Saturday, June 30, 2018

RockStar


Well it has been about 11 weeks since my last blog post here. My how time flies. Things have been moving right along. In my last blog post, David was still in the hospital. Since that time, he has been home, recovering, had two ortho follow ups and has seen PT. Both follow ups showed that he was doing fantastic and his PT was also very happy with his progress.

This surgery has been the easiest/hardest surgery he has ever had. It was the easiest in respect to how the surgery went and how fast he has recovered as well as how he is progressing. It has been the hardest because of course, what was going on with the house during his surgery and the first part of his recovery and also because this surgery and recovery were foreign to me.

After 17 years with the Incredible Mr. David, I am used to pretty much anything that comes in the world of David, but this surgery has been different. It has really thrown me off my game. I had expectations of something much worse where the surgery was concerned and I was prepared for just that. When everything went well and we were out of the hospital in a fraction of the time that I was expecting, I think it totally threw me. This whole ordeal has been much less of an ordeal from beginning to end and much more like a minor speed bump as far as David's life goes. Truthfully though, David probably felt more of the "ordeal" than the rest of us, but he is a rock star and nothing gets him down.

As I said, the surgery and in hospital recovery were amazing, but again, the at home recovery has thrown me for a loop with my expectations vs. reality. Once I realized that I was not going to "break" David nor undo all that the surgery did, we were good. For the first month we went from the extreme of going back to school to staying closer to his bed than I would have liked but I was on a huge learning curve. Some days he was up and ready to go and other days, not so much. That mixed in with the crazy world we were living in that first month and I was really not pleased once school was out and summer had begun with where we were at as opposed to where "I thought" we should be. I felt that I wasn't doing enough to get him back up and going and that I was somehow failing him in his recovery. It was only after seeing the ortho and talking to PT that I started to feel like we were doing okay. I was also reminded that David underwent an extensive surgery and that it can take 8-12 months before he is even completely back to baseline. We are only 11 weeks out. Sigh......... 

The first of June, David was okayed to get back into his stander. He was still not okay to twist or turn at all as his bone was still healing. They said he wouldn't be completely released until after the 4th of July. Again, there are days that David is up and in that stander for half a day and other days when he seems out of sorts and really not up for all that goes into getting dressed, putting on his braces and moving into the stander and then staying there for hours on end. I feel for the kid and some days I am not up to dealing with his attitude. I have mentioned that he is a teenager....right? Special needs does not mean we don't have attitude!

As the month has progressed though, he is doing much better as is his stamina. I usually try to give him a couple of days a week of rest and then work him the rest of the time. It is exhausting for both of us. I know the rest of my family doesn't realize both the mental and physical fortitude that goes into this whole process for both David and I. Some days....exhausted doesn't even cover it.

Today and tomorrow I am doing my best to rest as starting Monday, David and I are going to hit this whole PT full force. By Wednesday he will be fully released to swim, ride his bike, use his walker, stander and anything else. Life is going to hit the fast lane and he will be my priority for the rest of the summer.

Soon we should be receiving his stair chair lift and as soon as that happens, I am moving David back upstairs to his room and all the things he loves. He has missed it terribly and has on more than one occasion tried to take his wheelchair up the stairs. When he does get back up there, he will have a wonderful surprise as his room will be all Spongebob!!! The room downstairs that he currently resides in will be his therapy room which he will be spending a lot of quality time in too.

Hopefully going forward, I will be a little better with the posts here and the updates. Hopefully there will be many new and wonderful goals met and miracles obtained, after all David is a rock star and he shows us that every single day. 

Friday, April 13, 2018

Storms....They are a Brewing!

Well, today should be David's last full day of his hospital stay. This in all respects is a miracle. Especially when the original expectation was 10-14 days. We are beyond blessed.

David is getting to remember what a slave driver I am post surgery when it comes to rehabbing him. Yesterday when Dr. H told me that unless I tried to fold him in two, I pretty much was not going to damage him, it has given me more confidence in how I can move and interact with him physically.

When his hospital PT came in yesterday evening, he was really tired and I think there was pain involved but we did get him to stand with minimal human support and only holding on to his walker. It lasted only seconds before his legs began to shake, but it was a huge accomplishment.

