Update

There has not been much time to do anything since we made it home with Hayden and his casts.  There was not much sleeping by him, so there wasn't much sleeping for me either.  He started school with his casts on and I think it has been a good distraction.  We are very thankful that he has a nurse going with him.  He will definitely get more out of school right from the beginning with someone he knows and knows him.   I couldn't have imagined sending him to school with his casts on otherwise. 

Hayden had a follow-up orthopedic appt mid September and also for cast removal.  His legs looked very good and much to our surprise weren't stinky at all.  That made the car ride home more pleasant than we thought it would be.  Dr. Sundberg was able to abduct his left hip more than prior to the adductor release but not as much as he can on the right hip.  His hip x-ray also showed moderate sublexion of the left hip.  No need for further surgery at this time, but if it gets worse, he will likely need femoral osteotomies and possibly a pelvic osteotomy on the left side.  This of course means body cast...boo!!! In the meantime, there will be a lot of stretching and time in the stander.  We will do what we can to get him to sleep with both knee immobilizers and the adductor pillow for as long as we can to prevent this even though it doesn't seem likely at this point.  He keeps bringing it up, so in my experience this means it is almost certain to happen.  Although, we are talking about Hayden, so you never know.

Nick is having a great time in school and has a best buddy, Andrew.  From what we hear at school and from what Nicholas tells us, they have a great time together.  How wonderful for him to get to play with kids who can play with him the way he plays. 

Out of the Hospital

Since Hayden lucked out and didn't need a body cast, he was still able to fit in his carseat.  We had to prop up his legs to support the cast. Luckily, we had enough blankets, pillows, and bags to make his trip as comfortable as possible.  Grandma and I must have done a good job.  He was asleep as soon as we were on the interstate...or, maybe it was just the pain meds ; )

                                            


Thankfully, Grandma and Grandpa Smith live half way between St. Paul and our house. It was the perfect place to stop and give Hayden a break.  When we got there, we made a very soft bed for him on the floor.  He is completely exhausted from getting no sleep in the hospital.  He was having muscle spasms all night because his hamstrings aren't used to being stretched out.  It wasn't until about 4am that another medicine was added to help with the spasms.  Only then did he settle down.  I have never seen him so upset in my life.  I just wanted to cry with him.  This was the first time in his life that I was not able to do anything to console him. 

 The plan is still to send him to school as soon as he is able.  If he gets enough rest this weekend, we will send him on Monday.  Hopefully, the distraction will do him some good.  I still have had barely any sleep, so I am going to get to bed while all is quiet. 

Sleep Study Results

Dr. Garcia stopped by tonight to discuss the results of Hayden's sleep study. I was expecting him to tell us that Hayden has obstructive sleep apnea and needs to have his tonsils and adnoids out. Since this is Hayden, one must expect the unexpected. He has central sleep apnea--not obstructive. I had never heard of central sleep apnea and still wish I hadn't. It is not comforting to know that Hayden's brain forgets to tell him to breathe when he sleeps. Dr. Garcia was quick to reassure he that he wasn't going to suddenly pass away in his sleep, but this is still unsettling news.


Hayden had 13 cental apneas, 2 obstructive hypopneas, and 2 breathing related arousals. There were sharp spike and wave patters seen on the EEG mostly in the right occipital region. This is normal on his EEG due to his epilepsy. He had slightly higher than normal periodic limb movements. Which he said we may want to look into treatment for, but was not urgent. He has so much going on that I am not sure we will be checking this out too soon. His apneas averaged 12 seconds with 16 desaturations (oxygen less than 90%). One desaturation was all the way down to 70%. He recovered from the desaturatios quickly, so there is no concern there.


Since Hayden has done so well to date, especially with sedated procedures, no further follow up with the sleep health doctor is needed. Thank goodness! As nice as Dr. Garcia is, I just don't want to add any more doctors to Hayden extensive list.

Adductor Release/Casts

Grandma and I have a very grumpy boy on our hands. He has every right to be ticked off, but I have never seen him this upset after surgery before and my heart is breaking more than I thought it would. He isn't sleeping as I had hoped. It's more cat napping than anything. I don't know if he is in pain from surgery or if he is just mad that he can't move his legs. I am sure it is some combination of the two. The nurses are doing a good job of keeping his pain meds on schedule. How I wish he could tell me so I would know what to do. He's keeping us on our toes as we try to figure out new ways to comfort him. Most of the time, his favorite toy, his dog Scout quiets him down by singing and talking to him. We were able to download Hayden's name into the dog so that Scout can use Hayden's name in songs and when he talks. It is completely adorable and I LOVE, LOVE, LOVE Scout! When that doesn't work, I can usually calm him down by reciting his favorite book, How Do Dinosaurs Love their Cats? I made sure to memorize that book before we left Iowa. I just hope the book and Scout can get him though this. Momma isn't that creative, especially with very little sleep.

