What the???

Okay… Here's an update on everyone…

Sophie
Ladies First, so we'll talk about Sophie first. Sophie is doing really well, a happy fourth grader. I am hopeful that she won't have any symptoms having to do with her Histiocytosis EVER, and the doctor has cleared her to wait 'til November to see him at the Cancer Center, which is a HUGE BLESSING! Because of the delay in needing scans, we went ahead and travelled over to the Merle Norman store and got her ears pierced! She's a big girl now and I think this was a real coming of age moment for her. She's not a "little girl" anymore, even though she will always be my precious little girl. I am so excited for the girl she is and the woman she is becoming. Amazing to watch!

Aiden
Aiden is having more struggles than normal lately, however. It's upsetting to me to talk about, because he's been through so much. He's such a remarkable survivor. I never thought I'd be sitting her writing about Aiden. After all, I didn't expect him to make it out of the NICU after 32 days being born at 30.5 weeks with too many apneas and bradycardias to count as well as a level III IVH... much less, make it to two years, four months old!  But... back to my point, he is currently having struggles with seizures and his Cerebral Palsy. He appears to have a greater degree of weakness in his lower extremities than we had originally suspected and is continuing to sit in a "W" posture, like a baby in lieu of "criss cross" like most kids are able to do at his age. He is also having no right or left handedness and is struggling with gross and fine motor skills especially on his right side. Thankfully, the ECI people are getting involved again and have recommended him for physical and occupational therapy. This is a great intervention and helped him immensely when he was enrolled when he was 6 months old.

And, last night he had a seizure again. It's so hard to deal with, especially right now considering I can't lift him because I am only three weeks out from having the back surgery. It was about 10:45 when I was getting ready for bed and I heard this rustling and whimpering coming from his room. He then started SCREAMING bloody murder from his crib. I walked in to find him on his back (he's a tummy sleeper) and he was all spread eagle which is the position is is usually in after a seizure. He always has this kind of powerful reaction after a seizure. Sophie even woke up, jumped out of bed, and helped me by carrying her screaming little brother into my room. I got him a warm wash cloth and laid down next to him and attempted to wipe his face and head and calm him. But, at that point, he was still screaming for Nanny. I called her and let her know she needed to come because I thought more seizures were eminent. For a few moments before she arrived, Aiden calmed down a little bit because we were able to FaceTime with Adam (aka. The Amazing Mr. P). Once mom arrived, he was really foggy looking, just staring off into space once he calmed down, for what seemed like forever. He just laid there with his eyes open in a daze. Eventually, he fell asleep, but I think the whole thing just freaked him out. He's getting to the point where he is able to formulate more thoughts and put together sentences so I can only imagine he was thinking, "what the HECK just happened to me?". Obviously he doesn't remember what happened before... Babies just don't remember that far back.

Once Aiden was back in his bed, I went in to check on Sophie who had, understandably, migrated back to her room. She was still awake (barely) and I told her how amazing she was and how I hated that she had to help, but was so thankful that she had been there to lift Aiden last night. Again this morning, I praised her efforts and quick thinking because she knew what had happened. She heard and seen the whole thing. I just hate that she had to be so close to this, it scared her to death, but some instinct kicked in and she just did what she needed to do to help him. It was an incredible sight to see.

It's days like this, tired, and hurting when I am so thankful for my fiance. He was so soothing to Aiden last night. He said one word and Aiden looked at the screen and instantly just calmed down. I really don't think Adam knows just how much this meant to me. He's such an amazing dad. I cried like a baby when it was all over. I just curled up and laid in my bed, powerless to hold or console Aiden, and I just felt completely incompetent. I went into the living room about an hour or so after my mom took Aiden, and saw them cuddled up on the couch. Yet, Aiden still laid there with eyes like saucers. I then suggested that mom lay Aiden back down.in his crib so maybe he would calm down the rest of the way and sleep.

Me

As far as I am concerned, other than having a few new gray hairs because I have had to rest so much and can't tend to my kids like I would like, I do get stronger each day. I am working full days now, but have to lay down after each work day and I also have to walk quite a bit during the day so I don't get too stiff. I am really ready to go home and lay down at the end of the day, but I am enormously thankful to be back at work. The routine and the challenges of the work day really help.

 

We are contemplating looking into a service animal for Aiden. I want to collect information and see if this would be a good idea to help recognize when Aiden is about to have a seizure.

