Learning to Be Brave ..... Again

After getting Tyler's casts off we went straight to get his braces. Brett asked us to bring in his loaner walker so that we could see if there was any sores on Tyler's feet. As he cautiously stood up                   (complaining as he went) there was a huge rush of relief that he was standing. But a huge disappointment but mostly sadness, came rushing through. I never expected that many emotions over such a small act.

It was such a small act. But it was an act of bravery. Bravery on the face of a non compliant, yet braver than anyone I know, face. And on the face of a 9 year old boy.

With each small thing, he truly does put on a brave face. But you know who else does. Every single person in this house.

 Grayson gets left out of SO many things and even when he acts out and is hard. He is still brave. Because having a brave brother and having a brother who has special needs and takes up a lot of time. It makes him have a brave face.

Dallas and I put on a brave face, because we see this boy going from walking to not walking. The feelings of him not being able to jump and run, the regression, the sadness and the roller coaster that we don't get a choice of riding or not riding.

So for now, we will start over and learn to be brave all over again.

Starting at ground zero.

Again.

It's not easy being green....

Ty's feet had a rough go for a few weeks. Something about his feet were making a HUGE stink. We could smell him clear across the room. They were so gross. We tried everything we could. We even put him in his cast galoshes and put him in the tub and SCRUBBED... But we might have made the problem worse.

A few days after the big scrub down the smell got even worse. With a phone call to a friend in Washington DC a little bird put a thought of infection into my head and I called the doctors office. The doctors office blew me off three times.  Finally the last time they decided that we could come in and they would take a peek and see if maybe his casts had gotten wet or there was infection. I told them the stinky foot was the one where we had done the most work on his feet and his tibia, but that didn't sway them to take me any more serious.

After a convincing 48 hours of waiting ( meaning I called and left a message and it took 2 days to get back to me) I was able to get them to agree to see us right after lunch. The cast dude came in and got us and got us started in taking off the stinky foot to see what was going on.

Dr. Emily was summoned and I joke with her that we smelled funky but come on in... and then the big reveal happened. Tyler's foot had gotten so wet that his foot had some how grown mold all over his foot. Not just mold but black and green mold. It was HORRIBLE.

This foot has the most work done and the most plates and stitches that are under the casts and I was horrified when I saw what was under the casts. So was the Doctor.  She admitted him to get antibiotics for the afternoon while we got his feet dried and scrapped. He was one mad dude. 

The white stuff is the wet feet stuff. The black stuff is mold and dried blood and the green stuff is mold. We cleaned around his incisions. We re taped his incisions and she inspected his foot. She rubbed antiseptic stuff on it stuff on it, waited for it to dry and the other foot was taken off. A small amount of mold was on the other foot and we started the process again. Grayson was there and I didn't get a picture of the other foot but did get a picture of them working on him. 

After about 6 hours we were able to leave and go home. Tyler was put back in casts for the remaining 2 weeks. He opted for Green this time. He said it was for Oscar the Grouch. Not sure that he was really aware that green was GROWING on his feet.  In 2 days we get his casts off and as soon as we get  them off we run down to our favorite orthotic people and recast ourselves for a few minutes while we get our new braces done. Tyler has to stay off his feet until we get our braces off, but we are hoping we are able to at least start moving a little.

At least now we can "legally" have a bath and enjoy a bit of bubble baths while we get ourselves ready for school in 2 weeks!!!

Longest MONTH EVER

This has been the LONGEST month in forever! At first the days went by forever slow because Tyler could do nothing. Then he could want to do something. Now he WANTS to do things and he can't. When he tries and can, we wear it out. Meltdowns are plenty and loud and hurtful too!


So here it is in all it's glory~

Car rides were REALLY hard and we couldn't stay awake....... ever. 

We have mastered go fish with the Paw Patrol. 

We got Tattoo sleeves with stickers to go on top!

We got an invitation from our Best Friends at Sesame Street and we were invited to watch them DANCE!!!! 

Turns out, that my baby grew up the last six months and I don't know where he went. We sure do love him a lot. 

And because our baby Grayson LOVES trucks,  we had to get a picture of the coolest truck in the world....

We wore pants! and took the gross, nasty knee thingy bobby things off for a bit. And we had a few really great leg bends. 

