Keeping Busy & having FuN!!

Ryder is having some pretty good days. He has only been in mild pain occasionally throughout the day, but nothing to bad and it doesn’t last long. He is up to 25ml/hr via GJ tube feeds and down to 20 TPN. The goal is 45ml/hr through GJ tube and no TPN. The fever has been gone for a few days now and Ryder is starting to have more and more tantrums when we tell him no—just like any normal 2 year old would;) He would just lay in bed feeling blah before, so we welcome the tantrums and the energy he is regaining! John McDonald (D-Back shortstop) came to visit Ryder in the hospital. That really made his day! Ryder had the biggest smile on his face and really enjoyed hitting the balls that John pitched to him! He was a great guy and we really appreciate him taking the time to visit Ryder! We hear that there where many different requests to the D-Back’s team to do something special for Ryder, so thank you for making that happen for him We also have a friend working on getting him on the D-Back’s field and to a game once we are out of the hospital—how exciting!!! More exciting news: The Copperstate Fourwheelers are hosting a benefit run (off-roading vehicles) for Ryder on Sept. 29th—so keep that day open—it will be tons of fun!!! I have gotten many questions about this event. Chad (the organizer) is still in the process of planning, but just wants everyone to keep that day open. If anyone would like to help him (w/silent auction items, water, advertisment:radio/news, entertainment for kids/those w/out off road vehicles like bouncehouses/petting zoo--any other ideas at all)-- please contact him via facebook at Copperstate Fourwheelers or get a hold of me and I’ll give you his number. We will keep you informed on this event! We are so grateful for Ryder’s many loving supporters! We are blessed to have so many loving, caring people helping us out! Thanks to the Randall’s & my sister- we have a nice clean house! Thanks to the Clayton & York families for keeping Tyler and Noah entertained! Thanks to Erica and Lance Wills we have a wheelchair lift! We have received so many visitors, toys/snacks/movies/books/messages/calls to keep us entertained at the hospital (we are going on 3+ weeks now for this stay--ugh)!. We are truly amazed and grateful for your thoughtfulness and kindness! xoxo, Denise Staying busy:

Heart-Breaking Reality :(

I got a call from Ryder's neurologist tonight. You'll have to bare with me as I'm still trying to process and understand the information. Results came back from Ryder, Les & I's genetic sequencing test. 2 mutations were found on one of Ryder's chromosomes. He has a recessive, progressive, mitochondrial disease that affects the POLG. His body seems to not be able to break down protein. There is no cure. We can try a vitamin cocktail to slow down the disease progress, but this latest hospitalization seems to be a very large set back & regression. They found a mutation on one of my chromosomes and a different mutation on Les' chromosome which both transferred to a chromosome in Ryder. This test is not absolute. It isn't confirmed by a certified lab yet. It will be sent to Baylor for certification. There could be other mutations as well. From looking up POLG diseases, it looks like MiNGIE is a possibility (this is what I suspected). I am confused tonight and trying to wrap my mind around all of this. I have known this information in my heart, but it has taken my breath away to hear a confirmation. I wanted answers & needed to hear it--but my baby will not get better and doesn't have a long life ahead of him. I'm going to cry tonight and be ready to go to the hospital tomorrow and give that precious boy the best possible days he has on Earth.

Ryder's weekend

Ryder has had 3 good days in a row without vomiting and very little pain when he urinates. He went from screaming and rolling in pain when “dribbling” some urine very often to only stopping his activity and holding his diaper when he pees. He was having bladder spasms. The doctors started him on Ditropan tonight (muscle relaxant). We had to put starting the feeds through his GJ tube on hold until these spasms and the pain is under control. The down side to this medicine is that it slows down other body functions- like his GI tract which is already very, very slow. The doctor will monitor his reaction to the Ditropan and if all goes well we will start the feeds in 48hrs. The feeds will start slowly at 5ml/hr. We will increase the feeds very gradually after a few days at 5ml/hr. Our goal is to get him up to 45ml/hr without any vomiting. If this doesn’t work, Ryder will have to be on TPN (total parental nutrition= getting all nourishment through his veins.) This is what he’s been on for awhile. It is a last resort alternative and isn’t preferred due to the increase risk of sepsis (blood infection) since there is a direct line to his veins. We will be praying for a good outcome and that his body can tolerate feeds into his GJ tube/intestines. Thank you all so much for the visits and calls/messages. They help make these long hospital days seem shorter. There is still no end of this hospital stay in site. Some fun news is that Make-A-Wish contacted us!!!! I’m thinking Disney Cruise, Disney World or Disneyland/Universal studios. Any other ideas or input?