 

After what happened, I realize several things about my life. I am happy in spite of having some rough days mixed in sometimes. Everyone has those. My kids are phenomenal little miracles and I am so blessed to have the family that surrounds me and the love that is around to support us and keep us sane. I am most thankful also, for the love of Christ, without whom I don't know sometimes how I'd get through this. Just remember, when you give your life over to Him, He doesn't guarantee that things won't be awful sometimes, He just guarantees you won't ever be alone.

 

I don't want to slam anyone over the head with the God thing, but it's so true and it's truly changed EVERYTHING. I have a comfort and strength about me that I haven't ever had before. That's all because of God. I just know that even if he doesn't deliver us from our struggles and we have to endure CP, Epilepsy and Histiocytosis for the rest of our lives, at least we will be surrounded by the love of Christ. And, at least I have two beautiful children to share these moments with. I am blessed to have one more day to tend to a seizure, to wipe away someone's tears or be by their bedside if they need chemo one day. I am thankful, humbled and thankful.

 

Have a great day friends,

J

 

THANKS Y'ALL!

Well I can tell you one thing, it's a LOONG road to normal from this back surgery. I'm relieved to feel better after all the pain I had suffered with for so long, but it's just hard to readjust as well as deal with not being able to pick up my son or travel anywhere for six weeks!
 I had back surgery on 08/08/2011. It was a lumbar laminectomy microsurgery aka. microdiscectomy (see earlier post). I am slowly but surely getting back to normal, but am not on nearly so much medication and the pain is very real, though it does get better with each day. I have read all of the latest fashion magazines, am up to speed on the bridal trends of this year and I know all about a family I never wanted to know named Kardashian. I never thought I'd be so entrenched in pop culture at my age, but that's what happens when you can't do anything. On the bright side of things, I am gradually getting back to normal.

I just wanted to let y'all know we're hanging in there. And, it's not like we haven't had anything newsworthy to talk about, but I am physically challenged when it comes to sitting upright. I will update you more as time goes by and I continue to heal.

Tonight, I just wanted to stop by to say THANK YOU for your prayers and support during the surgery. The flowers and gifts were GORGEOUS! Additionally, I am humbled by the generosity of those of you who brought meals by for us. I am extremely grateful to have such wonderful family and friends right now. Thank you SO SO SO SO much!

Big hugs going out your way tonight friends,
J

Surgery for Mommy, Medical Message and Prayer

Well I kissed and hugged sweet Sophie good-bye when my mom and dad arrived that morning at 6:30am. Mom was waiting in the car for me so we could make our way to Methodist for the surgery. One that had been on the back burner for way too long because of Sophie and Aiden's health issues. But, now that my GI Doctor had cut me off of all Anti-Inflammatory drugs because my stomach has been torn to shreds, it was time to make a decision. It's not like I can be on pain medicine for the rest of my life, and I have been on it for way too long... It was sad to say good-bye to Sophie knowing that the last time she had heard the term "surgery" it was she who was going under the knife. Petrified, my little one was up at 5:45am to be sure she could see Mommy before I left. I assured her that the kind of surgery I was having wasn't to "find out what it is", but rather we already know what it is because of the fancy pictures I had shown her on the MRI, and that my surgery was so I could walk better and have less pain. She acted like she was all right with that, so with a tight squeeze, I was out the door.

The ride to the hospital was by far one of the longest I had EVER had. The preop instructions forbade me from taking my pain meds or eating or drinking anything past midnight. After review of the preop instructions, I also noticed something VERY disturbing. There seemed to be some debate on whether they were operating on my right or left side of the L5-S1 disc. I definitely wanted to get that cleared up ASAP!!! I thought I distinctly remembered them saying LEFT, and since that's where the majority of my pain has been, I had to make certain to clear that up. During the painful drive there (NPO after midnight, remember) I felt every bump, every jerk of the wheel, every stop light... Excruciating! The good news is that my sainted mother drove me to the hospital and stayed there for what was probably a gut wrenching day for her, and the pain I was in also quite literally drove home the need for the surgery. When we got to the check in desk, we were pointed to the preop room where I was told by the nurse there that I could have had the pain med after all! WHAT??? Ugh! I asked if I could have one to take the edge off while we waited. I was the second surgery of the day. She said yes, and that she was so sorry that the pre-op group hadn't explained this. I downed the medicine with a tiny wallow of water and started to feel a little better and had a short siesta.

