Saturday, July 28, 2012

More TIME with my little teacher

More TIME with my little teacher
Now that I can breath and think clearly again, I’ll tell you about the worst day of my life.
A small back track to Tuesday first, when Ryder had a great day. We worked and played hard on Tuesday and I started to HOPE that he may be somewhat mobile and happy again after the lengthy hospital stay that he had. I knew recovery would take time, but our little man is determined and a fighter. I videoed a short glimpse of our day. Ryder was able to sit up on his own after several minutes of encouragement.  Les and I left Grandma to watch Ryder that night so we could go to Noah’s curriculum night and then out on a much needed date for yummy sushi. When we got home Ryder was asleep and nothing eventful happened. It was a great day!
5:30 a.m. Ryder’s feeding pump started going off. Les got up, stopped the pump and changed Ry’s diaper. He noticed Ry was awake, but not fussing. Hoping he would fall back asleep, he climbed back into bed.
5:45 a.m. we both sat up hearing Ryder breathing funny (he sleeps in a toddler bed in our room). Les brought him into our bed and handed him to me. His head flopped back, eyes wide open and breathing funny. I began talking to him, snapping and trying to get his attention—but nothing…eyes still wide open. I gave him to Les saying we needed to go to the ER. I ran and woke up my mom telling her to watch the other boys, something was wrong with Ryder and we were taking him to the hospital. She jumped out of bed and we both ran back to my room. I took Ryder back and started heading out the door. Les thought we would get to the hospital faster if we drove. Part way out of the door I stopped and ran back inside yelling to called 911 NOW!!!!! He was limp in my arms with diminished breathes and eyes wide open, without blinking since 5:45. Les called 911 and they instructed us to lay him flat on the floor. A fire truck, police car and ambulance soon arrived. Ryder was unresponsive and started convulsing on the left side of his body. I was beside myself and could not breathe. I literally didn’t breath and clenched down hard on my jaws watching him jerk and the EMT’s trying to stabilize him. They kept asking me questions, but I couldn’t answer. It was surreal. This wasn’t happening, he had a good day yesterday…what was happening!!! They got him in the ambulance and I had to ride up front while Les drove behind us. Thank God the boys slept through this all!
Driving in the ambulance, I listened to lots of commotion in the back, praying, praying, praying he was okay. I was kind of numb at the same time not believing this was really happening…he was sooo good yesterday. I looked over in the 6a.m. traffic on the 60 to see my sister!!!! Sissy…I’m right here, something’s wrong with Ryder and I NEED YOU!!!!!!  I pulled out my cell and called her with a busy signal. I text her. There was more noise and commotion in the back. After passing an accident and a long 40min. drive to PCH, Les was waiting as we arrived and rushed Ry into the ER. His whole body was convulsing now. Uncontrollably…..wildly.. Les and I were allowed into the ER room while staff started working on him. Nurses were asking us questions. I watched everyone as Les answered them. His body was convulsing, there was a lot of commotion and I couldn’t breathe as I clenched my jaws tight. 1, 2, 3 10, 11, 14…….no 16 people I counted in the room working on my baby. 16 people. I’ve been in an ER room many times for observation and education and I never saw 16 people in one room working on one little baby, my baby, before. I watched his heart rate at 204 and pulse ox at 86%. They couldn’t get it under control. He was already on full strength oxygen. ” We need to incubate him,” sign here…….Breathe I tell myself, I sign…this isn’t happening.
We were transferred to the ICU. Time was irrelevant now. I don’t know what time it is. Ry’s not conscious. A nurse is using the ambo bag to keep him breathing. He’s unconscious and sedated…heavily.
In the ICU room I sat next to him and held his hand. He kept squeezing my hand jerking his upper body. He was still seizing even with the heavy medication. I couldn’t help him, or comfort him. I was in a nightmare. I was panicked and numb in waves, clenching my jaw and reminding myself occasionally to take a breath.
Not sure if it was hours or days, I was lost in this moment. I didn’t think my baby would make it. I was numb, but couldn’t breathe. I wasn’t home last night, I didn’t see his eyes looking at me this morning, I didn’t hear him make a noise, he was happy yesterday, he was making progress, he didn’t respond to me, his eyes were wide open, he wouldn’t respond. What in the world was happening?? Did I push him too much to sit up yesterday? Did I do something wrong. I’m guilty and I can’t help my baby. My jaw hurts badly, my head hurts and I feel guilty.
