Differences in hospitals

So the bills are processed and it looks like it cost $460 more to have the cast applied in B.oston vs C.incinnati. The savings is that I didn't need a plane ticket, rental car and hotel room but I still wasn't expecting such a difference in the cost. Both were put on with the deductible for the year being nice and fresh so it is a fair comparison (Daddy started his new job 3 weeks before the first cast was applied). I was a bit worried when I saw that B had submitted more than twice the amount C did in claims. The total bill for us comes to $1320. Yeouch! Looks like we will be hitting our out of pocket max for the year early this time. Sigh.

Infantile Scoliosis Support

I would like to talk for a moment about an extraordinary woman, Heather, from the infantile scoliosis outreach program. She took her experience and her daughter's suffering and made it her mission to help others. Heather was a lifeline to be following diagnosis and following the issues we had with the first and third cast. Thank you so much Heather.

ISOP can be found here: http://www.infantilescoliosis.org/

Clothing tips while in cast

Now that we've experienced a strapless cast for a week I need to change my clothing tips. When there were straps in the way it was very hard to get a onesie on since the straps were up to her ears. I gave up on them all together. I figured it didn't matter since the cast seems pretty warm so why add another layer. Since the straps were cut off E's shirts would catch in slide the cast at the top and get all stuffed inside leaving her belly exposed. To solve this problem we are using tank top type onesies. This prevents her shirts from getting all up in the cast. I've found that her out of cast size fits for the onesie. We still need to size up on her shirts. So she takes an 18mo out of cast and an 18mo onesie with a 24mo shirt in cast.

Next time we need to remember to bring a smaller change of clothes to the cast removal. At her last removal we only had her in cast sized clothes and the poor kid looked like a deflated balloon once we dressed her to leave :)

deja vu

We were back at the pedi today. It looks like E has a suspected repeat of the infection from the new years. This time she won't lose a fingernail at least but it is more antibiotics for poor little E while we wait for the cultures to come back. In the last 7 days we've been to the pedi twice and children's 3 times. That is 5 hospital and doctor visits in 7 days. We are all exhausted. Through everything Big Sis has been on the best behavior you can expect from a 3.5 year old. I think all of this has impacted her because she requested a doctor kit and has been performing check ups on everyone in the house since I brought it home this afternoon. Her new ambition is to be a ballerina princess doctor.

Strapless

We are back from Boston and I have to say they could not have been nicer or more apologetic about the situation. That smoothed things over some. They even gave us free parking. I have trust issues with MDs to begin with because of how poorly I've been treated in the past including fertility "specialists" who made me so sick I could barely function to say the least about that. A bad cast can happen to anyone. That being said I did the math and we spent 8 HOURS driving to and from Boston this week. Once was due to rush hour where we had to take Rt. 9 all the way to Framingham. Anyone familiar knows that is not desirable! I met a nice Dad in the lobby today which reminds me how lucky we've been. I must be mindful and grateful. We caught her condition early and she is one of the lucky ones that may be fully cured without invasive surgery.

The straps are gone. Poor E cries as soon as she hears a cast saw now. I repetaled at home as best I could. They cut the neck of her shirt in two in the OR from best we can tell. I am not sure why so under her chin there is no shirt protecting a copious amount of cotton. I wouldn't trust myself with that but a BABY that can drool or spill milk or what happened a few weeks ago with vomit... that would RUIN this cast. I fully taped and duct taped it. I really, really don't like how they petal in Boston. Perhaps it is because of what I am used to but I was able to pad out her cast better with the previous too.

Some good things I can say about Boston. With every cast trimming they made sure to have our ortho stop by and see E. This didn't happen when we needed serious trimming in Cincy. Also the ortho in Boston has made sure to personally call me when there have been issues and though at times he has come off as arrogant at times he has made a point of personally apologizing for this cast as well as the wait we had when we got the first cast cut off.

Due to the weird timing today I got to hang out with E and Big Sis while Daddy took a telecon in the lobby of the hospital. We played on the playground and then went in to peruse the gift shop, watch the kinetic sculpture and say hi to the tropical fish. E was so happy to be able to turn her head side to side again :)

Big Sis:


In the carseat with no obnoxious straps!


Monster cast!!!!


The reason tape is needed. Mmmmmm this cast is such a tasty teething toy!

