The Journey Continues On........

I look back at the last week and a half and all I can say is...."WOW!" It has been a ride of epic proportions and one though necessary, I wouldn't be sad if I never had to take again. I will admit in light of last Friday's terrifying down turn and some of the less than stellar days that followed....I did question a time or two whether allowing David to have this surgery was a good idea. A couple of times it felt as if the surgery had put his life in danger. That of course was not the case, but if felt that way. Several times I went over everything in my head and second guessed myself wondering if I had just decided against the surgery or at the very least put it off....if things would have been different. Then I remembered....it has never been my choice to make. Not since the moment Jill Cook told me that she had talked to her dad about sponsoring David to go to Shriners. From that second on....God was in the drivers seat and I was merely along to sign the paperwork. David was suppose to have this surgery and for whatever reason....all the other events that have transpired were suppose to happen too.

Even though being at Shriners seems a million miles away right now....it was a wonderful  experience. Dr. Keeler was very good at what she did and David's hips and knees look awesome. The incisions are beautiful (if that kind of thing can be considered beautiful) and there is absolutely no redness or puckering. The staff at Shriners were amazing also. I have spent plenty of time in OR pre-ops and post-ops over the years. Never have I seen such an efficiently run nor such a patient/family oriented staff. Before surgery ever began...I was introduced to every member of the surgical team. Each member took the time to speak with me and tell me what part they would be playing in the surgery. They asked me David's likes and dislikes clear down to the kind of music he would like playing in the OR. Never has that happened before.

After David was taken back we were directed to the OR waiting room and told that we would be called in an hour with an update on his condition. At exactly one hour on the dot...they called to give me an update and then gave me the next time that they would call. This happened until the surgery was complete. When the surgery was over and David had woken up enough in post op...we were then allowed back to see him. The nurses were truly lovely to my mother in law and I and after my MIL left....they allowed me to stay several hours after the recovery  room visiting hours were up. When I eventually was asked to leave....they were more than understanding when I continued to call to check up on him and when I even snuck back down a couple of times for my own peace of mind.

Once on the floor...the floor staff were just as nice as all the others. With it being a smaller setting, the nurse to patient ratio is more proportionate which doesn't leave you with the feeling that if you have to step out....no one is paying any attention to your child. In fact...the nursing station is directly outside all the doors as the rooms are built in a circle around the station. The nurses are constantly checking not only on the well being of the child...but also the well being of the family. It is really a refreshing change from what you see in most hospitals.

As I have said before...I must give Shriners a great big hand for being crucial in helping to save David's life. David's life threatening condition was brought on not by anything that Shriners did wrong, but by the fact that he aspirated both food and drink when he was coughing while eating. I wasn't even aware it had happened until he was suctioned. Once though, they realized that David's health was compromised and even life threatening Shriners acted very quickly calling St Louis Children's Hospital to come get him and take up treatment where they had left off. The transition was seemless and the transportation was quick (even though it didn't feel like it at the time). Before we left Shriners the nurses, social worker, respiratory therapist and physical therapist were all there asking if I needed anything and trying to explain to me exactly what was going on. They were kind, compassionate and amazing....not things you always find in hospitals these days. I can't thank those at Shriners enough for all they did and for what I have every faith they will continue to do in the future where David is concerned.

We were doubly blessed with healthcare here in St. Louis. When we were brought to Children's...I didn't know what to think. The Children's transport team though were fabulous. I know that is a bit of an over the top word...but the job they did was over the top. They saved David's life. The team worked quickly to get meds and blood into David and somehow we made a close to half hour drive in just a matter of minutes (in traffic no less). Like I said...they were fabulous! Once at Children's...as we were ushered into the PICU, I knew immediately that David was in excellent hands. Three nurses gathered around him and began cleaning him up, changing his dressings and making him comfortable, while a doctor began asking me questions and allowed me to bring her up to date on what was going on with my little guy. Within 30 minutes David was showing signs of improvement. I was thankful beyond words....especially after I heard the doctor talking to someone at Shriners and telling them that another hour and they would likely have lost him. THANK YOU THANK YOU THANK YOU for helping us not to have gone down that road.

That night the PICU nurses and staff were wonderful. They constantly asked if I needed anything, they answered any and all my questions and a nurse was never more than 10 feet from him....always with a careful eye cast close by. It was amazing to know that my child was in such good hands.

When moved to the floor (10 W)....I was and still am....beyond impressed. Floor care is usually not as good as the acute/we need you right now care. Usually it is because the nursing staff is out numbered by the patients and the ratio is often 5 or more to 1. I have no idea what the patient/nurse ratio is at Children's but never once were we left hanging or waiting on anything. The nurses were punctual and efficient with everything from vital signs to meds and the bedside manner of all of them was friendly and professional.What I really liked too was that the staff actually listened to me and realized that after 11.5 years....I had a little working knowledge of David and his actions and reactions. They also realized that I wanted to be hands on in his care as soon, I would be the main one/often times the only one taking care of him. I would ask them to show me how to do certain things......watch them do them.....an then take over myself. They were more than willing to take a supervisory role in Davids care and allow me to put into practice how to turn, change and transition David. Without this experience....going home might be very difficult. They have been amazing. 

So today we go home. A part of me wants to grab David and run forward to this new experience. I actually feel ready for what lies ahead and I am confident that David is going to meet and exceed all goals set out for him. He will be my priority until he does. I won't lie though...there is also a part of me that is a little scared about what lies ahead. In just a few hours I will be on my own. There will be no nursing staff to fall back on and no monitors to warn me of anything. It will be just him and I and my instincts. It will be an adjustment but something I do think that I am ready for.

The time since we first stepped aboard that little five seater plane to come out here has been life changing. So much has happened from the emotional to the physical....that I feel like a different person. I honestly feel like I am on a different path now. It is a path I never saw coming but at the same time I am so excited to be on. I have absolutely no idea where I am going.....I just know I am ready. I see the same thing in David. While David has always pretty much understood anything I have said to him....he hasn't always listened. In the last few days...this has begun to change. His body has gone through a lot and like me....so have his emotions. While there are times he is in pain or frustrated and this comes out in his emotions with crying and even a little bit of aggression.....when I grab his hands and start explaining what is going on....he actually stops and listens. He acts on my words and he understands. I have explained that the only way to get through his pain is to move. He has to get in his wheel chair even though it hurts and he has to move in bed. He is more and more willing to allow me to put him in the chair and in bed...he is sitting himself up (this in itself is painful because of his hip surgery) and when I have to move him from side to side to change him or reposition him....he actually helps by grabbing the sides of the bed and doing a lot of the work himself. It is amazing and yet I don't know why I am surprised. This is all apart of the  determined attitude and spirit he has shown since he took his first breath outside the womb. The fact that he is listening and working so hard tells me that Dr. Keeler may be very surprised in May when she sees us again.

I already have his next appt. scheduled (May 25th). He is to be non-weight baring until that point...which means bed and wheelchair only with basic muscle manipulation. The terrible muscle spasms that generally go along with surgery have been somewhat alleviated by David's baclofen pump which means working with his muscles and doing range of motion will be much easier. I plan by May 25th to have David over much if not all of his pain and have his muscles to a point where he will be ready when Dr. Keeler gives us the okay....to start hard core physical therapy and be able to start weigh baring immediately. My hope is that by the time school starts....David is already showing a more independent and mobile life style.

So there you have it! As of 12:45 p.m. today....David and I will begin the next leg of this journey. I am hoping that the REALLY hard part is over and that from here on out....our hurdles are much smaller and much more quickly cleared. To the staff at Shriner's and also at St. Louis Children's I say thank you! You have been wonderful and you have changed David and I both. To all my family and friends and even complete strangers who prayed us through all of this and who constantly passed on kind words and good thoughts....you will never know how much this meant to me. And finally....for all the angels who sent other angels to me and the angels that just showed up.....you may not know it, but you saved me. You held me together and kept me from crumbling at a time when David needed me most. Thanks are not nearly enough....but it is all I have and it is very much heart felt. Thank you! 

And now, the journey continues on.........