We went out to eat dinner a few nights ago and after ordered desert. Jared used a pizza type cutting knife on his own and was able to slice his desert into small bite size pieces. Next time we will try this type of knife on something a bit harder like some meat to see if he can cut that up on his own as well.
We are now through the first week and a half of the day program here at Shepherd. There are many goals we would like to achieve while here in the day program. With most things in life we can only do so much in a day and this is no different. We came down here last week wanting to accomplish many things but once we started the program and saw what limited time there was, we modified our goals to be a bit more realistic.
When any of us thinks about life goals they typically are things we see taking place over a long period of time. With Jared and his injury this is no different. Where the difference comes in is what the goals are now. We have goals like being able to get dressed on your own, or being able to get into and out of bed without assistance. It was not that long ago where these were things that didn’t even come to mind never mind being a goal to achieve. These are just a few of the very basic things we now have to figure out how we can accomplish without the help of others.
I have been here with Jared for nearly the entire time from the beginning of his injury and I can say Jared has been able to make tremendous progress. He actually would be a bit further along had I not been around as I provide a bit more assistance then he actually needs. When I watch him struggle it is so hard to not want to step in and help but what he needs is for me to be nearby should he truly need my assistance but to let him struggle. Only when he get upset and angry at himself does he truly push hard. This is where the progress comes from as painful as it is to watch. As parent we never want to see our children struggle and we try to help them and guide them in any way we can. Unfortunately for Jared that is not helpful and he needs to fight his way through to get the most out of his therapy.
One of the nice things about being here at the Shepherd center is we are very close to my brother Marty. He and his wife Karee have been very supportive and helpful in many ways during the time we have spent here. Last weekend Marty came and picked us up to take us out to his house for a much-needed break from the hospital life. We had a nice cook out and relaxing time. On our way to the house getting in the car it is still a big struggle for Jared and we (I) typically help him. This time he didn’t want my help and was determined to get in the car on his own. After several minutes of watching him struggle I had to walk away as I couldn’t take it any longer, watching as he had to put out so much energy and effort just to pick up his legs and get into the car seat. Jared did not give up and he pushed until he succeeded. It was amazing to see and we all applauded him and congratulated him on his success. He was happy he was able to accomplish it but at the same time he was now exhausted and very frustrated. How could something that was such a simple thing to do just a few months ago now take every bit of energy and effort to accomplish. This is why we are here at the Shepherd Center. They help us to learn how to deal with all of these types of situations, how to use the best technique and how to work at getting stronger to make these things easier to do. Just one of the many goals we have when here in the day program.
Getting into bed and then getting undressed presents many challenges. Yes Jared has to get into bed first and then he gets undressed. This can be difficult for anyone to do but imagine only using your arms to move yourself around and to remove your clothes. It is an extremely difficult task. On top of that throw in not being able to use your fingers and the amount of effort goes even higher. What takes most people a few seconds to accomplish becomes a 15 to 20 minute struggle. For Jared these are things that are further complicated as he is dealing with muscle spasms that make it very difficult to move, his legs lock up and stiffen up preventing him from moving them around. Medication and stretching help but this will also be an ongoing battle that we will continue to look for different solutions to provide him some relief. Just one more of the goals we have and will have for some time.
I wish I could tell you all that things are much better than they are. Although we have made tremendous progress and there has been a lot of improvement we still struggle with the basic things in life that we all take for granted. Bowel and bladder are at the top of the list and all spinal injury patients would pick these to get back first if they had a choice. We have been able to move the bowel program to every other day and that has helped to reduce the number of times we deal with that on a weekly basis. Now we just have to figure out the right combination to get the best consistency so the DIL program is successful. Unfortunately the bladder is a much different issue and this needs to be taken care of every 4 to 6 hours depending on the amount of liquids consumed and the time of day.
With this type of injury the legs tend to fill with water throughout the day as the normal muscle functions that keeps the water from pooling no longer work. At night with the legs up the fluid moves back into the body and into the bladder filling it much faster than during the day. This can push IC volumes to well over the safe 500ml limit. IC’ing every 4 hours tends to keep the volumes down but we have seen several times where the volume is in excess of 750ml. This amount for anyone that is not impaired would have you up and out of bed way before you ever got to that limit. For Jared he does not feel the pressure but his body gets to the point where it releases to reduce the volume and pressure. We call that reflexing. Not a nice way to wake up as you can imagine. There are condom catheters that we use to catch the reflex but those are frustrating to deal with but better than changing the bed in the middle of the night. Add a UTI and reflexing happens even sooner. The good news is that with time and experience these things do get better and can be managed. No drinking water after 7 and keeping the volume down later in the day. At the same time making sure to drink enough water throughout the day to prevent a UTI in the first place. A difficult balance to achieve. This is and will be an ongoing process that is now part of our new normal.
I wish I had the energy to put more posts out but at this point I typically only get a few hours of sleep each day and I just have had a hard time finding the strength to add this to the list of things we are dealing with. I will try to put out a few more updates as there is still much more to say about all that we are dealing with. For now just know we think of everyone out there that is keeping us in your thoughts and prayers. We have come a long way and the support and caring we have seen from so many is truly uplifting.