have been here.
Thank you so much for your caring support and uplifting messages!
Our day started rough, but by late morning we had found a medication routine that was working to keep Daniel comfortable and he slept a good part of the day. However, this evening shortly after the shift change Daniel got upset and began crying and screaming and trying to pull out his IV. His nurse was concerned and has conferred with the charge nurse and neurology and it was decided that we need to be moved to the pediatric intensive care unit for the night so Daniel can be more closely monitored and more heavily sedated. I am not happy about this, but they feel it is the best way to keep Daniel safe and keep all the meds going and the epidural in his back intact.
Please continue to keep us in your prayers. Thank you!
Update! Daniel is now sleeping so comfortably they don’t want to move him and get him riled up again, so we are staying put. Ugh, why do I always unpack when we go somewhere? I just totally repacked us to move, now we are staying. I’m just going to get out my bedding and sleep in my clothes. Harrumph! 😉
We had a good night. Right after I posted last night Daniel was ready to sleep again and slept most of the night until a little after six this morning. Of course we had the regular nursing check-ins and the times Daniel woke just enough to ask for a drink, but overall it was a quiet night and we both slept more than I would have expected. Yay!
This morning has been a different story. The nurse was in to turn Daniel and make some adjustments. Daniel woke up and immediately tried to sit up, which he must not do until Saturday, so the nurse stopped him and that just pushed Daniel over the edge emotionally. He began to cry and cry and then was angry, yelling for me to go home and for Daddy to come, saying he wanted to cancel or delete the surgery. This went on for a half hour or so until the nurse and I decided he needed more sedation. I have a feeling he will need to be under some sedation for a good part of these next 48 hours. It is so hard to just lay in bed. We are, however, very grateful that we are in a “new era” of post-rhizotomy patient care. Just recently it has been determined that patients are not negatively impacted by having the head of the bed raised up to 45 degrees instead of completely flat. Being able to move within this range is such a relief to Daniel. This is apparently the hardest part of the recovery, and for those 3300+ previous patients who had to lay completely flat for three whole days, my hat is off to you brave souls!
Daniel has asked for breakfast, a smoothie and spaghetti noodles, which has been delivered, but he is dozing right now, thanks to that Valium.
Thanks so much for reading about Daniel’s journey and supporting him and us. I’ll post again this evening with a report of how the day went.
If ever there were a day we wished for things to go according to script, it would have been today. We are so very thankful that they did. Even when Daniel was waking up and struggling so much, he was still demonstrating very typical behavior of children coming out of this type of surgery. From our arrival this morning until this moment everything has gone almost exactly as we were told it would go. All staff members have been thoroughly kind and gentle, all in their own way. This experience has been thoroughly bathed in prayer and we so grateful for that!
I have been updating Daniel’s prayer maps today and I have almost run out of push pins! People have been praying literally “from sea to shining sea”, and far beyond! If I’m counting right Daniel was prayed for in 33 States and in at least 8 countries on five continents! Awesome! Thank you so much.
It is now 9:30 p.m. and Daniel is struggling emotionally. He is crying and asking why he couldn’t have the one day surgery (there is no one day option!) and just go home and why can’t he get up and how long before they take this or that monitor off and he doesn’t want to be able to walk after all. It is really sad, poor little guy. These are going to be rough hours and days for him. Thanks for continuing to keep us in your thoughts and prayers.
Daniel called to me at 4:20 this morning and said he was nervous and could I come to his room. As it turned out he was more excited than nervous. He said, “I’m so excited about my surgery!” “What is most exciting about it?” I asked, wondering if he was going to say the touch screen TV in the hospital room or the gifts he has been sent to open on the days after surgery. He answered, “Because I will be able to walk!” I was concerned he understand that the walking won’t happen for a while so I said, “Well, you won’t be able to walk right away…” and he said, “I know that, Mom. You don’t have to explain it to me.” “Oh, okay!”
He then proceeded to be hilariously silly, engaged and very cheerful right through all the pre-op stuff and until the versed kicked in. We were able to walk back to the doors of the OR with him and we parted with no tears (on his part.)
I am thrilled with his attitude about this over the last several days. I think it will help in the hours, days, and weeks to come. I’m sure we will have our moments, but I’m so encouraged by his enthusiasm and cheerfulness.
I am also amazed by the peace I have. A few months ago I was terribly anxious and couldn’t imagine coming to this day and not being an emotional wreck while Daniel was in surgery. I know so many people are praying for Daniel, and us, all around the world. I am thankful for this support and am confident in how God has led us to this place and to this procedure for Daniel. We will post again later on today with an update. Thank you so much for your support!