Today there are storms brewing both inside and apparently outside too. I took my first venture outside of the pediatric floor and went to Walgreen's for a bit. The air is thick and the sky is darkish and hazy. It is the kind of weather my mom used to call "Tornado weather." I am very sure there are storms brewing as today is suppose to be in the upper 70s to low 80s and then tomorrow is supposed to be in the 30s. You don't have that kind of fluctuation without some kind of storm brewing.

Inside the hospital room there are storms brewing too. David's irritable side is starting to show it's ugly head as well as his stubbornness when it comes to PT. All morning he has been sullen and irritable causing consequences (taking the balloons away) for his actions. They have cut way back on his pain meds with the hope that tomorrow when we leave this place he will be on tylenol and ibuprofen and nothing more. I am sure that the combination of pain, the frustration of having a rod in his back and the fact that I am on top of him constantly telling him what to do is getting ready to cause a storm here too. Thank God we aren't here another 8-10 days!!!!

Through it all though, he is a trooper. PT came in this morning and his sullen face became even more sullen until I told him that if he did his PT like he was supposed to, that he could play with his balloons again. Although he still wasn't totally on board with the concept of having to work in pain, he did buckle down and do what was asked of him. Today he stood with even less help three times for 10 seconds each. Each time he was more and more weight baring which was amazing. On the third time though, his legs were becoming jelly and anymore would have been too much for him. However, he was not ready to go back to bed, so he opted for time in his wheelchair which is where he now sits, playing with his balloons while I blog about him. He seems comfortable and the sullenness is gone.....for now.

Yesterday he lost just about all of his tubes including another IV (down to one now), his drain and all of his heart monitors. All we have now is the O2 sat monitor, the occasional bp cuff and the IV. What a difference three days makes. On a side note, yesterday when they removed the drain, (btw....drains are part of the reason I could never be a nurse), I got to see the incision. Let me tell you, that is a thing of beauty. He has had a lot of surgeries, but I don't think he has ever had an incision so beautifully done. Once healed, even though the incision is about 14 inches long, it is so thin that the scar will be minimal. I was truly impressed.

So we are waiting on the storms. I can even feel the unrest in my own usually "vibrant" self. It's a feeling I usually look forward to this time of year. The static in the air mixed with the humidity and heat. Of course feeling it from a hospital room isn't great, but it could surely be so much worse so no complaints here.

Today is good and miraculous and once again I can find a million and one reasons to be grateful for.....even in the midst of the brewing storms. 

Thursday, April 12, 2018

Day Three: Pain! Pain! Go Away!

Day 3 in the hospital. The third day is usually the worst after surgery. Technically we are only two days from surgery, but after yesterdays PT, I am seeing him in more pain today. It is harder for him to get comfortable and his smiles aren't so prevalent. That being said though, he is doing fantastic. Thank you God. 

Yesterday was the first day of physical therapy for David, and I was on that PT like a helicopter mom stirring up dust and causing chaos. I'm sure I made her feel nervous, fearful and a bit crazy during his first session. I studied every move she made and asked her about a thousand questions. The truth is, David currently terrifies me in a way that I haven't felt since I brought him home from the NICU. This new body he is sporting is wonderful and scary and I am soooooo far out of my league here. But enough about me.

During David's first PT yesterday, he sat on the side of the bed. The effort that it took for him to do something so simple was heart wrenching. Every movement, I have no doubt, felt weird with that rod in his back. Add to that the pain from surgery that undoubtedly is no fun at all and sitting was was quite the workout for him. Then she tried to have him stand. He was nowhere near ready for that and his legs crumbled. The whole therapy was about 15 minutes long, but he was sound asleep before she was even able to leave the room. However, she assured him "she would be back!"

True to her word, she showed back up in the afternoon. By this time, he had slept some, rested a lot and even eaten a meal. She also had a better idea of what his pain threshold was and what his abilities currently are. Immediately she had him sitting up on the side of the bed again. This time, he too had a better idea of what she was wanting and what he was needing to do to sit up. Once sitting up, you could tell he was rather proud. She was not done with him yet though. For his next trick, he was going to transition from the bed into his wheelchair. With the help of both the PT and I, the transition went very smoothly and he seemed to love it. BONUS: the wheelchair alignment really didn't look too bad. DOUBLE BONUS: he is definitely a good 2-3 inches taller.

David ended up setting in the wheelchair for a good 45+ minutes. In fact, they even transferred him from PICU to the the pediatric unit in his wheelchair. Once in the new room, he sat and played with two Mylar balloons that a friend brought him. They are the best PT motivation I have ever seen!