Mystery Pain that NEEDS to be solved!!!

It's my night to be home w/Ty & Noah. I've played w/them & loved on them, but they are now fast asleep--as I should be!!! How in the world can I sleep knowing how much pain Ryder is in still??? A Urologist came to see him today. It seems like he has a spastic,neurogenic bladder-which is very painful. I've finally convinced the doctors this isn't just a constipation issue after calling them in to watch his pain, video's of these episodes and having a break down asking them to look into the cause of his pain last night...I don't remember the last day he hasn't thrown up & I can't recall the last time he hasn't cried and rolled around in pain from trying to poop! The hospital environment has been heartbreaking. I can't imagine not being Ry's advocate and trying to help him in every way. However, their are many kids there alone w/no one to stay w/them or tell the doctors what is abnormal or which route to take in their care. The doctors do what they can w/the info they have, but in reality--it's not based on much. They see us less than 10 minutes a day. They rely on nursing/ nursing aide notes, which very often are not a true representation (not at all blaming them-but have made corrections several times a day-what about the kids w/out educated parents to help?) I've had to correct the aides to measure G-tube output seperate from urine output. I've had to tell doctors that Ryder hasn't had a 24 hour period w/out throwing up for months, because they see him happy and think he is doing well & don't seem to be looking at his past history or the big picture. Reality kinda stinks lately!!!!

Wednesday/Thursday

Ryder is in a lot of pain when he attempts to urinate.  Seems like he is having bladder spasms/neurogenic bladder issues.  He's continuing to vomit even more.  The nurses reduced his feeding through his J tube and restarted his nutrition through the PICC line.  Hopefully he'll be getting an ultra sound today.

They sent him for more x-ray's this morning to see if they can locate the problem.

Tuesday

Ry is up to 45ml through his J tube :)  This was the goal to reach, so they took him off the lipids and other nutrition he was getting through his PICC line.  He is still on a continuous vent and he's still vomiting...maybe it's because he is not swallowing?? Still working on that part.

Monday

Ry had a good night's sleep with daddy, but early this morning he started vomiting again.  He's been placed on continuous venting for now.  After such a great day yesterday, it's a little disheartening, but doctors continued monitoring today and options will probably be discussed tomorrow.

Sunday Funday

Hi guys, it's Auntie Jen.  I'm going to keep you all updated for a little bit the best I can.   Ry is still in the PICU (ICU for pediatrics).  Today is day 8.  He had his PICC line placed Friday morning and it seems to be doing wonders.  He was extremely uncomfortable with all the pokes he was getting last week.  Friday evening his GJ tube was placed.  If I remember right they began feedings through his tube at 5ml (which is about a teaspoon for the day) on Saturday.  He seemed to be doing OK with it until Saturday evening...he threw up again (this time it was a dark color).  Sunday, since Ry's stomach is only processing 3%, the nurse showed Denise how to "vent" through his tube.  Every third hour they are draining the contents (which is mostly bile & acids) of his stomach. He's still having difficulties swallowing, so he has a little suction tube that he his learning how to use on his own.  It's just like the one at the dentist.  X-rays show he has another blockage that is close to his rectum, so they gave him an enema to see if it would break up.  Shortly after we had a mess on our hands ;)  Although it didn't seem to really break everything up.  They continued his feeding throughout the day and he's up to 15ml as of last night.  Although he is still receiving his nutrients through the PICC line, it's good news that he was handling a little more through his GJ tube.  