Just then there was a knock on the door. It was anesthesia. A nice young woman walked in to get a brief history on me and before she could start her spiel, I said, "There's one big question mark here. Is it Left or Right???" She assured me with a blank stare, that I would have a chance to talk to the Neurosurgeon BEFORE I was cut on, so I listened to her. She was a bit perplexed herself and I did notice her looking through the file where she saw that the word "right" had been written repeatedly. She told me that she just did the anesthesia side, but would voice my concern. I felt a bit like a child getting a pat on the head at that point... Could someone PLEASE answer this question?? Ugh

The transport team walked in as anesthesia was wrapping up, and said, "They're ready for you!", to which I said, "nobody's cutting on me without knowing what side... MMMkay!!!???" Just about that time, the doctor rounded the corner and said, "I know you", trying to be clever. I said, "Good to see you, Doc, could you PLEASE tell me what side you're cutting on? There seems to be some confusion on the paperwork!". He then pulled out an index card that said, "Morgan, L5-S1, Left", and showed it to me. He then asked, "what side is the pain on?" and I said "BOTH". He then said, "Well if the pain is on both, doing a discectomy on the left only won't help much, will it? What did the consent say that you singed?" I replied, "I thought it said Right" but then I explained that I thought that the resident that was with him that day I came for my office visit said Left Side L5-S1! " He then directed the transport staff to wheel me back into the room to wait some more. He said that he would get to the bottom of it. He was IRRITATED at the nursing staff that hadn't properly prepared the forms. He told us he would go prepare new forms and would go look closer at the MRI. Upon his return, he said, it's definitely a LEFT L5-S1 herniation, and it's a BIG DISC," and he went further to explain that it was large enough and could very well be causing the bilateral pain I've been having. He then took hid sharpie out and marked on my skin where he would operate.

So, new consents were hastily signed and they rolled me in to get the IV installed and I was sure we were almost there. Someone asked, "is 10 ready?" and they yelled yes and pushed me down through Dunn Tower OR to room 3. I saw all the docs and nurses lining the halls and exclaimed, "Are we having fun yet?" just another day at the office for them, One of the British doctors looked down and said, "Good luck, and thanks for asking". The transport team stopped me in the hall in front of OR3. A nice young nurse came in and said, "I'm a nurse anesthetist that has a cocktail that makes you relax"... We got to talking about the anesthesia (I guess I get talky when I am on the medicine. I thought, "Relaxing Is good at this point", and I pleaded with her to put me WAY under and we both laughed. I could tell that this wasn't her first rodeo. They wheeled me into the OR, and then the anesthesiologist came in and put a mask over my nose and mouth. She said that it was just oxygen and told me to think of happy things to think about, so naturally I started thinking about Adam and our upcoming nuptials. As I looked around I noticed the neat stereo equipment and TV set up in the OR. Pandora Radio - fully wired. Adam had told me how they listened to Pandora in the OR at Scott & White, but this set-up was neat. It almost made me want to be awake so I could rock out with them. Nah, not quite....

So the next thing I remember, I am waking up in ACUTE pain in recovery. I started crying and gasping for air and was trying to say, "Help me", but no one could hear me because my voice was so hoarse. I looked around and couldn't see a nurse or anything much because my eyes felt like they were glued shut. I finally got them opened, and tears ran down my face. I finally saw a nurse, who said that everything was going to be okay as she pushed some pain meds through my IV. At that point, I got really sick and was glad she was right there at that point. Her name was Liz. She kept saying, "It's okay honey, deep breaths", and told me to think of family... friends... things I like to do for fun... I quickly came around and she gave me something for nausea. I felt so much better. My first question for the nurse, besides "Help me?" was "How long did he actually operate?" and she said an hour and a half. TWICE the time he told us that it would take in the pre-op area. I wondered what went wrong and she said that she would look into it and either she would let me know or the doctor would.

At this point, I am sure I was talking Liz's ear off. I told her about the C-section recovery nurse, Shannon that had been such a wonderful comfort during the moments after Aiden's birth at 30 weeks gestation. I expressed my gratitude for recovery room nurses and shared with her the story of the recovery room nurses that meant so much comfort to Sophie during her recovery from the curettage of her Histiocytosis tumor. The world greatly underestimates good nurses! Having had both yesterday, I was thankful for Liz. Thankful by a LOT.