After PT, David snuggled down for some Full House (this boy loves that show) and he ate a pretty good dinner. I could tell the pain was creeping up on him as the group Therapy Dog International came around with some of their fur members in honor of National Pet Day. I could tell David really wanted to interact with these beautiful babies that came to visit, but he opted to just sit back and watch. We were introduced to a Great Pyrenees named Chelsea, two Greyhounds named Penske and Polar and a Border Collie/Blue Heeler Mix named Cooper. Cooper was the entertainer of the bunch bowing, playing dead, shaking hands, high fiving and begging....all for treats. It was an amazing distraction for both of us.

Last night David slept fairly comfortably, which meant mom did too. Except for a few alarms going off a couple of times because David was messing with the wires, it was a pretty peaceful night.

This morning David's pain is making him more uncomfortable. Dr. H came in though and sang David's praises as to how he is recuperating. From the surgery to weening off the pain meds, he is doing so good. Dr. H also gave me some pointers on how I can move and transition David on my own at home. His words, "Basically....just don't fold him in half. Other than that, you won't damage him." It made me laugh and also relieved some of the extreme worry and stress I have been feeling.

Today he loses yet another IV site (we will be down to just one then) and his drain. He is eating and drinking like a champ, so there are no more IV fluids either. He is doing all the right things in record time. In fact, as I type, PT has been here, gotten him into the wheelchair and he has already made the rounds of the unit. Now he sits in his chair playing once again with the balloons and seeming to be fairly comfortable. Today's goal: an hour in the wheelchair this morning and then again this afternoon. The only down side today, he absolutely refused to put weight on his legs. Hopefully tomorrow his pain will be a bit better and with the "gentle" persuasion of his PT and myself, as well as the motivation of playing with his balloons, he will start weight bearing again.

There are still hurdles to get beyond and I have no illusions about the recovery, but I also have faith that this surgery is going to be positive and life changing and that this new world will be huge for my boy.

I ask that you continue to keep David in your prayers as you well know, there are Goliath's outside this surgery that we are still fighting. However....I have faith that 2018 is going to turn out to be one of the most amazing, frustrating, wonderful, did I say frustrating, awesome years of our lives. 

Wednesday, April 11, 2018

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! 

Wednesday, March 28, 2018

Cerebral Palsy Month, Surgery, Updates and Dates...Oh My!

Well, it is 4:30 a.m. and I can't sleep, so I guess it's a good time for a blog!

March has been cerebral palsy month and I guess it is fitting that all this chaos has fallen right smack dab during this month. It is a reminder of why I fight and who I fight for and the constant knowledge that I will never quit fighting.

I know it is crazy, but this whole eviction situation has had so many blessings connected with it. Yes, I have been a walking basket case and lost lots of sleep and eaten my feelings like crazy, but there have been some really great things come about during all of this. First and foremost....I have always known how great David was as a human being and how much I love this kid, but it has been so amazing to see how much others love him too. To see our community, church, family, friends and even complete strangers fight for my kid has had a profound affect on me. With all the negative in the world, these last weeks...I have been given a direct and clear view of the good, the kindness and the generosity of so many amazing people. It has made me even more determined to be the best human I can be going forward and to never let a day go by that I don't find some way to pay forward what has been given my son and as an extension me. I am so far beyond grateful, no one will ever know.

One of the other amazing gifts that this situation has given me is the fact that I have had little time to fixate on David's upcoming surgery. Had this house not taken over my every thought awake or asleep, it is quite possible I would have still been a basket case, but for a whole different reason.

David's surgery's make me crazy. Especially the long ones. I have seen the scary side to these things and I have found myself more than once at his bedside praying that he and I were not sharing our last moments together. I have been told that he is beyond critical and given pretty grim odds at his recovery in the past and in most cases I have sat there all alone, just him and I.... facing the unknown with every second counting. I am no stranger to any of it, so you can probably understand why the weeks, days and hours leading up to a big surgery....especially a potentially life altering surgery such as this...cause me great stress and a lot of worry and over-thinking about the "what ifs." This time though, there has been little time for any of that. I guess I have just had faith that he would be fine before, during and after the surgery. My focus has been that post surgery he would have his home to come home to and that other than the surgery, his world would sustain no more disruption or stress.