Hours go by. We watch them put a PICC line in as Ryder continues to seize, although heavily medicated and restrained. They tried 1, 2, 3 sites over 45 minutes to start a PICC line. Ryder’s all bruised up now.
They wrap his head up with gauze after setting all the EEG leads up. He is incubated, his head is wrapped up, and he has an IV and a PICC line, several bandages from failed attempts of PICC’s and IV spots and is unconscious. My baby. This is not happening.
Everything was jumbled now and I didn’t know what was happening. He had an MRI; he was running a fever and couldn’t breathe on his own. The EEG showed constant right side seizing, with occasional left side as well. Was it just settling down from the prolonged seizure?
“ Dr. is this positively a seizure?”
“No, it’s not definitely a seizure.”
“Did, he have a stroke?”
“We don’t know yet. We need to wait for the MRI results.”
Waiting, praying, crying, praying, reminding myself to breath and PRAYING. The nurse announced that they wanted to do a lumbar puncture.
I didn’t want to do a lumbar puncture. I felt like the last LP was the cause of the past few month downward spiral. We called doctor N. We love Ry’s neurologist and trust him whole heartedly.
Meanwhile the nurse came in to prep for a LP.
“Why can’t we wait for the MRI results first before doing the LP?”
“The results are back and show he has a thrombus in his sinus cavity”
“WHAT? WHAT? WHAT does that mean, I don’t understand? Can the doctor come talk to us? I don’t understand?”
Why isn’t anyone telling us what is going on? I know what a thrombosis is…it’s bad. Ryder’s still not conscious and his EEG is still going crazy.
“Please have the doctor come talk to us”
“He’ll be in soon. He’s waiting on labs and the blood culture results so he can explain the next step and MRI at the same time.”
In the next several hours, Ryder had a lumbar puncture, his heart rate remained in the upper 160’s and he was started on a blood thinner medication.
My mom, sister and brother Billy were with us. It was a long, long day that never seemed to end. I held ice bags on my jaws and head. They hurt so badly. I still wasn’t thinking clearly and was in shock.
The next afternoon, after several attempts, Ryder began breathing on his own and was excubated. Eventually all the EEG leads were removed and so was his oxygen canula. He began coughing, mumbling noises and moved his limbs. What a relief.
Thursday through Saturday, Ryder become more and more agitated. He has started moving his limbs voluntarily and making noises. He’s struggling to open his eyes. He’s very floppy. I picked him up last night for the first time after being disconnected from everything. It was strange. He is dead weight in my arms. He can’t hold his head up on his own. Ry and I had a little dance party in his ICU room with Pandora playing for us. I spun him around and sang to him. We are very much alive in this moment. My baby is still with me. My teacher, my heart.
My lessons on this horrible night:
1.       Have FAITH!! I had so many talks with God that night. I had to remind myself over and over that the situation was out of my control. It’s HIS will, no matter how much I begged and promised and became upset, it was out of my hands. I placed it all in God’s hands that night and prayed for him to wrap his arms around Ryder, Les and I and give us strength. My prayer was answered.
2.       Appreciate what I have… Les is my rock and keeps my world spinning. He calms me and keeps me anchored in reality. When I start getting lost in the what ifs or feeling guilty, he brings me back so gently and easily. I love my Les! Also, no matter what our boy’s abilities are, I love them and we will give them every opportunity and pleasure in life that we can.
3.       Forgive and unload my heavy heart…. I’ve been sad and hurt since May from a long time friendship that has been strained. I kept close family and friends updated via facebook and text during this ordeal. As I checked the names to text, I hesitated on one. I felt this friend didn’t care anymore. She didn’t make an effort to reach out to me or visits Ry since his regression in May. I was hurt and mad at the same time. I decided to include her in my text because I know she loves Ry and I know she loves me as well. Life is so short and my friend has been in my life through so much.  Sometimes, people are placed in our lives to get us through tough times, some to be our anchors and lifelong friends, others to teach us valuable lessons and then we are meant to move on.