Sleeping with turtles is incredibly relaxing.......

Basketball Games, in wheelchairs, in the kitchen for a while!!! 

We figured out free Student bowling for the summer and were worried that it was out of the question. His Chair fit right underneath his ramp and we had a great bowling session. Grayson LOVED it. That kid has ben bowling since he was 3 months old. He lost by one point. But that stupid ARCADE kills our budget EVERY TIME!!! 

After a day and a half of a meltdown and three workers at a total loss of what to do to help him. With seizure meds and rescue meds and other meds and him biting and screaming. It was pretty bad. We wanted to have him try to play some games and stay off of the iPad and spend some times reading and playing games. We have picked up a few good ones  recently.

During the meltdown we were able to get him into the pool and it really chilled him out!

The weather changed and we made snowmen and Tyler made snow angels to go with it. Of course it was a pintrest fail in the highest level, there than the boys LOVED it. So for that we will call it a WIN!! OH, and yes, it looks like crack.

We sleep in pool watching Octonauts



We are still serving. We have 3 weeks.Then we get the stink feet things off and we see what damage we have done to his walking muscles ad then we have to get PT going. School is not loving our wheelchair option thing. But we have LOTS of things to work on soon.


So till then........ we play with SHUNTS and meet the Pope!!

Recovery

Getting Tyler home was so nice. The day we got him home, we were still figuring things out and Grandpa had to leave to go home to our grandma. We were saying our prayers for the night with Tyler and he was asking to please bless our "Creaky Grandma who is awesome and old." We all busted up a bit. Poor lady. She really does feel old.

Grandpa was sad to go, but Grayson was pretty sad too. He had Grandpa to himself a lot. Which we are SOOO thankful for. Home was where Tyler finally ate some food. We were worried about his food, but he did so much better at home.

The only big problem we faced at the beginning was some constipation issue with Tyler. So we mixed a lovely drink of Poo Pepper. Fortunately for me, Tyler and Grayson both consumed a large portion of mixed drink. Finally, after a trip to the pediatrician's in which Dr. Auxier just giggled and laughed like a school girl, and telling me good luck and to double the dose of Poo Pepper. He then laughed, brought in a LARGE bag full of chuck's pads and said I would need these and don't forget to double diaper.  HAHA to him. BOOOO

Learning to get around the house and the park and the car and the store is a HUGE chore. He doesn't want to do anything but play on the iPad. He is a happy camper to spend as much money as possible in the app store.

The first 2 days were hard on him and he kept trying to get up. He fell off his bed a few times and the couch as he tried to stand up. But there is nothing there to hold him up. He is a fast learner and a fish out of water :) 

Grayson was just chilling waiting for me to come get the stink who got off his bed on his own .



And to sit in a big chair to get him off his bum. But he was a trooper. But he was still stubborn and would try and do what he wanted to do.

Getting out the door is almost a laughing on the floor joke. But we have done it a few time. It gets a bit easier but the whole wheel chair thing doesn't. 

We had our Speech and OT start back up and we need to take a bit of time and get the PT back here to work on our core strength. He has no core muscles and if we want him to have some now would  the time. 

So we are 2 weeks at home with recovery..... and we are still working out the kinks. 

But welcome home buddy! 

Day 4- Monday- Memorial Day May 26

Monday was the big day. My dad came up as usual but I was not going to be going home until we got everything we needed done. I needed to talk to the Doctor to get all the information I was going to need to get us home and what was going to happen at home. We needed to get him up and going and I wanted to see him off his electronics. The iPad was a great gift that made it so he survived his surgery.

Grandpa and I convinced a crabby pants Tyler to put his iPad down long enough to go find something to do at the kids zone. I had heard it was a pretty cool place and I was hoping that he would at least be willing to play a bit.

When you get into the play room they have to verify with your nurse you are allowed to play. We had no problem and only one restriction..Stay in your chair. We headed back to the video game section and we tried to play Mario Cart in which we lost terribly. It was awful.

We were very excited to see the air hockey table be open. Air hockey is one of his favorite things to do. So we played with it for a while. Pretty sure that Tyler kicked Grandpa's trash!