Now that we are so close to saving David's home and with the realization that his surgery is less than two weeks away, some of the realities and possibilities of this surgery are starting to creep in and yes....there is a bit of worry involved. I believe this maybe why I am blogging at this hour instead of sleeping.

This surgery is kind of a crap shoot from beginning to end as far as time under anesthetic, time in PICU and time in the hospital, not to mention actual healing and recovery time. I have spoken to literally dozens of people including his PT, his surgeon, his surgeons PA and actual spine fusion patients and all literally give you different times frames about everything. So what I have deducted is that this surgery and recovery largely depends on David and the doctors. The actual surgery itself  of course is dependent upon the skill of the surgeons and what they find going in. Luckily David's surgery is the first of their day (at 7 a.m.) so both surgeons should be fresh and on their game. The recovery though, that is all David. From experience I know that he has extreme determination, so hopefully he will push through and push himself to be on the quicker end of recovery, however.....whatever the case ends up being.....we are both in it for the long haul.

Soon, my worry roles will be reversed and I will have no time to worry or think about anything other than David. His surgery and recovery will take center stage and all else will have to take a back seat. That is where faith steps in and everything from the house to the surgery is put in God's hands and left there. Thank God we were given the extra time necessary to make everything happen (we now have until June 30th) and thank God for all the prayers that have helped us along the way.

So, these next couple of weeks I have no doubt, will fly by. As usual with his big surgeries, I will do my best to keep people updated on his surgery and his recovery process through this blog. David will be at Wesley Medical Center, 550 N. Hillside, Wichita, KS 67214. As soon as we have a room number I will let you know, so if you would like to send David a card, I know he would truly appreciate it. You can also send them to our home and if you would like that address please message me and I will give it to you.

This is a life changing time for David and I, but the journey has been full of amazing insight and even more amazing people. I am grateful to you all and I ask that you continue to pray for David and for his upcoming surgery. Prayer has been the greatest gift of all and we are grateful for every single one.

Finally, I was asked to post our fundraiser and donation information on his blog again so here it is. There will be a Quartermania Fundraiser on April 8th from 1:30 p.m. until 4:30 p.m. at Haysville West Middle School, 1956 W. Grande Ave, Haysville, KS. 

That same day from 5 p.m. to 7 p.m. there will be a bierock casserole dinner at Lauries Kitchen, 113 W. Main, Mulvane, KS. You can also pre-order the casserole by the 1/2 pan or pan and pickup on the day of the event.

And finally there will be a 20% fundraiser at Hurricane Sports Grill at 8641 W. 13th St. N, Suite 111, Wichita, KS on April 13th from 11 a.m. to 11 p.m. Twenty percent of all your food purchases will go to Save David's Home when you bring in a flyer or show a picture of the flyer on your phone.

Donations can be made through the YouCaring fund or you can donate through Carson Bank, P.O. Box 158, Mulvane, KS 67110. 

So there you have it. As I said, I will be posting daily updates on David's surgery and recovery and for those interested....his surgery will be April 10th. Please keep those prayers coming. 

Wednesday, February 28, 2018

Dear Debra

Well, it is February 28th and today David had his surgical consult with his ortho surgeon. Once again they took x-rays that made me cringe...seeing the extreme curving of his lower spine. It makes me want to cry just thinking of the pain he must chronically be in. The surgery date is not set as yet because the pediatric ortho surgeon and the spine surgeon have to coordinate schedules as they will both be doing the surgery. They said I should hear from them on a date in the next few days but that it will likely be the third or fourth week of March.

As if delving deeper into David's upcoming surgery weren't stress enough, I was met with a very interesting woman this morning. I run a couple of facebook pages in my hometown. One is more of a nostalgia page and the other is a city issues page where people can speak about their concerns and issues with the community. With both I try very  hard to keep positive and kind and it is my small way of giving back to our community....a community I love and yes....a community I have had to rely on from time to time.

This morning I was met with texts and messages saying that a woman was being very hateful on our city issue page about my families current situation and my asking for help and getting fundraisers in place to help save David's home. When I went to the page there was nothing there except a new post where she was commenting that her post had been removed. I just assumed she herself had removed it. 

Her complaint in a nutshell was that she felt I was sitting back, living off the system, doing nothing and asking for handouts. Her reasoning on this though was interesting. She feels this way because she too is a special needs mom with a grown son whom she has "worked her butt off" to take care of all these years. I assume, but never asked....that she is also a single mom. She feels that I have taken my life and thrown it out there and I guess....trying to get sympathy and get help instead of getting up and doing something about my situation.