Strap Removal

Got the call and we are going in today to have the straps removed. This should be interesting. I am just happy I didn't waste time duct taping the cast this week. There will be more pictures to come of the new look to E's cast. The doctor did apologize. I tried to be understanding as best I can but the sores are forming on her cheek/face and I don't want her scarred for life. I am going to look into our options. He is moving up the cast change so it would need to be done by a different doctor since he will be away during those weeks. Do we go with that person or go to Cincy or try something else? I don't know. I do wish this didn't have toc be so damned hard. It is one thing making a bad decisions for myself and me ending up with sores but it kills me to have my baby end up like this. It is just good we caught it early.

upset

We have had two previous casts for a total of 14 weeks. We have never had skin issues. We never had anything break on a cast. In the first 8 hours of cast 3 the strap broke. The straps I noted were really close in to her head. I think the carseat broke the strap or holding E to breastfeed her. Now she is getting sores on her head because of these straps. Straps which on Wednesday the ortho said she didn't really need. The big question is why he made a cast with straps if she didn't need it. I am looking into our options. At this point travel is back in the picture. I want to see if we can get in at a Shriners within driving distance (Erie or Philly). Philly would be near to family so no hotel or rental car but I know Erie does excellent casts. I am so upset. I did this for saving money and convenience and going to Boston over and over because this cast is not a good cast is NOT convenient or cost savings. It wastes everyone's time. Big Sis misses school, Daddy misses work and I have not slept a single good night since before this cast was put on because of worry. This is not a good situation.

Here are were the sores are starting after LESS THAN 4 DAYS.

Cast #3

Our third cast has been a bit of relearning because every hospital and ortho is different. I knew what to expect in Cincy but I just couldn't take more travel. It is very stressful to do alone and as E gets bigger wrestling her on and off planes is much more difficult. I think the worst time to travel with kids is from about 10 months old until about 2.5 years old because they want to be mobile and you can't really explain to them what the situation is. By 2.5 years we should be able to bribe and distract better.

Our first obstacle was the snowstorm. Boston did a terrible job at snow removal. Some places you had to use the oncoming lane because there was no lane. In that respect I was more than happy to let Daddy do all the driving. We arrived at the hospital a little bit after 6am and I took E up to day surgery. E's hospital gown made me laugh because it was suns that were throwing up and pooping rainbows. Kind of creepy actually. This time I got to stay with E as they put her to sleep and it was heartbreaking. Basically it sucks either way you do it so I have no good advice there.

I met up with Daddy and Big Sis in the waiting room. Big Sis was excited because the nurses had given us a mylar princess balloon during the wait in day surgery. In my exhaustion I forgot to pack the ipad or even a coloring book so a trip down to the gift shop was in order. Major Mommy fail right. Thankfully it was correctable. We waited and waited and waited and I swear I was finishing getting that ulcer that must have started with the last cast. Finally a liaison came to tell us that E was taking so long because the ortho was not happy with the first cast and decided to do a second. Once that was done the ortho came out to talk to us. This time there was no xray to share but I am ok with that. I want to limit radiation exposure as much as the Boston ortho wants to. The ulcer started back up when it seemed like we were waiting forever but it turns out that they petal casts while still under to avoid the screaming we had with the first cast. Someone should have told me in advance so I wouldn't have been so nervous! I specifically mentioned petaling of the cast as well but at least we know it for next time.

I was the only one allowed back to recover because of the flu restrictions Big Sis had to stay with Daddy. E was sleepy this time which is better than angry screaming for sure. I fed her, collected moleskin from the nurse, we signed the papers and we were on our way. This cast is much tighter in the waist than our previous casts but a different ortho is a different style. I dislike how Boston petals casts. They put the moleskin stuck over the shirt not under it. That would probably be good for a big kid but when you have a kid that could get things like poop or vomit on their cast it is easier to clean without having to remove moleskin from fabric. I know this because of today's activities. (Side note: our recovery nurse was great).