We moved on to play a game of pool. But his poor coordination allows us to make up games called Pool Bowling. He loved it. He did a few rounds and then was ready to go. He was getting tired by now so we went on home to our floor on the 8th floor.

I was left to call the home health company to be a mean mom and get our chair there. It was the ONLY thing that was keeping us from going home. FINALLY we were ready to go!!!!

Dallas stayed home with Grayson because we were suppose to be home MUCH earlier than we were. But we were up waiting for the LAST thing so I told him not to come up. It took us forever but we got us home.

We were SO SO glad to be home!!!

Day 3- Sunday May 24th

Sunday was just a long day.  With Tyler still on an epidural and continual pain meds he had a catheter in and he could literally not even feel his feet. Once again my dad got there bright and early to spell me off. It was seriously the best thing we have EVER done. It helped me be a lot less emotional but I was still pretty dang emotional.

My dad came up again in the morning to stay with Tyler. Today his epidural had been taken out and so he needed to get up and get in a chair and be taking regular pain meds where his epidural was round the clock. The biggest problem, the "regular" kids with surgery get is that in between their doses of pain meds they are given doses of Valium to of set the muscle cramps and the anxiety for the kiddo's. But Ty could have ONE dose in the morning and nothing in the afternoon because he takes a almost deadly dose in the evening time. So we had to find an alternative. Lucky for us he would just a  bit a crabby and they would give him toridol and let us keep his Valium at night.

I left when my dad go there and Dallas and Grayson were ready to go up to the hospital to give Tyler his gift from the toy store. It was SO nice to have a quiet, cool house and I felt very rested. I called up around the same time that Grayson was ready to come home, so I ran to the store and bought some stuff to whip up a dinner that didn't come from the hospital. So we had chicken and I made Dallas his favorite for a night snack when he got home. So this made it so that I didn't get to spend much time at the hospital on Sunday. While I was sitting there having a bit of guilt, I thought, wait, this kiddo had 3 people at the hospital all day. Grayson has 3 people around him that love him. I did OK. I headed up and slept at the hospital and wasn't going to be going right home in the morning because we need to talk HOME!!!

So I don't have any photos for the day on Sunday and I am OK with that! I did have a great nap.

Day 2- Saturday, May 23rd

The first night was such a worthless night. I was so thankful to have my dad walk in VERY early in the morning to sit with Tyler. I didn't even care that I didn't get to talk to the doctors and the only thing I wanted was my bed!  My dad was more than willing to sit and watch the worst set of kid hospital channels EVER and hang out. He was also the one that talked to the doctor and was able to relay what we needed.

He was only there for a little bit of time when Tyler finally settled in to sleep and my dad was awesome enough to ask people not to come in. So for a few hours he was sleeping soundly. We still couldn't get him to eat though. ( ok, not really. He would eat Ice Cream)

He wouldn't stop asking for a basketball hoop and he was trying so hard to get up and do things. After a good little nap for me, Grayson and I went ballon shopping and Dallas went to get everyone food and head up to the hospital. We all stayed there until Grayson got restless. My dad took Grayson home and Dallas and I stayed. I wanted to have a night to help put Grayson to bed so I went home later in the day.  Grayson and my dad and I went on a quick trip to the toy store. We were on a quest to find an over the door basketball for Tyler. And then Grayson got to pick one toy. That child found the trucks and he was not ever going to leave. Just as we were leaving we found the best mat for him. So him we went.

He was holding up SO good. He was able to stay with Grandpa while Dad came home and I thought he would sleep on the couch but he was still up when Dallas got home!  ( We have always had a strict, strict bedtime of 8-8:30. In the last 2 weeks that has gone out the window. Even now that we are home.... we are LUCKY if everyone is asleep before 11.)

I went back to the hospital to settle in for the night and start over!

We were still struggling to get the darn meds right, ( I mean it is SO hard to take what we get at home and convince a pharmacist to just follow the script or call the doctor.. sheesh )but once we did Tyler had a very good night. He was up bright and early but the nurses didn't even come in as often and we both did pretty good. He never complained and he did really well. I was pretty impressed. This kid is seriously the best kid ever. He is such a super hero.

