Month: July 2017

First, thank you so very much to all who have been helping us with meals and providing help with the children. Also, thank you for all the prayers on our behalf. We have had two nights of awesome sleep, and then some nights of iffy sleep,  but better than before, so thank you very much for praying for that on our behalf.

Second, I have been wanting to post about the changes we see in Daniel since his surgery. He is very weak, and it is discouraging to see him struggle so, but we know this is a marathon, not a sprint and we will persevere. However, there are some cool changes we have seen already and those are encouraging. You may remember this sweet picture of Daniel napping while still in the hospital. See how his fingers are laced together? He was never able to do this before because the fingers on his left hand were too tightly fisted.  I have seen him sleep this way a time or two since we’ve been home and it warms my heart. That he can do this himself as he is falling off to sleep is very exciting for us.

The muscles inside Daniel’s mouth have been challenging for him since he was born, and contributed to a lot of feeding struggles early in his life. More recently this has made it really hard to brush his teeth, because his tongue has always reflexively pushed out against the toothbrush. Since the surgery we have experienced less of this and are able to brush with less struggle. Hip hip hooray! Wasn’t expecting that little benefit!

After we were able to get Daniel up a few days after the surgery I noticed immediately that the appearance of his legs had changed. Even though he was in his wheelchair his legs looked like normal little boy legs! Because of the spasticity in his muscles, his legs always looked thin and tight. To see him up that first day with legs that looked like the relaxed legs of any other six year old was very touching.  It is a lot easier to help him get dressed without the spasticity fighting against us. He doesn’t have to deal with his feet shooting outward while he sits in his wheelchair either. It used to be that whenever he got excited about something or was working hard on something with his hands, his legs would tighten up and push out straight. That doesn’t happen anymore.

Another biggie that we have noticed is that the nighttime grinding of his teeth is almost completely gone. The tightness and muscle cramping in his legs at night have been painful for him for years and we would hear hard grinding of his teeth nightly. The week before his surgery we actually had an emergency trip to the dentist because he has a chipped tooth. The dentist attributed the chip to all the grinding Daniel does in his sleep. This tooth still needs to be taken care of, but we are not hearing the grinding from Daniel’s room any more while he sleeps. What a blessing for him to not have that particular pain any more. He is still uncomfortable from the surgery, but I am excited for him that once he is fully healed he will be able to sleep peacefully. What good news!

He has had physical therapy appointments almost every day since the surgery, and he is working hard. He is also experiencing frustration, weakness and pain as he goes through these appointments and has had some problematic behavior during some of these sessions. Please pray for him about this. Long term benefit doesn’t mean much to a six year old who is struggling and in pain, so finding motivation to do the work in the moment is something his therapist and I are working hard to discover. It can change with the day. We are using charts and goals and prizes and whatever else we can think of, but this is an especially challenging part of the recovery. I have to keep reminding myself that it has only been two weeks, and of course he is uncomfortable and it is so, so hard to do this work. I am sure when we have a few more weeks under our belts he will begin to be encouraged by his newfound strength and I am hoping this will in itself become good motivation.

We have been getting him in the swimming pool every afternoon this week as a second therapy session. He really enjoys this and I know the movement of his legs in the water is excellent for his muscle building. We have seen great improvement in his moving in the water just since Monday. Yesterday he wanted to “jump” in off the side (sitting on the edge and basically leaning forward until he falls in) over and over and over, just laughing each time and saying “I want to do it again!” I’m glad that this form of therapy is more free-form and much more fun for him.

Our whole family continues to feel stretched and overwhelmed by our situation, but it does help to focus on the positive changes we see in Daniel and that as we get further and further from the surgery date things will improve more and more. We are so grateful for your support and encouragement, and gifts and cards. Thank you! Thank you!

It is so hard to believe it has been over a week since Daniel’s surgery. These last 10 days have seemed surreal in many ways. It has been hard to believe we are actually at this point. After over a year of considering SDR for Daniel, then months of deliberate focus on applying for the surgery, being evaluated and then actually preparing for it, it feels strange that we are on the other side of it now.

Things in the hospital went exactly as we were told they would. Aside from minor things like failed IV’s there were no surprises. Dr. Park’s team really knows their stuff, and have done this so many times they know just what to expect. They have done a great job of communicating these expectations to parents as well, so in spite of the challenge of going through the surgery and subsequent hospitalization, we were very well informed and things were very predictable.

Since we have been home things have been very hard and hence the lack of many posts. I have posted videos on Facebook of clips from therapy sessions, but otherwise have not had time to write about how things are going. Our nights have been very hard, with pain, discomfort in his bed, medication reactions, it seems. Last night we got a few uninterrupted hours of sleep, and are hopeful for more good nights to come.

Daniel is very weak, and this is hard for us to see and process. This weekend he cannot stand up at all, even holding on to something. Therapy is going to be hard, hard work. He has done well in therapy so far, and his therapist has said he is doing better than she expected at this point, so that is good news. We were able to get him in the pool today and will try to have him swim some each day this coming week, as it is expected to be hot. In the past swimming has really helped him, and we are hopeful that it will continue to help him build strength. He has been unwilling to eat or drink very much and so has been having some headaches as well. He is easily agitated and very uncooperative at this point. We are desperate for your prayers for our family.

We are so grateful for the help we have received with meals, and so touched by the cards and notes many of you have sent to Daniel. I had arranged for mail to be forwarded to the house from his mailbox, but we hadn’t received any forwarded mail, so I stopped by the box later last week and was so tickled to find it just full of special things. Thank you so very much!

Monday morning Daniel had a physical therapy appointment and we reviewed discharge instructions then we were on our way home. The night before had been difficult with little sleep for me, as  predicted muscle spasms had kicked in. Daniel also didn’t have the epidural in any longer and after the two PT appointments on Sunday he was feeling the pain a bit more. He had asked to get up and drive his wheelchair around a bit and go back to the garden before his PT appointment Monday morning. In the midst of all that I forgot to get his pain medicine before PT, so it was a rough session. I felt terrible and it was hard to see him hurting and struggling so. Especially after all the good work I had seen him do the day before, and some awesome walking I saw his little friend Noah doing in the session just before Daniel’s, I felt so impacted by what is ahead of us and felt really discouraged. I was reminded that the three steps forward, two steps back experience is an expected part of the recovery and Daniel was really doing great, but I found myself anxious about going home and not having the support of the hospital staff. Unfortunately my tiredness was getting the best of me and this perspective hung with me the rest of the day.

Getting home was good. Daniel seemed really glad to be home and we were hopeful for a good night of sleep for all of us. Unfortunately we may have had the worst night yet. Daniel was struggling in his bed, having a hard time moving around and experiencing muscle spasms (these are expected to only last a few days). The air conditioning also went out and as the night went on it got hotter and hotter upstairs. Daniel didn’t understand and was furious that he was so hot, screaming and throwing an absolute fit for a long time. We finally got him settled and I got to sleep again around 5 a.m. David so sweetly took care of Daniel and let me sleep until 8:30, but we are just so exhausted. It was a rough day in regard to Daniel’s behavior, which I am sure is exacerbated by how he feels and that he hasn’t been getting good rest either. He had a PT appointment this afternoon and worked hard. His therapist said he was walking better than she expected him to be doing at this point so that was encouraging. The stress is definitely hitting us and I am now sick with a cough and slight fever. We are definitely feeling the pressure. We are praying for a better night tonight. My wonderful husband fixed the AC with a $10 part from Home Depot, so three cheers for David! We are very thankful for AC tonight!

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!