Now I am a grown woman who has dealt with a lot of crap in my life and I am in no way thin skinned. I can pretty much take what anyone throws at me, but currently....things are a little rough and I really have had to process this whole thing. I will admit that I was a little shocked by it all, especially since 1)I don't know the woman at all and 2)the fact that she is a fellow special needs mom.

What many don't know is that this is not the first time she has let me know her opinion of me. About a week or so ago, she messaged me about midnight and told me pretty much the same thing. Again, I was pretty shocked. I was very nice to her and told her that I wasn't sure where all of this was coming from and I explained a little of my situation to her. The next morning she kindly apologized to me and I told her not to think anything of it. Life went on, or so I thought.

This woman seems to be very angry at me and I am not really sure why, although I can guess. She feels that she has worked all of her life for her son and that in her opinion I am doing nothing except asking for handouts. It is of course, not a fair assessment of my situation but, from the outside looking in, I am sure that in her mind it is accurate. This though, seems to have become very personal to her and I think she is trying hard to embarrass me (too late, I was embarrassed over this long before she chimed in) and I think she wants the entire world to see me as she does....fair or not.

I've known a lot of mothers with special needs kids and never have I run into one like her. Most of us never would think to judge one another because we all know that all our journeys to this place are very different along with our circumstances. Mostly though, we all know that being a mom of a disabled child is tough. There are no rule books and each child is different. How each family or parent handles this gift is different and to assume that "your way" is the only way is both arrogant and incorrect. So after taking in the events of this morning, I thought I would simply write a letter in a blog and clear the air.

Dear Debra,

First of all, let me say that I have nothing but respect for you. To be the mother of a disabled son who is in his 30's and for supporting him and caring for him all of these years, you are amazing in my book. I will say here though that I have no idea if your son lives with you or in assisted living. I also have no idea whether you are married, divorced, single or what. Truthfully it doesn't matter. All that does matter is that you took the gift God gave you all those years ago and you have done your best all of these years regardless of how tough it got (and you and I both know that it did from time to time) and you have taken care of him. Again, I have no idea what his disabilities are or how severe they are, but again....it doesn't matter. All that matters is that you have been the best mom you could be for this child and that deserves the up most respect from anyone you meet.

As for my situation......You seem to think you know my whole story. You do not. And that is okay, you don't have to. All you need to know is that I too am a special needs mom. I have worked and fought since the moment my son was born to make sure that his life was as good and positive as possible and that he was as well taken care of as possible. That in and of itself should be enough to garner the respect of others, especially those that know how difficult raising a disabled child can be. It apparently is not, so please, let me elaborate.

There have been times in my life as a mother, that I have worked 2-3 jobs that had me working from 5 a.m. until 1 a.m., sleeping only four hours per night. I am certainly not afraid of hard work and I have certainly done a great deal of it in my life. Since David's birth though, that has not always been possible. David has had many fragile years that have kept me home and close to him. There was simply no other way.

Then there were the times that I did work. I worked very hard and I loved every minute of it, but my employers always knew that David was my priority and when he was sick, in the hospital or having issues with seizures then I was by his side. That is how I view my role as his mother...to put him first at all times. And I can't just leave David with just anyone. David is non-verbal. He is a target for someone with less than compassionate care giving skills and yes, we have been down that road. David has been in the care of people who have verbally abused him, dropped him and neglected him. Once that happens, you trust very few people. Still and all, I have done my darndest to get respite care for him and I have been turned down every time because in order to get quality care, I would have to pay more than I would make at a job. So my not having an out of the home job is not laziness or lack of ambition.

You mentioned that I could be working while David was at school. True except for the fact that David has been out of school more days than he has been in school because of his health. He catches every bug that comes along because of his immune system. These usually cause fevers which spark his seizures. He also has really bad days with his muscles that make it almost impossible for him to get around. And then there are the nights where he doesn't sleep. This then means he can't function at school. Oh and the shunt malfunctions which happen out of nowhere. We had some real fun with that in January, with three shunt surgeries in 3 days. Now we have a spine surgery coming up which is going to take months to recuperate from. Add in to this all of his therapy appointments, specialist appointments and the intermittent doctor appointments and ER/hospital visits and you tell me how hirable I am.