Surgery Day- May 22

Tyler was one of the first cases that day. We checked in bright and early at 7 am at Phoenix Children's Hospital. Grayson stayed home with my dad, who came to help. The surgery was slated to take up to  8 hours. The list of stuff was long and the doctor was doing it solo. We knew all of those thing. So we prepared our self for a long day.

When surgery started, Tyler was wheeled back happy as could be and he didn't cry. I didn't cry. This was the first time in 9 years that I didn't cry when they took him away from me. They took my cell phone number and Dallas and I went off to find a place that was not a closed in, stink room of grossness. I had remembered from our previous stays that each floor had their own family rooms so we went off in there. I slept a bit but we had numerous texts from our  friends and family. ( Thank you to all who sent them and all the love and support we felt while there) They were very much appreciated. As we got settled in, we were called to run to the 4th floor, Surgery floor, and resign papers. There was a change in plans and the entire surgery is changing. ( Anxiety and our hearts were beating pretty dang fast!!)

We took off and met our surgeon and resigned papers. We agreed that what she was saying was OK. And that no matter what the outside stuff showed, under anesthesia he was a totally different kid and she knew exactly what she needed to do.

We signed.
She left.

The plan was to call me every few hours with an update so that we knew what was going on and what was happening according to plan and where we were by means of extra blood etc. An Arterial line was placed to keep his blood in check so we wouldn't have to transfuse. The nurses were right on in calling and we were kept very up to date.

At 7.5 hours we got the call to head up to the fourth floor and we could met with the surgeon. Dr. Emily came out and went over all that we did and all that we didn't do. A nurse from recover came to get us before Dr. Emily was done talking to us. She was a bit surprised and I am not sure she finished. I felt like I flew out the door to see my kiddo.

Dr. Emily was a bit surprised that he was awake so fast so she went with us to take a peek. Not only was Tyler awake, he was NOT crying and was asking for his mom ( and dad but mom is a sucker!!) because he " Wanted to go play basketball and a Dr. Pepper."

Did I mention he didn't cry!!? I cried!!! He looked so, so good!!

We were only in recovery for about 45 minutes. We called Grandpa and let him know the plan. We had Grandpa and Grayson come up for a little bit to see Tyler. Grayson was a bit concerned that Ty was in the hospital but Grayson did GREAT! Dallas left with my dad that night and I stayed up with Tyler.  Tyler had a pretty restless night.

The nurses and doctors had a issue getting the medicine that he is normally prescribed sent up to him to sleep. So he was up all night. They kept getting his Valium flagged and they were upset over the dosage of his seizure meds and he had no baclofen. There was no muscle relaxers!! The night was so insane. INSANE!!

 I was thankful for day one to be over!!!

Thursday May 21st- Second opinion Ortho Consult ( Ok turn out to be 5th)

On May 8th we went to Shriner's hospital in down town Phoenix Outreach. We  saw a Doctor that went over the results of our gait lab with our regular doctor in Utah and our physiatrist in Utah to provide another opinion and recommendations to our newest Orthopedic doctor here at Phoenix Children's.

Shriner's is an amazing place and we always have such a good time going there. We are able to met up with a few of our past friends we haven't seen in a while. And of course the Shriner's are always trying hard to make sure your appointments is fun and happy.

We got the information and the doctor was heading to converse with Dr. Shrader ( the leaving Ortho surgeon and Dr. Andresevic, our current orthopedic doc) over the next week.

I got an email from Dr. Shrader letting us know that they ( Dr. A and himself) that they would like to take Tyler ( His file, not the kid! )  to a conference and use his gait labs and x-rays and movement and all that jazz, as a case study for even more input.

We were gearing up for our 21st appointment with no full information on what in the world we were doing to our child.

When we got to PCH we went in and got into Dr. Emily's office and went in to See her. She said that she was excited to have this case. That she has never coordinated with this may doctors to take care of one little  boy. She also said that Shriner's doctors are VERY protective and that our Physiatrists are VERY protective and want to make sure that everything is written down and we fully understand.

This was the list we were handed of what everyone had agreed was the best possible outcome . The last one was just a possibility. They would make it solidified once he was under anesthesia as far as what lengthening we would need to do or not do. Under anesthesia Tyler doesn't fight his tone. So because of this they can tell you what really needs to be lengthened. 