Thank you for all of your prayers, love and support my dear family and friends. We are grateful for more time with our Bubba!!!!!!!

Saturday, July 21, 2012

Old Ryder, New Ryder

First off, HOW COOL IS THIS NEW PAGE??!!! Thanks to my sister Jen, it is looking great!

Ryder’s time at home has been an up and down rollercoaster, hour to hour. While we are so thrilled to have our munchkin home, it has been a big change. The Ryder we brought to the hospital a few months ago was a delightful, happy boy who nodded “yes” to everything and thought it was the funniest thing to hit the ball off of his tee and run, run, run down the hall laughing. We would search for new foods besides the everyday oatmeal, waffles drenched in syrup, beans and marshmellows that he would eat. The Ryder we brought home is very weak and would be content to watch TV all day if let be.He is not able to eat or drink anymore. He has bouts of vomiting and pain during the day. Ry seems frustrated and angry. He bites his wrists, clenches his teeth, hits himself and things around him and it is hard to get him to laugh. I’m not sure if these behaviors are from pain or frustration from not being able to walk or do the things he was able to do a short time ago. It may also be his vision. His nystagmus is more prevalent and he holds things to the side of his face to look at often. I’m sure his perception is off, which can cause visual disturbance and headaches. I just haven’t been able to “read” these new behaviors and what they mean yet. I’m glad I’m at home with him now and I’m going to figure him out again.

Ryder is on a “mito” vitamin cocktail that insurance still has not approved to pay for. With research and support groups, I have found this to be a common issue that patients deal with. I learned some really interesting information on the MitoAction webpage. Because a lot of Ryder’s cocktail is vitamins and supplements, insurance doesn’t seem to want to pay for it. Ryder has private insurance as well as long term state and CRS insurance. It’s crazy with all this coverage that this is even an issue in my opinion! It might be that each insurance company is passing it on to another to cover it, who knows. We have already run out of his CoQ10 and bought some ourselves. For $34, we get 3 days worth of CoQ10. This is only 1 of his very important supplements. Back to my point though, this MitoAction site is something you should check out if you are going through the same thing. There is a seminar on podcast and PowerPoint called “9 Ways to Get Your Insurance Company to Pay”. Even with preauthorization for a prescription, I have asked the doctor to write a letter of necessity and we will have the prescriptions’ filled through a compound pharmacy. If folic acid is compounded into his vitamin cocktail, then the pharmacist can bill insurance companies using folic acid as the main ingredient. It will be nice to have a compounded cocktail anyways so we aren’t using 9 bottles 2-3 times a day to get his meds ready.

Make-A-Wish grantors came to our house this past week. We came up with 3 possibilities for a family vacation. At first, we really wanted to go on a Disney Cruise. However, it seems the Disney cruises Make-A-Wish kids can go on only last 3 nights. A place called Give Kids the World in Florida was brought to our attention. It looks AMAZING!!! If we do that trip it would be a 6 night stay in Florida with park hopper passes (Disney World & Universal Studios) as well as beach time and the stay at Give Kids the World. I forget the 3rd pick, maybe Disneyland?! Anyways, it looks like we will go on one of these fun adventures either in October or December. YAY!!