Thankfully, surgery went well and all the surgeon had to do at this time was to cut his left adductor muscle (groin muscle). No bone shaving, so no body (Spica) cast, yay! While he is sleeping, I am going to close my eyes,too. Hopefully, he will finally get some good sleep. For the next 3 weeks, Hayden's going to have these big old green legs...

Nick had a great time on his first day of school! Can't wait to see him this weekend to hear all about it.

Nick's First Day of School

Sitting in the a hospital waiting room in Minnesota was not what we were supposed to be doing today. Today is the first day of preschool. For months I had been preparing myself for a day of sitting in my cubicle at work trying not to cry because I was missing the boys' very first day of school. There's no vacation time to use because I have to save every minute of it for doctor's appointments, hospital stays, and school meetings. Grandma Smith made the trip to Minnesota with us so Tony could take Nick to his first day of preschool. Hayden has a rough night. I don't think he could sleep covered in wires from head to toe. He was up off and on all the entire night so I am hoping that they were able to get a good study.

Hayden is in surgery right now. We will find out what they had to do and what cast he will be in when they are done. Thankfully, Tony sent some pictures of Nick getting ready for school to give us a distraction.

Here's Nick hamming it up for the camera before his first day of preschool.

I bet he is having the time of his life right now...good for him! He deserves to have fun without worrying about Hayden or one of us telling him he needs to wait a minute so we can finish feeding Hayden. I can't wait to hear about his day! I can't wait until my other sweet boys gets out of surgery! Thankfully, my wonderful mother-in-law is here with me to help pass the time. Otherwise, I would be worrying and thinking about all of the things that could possibly go wrong. I know that this is his 14th surgery, but I can't help it. While we are used to the routine of Hayden having surgery and being put under for Botox and Phenol injections and for eye exams, it really hasn't gotten any easier.

Will update later once Hayden is out of surgery and we are settled into a room.

Sleep Study

Tomorrow is Hayden's hip surgery, so we arrived at Gillette tonight for a sleep study. We checked in at 6pm and it took about an hour and a half to get all settled in our room and Hayden all hooked up. It took him a while to settle down and fall asleep which was surprising since we didn't give him a nap today in the hope that it would help him sleep better. I am expecting little to no sleep tomorrow night, so I am going to try to get a little sleep while Hayden is.

Here he is all hooked up for his sleep study...

Proud Moment/Sad Moment

While I was upstairs changing the laundry around, I heard Hayden begin to gag himself. I rushed downstairs (too late, of course) to find Nicholas holding a blanket in front of Hayden for him to vomit in. When I picked Hayden up to change his shirt, Nicholas pulled Hayden's blue feeding seat up off of its base, took the blanket and wiped the vomit up from the base of the feeding seat. I praised Nicholas for doing such a great job of taking care of his brother, but on the inside I was sad that he even thought of doing that. Hayden's vomiting has become such a part of our lives, that even a 3 yr old stops watching the Backyardigans to take care of his big brother--not something a 3 yr old should be doing, but something to be very proud of. Still, I am in tears by Nick's actions. We don't and never will expect Nick to take care of Hayden, and we certainly don't want him to feel obligated to. If he chooses to, then that would be wonderful. I just pray that we never make him feel that we expect him to take care of Hayden.

We are very conscious of trying to make Nick's life as normal as we possibly can. Although, we know that things won't always work out that way, we will do our best. It's so hard for us when we feel as though we have to choose one child over the other. Whenever I have to miss out on something of Nick's because I can't take any time off of work since it is all reserved for Hayden's appointments and hospital stays, it breaks my heart. No one should feel as though he/she has to choose one child over the other. Even though that is NOT really what you are doing, you can't help but be upset by having to "choose" every time you have to do it. I know one day, Nicholas will understand this on some level and know that we never chose Hayden over him. Hayden just needed us more.

What Nicholas did tonight was not a surprise. He has always been very sweet and thoughtful when it comes to Hayden. He is great at making sure he has toys to play with and gives him the biggest hugs each night before bed. Not only does Nicholas take great care of his brother, he likes to take care of mom and dad. He is always sharing his snacks with us and making sure we have pillows and blankets when we snuggle up to watch one of his favorite shows, "Max and Ruby." We are proud to be parents to such a caring boy.