The First Day of the Rest of His Life

So here we are, one day post surgery. I won't lie, the days leading up to the surgery had me crazy. Yes, crazier than I usually am! David wasn't feeling great the week before so he stayed home from school hoping to ward off any germs and sickness that might push the surgery date back even further. 

I had not really talked to David about the surgery simply because I didn't want him agitated or upset those last few days. Silly me, I should have known how in-tune to me he was and that he would have naturally picked up on my "craziness". He did not sleep more than two hours from Saturday until yesterday at surgery time. He was wound up, irritable and just generally acting the way I felt. 

Lucky for me I had a couple of distractions in the form of fundraisers on Sunday which helped to keep me from completely going over the edge and David had a couple of visitors that had the same effect on him. We made it to surgery time and here we are today.

As I was getting ready to leave for the hospital yesterday morning, it was a surreal feeling of peace and anxiety all rolled into one. I am sure this weirdness was brought on by lack of sleep and sheer stress. David sat silent all the way to the hospital but as we made our way to admissions, I definitely saw a change in his demeanor. He became almost sullen as if he knew what was coming. 

Once taken to pre-op, I could just feel every muscle in his body tighten up. His cooperation in putting on the gown and getting situated was nil and when a nurse took his arm to take a blood pressure he started getting a bit combative, mistaking her actions for those of someone looking for a good vein. Hint: he has no good veins anymore. 

I truly hoped that he would be able to be in the OR and somewhat sedated before they began trying the daunting task of vein searching and sticking, but this was not to be the case. However, there is a lot to be said for pre admission and doing it several weeks early. By doing this, they had the anesthesia team ready to come down, bring their magical equipment (a sonography machine) and immediately find a vein. Unfortunately that vein was high up on his arm almost to his shoulder. Yes....I cringed. Quickly finding the vein didn't mean that it still didn't take four of us to hold him still for the stick. For being the size of a twig and having cerebral palsy, he has amazing upper body strength. Most people don't ever see this as it only comes out when he is about to get stuck or he is highly frustrated. The good thing though is, the moment the needle is in, he is fine and back to his mild mannered, easy going self. 

For the first time ever, after arriving at the hospital at 5 a.m. with the intent of having surgery at 7 a.m., the surgery schedule was running on time and like clockwork. At 6:45 a.m., David and I were at "surgery corner" where we hug, kiss and then he goes to surgery and I go to the surgery waiting room. 

Like almost every surgery he has ever had, I walked into the waiting room, sat down and realized that once again, I was all alone. Initially I absolutely hate the feeling and I start having a mental conversation with my late husband Tim, telling him once again that I am not happy to be sitting their without him. Then though, I start to get lost in the solitude, find a chair where no one is likely to strike up a friendly conversation or annoy me with their loud conversation either on the phone or with others, and I settle into the "comfort" of my own thoughts. 

Except for a couple of eight hour hip surgeries which were a doozy, most of David's surgeries have been no more than an hour or so, but I was prepared for this one. I had been told initially to expect at least a 4-6 hour surgery as they were going in and fusing his spine and putting a rod in from T10 down to his pelvis. However, talking to Dr. H in the pre-op area, he had stated that there was some concern of David needing a possible future surgery on his spine because with lower curvature and repair such as this, sometimes after recovery, their upper spine will start to curve above the repair. This worried me a bit and I asked if they could just go up and do the surgery higher to avoid another surgery later on. He said he really didn't think that would be necessary, especially since it would be a tougher surgery to recover from and a longer anesthesia time. I told him that I would defer to his judgement then but if he got in there and felt that it would be better to do the longer surgery, to just do it. Low and behold they hadn't been back there 30 minutes when I got a call from the OR. It was Dr. H telling me that he and the other surgeon had decided that it would be in Davids best interest and the best interest of his long term recovery to do the longer more excessive surgery (T4 to the pelvis). Cool....no more spine surgery after this. This also meant at least a six hour surgery. I prepared myself in my little corner of the waiting room. I prayed first and then began a marathon game of Candy Crush. 