I am writing this blog at the Ryan House. This weekend, Les took Ty and Noah camping and Ryder and I are resting/playing at the Ryan House. It is Saturday, and Ryder’s wonderful, amazing and generous neurologist (Dr. Narayanan) stopped by for a visit and chat this morning!! I can’t tell you how amazing this man is! He is working so very hard to find ways to help Ryder and many other kids, including our good friends the Clayton’s children. He stayed for awhile and played with Ryder. He held Ryder while I went to get my phone to show him the birth video I recently discovered. When it was time for Dr. N to go, Ryder didn’t want to come back to me or leave Dr. N’s arms :) Since Ryder’s release from the hospital we have only seen him happy and playful a few times. The first time was at our friends’ house in the pool. He splashed and played. That was the first time we went to a bbq and Ryder did have a difficult time not being able to eat, but Holly distracted him by racing him around in his wheelchair. This weekend has been another time that I am seeing glimpses of the old Ryder. He’s loving his time at the Ryan House! He’s smiling every time I see him! It gives me hope that we will start seeing more and more happy times with the pain under control. We are hoping he gets enough strength back to pull himself up again, crawl or run, run, run after he hits a ball!

Sunday, July 8, 2012

Wonderful to be discharged!!!Not so wonderful to be readmitted already:(

We had a great day and a half at home with Ryder before we had to bring him back into the hospital. He was admitted again for vomiting and retching 20+ times on Saturday. He was lethargic and grinding his teeth all day too. He received labs & an x-ray. The x-ray results came back today showing the J part of his GJ tube was out of place. Luckily, it was fixed today. Normally they don't do these procedures on the weekend. The doctor told me the J tube (that's usually in his small intestines) had dislodged and went all the way up his esophagus and almost out through his mouth!!! So his esophagus is all torn up from the tube & violent vomiting & retching. His GJ tube was too small, tight and short for him (J potion put in only 3 or 4 weeks ago?!!) which caused ulcers. My poor baby seems mad at the world right now. He won't even look at me :( For all that know him-- that is so very unusual. I guess I'd not be in a good mood either if I was him :( I'm also worried now that if his J tube was up that high and they gave him his meds through it that he could have aspirated all of them--hence the fever and possible pneumonia? Hopefully I'm over thinking and he just has a stomach bug though. Never a dull moment for us!!

Monday, July 2, 2012

Montana Mountain run: Message from Chad

I copied this message from Ryder's run event page for those of you without FaceBook :) This benefit trail ride is being held on Saturday September the 29th on the Montana Mountain trail near Superior, Az. The meeting location is the Desert Rat Truck and Offroad center at 4453 S. Rural rd in Tempe, south of the US 60 at 7AM; we will be departing for the trail at 9AM. There are no fees for participating in the trail ride. This is important for people to know given some rules regarding special events being held on the Tonto National Forest. There are 3 ways in which people can donate to the Hauer family. 1) I am in the process of opening a Wells Fargo account that people will be able to donate to at any Wells Fargo branch. I will post details as soon as they are are available. 2) People can make donations the day of the event. Or, 3) People can contribute by buying Ryder's Run stickers or through the silent auction being held the day of the event from 7AM to 830AM. If anyone would like to help with or donate to the silent auction, please contact me by messaging me (Chad Chaney). An offroad vehicle is not required however a 2wd vehicle in good running order with medium to high ground clearance is needed. For example, minivans and lower passenger car type vehicles are not recommended. Licensed and street legal side by sides, ATVs, motorcycles, and other offroad vehicles are certainly welcome. Participants should bring something for lunch. There is a big area on the top of Montana Mountain that is a nice place to stop for lunch. Also bring plenty of water, sunscreen, and cameras. This is a nice and scenic trail with plenty to see. I anticipate the trail ride itself will take 3 hours not including travel time from Desert Rat (approx 45 mins). If anyone has any other questions please let me know. Thank you, Chad. If you would like Chad's # let me know.