What you probably don't know, is that when I am not taking care of David, I take care of another special needs lady daily. I take in laundry and ironing and yes I have been known to make the occasional cheesecake. I also clean, cook, do my own laundry, take care of my grand kids and help anyone who asks for my help and believe me, that happens more than you would think.

One of your greatest complaints seems to be that I have a large presence on facebook. Really, it is no more than anyone elses until recently. I run several facebook pages and it is all to give back to my community. I also spend a great deal of time trying to give back in other ways and encourage others to give back too. I spend a lot of time trying to hook people up who have needs with others who might help them. So yeah, I owe my community a lot and I try daily to show my appreciation.

Yes, I asked for help over this house situation. It was a situation that was both embarrassing and humbling and as someone pointed out, it was not the first time I had to ask. It was always for David though. Never for me. You also made a comment about me living off the system. That was especially offensive to me. I live off of social security death benefits. They are benefits that my late husband worked hard for so that he could take care of his family and because of this, he has been able to help continue to take care of us even since he's been gone. I have never used food stamps or taken welfare of any kind. That to me is for people that truly need that help and I would never take from people in need. So no, I don't live off the government or the system. I live off the money that my husband made while he was alive. There is absolutely no shame in that. And truth be known, even if I had been working a 40 hour a week job, if this had happened, I am sure I would still have needed help.

So Debra, I am still not sure why you find my situation so distasteful. It feels rather personal, but then again, it couldn't be.... because you don't know me. What I do know though is, we both have tough roads in this life and we are both doing our best to give our sons the best that we can, regardless of how that might look to the rest of the world. I also know that I admire your strength. It takes great strength to do what we do. And finally....I also know that if the time ever comes that you need help, there will be no question, no judgement and no memory of this current situation. All there will be is kindness, compassion and as much help as I can give you. After all, that is what it means to be a special needs mom.

Sincerely,

David's Mom

Tuesday, February 13, 2018

Spinal Surgery and Stuff


It is so strange to see my sons face on a t-shirt design. It is absolutely surreal to be dealing with the "why" it is there.

We are knee deep in fundraiser plans and the bad thing about all of this is, life doesn't stop just because your life is in crisis. There is much to do to plan this fundraiser and I spent the better part of this day going to appointments and doing things for David that simply go along with the life of a special needs child. Today he had his pre-surgery physical therapy appointment. I went in there with plans that we would likely get him fitted for new orthotics (leg braces) but instead she just made sure that his current orthotics will keep him going until surgery. Why? Because after surgery, everything from his orthotics to his wheelchair to the kind of walker he uses will have to be changed. I had no idea.

In March, David will be having spine surgery to correct the curving of his spine which is common in kids with cerebral palsy. The curvature can happen in the upper spine, lower spine or mid spine. If uncorrected, as they enter adulthood, the curving can cause a moving and even crushing of organs like the heart and lungs.

In some kids and especially nonCP kids, the curvature can be fixed non-surgically with a back brace. David's CP however, made that impossible although we did try. So now we do surgery. David's curvature is in his lower spine and the surgery will either be a fusing of the vertebrae, a metal rod placement or both. The procedure will likely be extended a few inches above the curving area to get the best outcome.

You know when you have a chronically ill child with things such as cerebral palsy, seizure disorders, etc, there are three kinds of moms. You have the kind of mom who literally spends every waking hour on WebMD and chronic illness sites trying to soak up every ounce of knowledge and information she can on her child's illness/disease. These parents live, breathe and sleep their child's condition, constantly on the look out for the worst case scenario or at the very least, very sure that if something becomes an issue, they will catch it early.

Then you have the moms who just completely go with the flow and never even ask a question, check out a web page or check out anything in reference to their child's illness. They simply can't handle the what ifs, so it is just easier not to worry until they have a reason. This is kind of an ostrich with his head in the sand scenario and this becomes a huge issue when something does happen and the family is not prepared for that particular outcome. Ignorance is a poor excuse when you have a sick child.

Finally, you have moms like me. I am a cross between researcher mom and head in the sand mom. I ask a lot of questions of the physicians and medical professionals in Davids life, but I seldom research his illnesses simply because it would literally make me paranoid and insanely crazy. I know myself too way too well to put any of us through that. Besides, most of the information out there is so generalized  and if I am going to get information, I want it to be from professionals who know my son, have worked with my son and who can give me information pertaining to my son, not a generalization of the CP population. If I need the blanks filled in, then on rare occasions I will do the minutest of research but only on VERY rare occasions.