Happy birthday, America! We are thankful for the freedoms we have living in the United States and for this land of the free and home of the brave!
Speaking of the brave, Daniel is doing really well in anticipation of his surgery. He was cool as a cucumber this evening, eagerly packing his things and planning what friends he will bring with him – Curious George, Sally-Lilah, and Puppy. Curious George has been selected for the honor of accompanying Daniel into the operating room tomorrow morning. He (Daniel, and Curious George, actually) went to bed well and with the help of music, a white noise machine, and ear-plugs he has slept almost entirely through the INCREDIBLE (read LOUD!) fireworks being set off all around our house. These Missourians LOVE their fireworks, people!
Let me just say that while we had a nice time at the Cardinal’s game today, in celebration of the Fourth, today my thoughts about Independence Day have been about the Independence Daniel will receive from spasticity tomorrow. The potential independence Daniel can achieve through this surgery is wonderful. As we were leaving the ball park a woman turned around and said to Daniel, ‘You need some beads!” and placed this string of beads around his neck. I love them, not just for their patriotic nature, but for the hope we have for so much more independence for Daniel.
So, Daniel is the first on the surgery docket tomorrow morning and we have been asked to arrive at the hospital at 7:15 a.m. Next post will probably be after he goes into surgery and we are waiting for him. Thank you all for your prayers!
On Monday, we had Daniel’s Pre-Op appointments and they went very well. We met with one of Dr. Park’s PA’s and reviewed health history and what to expect on Wednesday. Then Daniel had a very extensive physical therapy evaluation where Daniel did what he does best – ham it up for the therapists! He was put through a many step pre-operative evaluation, and we were extremely pleased with how he did, and with the positive feedback from the therapist. He did some of his best movements yet, including standing independently from a sitting position and staying upright for almost two seconds. The therapist indicated she expects Daniel to do very well following the SDR surgery and looks forward to seeing his progress. The highlight of this evaluation may have been when Daniel randomly began to pray and said, “Dear Lord, thank you for this day. Help me to have a good day. Help me not to say any bad words. Amen.” Maybe you had to be there, but it was extremely funny.
We came away from these visits feeling very much at peace. We are confident we are in the best hands possible and we are doing what is right for Daniel at this time.
The kids have been attending Summer Fun Days at our church – a VBS program being held once a week for a month. The VBS program has been Maker Fun Factory, which focuses on God as our Maker and the purpose He has for each of our lives. The music is fabulous and the kids love it. We bought the CD of the songs and the kids have been listening to it every day and singing the songs. They have been very excited about attending each Tuesday morning. Typically VBS programs are held for a week, four or five days in a row sometime during the summer, but for whatever reason our church has been doing it once a week. Administratively this has been a challenge for the leadership, but I am so thankful that it has been once weekly this year. Having a morning each week leading up to his surgery where Daniel hears and focuses on God’s amazing workmanship in creating HIM and that God has a purpose for his life has been wonderful for us.
All parents are concerned about the psycho-social development of their children. We all want our kids to have an appropriate sense of personal value. We try to build that into them from the earliest days by meeting their needs, being dependable, loving unconditionally, providing opportunities to discover and develop their skills and interests. As Christians, our hope is that our children learn that their ultimate value comes from the awesome God who made every one of them unique, precious and loves them forever, so much so that He made a way for the forgiveness of their sins through Jesus. In a world that prizes success, beauty, intelligence and physical ability, among other things, the parents of children with special needs have an extra concern about the way the disability affects the child’s sense of self and personal value. When children are quite young they don’t necessarily see their differences, but as they get older they become more aware of how they are different from other children and how they can’t do the same things. The feelings of being inferior and left out can become overwhelming and defining. Special needs parents (or at least this one) are probably extra concerned about tuning into these emotions in their children.
We are beginning to see some of this in Daniel. It is subtle at times, and he doesn’t talk about it often, but every now and then there will be a comment that reveals what is percolating in his mind about his differences and lack of inclusion. He also has an overly strong sense of self at times, and needs a little downward adjustment, shall we say. As we head into what will most certainly be the most painful and extended challenge of his young life so far, I am so encouraged that he has had several weeks of focus on how he, personally, has been made by God, how God is for him, how God will love him forever, and how God made him for a purpose; he is here exactly as he is for a reason, and it is a good reason. We’ll be playing the songs from Maker Fun Factory in the hospital after the surgery and in the months to come as Daniel works on his therapies. Here’s a clip: Made For This.