It was great to see Ry in a pretty good mood all day Sunday...lots of smiles and giggles.  He really enjoyed spending time with all his visitors and a little time outside in the play area.  All-in-all, it was a good day :)

Ry & his new friend Baxter.  Thanks O'Brien Family! 

Going for a stroll

Getting in some batting practice

Offers to help

Les and I are relieving each other every night at the hospital now-tonight is my night to relax. I caught up with some friends, watched a few DVR shows, saw all the FB comments/messages for my family:) & actually took a shower!!! Although this is a tough time, I am determined to keep living in the moment. (If I didn't -I'd be to depressed to function for all my kids). I will not ask the what -if's, but I'm going to stay on top of my boys needs-ALL 3 of them- & I can now, not being in school;) We have had a wonderful out pour wanting to help us. It's always tough to think about what we really need at the moment, but we will accept help. We love visitors @PCH (but need to contact us ahead of time depending on Ry's day), If you're up to doing something fun w/Ty & Noah--that would be wonderful (our AWESOME friends the Clayton's have kept them entertained at their house since Monday -& they are still there not wanting to come home!-although I'm glad to have their minds off of Ryder's illness now) Les and I haven't spent time together- so a date night w/babysitting would be amazing! We truly appreciate anything and everything--cards, FB comments, calls, visits--whatever. It makes us feel loved:) We will need a lot of financial support once again or if anyone has contacts to help us out with a wheelchair lift for our Pilot or any specialized swing/equipment/toys for Ry to gain back some strength. Special talents like photography (for Ry & family), swimming lessons for all the boys--anything to help through the summer would be appreciated. I just wanted to say thanks to everyone's offers & let you know we DO APPRECIATE your concern & love:)

Out of surgery

Ryder's surgery went well (PICC Line placed). He's sleeping off the anesthesia now. He has his next test (another barium swallow) at 2:30. Results from one of his test yesterday show he is only emptying 3% of what he consumes- which is horrible news. I'm not sure he'll ever be able to eat/drink by mouth again (he wants to soooo bad & it’s hard to explain why he can't to a 2 yr old especially when his brothers & family can eat :( He's in the PICU (ICU for pediatrics). At first we thought it was because it was the 1st room available, but are learning this is where he needs to be. The lipids that are running through his veins are horribly hard on his veins. They were changing IV sites 1-2 times a day and the site infiltrated a few times. Luckily, it was caught early enough. The lipids pool around under the skin and it is very painful. It burns and causes necrosis (killing the cells/skin). He's starting to wake up now- so will fill you in more later.

Going Stir CRaZy!

I'm thinking of buying a personal hospital room for poor Ryder!! He is once again back in the hospital. He's lost 1 1/2 lbs in the 2 short days he was home since the last stay :( I have a feeling this stay will be our longest yet. They are planning a series of test and ultumitely will place a GJ tube instead of his current G-tube. The GJ tube provides nutrition directly into his small intestines instead of his stomach. Ryder just can seem to keep anything (even a few drops of pedialite) down :( As I email back and forth to Ryder's neuro and am having sleepless nights, I have really been doing a lot of research. What ever is causing all these issues with Ry is still unknown. The doctor is pretty sure it is a mitochondrial diesease though. I ran across: Mitochondrial Neurogastrointestinal Encephalopathy Disease during my research and it really seems right on to what Ryder is going through. I'm asking them to run a test for this while he's in the hospital. It's still progressive and degenerative, but from some articles I've read individuals have lived into their 30's with MNGIE (better prognosis then we have been hearing). However, on 70 case in the world have been reported, so that data info isn't based off much! Ryder will also be getting a suction machine for home. He continues to regress with swallowing. We need to stay on top of it to prevent pnemonia or choking. I'll be in school all day Tues-Thurs this week. We are already going stir crazy so if you want to visit or text let me know!!