I was notified by text message that surgery began at 7:50 a.m. I mentally counted the hours (on my fingers of course.) I was too tired to do that kind of math in  my head. So I was going to be there until at least 1 p.m. waiting for this surgery to end. I knew my Candy Crush skills were not good enough to get me that many hours of play so I was glad I had my Kindle loaded with books. At 10:29 a.m. I got the text message that the doctor was finishing up surgery on my "loved one" and that he would be out to talk to me soon. I did the math on my fingers once again and realized that it had only been 2.5 hours. I assumed that they had sent the message to the wrong person and went back to reading the autobiography of Eric Braeden. Much to my surprise, within 20 minutes Dr. H appeared in the waiting room doorway and came walking towards me. Even though I had received the earlier text message, I still felt my body tighten up. There was the slightest twinge that maybe the news he was bringing me wasn't good. Immediately though, his smile told me different. He said the surgery had gone "perfectly" and quickly and that he was on his way to recovery. My heart began to beat again. 

Tuesdays or at least Tuesday April 10th, must have been a big surgery day at Wesley. The waiting room had been full all morning (making finding my quiet corner difficult) and apparently the post op area was crazy busy, so instead of taking me back to see him, they took me to the PICU Ronald McDonald room to wait for him. Now that wait would have made me crazy, not being able to see him right away, if not for a friend coming up to wait with me. We talked and the minutes that would have seemed like hours otherwise, went by fairly quickly. 

When they came to get me, they took us to one of the newly (within the last couple of years) PICU rooms. They really are amazing with doors on the room and everything. Our previous PICU stays had been behind curtained divided stalls with room for little other than a patient bed, equipment and the torture devices they called chairs. Now though, there are actual rooms with parent couches that fold into beds. It is wonderful! 

I was immediately taken aback by the paleness of my "baby boy" when I first saw him. He was so pale he was almost clear, but they assured me that he had lost little blood and what blood he did lose they replaced with his own. His hemoglobin was good and the paleness was simply the result of the "trauma" to his body in the form of this surgery. 

There were hours or what seemed like hours of him coming out from under sedation and being disoriented and I am sure....in pain. He had four IV's hooked up to him...the original pre-op IV, one in his hand, one in his wrist, an arterial IV and then several obvious bandaged places where there had been "failed attempt" sticks. He had heart monitors, OT sat monitor, blood pressure cuff and his drain. He looked so small and he was not happy with the oxygen canula in his nose. He was trying to fight it all, to the point that they had to soft restrain his dominant hand. Remember that super strength I told you about earlier? Well apparently sedation doesn't slow it down at all. 

Finally a couple of hours later, he began to be more coherent and aware of his surroundings. The restraints went away but he was not pleased with the catheter down below and so we had a bit of a struggle trying to keep him from pulling it. Finally I got frustrated and simply told him...."You pull that out and it's REALLY going to hurt. And what's more....it will have to go back in!" It seems that his desire not to be in any more pain than he was already in far outweighed his frustration with the tube coming out of his penis. We had no more issues in THAT area. 

The rest of the day, the nursing staff played the less than fun game of trying to stay on top of his pain, without keeping him so sedated that it affected his breathing. It is a delicate dance that these poor nurses have to do, staying within the perimeters of doctors orders and taking into consideration the affect on the patient. David has a very high threshold of pain, but that is not to say he doesn't feel pain, so we spent the evening/night watching the monitors making sure that the morphine and other meds weren't sedating him to the point of forgetting to breathe, all the while keeping his heart rate and blood pressure where they needed to be. There was also a period of time where there was concern about the amount of blood coming out of the drain. It was concerning enough that they still weren't ruling out having to give him a transfusion if the drainage didn't start to lessen.

Thankfully, both the day nursing staff and the night nursing staff were amazing and on their toes at all times. Even with this, I was a mother on the edge and getting more and more sleep deprived as the hours creeped on. It was getting to the point that I was concentrating more and more on the monitors and the numbers going up and down than I was on anything else. I think I was also driving the nursing staff crazy, alerting them to every shallow breath or monitor blip. Finally, the night nurse who obviously had had a bit of experience with neurotic parents like myself, reminded me that if I got some sleep, David might also calm down and get some sleep. "And I can actually get some work done and tend to other patients," is what I am sure she was also thinking but too kind to say. So finally about 3 a.m. my eyes closed from sheer exhaustion and I knew nothing until about 7:30 a.m. this morning. 

Today has been much better in the respect that David's drain is having less and less in it. They pulled the catheter which as I promised him, did not feel good at all, but at least this way, they didn't have to put it back in. They were also able to remove two of the four IV sites. His incision or at least the bandage on his incision looks great with very little seepage. His vitals are all great, his color is back and he has been released to eat today. He is also off the morphine and has been brought down to toridol and loritab for his pain. He is also smiling today and watching his favorite Nickelodeon shows. There is much to be grateful for as the PICU nursing staff are amazed at how quickly he is recovering and getting ready to say good-bye to us as we prepare to make our way to the general pediatric unit. However.....some grave realizations have set in this morning. 

