6-22 and 23-07
Miles is back into his routine and as much back to "normal" as one can be in a full body cast. Lolo and Lola have enjoyed playing with him and his toys. Everyone is amused by the television programs Miles enjoys (Nascar, the Backyardigans, the Upside Down Show among others).
Zoe came to visit with her parents and Miles enjoyed the pink feather boa dance the best. He didn't seem to mind at all being covered in pink feathers! Even though he slept through the first part of the visit, he was delighted to wake up to an energetic guest.
On a walk with Lolo
Zoe with Miles
6 - 20 and 21-07 Wednesday and Thursday
Yesterday was a changing of the guard as Grandmother went home and Lolo and Lola arrived. Typically, Miles slept through the transition! He has enjoyed the attention from Lolo and Lola, but I do think that we was looking for Grandmother the rest of yesterday.
We are having mostly happier awake time with lots of smiles. Every now and then, he gets frustrated and angry that he is still in the cast and this is to be expected. He has not had pain medication for four days, all good signs.
Today Miles had his first four-legged visitor. Bella came with her people and Miles really enjoyed the visit. He especially liked having his feet sniffed!
We've had some moderate success on the "stinky boy" front. I have two words, Odor Eaters. Who knew that shoe inserts could be so useful? We've quartered some old cloth diapers to fill out Miles' diaper and keep him from missing the padded part. He has a cotton codpiece, but it is working. We've also had some success with the adult incontinence pads at night. No major accidents since we started these procedures.
Lastly, we heard that Miles' cousins have finally seen the blog. Their comment when they saw the pictures: "Oh my goodness, they glued his legs together!" How could you not love that! I bet that is how he feels most days.
Annie
Note the Odor Eaters!
6-17 through 19-07
The past couple of days have been filled with up and down moments. We are working through the challenges of the spica cast and dealing with all the things that no one told us about working with Miles in the cast.
First, before I go into those items... It has been pointed out to me by my father (on Father's Day) that we did not review why Miles had the hip surgery in the blog. For those of you who don't know (or don't remember), Miles' left hip was out of alignment. His left hip socket formed higher than his right, and the femur has been slowly moving out of alignment from the joint because of his muscle tone. When he gets excited, Miles tends to extend his extremities and thus has been gradually pulling his ball joint from the socket...not to mention that since he does not stand on his own (like typically developing/walking kids his age), he was unable to put weight on his joint helping it to seat in the the socket. This has been starting to cause problems for sitting, walking, bike riding, etc. Rather than have the ball joint actually dislocate from the socket, we elected to have the surgery now to fix the problem and to ward off future problems. His left hip socket was re-aligned with the right in his pelvis and both the top of his right and left leg were angled into his hip sockets (by cutting into the bone) to keep them from working their way out. The right leg was done so that it would match the left. So, that's what was done and why it was done. It helps that we chose to do it at the beginning of the summer so that he "should" be mostly healed for the start of school in August.
About working with the cast... It has been really challenging to find good positions for Miles as well as good ways to transport him. We've solved some of the transportation issues (the wagon is still good!), but we were still challenged by positioning him throughout the day. We pulled out his bath seat and found that we can get that set up so it is like his own personal recliner in the family room. Pillows on the couch and/or floor just were not as supportive and he sank down way too much. We still put him on the floor for train watching and other positions on his sides, and a yoga mat provides a much more comfortable non-slip surface than most other things. Two positional problems solved.
Now, on to what no one tells you on any website about spica casts (do a Google search for yourself). No matter how careful you are, there are going to be leak issues if your child is non-verbal and incontinent like ours. Now that his swelling has gone down, there is no way to "tuck in" the diapers to have a secure fit. This is what the websites tell you to try: two diapers, a small one inside a big one; incontinence pads or sanitary napkins inside the diaper; securely tucking in the diapers; changing diapers every two hours; and even using plastic wrap to protect the cast. The cast is lined on the inside with cotton. Once there has been a leak or if there are any gauze pads left in from surgery, there is a "wicking effect" that just sucks urine into the inside of the cast. The end result is that your child smells like a cross between a cat litter box and the men's restroom at a sports venue. None of the sites tell you how to deal with this. We've tried everything that has been suggested. Miles, creative child that he is, still manages to avoid the inside of the diaper entirely and get to the outside somehow. If we come up with solutions, we will post it here. Perhaps some parent out there who will have a child placed a spica cast will benefit from our challenges. We take small comfort in the fact that we're not the only ones to go through this...unfortunately, it's a little different for each child.
Meanwhile, despite the fact that he stinks, Miles is coping with being trapped. He has been playing with toys and having some quality awake time. His sleep schedule is quite off. He is not taking the pain medication regularly, so we think that is great. He still naps quite a bit, but that could be partly healing and partly boredom. The good news is that on July 9th at 2:00 pm, he has his follow-up appointment. This cast is coming off that day. He'll have an x-ray of his pelvis (maybe we could post it in the blog!). He may or may not get a new cast, but I can assure you we will not be saving this one!
No other significant news. There will be a passing of the torch between my mom and Lola and Lolo tomorrow.|
Annie
Miles' bath seat as lounge chair.
6-14 & 15-07 Thursday and Friday
These past two days have been mostly about getting back into a routine and adjusting to moving Miles around the house. He has been doing great and is returning back to his same old self. Each day he has less sleepy time and more wakeful Miles time including lots of smiles and even laughing. He has really enjoyed his train and other toys and videos. It certainly doesn't hurt that there is lots of car racing on television right now!
The main challenge has been moving Miles from place to place. Wil can move him by himself, brawny man that he is, but I need a helper. Mom and I have been able to move him from the sofa to the living room and back, and it must be a pretty funny sight (she has one end and I have the other)! We have a lift (photo below), but the mesh seat doesn't support his head very well. In addition, the lift does not work well for traveling distances longer than half the room. It quickly becomes a swing which is not very safe! We have also found that the recline wheelchair which worked just fine in the hospital does not work so well on pavement. Miles kept slipping down since there are no safety belts. This is not the ideal situation. We are exploring other options including wagons...
Miles had several visitors on Friday. Rachel and Ellie's parents stopped by with the coolest dino balloon ever (and their wagon for a test drive!). Miles' physical therapist stopped by and talked horses, cats, dogs and bunnies. One of my former coworkers also stopped by, and Miles flirted a bit before taking a pretty serious nap, and then woke up and flirted some more. The sticker collection on his cast is slowing growing!
Miles upper body movement is making up for what his lower body can't currently do. He is moving BOTH of his arms much more than he normally does and waaaaay over his head, which he also will not normally do. So, he may come out of this with more upper body strength which could be a good or a bad thing. We'll see.
All in all, two good days.
Annie
The sling seat for the lift. This was before his head slipped off the top end...
6-13-07 Wednesday
Last night, right after we posted, the doc stopped by and let us know that we were on the way home. YAY! We were offered the chance to go home last night, but after 9 pm we didn't think that was such a good idea... We let the doctor put the first sticker on Miles' cast and he found the one that said "doctor." Imagine that!
This morning, after IV removal, discharge paperwork, etc. we were on the way home! My mom arrived at 9 am just in time for discharge. After strapping Miles into the back seat, we were at the house by 9:30 and Miles was exhausted by all the moving around. We spent the rest of the day changing his position every two hours. He would be awake some of the time, but spent most of the day napping. We do think he is happy being home.
You can see the pictures below for some of the positions we tried. We are finding that it takes two of us to move him comfortably. More amusing positions are sure to follow.
Annie
Miles' first sticker from his doctor. Note how it says "doctor."
Strapped into his "carseat." All the belts keep him secure, really.
In trying out different positions, we attempted vertical via bungees. Think Cirque de Soleil! He can't bear weight on his feet, so we may have to use smaller bungees.
Hanging out on the couch. Yes, this is a doctor approved position!
Finally getting to see his train.
6-11-07 Monday
Today was a day of visitors. The rest of Miles' therapists (ALL of them!) trooped over from the PRC for lunch today as well as his speech therapist who came in on her day off. After a shot of morphine, Miles was even the gracious host and full of smiles for everyone. He managed to stay awake for about an hour, then back to sleep. He was awake and happy several more times during the day. It is very nice to see the return of Miles' personality and he is even talking a little.
Since his epidural was removed, the IV morphine has been increased in dose and frequency to compensate. He is also taking Tylenol-3, so that could be why he's smiling so much... His catheter was also removed (yay!) and now has been outfitted with a diaper. He's sporting his new *red* outer cast and we have all the necessary equipment to go home. While he was having his cast adjusted to its final fit, Miles decided that he does not like the cast cutting saw. He will have one final confrontation with his new arch nemesis, but that will be in about four weeks. Stay tuned for "Saw II."
Speaking of going home, the plan is to have him released tomorrow or Wednesday. If he can go without IV morphine, home we go. We have made arrangements for a hospital bed and a lift for home use (in and out of bed), all we have to do is make the call and they will be delivered. We have the recline wheelchair (it's in the bathroom here at the hospital—there just isn't space for it anywhere else!). Unfortunately, Miles didn't get his outer cast in time to take a trip around the floor in his new wheels. This is something to work on for tomorrow. We also have his harness for car travel. Harness is really the correct word for this and getting him into it the first time should prove interesting.
Miles is also tolerating food pretty well and is almost back up to his pre-surgery volume. It is a little harder since we can't sit him up. We are confident that this won't keep him here. We are waiting for some action on the bowel front. Nothing yet but this should prove to be an interesting experience.
Annie
Eyes are open... barely. 
The new red cast.
This is how the diaper works, for all of you that have been curious. We also have a strap to hold it in place. The strap is similar to the old school sanitary pad belts of old, but we don't think Miles will mind.
6-10-07 Sunday
Miles spent most of today sleeping. We saw his eyes for almost a minute, but then, back to sleep he went. He is slowly being weaned off of his pain medication—his epidural meds are being decreased and he went five hours between morphine doses. He also started taking some food by tube. One of the good points of having a feeding tube, Miles can "eat" as he sleeps. His GI tract is working just fine, he's been a little noisy...
Tomorrow will be a big day. He will finally get his catheter out. He will also get his epidural removed. I remember what that was like. The staff here at Children's don't know as much about epidurals as they do over at Women's. I wonder why that is. :^) He will get his final cast and we have to choose a color, although tie die is out. Big bonus, he will be getting out of bed. They are setting us up with a recline wheelchair, and we may even be able to roll him outside for a bit. Just imagine the tan lines!
So, while today was a slow day, we are making some progress toward recovery. I'll be on my own tomorrow as Wil heads back to the office, thus I have first choice on sleeping at home in my own bed. We are expecting a visit from Miles' speech therapist some time tomorrow, so I hope that both he and I are alert and ready for visitors. Miles has already slept through visits from Paula's mom, his godparents and Zoe, and his physical therapist.
Annie
What we saw most of today...
Peyton Manning and his wife generously donated funds for four rooms at Children's. Unfortunately we didn't get one of those Colts themed rooms! I'm sitting on the famous couch that pulls out into an semi-comfortable bed. (Think camp!)
6-9-07 Saturday
According to Wil, Miles was restless last night, but slept on and off until about 4 am. Miles was awake when I arrived at 6:30 am Sunday, but not very happy about it.
The day was again all about pain management for Miles. We have found that the morphine every 4 hours (he's allowed to have it every 2) along with valium and his epidural has worked well for him. We'll see if we can't have larger gaps between the morphine tomorrow. He had a slight fever today, but that has gone down. He's also had some swelling, a little in his right foot and then quite a bit in his "nether regions." We have been assured that this will go down, but maybe not until Monday.
He spent most of the day sleeping comfortably—this is good. The awake time was not as pleasant an experience since that was when he seemed to be in the most pain. He did seem better as the day went on.
No other news to report. Hanging out in a hospital room is not very much fun for any of us, but the staff at the hospital has been superb. Our anticipated timeline is that his epidural will come out Monday and he will get his final cast on Monday as well. We should be able to go home either Tuesday or Wednesday depending on how he does with the pain management, swelling, fever, etc. Things are looking pretty good. Tomorrow should be much of the same as today, perhaps with some more wakeful time and Miles continuing the path of returning to his same old self.
Updates to follow.
Annie
The full (temporary) cast.
Some friends from home.
Looking a bit groggy.
Using the nebulizer to cool off Miles' back.
Miles with his first kitty visitor, and, once again, he slept through it.
Miles in his new big, humongous wagon. Thanks Grandmother!