At that point, I was taken by the waiting room where we picked up my mom. She was happy to see me. I can't imagine the fear she must have felt when a 45 minute surgery turned into an hour and a half. On second thought, that reminds me of exactly what happened during Sophie's surgery and I just apologized to mom that it took so long. She said that the doctor had come into the waiting room to tell her I made it through surgery when he was done. She said that he also told her that it was a BIG disc, and that it took quite a bit of dissection because it was really stuck in there. He said I should start to feel relief from pain over the next week and that I need to be careful not to over do it, but that I should really feel a lot better. About the time we made it into the recovery room, he came by, and told me much the same thing. I thanked him profusely for making sure things went well and how appreciative I was for his talent. The moral of this story is ALWAYS ask for a "time out" before you have surgery! You don't want them operating on the wrong part!

About the time he left, I dozed and the nurse came in to wake me up with Apple Juice and Cranberry Juice as well as some crackers. I told her that I got sick in the recovery room so she said, probably best to stick to water until I get my bearings. So, I went straight for the water. My throat was sore and I needed hydration. After downing the apple juice I asked for more water and the nurse got me up to walk around. I was impressed that I was able to pass the criteria to be able to go home very quickly. I rested for a bit, and then I was allowed to go home. Home... just where I wanted to be!

Needless to say I made it through surgery just fine and was home by about 5pm after what was another bumpy ride home... It's always comforting to arrive home when you've been dreading a procedure for years. I had contemplating doing this some time ago, but when the GI doctor said no more anti-inflammatory meds, and that I was cut off because my stomach was such a mess, and the pain started to creep in with a VENGANCE, I knew it was time to act. After two opinions from two very skilled doctors, I feel like, I got the very best care possible. I pray that the recovery goes smoothly and I am able to be the best mom to Sophie and Aiden and best mom and soon to be wife to my future husband "The Awesome Mr. P" and his family. I look forward to the quality of life I will have if this surgery was a success and I am able to recover properly. Now it's up to me to discipline myself enough to know not to bend or lift for six weeks, though I will probably be back to work in just a few weeks. I am really looking forward to that!

To my Histio Family, I will tell you, I mentioned Histiocytosis to about every nurse, nurse anesthetist, doctor and tech I could get my hands on. I encouraged them all to look it up, and even though they probably thought I was nuts, I just wanted to let them know about so maybe, if they see a case of it going forward, they won't miss it!

Thank you to all of you who have held us in your prayers. Thank you to my church, who had food delivered to us last night for last night's dinner and breakfast this morning. Thank you to my fiance, "The Awesome Mr. P" for driving three hours with his four children in tow to be here for me to help me heal. We are so humbled by this gesture and grateful that I can just focus on my getting better instead of worrying about anything. This has been pretty painful, but hopefully the pain will improve as healing begins. Now to get some sleep! Big hugs from all of us to you!

Healing prayer
Dear God,
We know that illness doesn't come from You! You are there to see us through...
We know that you are the God of comfort, guidance, peace and truth
We know that everything we do should be to glorify YOU and build each other up
When given the opportunity You call us to be an example to others by how we handle ourselves in crisis.
We know as we heal from disease or physical challenges or deal with terminal illness,
If we lean on you, O Lord, we will find comfort and peace,
We know that You are the God that has delivered people from illness and has also comforted the ones who can't be healed.
Help us to feel your omnipresence as we go through these days.
Help us to continue to lean on you and believe in you through the doubts that creep in because we are human.
You are strong, invincible and are a rock to lean on to be our refuge in times of trouble.
Help us to remember and be grateful for the Grace you sent in the form of Jesus Christ who died on the cross while we were yet sinners so that we may not have to suffer, but have eternal life with You in heaven.
(John 3:16 para)
AMEN!

Talk to you soon dear friends,
Jodi

Back surgery

I haven&# written a blog post in forever so here goes...Looking forward to tomorrow! Ive been handling severe back pain since the GI doc said that my stomach was all torn up due to the amount of anti-inflammatories I had been taking for my ongoing back issue. So,One of the nations most skilled neurosurgeons is going to do a discectomy on my L5/S1. I have to wake up very early to make the journey to the med center for an 8:00am check-in time.

I will write a detailed recount of the days events once I come to.

Have a great day Friends,
J