16 & 17 April, Topsy-Turvy Tidbits

12:13am.. I did not blog our day Sunday because it was horrid, Donavan could not hold down any food..stayed so sick to his stomach because he always suffers this horrendous post anesthesia constipation..yep, I said it. I thought maybe just maybe this time around we would get away with it but no deal. Almost 2 weeks without a bm and anyone would certainly be miserable. I had great difficulty finding support from on call staff at the hospital as I tried remedy after remedy, praying it would not lead to surgery for impaction! To sum it up, thankfully after a quick trip to the ER, then 2 trips to a local Walgreens, about 5:30pm Donavan collapsed into a well deserved nap that he used to directly transition into bedtime early that night... On top of everything else that's going on, that was just too much. So very glad its over.

     Currently I am up way too late due to my own stubbornness because I have a video (no not the one up top) of Donavan's very first walking trip(with his walker) at physical therapy from Friday and cannot seem to be able to get it successfully uploaded for the very life of me! Its driving me mad. I want so badly for it to be seen because although he struggles so hard, it is a fabulous comparison to the new video we took today (above). I will figure it out..and even if you are as delighted with the video above as we are, please I ask you to see the other just as soon as I get it up. It will amaze you. Donavan worked with "Moshe" the physical therapist that's done just wonders for my son here at the hospital. Donavan has developed such a wonderful re pore with him and its such a shame we can't take him back to South Carolina with us. Moshe developed a wonder and exact physical therapy program for Donavan that he typed up and made sure it was  super clear for us to take with back home. It is only the first in a 4 phase plan for him to complete all he must to be back on his feet, full speed ahead hopefully 9 to 12 months from now. Mild stretching exercises and TENNS unit twice a day now for 6 weeks, then Hydrotherapy for 6 weeks (to strengthen and begin to tone, he actually should be swimming as much as I can possibly get him into the pool at the YMCA) then Donavan should reach partial weight bearing and can begin a light strengthening routine for another 2 months to enable him to go full weight bearing by 6 months..then the real work begins! From that moment on its going to be rigorous work to get his left hip, pelvic and quad muscles up to par...High school will start for him before this is achieved. We pray it won't become too big an issue. About the last 6 years of Donavans school life has been interrupted by physical therapy to help him stay afloat physically. High schools going to be hard enough, let alone having to be absent for pt, hope we can do it. Donavan will be in ROTC, for both semesters and I know he will be hard on himself to do very well.

     Today has been so satisfying, I think I speak for both of us when I say that today has been as fulfilling as it could be.Had an awesome day visiting with all the other mothers here at HP, I think we just automatically become so close, due to our circumstances. I thank God for the companionship and support because there is nothing like it! We started well rested, Donavan had his first shower in 2 weeks ( YaY) he handled it so well, was not dizzy at all thank goodness. Went straight onto stretching and TENN'S exercises and then as you have seen above, a mozy down to the HP kitchen and back with all smiles and dazzling pride. I do not think that I could be more proud than I was today. Donavan's wheelchair should be here on Wednesday (we are using a loaner) and we have 3 more physical therapy sessions before leaving Baltimore..Tuesday, Wednesday and Friday ! Then hopefully the weekend I can convince Donavan to go and see a very dear friend of mine here, Barb Fuller. She is not well right now but I know she will be better soon!

     Mom, John and Lilah had a lazy Sunday of homework, chores and worship..I miss them so incredibly MUCH! 7 more days and a wake up until Donavan and I are tootling down 95 S on our way back home ! See you all tomorrow, Goodnight C:

14 & 15 April 2011, from dark to light

12:25am/ My last two days have been spent helping Donavan transition between need all to only needing some. When I say all, I mean all his meds, all the doctors, all the therapists, all the attention, all the room, all the prayers, all the listeners, all the space, all the kindness, all the equipment, all the consoling, all the patience, all the slack, all the hugs, all the help, all the world has had to help him coast, ever so slightly from the drastic he has been to now a slightly ore mild presence. Its been so UP and then DOWN. Bless him, no one can tell me "boys aren't as emotional as girls" ever again. They can be too! Donavan had a melt down last night that I will not soon forget because it broke my heart... He sobbed and sobbed and sobbed about so many different things that I could not keep up! I was frantic, because it was midnight and he was so loud. We are in the HP house yes, but it is still a hotel and we have families to the left and right of us.He was yelling and then crying and both together he vented what seemed like a lifetime of frustrations.... Then it was over and he slept a sleep of heavy peaceful dreams. I was still frantic replaying every single thing he said over and over again in my head analyzing like a mother does. I don't know when I got to sleep.