At home E was sleepy and cranky for the rest of the day and her voice/cry was hoarse from the breathing tube. Then in the evening I noticed one of the straps was no rigidly attached. Ug. So we went back today to have it looked at. The ortho said it doesn't matter. I wish if it didn't matter that he didn't make a cast with straps! Apparently there is a lot of controversy over the strap vs no strap situation. So we are stuck with one broken strap (the other doesn't look too hot either) for the next 5 weeks and 4 days. We took that opportunity to get the cast trimmed on the bottom. The way it was on the bottom dug into E's chubby thighs and made diaper changing nearly impossible because we couldn't get the diaper up the back so she had plumber's crack. Not a good situation. It is much better now. All three casts have had to be trimmed on the bottom. They need to know that E gets around by scooting on her butt so if the cast digs then it will make a sore on her thigh for sure. She was also having trouble bending to pick things up. This was nothing like the first cast which was so long she couldn't sit at all. I am wondering if the cast tech forgot to trim that first one at all. After we trimmed it I switched the petaling to the type I like with the moleskin under the shirt. This way if I need to clean the shirt I can remove the moleskin more easily (it sticks like crazy to those darned shirts!).

I am going to work of a post of what liked better at each hospital because each had their pros and cons soon.

Vomiting Rainbows:




Recovery:


The width between my fingers is where the strap is not rigid:

snowed in...

Good thing we don't need to be anywhere until Monday. I will leave you with some pictures. E loving her bath time (too bad her baths are numbered. Only about 3 baths between now and May) and E playing with her first two casts. Yes I am creepy and keeping them at least until we move again. They removed all the padding and shirt so the gross part is gone. The pink is her first and the purple her second. E loving broccoli and snow as of 8AM.

Got the call

Changing hospitals everything is different with Cincy they schedule in advance and with Boston they call you the day before (or Friday before). I just got the call. We are on for Monday morning but if you look at the weather channel they would have you believe Boston is going to be buried in snow and swallowed by the Atlantic at the same time. It is coming down out there. The state of emergency is in place and only time will tell if show will go on. My major concern is E's bathing situation. I don't want the power to go out and for her to miss those last precious few baths. The plan for cast 3 to 4 is to only get a one night break due to our plans to take E to the beach for the first time. For those not in the know sand and water + cast = catastrophe. So right now we are in a winter wonderland that I hope doesn't turn into a snowmaggedon the likes of which we have not seen in a while.

Worst.Snowstorm.Ever

The good news is that we aren't traveling for this cast but we are in the cross hairs of the big bad snowstorm Nemo. Can I just say I think naming the winter storms is stupid and annoying. Why can't we just call it the blizzard of 13 like the old days? Anyway, I can't tell how much is hype and how much is real but we are in the process of trying to decide whether to hunker down here (half way between Worcester and Boston) or flee to family in NJ. E's upcoming cast is factoring in. We are supposed to report to Boston Children's on Monday at a time TBD. This storm already fouled up our family pictures which we had to have done this morning instead. I wanted them for E out of cast so that pretty much guaranteed a catastrophe this size right. I am hoping we got some amazing shots even if we seriously annoyed the lady working the entrance enforcing the no bags policy. Yes someone with a 1 year old REALLY NEEDS their diaper bag you psycho. Anyway... I am here having an ulcer eat through my stomach worrying over whether we will still have power by Saturday. It could be a long very cold weekend here.

Cast Removal

This time we were in and out fast! E's skin looks great. Actually they kept commenting on how good it looked. I was more pleased with her progress. Her back looks nearly straight to the naked eye. If you look really closely you can see there is still a little bit of a curve but the progress is amazing. I didn't expect as much because she has grown less than an inch in during this cast. Below I have a picture taken in September (over a month before her first cast) and a picture taken today. Mehta casting is truly a non-invasive cure (and miracle!).

E on 2/5/13 after 2 casts:

E in early 9/12:

The last day

This is our last ~24 hours in cast #2. I am less nervous for the removal of this cast than I was for the first. With the first cast I was worried that despite all of our efforts it may have done nothing to fix E's curve. Of course that was wasted worry because her scoliosis improved dramatically but I can't help myself. E hasn't grown as much in this cast (just under 1") so I don't expect as much correction. The casting flew by this time. My new worries are all about having a new doctor apply E's cast. It is almost like the first cast all over again. I know if it doesn't go well we can always go back to Cincy or try out Shriners. I've considered Shiners in Philly so that I can be with my family when we get casts changed but it requires travel.

One week out from cast #3 E is teething. She hasn't had any teeth since she was teething for cast #1. Apparently our casting schedule and E's teething schedule are roughly aligning.