I did as much checking as I could prior to surgery to find out what I would need for his home care and after talking to everyone I knew that had had this surgery (unfortunately I had no visits with anyone with CP) and after talking to the doctors nurse several times, I was confident pre surgery that we were good to go. Today my confidence is in the toilet and I am for the first time in years, questioning if I am equipped both literally and figuratively to do this. Of course I will make it happen and get equipped ASAP, but dang......

David had his first physical therapy session this morning. It was at this point that the realization that EVERYTHING that we had come to know and do where David is concerned is going to change dramatically. 

Over the years, David has adapted to his world and his physical limitations by finding his own way around them. He is a fiercely independent young man and truly, very little limits him. We have also found ways and routines that work for us from eating, sleeping and diapering to communication and mobility. For years we have been a finely oiled machine that runs with little or no outside help. The outside help was not our choice, it just is what it is. Today though, we found that just about everything we do will have to be redone, reviewed and reworked. 

The PT sat David up on the side of the bed for the first time. Sounds simple enough right?! It's not. David has always sat himself up in his own way. He can't now. At least not for awhile. The old movements he was used to will no longer work because he now has a foot long or better rod in his back that no longer allows him his usual movement. Sitting up now requires a log roll movement followed by elbows, arms and a lot of help from another human being in order for him to sit up. Once there, he now has a lot of pain involved so time at a 90 degree angle on his own is extremely limited and even with help, he didn't last long. Then there was the standing. Again, the pain is a huge deterrent right now, but the surgery has put some height on him....probably a good 2 inches, so the walker that was already at height capacity is no longer going to work. Work or not though, it will be a bit before standing and walking will be in his bag of tricks. I was promised though, by the PT, that it is coming quickly. After a painful few minutes, David was tucked back in bed and asleep. It took a lot out of him. She is coming for him again this afternoon though, so it will be interesting to see how that goes. 

Knowing something intellectually ahead of time and realizing the reality of said thing when it has to be put into action are often two different things. I knew ahead of time that life would be different post surgery. I just was in denial I guess, about how different. Today I learned that at least for now and maybe forever, my van is no longer going to cut it. Up til now, I have lifted or David has helped transition himself from his wheelchair into the seat in the van. No longer is this doable as he can't be lifted. Even leaving the hospital will not be possible without getting a wheelchair accessible van transport to take him. All of his equipment (walker, leg braces, wheelchair, stander) are either going to have to be replaced or readjusted to fit his new straight spine and the life that goes with it. His favorite mode of mobility next to his walker (crawling around) is no longer doable. Even changing his diaper has to be revamped and relearned by me as our old system simply will not work. 

The thing that stood out most to me today was that for David to get the most out of his recovery and to come back to be the best he can be, I am going to have to have someone (likely a physical therapist) come to the house at least 2-3 times per week for awhile. I have so much to learn and he is going to need so much help and work that I am almost overwhelmed. The hospital PT is going to hook me up with the peds care coordinator to help me line everything out, but it doesn't stop my head from spinning right now or my anxiety over my inability to be the mother he "needs" instead of just the mom he "gets"..... in the next few weeks. So much to figure out and I am sitting here mentally in the fetal position sucking my thumb. It is not a pretty picture. 

Please don't get me wrong. I am beyond grateful at where we are at. So far David is so beyond what they expected with this surgery and he is getting better and stronger every second. I also know that with David's mental and physical fortitude, he is going to show us all a thing or two about what spinal surgery recovery should look like. But I am not so naive as to not know this road ahead is going to be long and bumpy one. There will be post surgery rashes from the tape and derm bond that have to be watched to avoid infection. There will be days where he is in pain and he fights PT, me and the world in general. I expect to get pinched a lot (his method of showing extreme frustration) and for there to be days that we both cry and feel that life just ain't fair. I also know though that there will be days when he exceeds all expectation, there will be laughter, joy and most of all there will be recovery. David will walk, he will learn once again to Davidize the world and accomplish whatever he wants. Bottom line, yesterday was truly the first day of the rest of his life and it will be an amazing one, with less pain, more mobility and I have no doubt that whatever he does....he will be amazing!