     Yesterday was Donavans first real day of work at physical therapy and it rocked him good. They issued us a TENNS unit to help Donavan to retrain the muscles in his left leg. So much was cut in the surgery that its going to take a ton of work from here on out. He understands this, but I believe he in a way wished it would just disappear and allow him to play it off, as he did when he was younger and a therapist would issue him exercises. Donavans been in physical therapy for years due to Perthes. When he was young, it was fun and avoidable because he had NO idea what was at stake. Not anymore. Here at Sinai they see so many children with as serious conditions as Donavans, and much more serious. I trust them with my son and we cling to these 6 therapy sessions we have been afforded before we will leave Baltimore to go home. They hopefully will enable me to get Donavan off to a solid start and arm him with the initial confidence he must have to see a light at the end of the tunnel. Yesterday he cussed and swore it was too painful and that nothing felt right and that he felt his hip sliding and burning... Today "Moshe" a very well loved and admired therapist here at Paley Institute of Advanced Orthopedics had my son up out of his wheelchair, walking with his walker, shifting his weight and making his way across a small bit of the floor! ! ! I couldn't believe my eyes. And the tears came big! I videoed it, but its 3 minutes long and I cannot seam to get it from my phone to here on my blog yet, but I will! I was amazed and so incredibly thankful...From what seemed the lowest possible, not holding down food and passing out, to walking with his walker! Praise be to God. I am feeling lighter as I write this. I am so proud to share this news and I have a more stable feeling in my heart about the progress Donavan is now making. I honestly felt that his left side had just been so surgically dissected that he'd never come back. I will be adding many more photos so you can see my boys pride and extremely hard and difficult work. I pray its only the very beginning and that the we are able to use the next 3 sessions left before we leave to help Donavan feel realistic hope. Nine days left in Baltimore, three more pt sessions until we get back to S.C. and Donavan can begin his very long way back to eventually walking on his own without the aid of wheelchairs, walkers, or crutches.Stretching PT for 4 weeks then Hydrotherapy for 4 weeks to coddle the muscles and increase flexibility with weightless resistance training and then the real therapy begins at 12 weeks ... Will take a minimum of 6 to 8 months and then another three to put the final touches in so that he has a regular routine to fall back on, if his limp gangs up on him again. Then next summer, limb lengthening of his left leg to even him out and leave behind him any scoliosis or further threats to his knees and spine. I am ready for this for my son, he deserves it. I pray he will fight for it -! I will hopefully be able to add the video tomorrow, its so heartwarming you will feel it too!  Goodnight C:

14 April 2011, One week anniversary!

     12:07/
     Today at 8:40pm was Donavan's  one week anniversary, of the marriage between him and his newly established blood supply in his left hip. I know he does not realize its actually been an entire week gone by. All his meds and pain anxiety, it just sops your brain.. I told him tonight before he fell asleep ( 15 minutes ago) to just try and think back to immediately after surgery last Wednesday.. He said "I don't want to ever think about that again". I then replied " See, you have come so far since then!" ....
    
     I could blog all day long, if I had a clone to cover my son :D  I have so many things I wish to share, vent and cover. Today was not taxing and I feel wildly tired for no reason. Maybe catching up still, from all the past days & nights spent wide awake with Donavan. All so very worth it to me. Every last nasty and dreadful detail to them. Even the crazy happenings, and believe me there have been some! They will all be in our book eventually. I have learned so much every surgery my son has. I learn more about the nature of pain and the affects it has on a persons entire being .. the tole it takes on innocence and the threat of it lingering overhead almost continuously, it can suffocate you and just as easy suffocate those around you. Always demanding control. I made a conscientious decision to cut every single bit of negativity out of my life and its surroundings today. Feels fantastic and I do believe I am wearing it quite well. Even Donavan noticed. Our children are so sensitive to us, I will never let another negative anything disrupt our stride. This new blood supply will be nurtured by God, Mommy and all of this worlds beauty and grace from here on out. Amen.