So today, I decided to get some info on his surgery from his physical therapist. My reasoning here is that she gets the kids in the aftermath of the surgery. She has a baseline idea of recovery time and what is entailed in the recovery. After talking with her, with all that is currently going on in our lives, I almost wished I hadn't. But....when talking to the right people....knowledge is power.

David previously has had two hip surgeries, which have put his hips back in their sockets and helped to reduce some of the tightness that CP kids often get in their muscles. These surgeries have been instrumental in helping him to get to the point in his life where he can get around pretty well on his walker. He still has to go long distances with his wheelchair, but he can make 1,000 or more steps per day. He also has Botox injections every 4 months to help the tightness in his hamstrings and help him to build muscle where there was originally nothing. He has fought through two really tough hip surgeries to get to this point. With one of those surgeries he almost died within hours of having the surgery. The recoveries have been long and difficult but each time his quality of life has improved and throughout both surgeries and recoveries he has maintained his smile and his joy for life.

Now this surgery. In the last few months I have noticed that David's right hip seems to be having trouble when he walks with his walker. This is due to his spine alignment. It throws his hip out badly and from what I understand, this causes a lot of pain. You would never know he is in pain as he walks as quickly as he can excitedly greeting anyone in his path, but there is no way (according to the doctor) that he is not in pain. It breaks my heart to think with all he has endured in his short 17 years that he might be in constant pain. This spine surgery should help his hip and the pain. Post surgery, his spine will be straight as a string and it will allow him no rotation in the upper body. This new straightness will help pull his hip in and when he walks, his body will be more in alignment. It will also affect his feet, knees and lower legs.

The surgery itself, depending on whether they do fusion, rod or both can last from 4-8 hours. This terrifies me because David and anesthesia don't get along well. It does awful things to his body when he is under for more than an hour or so. So, that in and of itself makes me cringe right down to my toes. Then following surgery and post op, he will likely be in PICU (pediatric intensive care) for 3-5 days. He will then be moved to the general pediatric floor where he can stay anywhere from 5-7 days. It wasn't until today that I fully realized that I could be moved into Davids hospital room for almost two weeks...and NO....I won't be leaving his side. 

Then comes the fun part where we have to figure out how to get him and his fragile healing spine home. It terrifies me to think of having to get him in my (non handicap accessible) van, getting him home and then getting him out again.

Once home David will have another 6-8 weeks of recovery. Slowly he will be given the okay to first sit up, then sit in a chair and then move to his stander where we will have to stretch everything from his shoulders to his feet. Once we are there, then he will start water physical therapy. Water therapy is amazing stuff and he will have a PT in the water helping to strengthen him and getting him back to normal. From there he will go back to regular PT where he will work out on the Total Gym, ride his bike and get back into walking with his walker again. It is a long process which will entail a lot of pain, effort and fortitude and it is definitely not for the weak of spirit. Did I mention this all makes me cringe? 

March 1st, is the day we see David's orthopedic surgeon and get the plans underway for this surgery. Within a couple of days of the appointment, if not the day of, we should have a date set for the surgery and my brain will be mush until he is completely recovered.

Perhaps this whole house thing has been a blessing in the fact that it has gone a long way in keeping me focused on things other than David's surgery, although today, the surgery issue came back and hit me full force. It is scary and I wish that it was the only thing in my world currently that I had to worry about. Unfortunately, it is not and I can't help but be just a little angry thinking that I hope those who put us in this situation never have to go through what they are putting us through right now.

In the midst of all of this upcoming surgery, the Save David's Home effort remains in affect. Plans for a fundraiser on March 10th are well underway. We are still selling two designs of t-shirts. One design is on the top of this page and we still have our YouCaring, Carson Bank Donation account and our Paypal account working to get enough money to save David's Home.

The greatest miracle for me would be if David's home was safe and sound and worry free before this surgery so that nothing would distract from his surgery and recovery. It is my greatest prayer and again today, I ask you all to pray like crazy, to share my blogs, the Save David's Home facebook page, t-shirt page and donation pages. I know I'm asking a lot, but trust me, I will pay it forward for the rest of my life.

So until tomorrow....happy Tuesday!

#savedavidshome
#fightfordavid