The definitions are as followed for the list above: ( this is a pretty simply definition)

1)Bilateral abductors releases- abductors are the muscles that make his legs open in his groin area. ( this was NOT done!!!! He had great tone and wasn't fighting and his range of motion was amazing!)

2) Bilateral hamstrings- Lengthening the hamstrings on both legs is basically cutting the fascia or thin lining and basically cutting them in half so that they can be lengthened then grow back together. 

3)Gastro lengthening- Lengthening his calf muscles in the same fashion they do the hamstrings. Done on both legs 

4) Right foot column lengthening- His feet are deformed a lot and of the work done was to correct how his feet are and how to make them not have contractures. 

5) Left foot Lengthening: same as above. 

6)Right femur rotation- Break his leg and turn it correctly

7) Right Tibia rotated- same as above and rotated his tibia. 

8) Right rectus femurs recession is the muscle on the outside. Basically the thigh. However, this ended up not having to b done. 

We then headed down to the clinic to for pre op stuff. His nurse there was so so terrible. I wish we could keep the nice nurse that was still learning her job. She was fabulous!!

This was a very long and a very information filled appointment. It was exhausting and the start to  very long week. 

Laser Beams and the Aggie Doctor

We ran into the podiatrist that we have been seeing and have been doing a laser treatment program on his foot. We have been going much more frequently than the average person because we need it to close so much faster. We had exactly 2 weeks. We are not down to 4 days.

We saw some VAST improvement over the course of the first week. We are looking amazing today and have one more visit before our final appointments on Thursday and go in on Friday. But this week is looking to be a HUGE stressor. Did we mention Tyler is done with school on Thursday but he has appointments ALL day, so he is done a day early. It almost got our surgery to be rescheduled.

Day one and day three Pressure sore

The last day ( Thursday May 21st, the day before his surgery ) Trying to get it all under control enough to keep the surgery on the books. 

We are so thankful for Dr. Newswander that we keep going back. We will see him after surgery if we need to for any reason. He is a GREAT doctor!!

Biggest BONUS of all- He is a TRUE blue AGGIE- 

Orthotic Specialist- Bret

During the mess with Tyler's feet we went to get a temporary brace on Tyler's feet. We have the BEST place to go. We were first introduced to Bret and Barb when Ty was just a baby. Shriner's used them when we first started using outreach. They did our very first pair of Orthotics.

I called Bret and asked for ANTHING that would keep his foot from turning and making the foot worse and make him walk on the top. Bret quickly worked us in and we had a great experience yet again. We love them .






The brace was temporary but we hope seeing these people last forever11

Fun Friday- With Decubitus Ulcers on top

We try to make every Friday something that Tyler and Grayson can work toward. Usually it is a good activity like Bowling or swimming or some place or thing they have worked towards doing as a family. If he has days at school where he won't do anything or he yells ( turns out he yelled at his teacher and told her to shut up last week at school haha!) he doesn't get to do his fun Friday activity.

This last Friday we thought we would go swimming at a heated pool. He had to work for it. He almost lost it.... twice. And had I seen the paper that he yelled at his art teacher I would have said " Um no!!" but I didn't.

So after Shriner's Hospital we headed to the pool. We also picked the COLDEST day of the week to go but we had a good time. We took our neighbor friend, Sawyer. Grayson adores Sawyer and Tyler is a fish. He just goes and goes and does well in taking care of himself on the slides.

My sweet Grayson who just wanted to run and scream in his Paw Patrol Pants. 

Tyler and Sawyer. Ty was climbing back UP to the little slide.

Tyler soon decided that the regular slides were not enough for him so he asked to go down the big twisty slides. So him and his worker, Ciera, climbed up to the top 5 times and and he went down and LOVED it! The water was not overly warm but it was heated. But it was only 77 degrees outside. For us Arizona people, that is COLD!! We were super duper cold. Once Ty got cold his foot instantly turned in and he started walking on the top of it again. He was dragging it and just walking wrong. I carried him a bit, and Ciera carried him a bit. 