     Finally we will have a wheelchair ramp built next week, at home in S.C. ! Our very own church is handling it, Thank you Saint Helena's Episcopal... thank you so much. Last one John built on such short notice and with all half rotten wood scraps. We are so thankful for this one. It will be good and sturdy and will last the entire year I am sure.This was a major immediate need on our wish list!

     Tomorrow Donavan has physical therapy and I can hardly wait. I dread his anxiousness and pain but I revel in the work he has to accomplish because as one therapist says its "molding" his new hip! I have a new tatic to try tomorrow and it involves not just prayer, but some motivation Rocky Balboa would be proud of... Donavan talks constantly of how fit he longs to be. Not just to be able to run and jump carefree, but to be lean, cut and rock solid! I have been looking on craigslist all day and have found 3 or 4 possible gym sets he would adore. If I can put them within his grasp when we get home, in his room he will have a fitness sanctuary. At 14 most teenage boys are not consumed with being physically fit. You get that way when you have been almost solely confined to no running or playing for years on end..Donavan has a great fear of being chained to inactivity the rest of his life. I won't let that happen.

     Tomorrow night is the monthly online Perthes chat with Doc Standard. It begins at 8pm and everyone who is seeking for their children to see doc S, and who is currently under his care, participate in these chats. You sign on with your questions ready to go for when your turn comes and the doctor answers each of your inquiries fully. He does it from his home, with his family around him and after working all day with us.. still he gives. God bless Shawn Standard, his children and the saint he must be married to...I can't wait to meet her and thank her for sharing so much of her husband with my family. I have a few questions I need to ask. As it is now, I am unsure if we will actually be going home at the end of the month or not. Donavan may require some super reinforcement and another few weeks, in which case we will work it out.

     I have so many dear and amazing people in our lives that if I could just write a paragraph about each one it would not be enough.. Tomorrow when the reporter arrives for our interview I am going to only agree to chat if I can first make mention of some of these very awesome people who have shown a ton of special love to my poor kid. They deserve it and Donavan wants to be able to "repay" them, he calls it. I have about 50 thank you notes I brought with us on our trip to Baltimore and every time I get them out along with addresses, for Donavan to write them himself..the boys passes out asleep. Bless him, I am going to help. I ask your prayer for PROTECTION of Donavans new blood supply in his hip, and COURAGE for him to give it his all in PT tomorrow and every PT day after. The smile in this photo, albeit disguised in toothpaste... is GENUINE... and the first like it that I have seen in many days and I am so way happy to see it! His inner strength is being reborn and God has him on deck to bat ! Goodnight C:
12:52am

12 April 2011, Esprit de PT

I thought I would add this photo of the smiley face on Donavan's left knee before it disappears.. Its the smiley doctor Standard drew on him right before surgery in the OR waiting exam room. All surgeons do this, they or their OR staff mark the ankle, leg or whichever thing they will be operating on... Doctor Standard is just a happy and creative mind so he draws a happy face. I wanted to capture it while its still smiling up at me as I am desperately trying to brace it and move it and manipulate it in and out of the bed,from walker to wheelchair and around everywhere..Tomorrow at 9:30 pm it will be one weeks time since Donavans surgery already. Its almost impossible for myself to believe that we were just released yesterday! We have gone through so much already.

