What a Little Sleep Will Do

Oh Lord...I am trying! Actually I believe I am being tested. My faith is truly being tested and I am afraid I am failing. Every day there is something new or new rules or new guidelines or new doctors. Every night about 8 p.m. David starts having issues. Either his heart rate spikes or his temperature does. As of the last day or two...his blood pressure has begun spiking too. We have also thrown in a couple of seizures for good measure and a real good choking spell tonight along with congestion out the wazoo and with all of this.....what you have is a recipe that ensures Mom will never close an eye to sleep again.

While I am tired....I know that what I am going through is nothing compared to what David is currently and has in the last week gone through. His bones have been cut and twisted. Plates have been inserted in his body. He has lost blood and vital fluids and quite honestly.....his body has been through hell. Through it all though....he can still manage a "yee haw", he seldom cries and for the most part he has maintained a good demeanor and can still be distracted by Spongebob. With all of this....I have no room to complain at all.

What a difference a few hours sleep can make. The first two paragraphs were written last night about 12:30 a.m. when once again sleep looked like an unreachable shiny object in the distance. However, after having a mini seizure and then a scary choking incident followed by a panic attack....he settled down and drifted off to sleep. His heart rate and SpO2 sats were very good. His blood pressure was a little high but he is in a lot of pain. When I was sure that he was doing well, I decided I had to do a couple of basic hygenical (is that a word?) things for me. I have not left his side since we got here and I was out of clean clothes so I left him in the care of his nurses and went downstairs and did laundry. That was quite a leap of faith for me. Okay to be honest I ran back and forth from the LL to the 10th floor several times...but hey....I made the effort. Once the clothes were clean I decided that I couldn't put clean clothes on a dirty body (and yes....I was smelling again) so I took a shower!

The possibilities of sleeping were still iffy as I donned clean clothes, but at least if I had to spend another night awake....I wouldn't offend myself or those who had to be in the room with me. Luckily even after laundry and a shower he was still sleeping comfortably and his vital signs were good. I decided to try the whole sleep thing. I dozed off immediately to be awoken within five minutes with the alarm going off because his sats dropped to 85. It wasn't real...his little finger thing was coming off. We got that fixed and once again I laid down hoping I could drift........ I was out. I don't remember anything until the resident was waking me up this morning about 6 to talk to me. I had slept from about 1:30 a.m. until 6 a.m. I felt like a completely different person. Yay me! Today maybe I will be a little more ready for the day.

Yesterday was a hard day for David. I think this was the first day he REALLY felt his pain. Dr. Keeler had told us that we could keep his splints and leg wedges off him during the day. I don't think he is ready. We tried putting him in the wheel chair yesterday with no leg support and he was in agony. He was screaming and hitting and biting. I have never seen him cry like that. He literally begged me to put him back in bed. I explained to him that putting him back in bed would hurt just as bad and that if I did he couldn't hit, pinch or bite me. He shook his head "yes" that he understood. I then proceeded to lift him back into bed. He whimpered and cried a bit...but there was no fighting. He was so glad to be back in bed.



After getting him comfortable I reassessed the situation. It was then that I decided a couple of things. First I decided that any transfers or body adjustments in bed were going to include his splints and wedge for the next two weeks. I also decided that pain meds would be in him for at least 20 minutes before we decided to do any moving. I am also learning that his back is very much affected by his hips. When he is transferred back into bed his bed has to be sitting up pretty straight...otherwise he is in a lot of pain. Thank God for all those who helped fight to get him a hospital bed. (By the way...it HAS been delivered!)

I realize when we get home that we will have to work to get him comfortable without his wedge and his splints and we will. He has to be up in his wheel chair at least 3 times a day for at least 1 hour each. I will see that it is done. By the time we come back in a month...I hope to have him progressed to being able to do most everything without much if any pain. I have no doubt that David is going to once again show the world how tough and amazing he truly is.

Yesterday they decided that David was peeing too much. David always pees too much! After all....he is a teenage boy in a diaper who drinks about 64 ounces a day. There is going to be a lot of pee. Currently he is a teenage boy in a diaper who is on a constant IV fluid drip, has had several fluid boluses and still drinks about 64 ounces a day....and yet they are amazed that he pees like a race horse? Go figure! Still...they were concerned so they are having him checked out. I think they are just covering all their basis since they want to make sure they aren't missing something. So far we have been visited by the kidney doctor, they have drawn blood and also taken urine. We should know some preliminaries this morning. While I don't believe there is an issue here....I just hope I am not blind sided by something new. I have had way too much of that already! 

As I said...the ortho resident woke me up this morning to tell me that David is doing very well. He has been without a temp for 36 hours and other than when dealing with bouts of pain....his vitals have remained very good. Provided we don't find any issues with his kidneys (please God...no more issues!) then we should be good to go home tomorrow. I think David is very ready to go home and see his Spud, Izzy and the new addition to our four legged menagerie....Shane. I am sure he will also be glad to see is big bubbies Z too. I know I am beyond ready and I am confident that I can handle all that is to come.

I have spent the last few days having the nurses show me everything from changing his diaper to transferring and repositioning him. After they show me...I make them step aside and let me do it all. I want to be completely prepared when I get home. The staff has been awesome and they have loaded me down with supplies that I will need when I am doing it myself.

Davids bandages will be coming off in the next day or two but I will have to watch Mr. Elam like a hawk. He has been dying to go after those steri-strips and they are not quite ready to fall off yet. We really don't need any scabbing or infection setting up. I will say this.....as far as his surgery went....it couldn't have been better. His hips and knees look wonderful and I have great hopes that this will give him a much more independent and mobile life. 

It has been a good morning. David is bathed and now in his wheelchair (not one of his favorite things....yet) and soon we will be walking around looking at the garden and heading to the cafeteria. We are hoping today's lunch will be his last lunch here.

I am grateful today and hopeful (see what sleep will do for a person) that we are on the road to a new and better life for David. This week has been trial by fire for both of us and yet we continue on. Thank you all who have supported us and prayed us through this. We couldn't have done it without you!