1st kiss for my future D-Back player: Updates on Ryder & cute stories

Aww—I slept until 10:30 this morning and am feeling refreshed finally! We brought Ryder home last night and he seems to be feeling much, much better and already has most of his strength back (which is unusual for him after he is ill. It usually takes weeks before he can walk decently.) This illness/reason for hospitalization started on Thursday. Ever since his spinal tap on May 2nd, he hadn’t been acting right. He wasn’t able to walk more than 2-3 steps and needed to hold on to someone’s hand. He wasn’t having BM’s and nothing seemed to help w/that. We brought him in for an x-ray on Friday, meanwhile stopped tube feedings so he wouldn’t get backed up more. Friday night he threw up about 3 times. Saturday we had a get together at our house with some good friends & their kiddos. Ryder seemed okay. He was more mellow than usual, but ate and drank pretty well. Ryder got his 1st kiss on Sat from Ava (see pictures below :) Then on Sunday he started throwing up at night again. We ended up bringing him to PCH on Monday after 12 + times of vomiting mostly bile since he hadn’t eaten anything really since Saturday. The staff and doctors in PCH ER where beyond wonderful!!! Ryder continued to throw up after every dose of Zofran (anti-nausea) given to him. Another x-ray was done which showed moderate amount of stool impaction. He hadn’t had a BM (except a hard little one on Sat) for 4 days—which is very abnormal for him. I was so worried about Ry in the ER. I was holding him in the hospital bed and he couldn’t even lift his head. His neck would just flop back and he wasn’t responsive to much. When he threw up, we had to lean him forward so he wouldn’t choke or aspirate, because he wouldn’t move automatically. That was the scaredest I’ve been for Ryder. He was admitted after several hours of throwing up for dehydration, constipation and not being able to hold anything down. Ryder wasn’t able to eat by mouth or be tube feed until Wednesday night (imagine not eating or drinking for nearly a week!). During his hospital stay, the doctors and nurses worked so well with us as a team. I also emailed Ryder’s neurologist who spoke w/the doctors to aide in his care (I can’t tell you how much I appreciate Dr. Narayanan!!). Ryder’s GI doctor (Dr. McComber) and his general surgeon where also very involved in his care this stay. It was the smoothest communication/treatment that Ryder has ever received). Anyways, during his stay, Ry was rehydrated, given a full-extensive bowel cleanse with go-litely over a course of 2 days via G-tube continuous run. Needless to say, Les and I were covered in poop!!!!! He also had another EEG, which was abnormal (expected & same as EEG from 1yr ago). Ryder’s posterior nerve signals do not transmit signals to the rest of his body appropriately. They are slow and weak signals. Ryder was so adorable in the child life center (playroom). He loves to play doctor. There were 2 baby dolls that were Ryder’s patients. He checked everywhere for their G-tubes (just like he has). It was pretty cute. Ever since he got Button (his build-a-bear w/a G-tube) he is aware & looking for tubes on others ;) Also—Ryder is obsessed with baseball!!! Literally!! We brought him to a DBack game for Mother’s Day and he loves to play as well. Now, he watches baseball on TV!!! What 2 year old do you know that likes baseball soooo much?! I put the D-backs game on in his room for awhile. When he started looking at a book, I changed the channel to a cartoon. He immediately started fussing and signing throw & baseball. When I put it back to the game he was fine!! He laid back, crossed 1 leg over his knee and watched the game like a little man!! Each time a commercial came on he got upset and started signing again. I had to distract him as much as I could through commercials I am definitely thinking a baseball themed birthday party in September. I’d love to get him to more D-Back games and possibly on the field or to meet a player in uniform some day!!! I don’t want to bring him on the field w/lots of other kids because he does fall very easily if bumped. Any ideas on how I can make this happen? So now that Ryder is home, he seems to be getting back into the swing of things. He did throw up last night, but he stuffed too much potato in his mouth and some was caught on the roof of his mouth. He has huge sensory issues and hates texture in his mouth. A few hours later he started doing the no swallowing thing again for a long time. I’m not sure what that is from or if it could have been related to the potato insistent earlier in the evening? Who knows, but I’m hoping it won’t happen again and he’ll stay out of the hospital now!! Thank you everyone for your continued love and support. You all make each day much easier and better knowing we are all loved so much!