A side note about Ciera-


Ciara joined our little family over a year ago. We made a schedule with her that worked for all of us. And for some reason we have embraced having her here and we feed her for dinner and we do our night routine after we all have had dinner. So we sit as a family with her. She prayers with the boys, she eats the food. She helps with the boys and she is fabulous with Tyler. She climbed into the pool with him and cradled him around and just talked to him and did all that he wanted to do.

I feel truly overly blessed to have her working with our family. In fact, we have always been blessed. The last 2, Kelsey and Brynne we have LOVED them as well. Kelsey was just in a place she needed no  extra stress or hours and Brynne needed better and different hours. But for Ciera we work for her. We have hired some help for Ciera this summer but no one can take care of Tyler like Ciera can .

After we got home from the pool. Ty said that his foot hurt, but we got dinner going and did our dinner thing and didn't think much of it

Mother's day weekend came and Dallas asked me if I had seen his foot. I said I had not. I didn't look at it till Sunday and I freaked OUT!! His entire foot is open and back up to worse than what it was 2  weeks ago.

So that brings us to the Pressure sore.

When Tyler's feet got cold, he started dragging his foot and he peeled off a good chunk of his foot. So back to the podiatrist we went. we was really worried about it. But we went in and they opted to fix it with a laser treatment 4 times in the next ten days to get it to close faster. We do Antibiotic ointment and some bandages, after school we leave it open air so that it can harden up. His poor feet are truly the only thing he complains about.

This is the new sore. The Dry patch and the "spot" was the big one from yesterday's post!

So, this week we are praying that the wound heals fast for Tyler's foot. That we can do our best to keep it small enough that our surgery won't be postponed. 

I think we will keep our Fun Friday to bowling!

Lets talk about Pressure sores

I am a SENIOR at ASU here in Tempe. I am online so I am able to do most of my homework at night. I haven't done so bad considering all the stuff that goes on in our world. Just therapy alone takes up 3 days and appointments take up a few other days and a 3 year old takes up a lot more!

But my nights are filled with homework and reading and writing and rewriting.

After finals though, I can blog. Which I LOVE!


So tonight we are going to talk about Pressure sores. That is right decubitus ulcers.

The last few months ( OK maybe year)  we have been dealing with one on our foot. It stinks!

The curve of his cute deformed feet are actually a bony contracture and it causes pressure. The more we wait on his surgery the more contractors he will develop. But we have gone in to have this pressure sore looked at a few times and have been able to stay in office with our pediatrician. With surgery coming up, Dr. Emily ( the Ortho) needed clearance from our Pediatrician, neurologist and neurosurgery. We got 2 of the 3 super easy but needed a full check up with the pediatrician.

Dr. Carrol didn't love the look of our current pressure sore so he sent us to a local Podiatrist to have it taken care of. He said it would heal faster and that he might be able to get us a hard boot for Tyler to use so he wasn't walking on his foot. We didn't need the boot because we got our brace ordered from Bret ( the next post!!) and so we really just needed his sore taken care of.

In order to have surgery no open wounds can be on his body. So this was a big deal.

This is what his sore looked like the second day and before we saw the podiatrist:

This is what our pediatrician saw and this is what I saw and this is what makes me have anxiety. this is not OK.  Pressure sores can be so so bad. 

The podiatrist took a scalpel and literally shaved off the dead skin layer by layer until he got down to fresh skin. He showed me how to clean the edges every night, how to file it down and how to fix it so that we have little to no rubbing on a regular basis so that he can still wear a shoe and brace. Until we get his feet fixed I have a feeling ( even after) that this will be an on going issue.

At night we get out our "boo boo kit" and work really hard to do our best so that Tyler doesn't cry over his foot hurting. Ironically this is about the ONLY thing that he has continually talked about as hurting. It is really sad.

Me and Dr. Grayson gear up to take care of these feet.

And I get my gear on to not infect the wound- 

The pads are to keep pressure off, the band aid is so that Tyler will stop crying. I then make a magic spell up and put on magic socks to keep Tyler from pulling this stuff off. It rarely works but it is a start. 

Last week we got Tyler's foot clear! We were down to a PIN HOLE and we were down to using an emery board on his feet only. No edges were needing to be cut. Thursday we were discharged and we were to call if anything came up or we needed a shave in order to look even better.

Today.......... WE HAD TO CALL!!!!

To be continued.......................