     The second photo is of the current equipment we are working with... the CPM (continuous passive motion machine) is the contraption that you lay on the bed and Donavan must have his L leg up into every other 4 hours of the day. It gets strapped in and then lifts up and then extends out very slowly. When he is not in it, he is braced. The long blue dog collar looking thing is a leg lifter. I only have me to help him now and that's about a person short to do actually what I must safely and effectively, so they gave us the "lifter", it scares Donavan horribly because he feels like his leg is going to fall when he is lifting his foot with it. He lifts and I try to pry the CPM (which weighs about 12-15 lbs) underneath his L leg. Walker to use to go from bed to wheelchair, wheelchair to get anywhere:) Today first thing in the morning Donavan was brighter and trying so hard to psych himself up for the physical therapy eval..he said "Mum you don't have to tell them to back off, I am going to do whatever they need". He meant it with all his heart, before we got there:( It was gutting to see him whimper and not really be able to say much at all because he was there for a reason. They needed to measure every aspect of his ROM (range of motion). This gives us a starting point to be able to map his progress at a later date when we return to S.C. to continue PT. Also his range of motion can tell us if the new blood supply that was created in his hip is thriving or not... Donavan sat in his chair while the girl introduced herself and proceeded to tell him he would need to be up upon the large exam table in front of us. He said " Are you serious!" We were there an hour and 10 mins and in that time I wanted to cry myself, for him over and over.. When finished he said to me, "Just take me back to the HP and put me to sleep mum, please." :( We are past the point of him being almost incapacitated with all the pain meds 24/7..not its actual scheduled pain management and that's very very difficult. Especially when your striving for improvement and strengthening. The anxiety med I am finding is really making a difference in his angst.. Donavan is so young to feel so helpless and powerless and hopeless! I have included this photo of him after PT was finished today. It says it all. I love this manchild more than life and will push him only for his own good! But it kills me over and over. Goodnight C:

11 April 2011, a glimpse

10:36 pm and I Just wished to say that I will be returning to begin again tomorrow night....so much has gone on but things that I just can't bare right now to blog about still. First physical therapy session in the morning at 10am... must keep Donavan moving !!****** Praying with my everything, that it's Gods will the newly created blood supply in Donavans left hip remain VITAL !!!!  Goodnight C:

7 April 2011, until further notice

I am discontinuing my blog at this time. I am in way over my head and although my son is not a life or death situation, he is suffering massively and its way more than I can handle reliving it every night to blog about. I hope to see my way past this! Goodnight C:



6 April 2011, "head splitting" "dislocated" Osteotomy. You don't want one! :(

Donavan went into surgery at 4:08pm... at 9pm he was back in ICU and that's where we will remain until further notice. Instead of an epidural, Donavan has a power packed 24 hr dose of morphine and Valium for spasming...it is now  12:15 and he has only really been calm for 30 minutes (which I am ever thankful for !) He has a very large triangle shaped foam wedge between his legs with a hemovac drain resting on top of it. Both his legs are strapped to the wedge and a few moments ago when he woke with pain, he gave the drain line a good tug and scared me. Thank goodness he is further sedated because I thought all 150lb's of him were going to come off his bed.He has kept telling the nurses, you don't understand my left leg hurts really really bad, you are not listening to me!  He woke from anesthesia differently then a year ago, in great pain but instead of screaming he moaned so long and so loud it was like a train. I wanted to beg the nurse to make him stop but Donavans moaning got to her I think too. He is older and his voice has changed so much even in a half morphine induced sleep. Doctor Standard met with me before I saw Donavan and explained that he was able to reattach the blood supply in Donavans femoral head after the reshaping work and that now the next 6-12 weeks are absolutely crucial.. That with some xrays it should tell him if its viable or if we have to xfix him and hit his with some hyperbolic oxygen and other methods to keep from his hip dying all over again. The lump in my throat as he said this grew thorny and I felt sick. But I felt more hopeful than sick! He said the condition of Donavans hip was a little better than we had thought and it gave him a tiny bit more to work with and with the 3 screws and plate,hip braced and pcm machine, we have hope that this head splitting osteotomy will render Donavan a fresh new blood supply that enables a healthier hip with almost full range of motion and pain free mobility. The next few days I expect to be super intense... I want my son to feel my enthusiasm and I know we have to get past this shock of ramped pain first. I can't take my eyes off him and praying. God please may we have your best for Donavan this time? Thank you in advance! I will try to keep everyone up to speed the best I am able and hope to start seeing a huge light at the end of the tunnel soon! Goodnight C: