Monday, August 29, 2011

Getting ready for school.....


Who would have thought that getting ready for school would include being able to go to the bathroom on your own and climbing the bus steps? Sam is mostly scooting around in the house. He did walk quite a bit with the walker this morning at the park. I also see him starting to squat again while playing.

The hardest thing to gauge is pain. Last week he complained about taking meds at bedtime so I told him take it now and we will see how you do during the next day without meds. So Friday, Saturday and Sunday he was without pain meds. He seemed ok though kind of crabby. At bedtime Sunday, after spending the day at my sister's, he asked for pain meds at bed time. He slept better than he had the last couple of nights. This morning I didn't give him any. While we were at the park I asked several times if he was tired or had pain and he denied it each time. However at one point he crawled into a tube joining two play structures and sat there the longest time. We played a bit, like hid a seek through the holes and poking each other. He finally came out and I asked if he wanted to walk with his walker or to ride in the stroller. He chose the stroller. That seems to be an indication he is in pain, but he still denies it.

Hopefully over the next week he continues to strengthen and come school things will go fine. Friday we have a few appointments coming up: a DEXA scan, endocrinologist, and orthopedic nurse practitioner. The free T3 lab test came back elevated so I am waiting what this will mean. McCune-Albright Syndrome?

Wednesday, August 24, 2011

Wishing....



While we were at Wal-Mart, we met another family back to school shopping who had a child about Sam's age in a medical stroller made for a bigger kid. It also had points to tie it down in a bus. I came home and searched and I found the Otto Bock Eco-Mobility System at Adaptivemall.com. With the tie downs and a 5 point harness, it is about $950 though. I need to work out how to get this for Sam. Why I like it: 1. It is good size for Sam, going up to 100 lb so it should fit for a while. 2. It folds like an umbrella stroller so it will fit in our car, 3. It has tie down points so it can be used on busses. (school, feild trips)

Since finding this one, I found the Convaid Sport. It comes in orange, Sam's favorite color. However it starts around $2,800. Even more out of reach.




I Think Sam Is Finally Turning a Corner...

Today, he discovered he can walk. actually he was roughing around with Aric and Zoe and discovered he can stand on his knees. I then told him if he can do that he can walk. So he got up and tried. He is still very slow and walks with bent knees but it is walking. Just after that discovery, wwe went shopping for back to school supplies. i got him a size 1 pair of shoes. He rode in the stroller the whole time and by the time we left Wal-Mart it was 5.5 hours since the last pain med dose and I could see him getting worn out from the pain. After pain meds and we got home, he was in a much better mood and was scooting all over down stairs. So we are down to pain meds, ytlenol and oxycodone, three times a day.

I recieved appointment confirmation in the mail for Sam's 2 week wound check. It was scheduled for the first full day of school for Sam. :( I called Gillette and talked to Amanda and she did some calling around and got Sam's DEXA scan scheduled for 8:45 on Sept 2. His Endo appointment is stil 10:15 or so, both in St Paul and then go to Burnsville to see ortho NP at 12:40 or so. All on the same day and Sam can start school with out having to miss school the first week for appointments!

Monday, August 22, 2011

I Didn't Expect This.....

It is post op day 4. This whole thing has been more difficult than I anticipated. He is still needing pain medication. I am drained. Sam is refusing to walk. I was told to have him walk each day. He keeps his legs bent and will not stand up straight. Whines that we should have brought home a wheel chair. Meanwhile I am doing everything for him. He took a nap this morning about 2 hours after getting up then fell asleep about 6 pm, before dinner. Tomorrow we are supposed to meet his teacher. I hope I can convience him to go. I saved a DQ gift card back that we were given for a meal over the weekend that I will use to entice him for lunch afterwards with.

Friday, August 19, 2011

Home again!

We were finally released today. We had some really hard times since that last post. About 1 am Sam woke up in pain, lots of pain. Took some to get him to take meds but he finally did and fell back asleep. From then on we seemed on top of pain far as medicating goes. the other hard spots were PT. It was so hard and scary for him to get up and walk with the walker. The second PT we tried stairs and that was really hard for Sam. When we finally got him back to his wheel chair and were talking for a bit, he started to fall asleep. I put him in his bed and he slept for an hour and a half before we went home. he was so crabby this afternoon/early evening that I gave him to much medication before bed. He is on tylenol, valium, and oxycodone. The valium is 2 - 4 ml a dose, the oxy codone 2-3 ml. I gave him 4 ml of both. I wanted him to sleep so I could and messed the doeses up. I called the hospital after I figured out what I did and they said it was ok, just mabey wait an extra hour to give him his next dose and plan on 3 ml of both valium and oxycodone so I don't mix it up again. I need some sleep. I hate that I have to give my baby such strong meds.

Thursday, August 18, 2011

7th Surgery

















So it is done, now the healing. Today started well. We left about a half hour before I wanted to just because Sam was ready to go! Turns out it was a good thing because the parking ramp was so full we ended up parking up on F had to take Region's elevator down to D go out and over to Gillett's entrance.




We finally got in, registered and over to imaging for a couple of x-rays of Sam's back. Then down to 3 for surgery. Signed a few forms. Waited a few minutes before being called back. This is our first surgery with Gilette's new surgical space opened. It is so nice!! There is more room to manuver strollers and wheel chairs around. There is also more privacy in the pre surgical and PACU spaces. It just looks more beautiful, calming and has cool interactive technology to play with!




Our friend Kay had even more problems parking and was a little late. She met up with us while we were in the pre surgurey area. We also met with the anesthia doctors. When discussing pain options I did nix the idea of caudal block. We just operated on Sam's brain 3 months ago and he had the chemical menegitis, I didn't want to mess with CNS at all. They knew all this too and were fine using other pain control methods. We also decided to try versed before surgery to see if it helps that last minute panic as Sam goes under.




Dr Healy, who did 3 or 4 surgeries today, came by too. he had to sign Sam's legs at all the points he was going to cut. Sam's back x-rays looked fine and at this point is just a wait and see if more pain develops kind of thing. Right now it is real minor pain, but with all the FD on the MRI and spondylothesis on another x-ray I wanted to check it. There is a small chance that removing the IM nails could cause a fracture. He would be doing an x ray to check after surgery is all done.




Finally everything was ready. Sam got his versed. We were taken to OR2. Sam was placed on the table. Orange lip gloss placed in his mask and slowly it was put on his face. He still didn't like the gas, but not as bad as last time. He was told to blow it away. Sam did put up a last minute stuggle. Trying to pull the mask away and squirm away in general, not real vigerous but still had to hold his hands down. He finally was out. I kissed him and was taken back to the pre surgical area.




Kay and I took our things up to Sam's room on what is now called Orthepedic/Surgical floor, formerly 4 west. We then went to the Ginko cafe to eat. When we were about done I got the first page. The plate was almost all out things were going well. We took my cooler back to Sam's room and headed back to the surgical waiting area on 3. Another kudos to gillette's remodel here. This waiting area is so spacious compared to the last one and filled with window's where there were none before. It makes such a difference to the emotional mind set of a waiting parent to have so much natural light!




Surgery was finally finished and Dr. Healy came out. Things went well, no mishaps. It was another half hour or so before they came to get me. I said good bye to Kay at this time. It was so good to have someone to wait with me and talk with. It turns out a neighbor of hers is someone I use to work with long time ago and we know a lot of the same people.




The nurses are real good at coming to get a parent and not letting on that thier child is upset. The nurse brings it up on the way back to the PACU, but very calmly. I get back there to find three people surrounding Sam's bed and he is crying in pain. The morphine was not working this time. After some discussion and calling in the anesthia doctor another medication was ordered and that helped take the pain off enough to let him be distracted with a movie. Finally calmed down he was able to get off of O2 so that we could go up to his room.




He was settled in his room and started on some sips of water. He quicly progressed to applesauce and pudding. This enabled him to get oral pain meds which are longer acting. And to Sam's delight also enabled him to get a dinner tray! He chose a turkey sandwhich.




Getting up to his room a settled also gave us time to skype home. Seeing his brother and sisters gave him such a big smile and really helped him. I think the others, or guys as Sam calls them collectivly, enjoyed it to. I know they called me several times though out the day asking when we could skype.




After dinner, the nurse and I got Sam into a wheelchair. We went down to the main clinic waiting area just as the dog show ended. Sam got to see all the dogs and collect a few more of thier cards. We then went to the new family room and played. he was thrilled to see an x-box! Though it was short lived compared to his normal like of video games. Played through a few more toys and I could see he was getting tired. I got some hot chocolate. The new family room comes with a nice kitchen area with a Flavia machine. After skyping home one more time and seeing Daddy, we settled in for the night.




Over all Sam is having more pain than I anticipated. It is controlled fairly well but I can see he is not himself. About 15 minutes before his bedtime dose of pain meds he was uncomfortable and wimpering with the pain coming back. The insicsion on his right leg also bled some. The nurse wasn't alarmed, just noted it and put an ice pack on it. That has never happened before. Mabey a little seeping but not lots of blood under the tagaderm.




It has been a long day and I need to get to bed. Sorry for the book. I will also proof it after we get home.


Oh two more things. On the way up to the room from the PACU the nurse shared with me that Sam had told her when he first woke up that this place was horrible! Amusing considering how excited he was to get here. This morning, I had one of those anxiety dreams...Sam was eating food when he was supposed to be NPO, I had to get Ella someplace else for a a procedure of some kind and it was via plane and we were going to be late. the airport had signs to the gates made with masking tape on the wall. All the while I was tending to Ella, i wasn't paying attention to Sam and he was not prepared to surgery. Anxiety dreams!











God is here...



Yesterday (Wednesday 8/17) I was in quite a funk all day. I was anxious about surgery and the risk for fracture following and just where this disease is going to take us in the future in general. Also I had read the account of a friend's goddaughter, a preemie born 2 weeks ago at 25 weeks gestation, dieing. that brought up lots of emotions for me. Reading of the parent's and my friend's grief and remembering my own experience 11 years ago losing Zachariah at 21 weeks. I managed to get the kids to the park for a while and do a few things around the house. I also made it to church. The girls had an activity. Sam sat with me in the service. We had parked next to a vehicle with someone inside. We all got out at the same time and I realized it was Miss Deb and her husband. Miss Deb is an aid who was in Sam's public school special ed preschool program last year. I knew they went to our church but we had not been able to see much of each other over the summer. Talked a few minutes walking in to the church about kindergarten coming up, and the next day's surgery. Got into church and we went separate ways. When it came time to find a seat I let Sam pick where we would sit. He kind of zig-zaged back and forth and finally sat next to Miss Deb and her husband. After the service was over she asked if she could pray for Sam, he said yes and I was so.... awe struck, blown away, I don't know how to describe it... just comforted by her prayer, her wisdom, her love for Sam, and me too! She gave us each a big hug afterwords. We also met with someone from the prayer team. Just to be so covered in prayer. I don't know if I can count the number of people across the nation praying for us today. Then driving to the hospital this morning it really struck me Philippians 4 :6&7 is so real. The peace of God, which passes all understanding was with me today. Even talking with Dr. Healy about Sam's disease and long term outlook. There is no way to know what will happen but that's OK, God know and understands.

Ready and waiting....

Well bags are packed, except a few last minute things. Sam is up and playing on the computer. After having his orange jello for breakfast!

Philippians 4:6 & 7
Do not be anxious about anything, but in every situation, with prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.

Tuesday, August 16, 2011

Ready for yet another surgery.....



Almost, I still need to pack. We report 10:30 Thursday morning. It is supposed to start at noon and last 1 hour 45 min.


Today Sam saw the nuerologist. Over all that went well and he only needs to go back if something comes up. He is doing well since surgery and hopefully the headaches continue to diminish. The nuerologist was kind of concerned that he had accidents with some of his headaches and questioned me closely about the possibility of siezures. I don't feel that is happening.


This evening Sam had his H&P, the pre-op appointment. Other then waiting it went well and he is cleared for surgery. We also did the blood draw for the endo appointment on Sept. 2. He didn't like that part!


I'd like to think that this will be a breeze and barely a blip in the scheme of surgeries for Sam. There is a part of me that is still scared though. It never gets easy seeing your child go under anesthia. I think the emergency situations are almost easier to deal with then this waiting. I have decided to accept help from my church in the way of meals afterwards and someone to come with me to the hospital. I'd still like to get skype set up with our other computer, but not sure that will happen. Sam really misses his siblings while at the hospital.


There are 3 weeks until school starts. But i'm feeling like this is the end of summer. Finances didn't work out like I hoped so I couldn't get all the camping gear we needed to do that. With the help of friends I was able to take the kids to both water parks near us this summer. They like the Cascade Bay in Eagan better. Sam had a blast on the slide. In the picture above, you can barely Sam's head poking above the bottom of the slide. By then end of the night, he was crawling up the stairs to the slide he was so tired. He still wanted to keep going though until they kicked up out!




Friday, August 12, 2011

Miracle Treat Day 2011













Yesterday was Miracle Treat Day. You buy a Blizzard from DQ and they make a donation to Childrens Miracle Network. The hospital, Gillette Children's Specialty Healthcare, Sam goes to for everything is part of the network and recieves funding from them. We enjoyed our Blizzards!

Monday, August 8, 2011

More tracking...

The last headache bout last week lasted three consecutive days. I think I posted on day two I believe. This morning he has had another headache and accident, making it difficult to do what he wants. He was kind of whimpering as he tried to go take a bath. A chiari mom friend from facebook assures me that it takes time to heal from the surgery. Her son took a year to become headache free.

Amazon

On recommendation of a friend, I have applied and been approved for Amazon affiliate program. If you could clink on an Amazon link from here before shopping, I will get a small percentage of each purchase. I hope this could help pay for some parking, gas and food for all the trips we have to make to St. Paul to see the amazing doctors at Gillette.

Little Guy with a Big Story is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to amazon dot com.

Thank you for your support in any way you can offer it!

Tuesday, August 2, 2011

More headaches.....

Sam had a headache yesterday and again today. These look more like what he had before surgery where he wants to lay down and restricts his own activities. He was even doing more of the sitting upside down on the couch again. It is one of those things I didn't realize he was not doing any more until I saw him doing it today. Yesterday he had not been outside or doing much before hand. I wanted to go get his blood drawn for the GNAS1 gene test and delayed going for about three hours for Sam's headache to pass and a storm to pass. Today he has had three urine accidents. He went out to a park for a while with Rose and the girls and came home soaked in sweat. Now at bedtime his head hurts. :( He had daddy carry him upstairs and even took medicine before bed for the headache.

I also want to give a shout out to Kelly, the nurse at Gillette Burnsville who gave Sam the lidocane cream. Sam was scared when the poke was made then was pleasantly surprised that it didn't hurt. She also got us set up for next time so the blood draw in preparation for his endo appt should go well too.