Tuesday, September 29, 2009

Home and Healing Nicely

We have been home since Saturday and I think we have all gotten some well needed rest. Molly was wearing "Wee Walkers" (black walking splints), but after seeing how little mobility she had and noticing how uncomfortable she was when I picked her up (they pulled down on her legs because they are rather heavy). So, I made some fiberglass splints and that has made a tremendous difference both in her mobility and her comfort. I still need to set an alarm to give her medicine during the night, but she generally stays asleep while I do that and is sleeping all night long.

We have decided to sell our house and look for a house that better suits Molly's needs and also is hopefully closer to Jim's work. We do not have any bedrooms on the first floor, which means we carry Molly up and down the stairs every day. We are thinking in the next year or so that will become much less age appropriate and more challenging/dangerous as she gets bigger. It has been a challenge to try and stay focused on this while taking care of Molly and managing her post-op care. We are rather big collectors of "stuff" and therefore have a very big challenge to try and get the house in order.

Enough procrastinating... off to do some work :)

Saturday, September 26, 2009

Back Home in NC

It has been a long week and we are all very happy to be back at home. I am hoping Molly will have another good night sleep back in her own bed.

Friday, September 25, 2009

Rested and Feeling Better

We arrived in St. Louis around 12:45 and all three of us were asleep by 1:15. Molly did really well and slept through the night - hooray. She is up, and eating breakfast for the first time since Sunday. She seems SO much more like herself - phew! Hooray for the magic medicine of time.

We now have the luxury of an entire day with nothing to do and nowhere to be. We fly out first thing tomorrow morning and hopefully Molly will be that much better by then.

When I was putting her on the potty this morning I noticed that her legs are significantly different lengths now. She has two walking boots that are identical and the right leg is completely covered from the knee down with the boot and the left leg has almost an inch sticking out. He warned us that with the way the right leg broke that there would probably be a discrepancy. I am hoping that the difference is exaggerated with the boots and won't be as significant once we get her up and in shoes.

All in all we are doing leagues better and enjoying being out of the hospital and in a familiar house.

Thursday, September 24, 2009

Out of the hospital - En Route to St. Louis

We checked out of the hospital around 5 and started the 7 hour drive to St. Louis right away. Molly has done well with the transfers and I think we will all benefit from being out of the hospital and back at Jim's parents.

Thanks again for all of your messages of support. It is so nice to have emails to help distract us when we are in the thick of things.

Pictures from the hospital

Molly is definitely doing better today. She is getting everyone to buy things from "Lilly's store." That basically amounts to asking Molly if random things are for sale, and she rings them up on the cash register.

We were also very impressed with Molly's first drawing of a person with arms and legs.

Notes to myself (and others) for our next surgery

Tell the nurse as soon as we get in the room that all medications are to be scheduled and not given as needed. The past two times I have held off on the valium waiting to see spasms... don't wait to see spams! The valium was quite affective at managing her pain in between doses of other medications.

If she doesn't seem comfortable with the given narcotic/"big medicine" dose - ask if the dose can be increased and/or the frequency it is given. Dilaudid was more affective than the morphine, so we can ask for that the next time.

I think the next time I would try the epidural again, but if we find it is finicky or not affective get it pulled and start Toridol and up the other medications. I wouldn't wait more than a few hours of a finicky epidural. I have heard when they work they really work, but ours did not this time and we should have realized that sooner.

She tends to get itchy between the narcotics and the incisions, so start benedryl right off the bat.

When they first start the medications ask for them to give the frequency and also the dosage and write it down in a notebook or on the whiteboard. Stay on top of the dosing and be sure that they are given on time.

Be sure to start miralax as soon as you get in the room - that's when she will suck down 1-2 big cups of water without any coaxing.

Don't let the nurses make you feel bad for asking for more or different medicine for her. I was a bit intimidated to ask for benedryl yesterday for the itching she was having under her casts, but now feel confident it was perfectly appropriate. Remember you know her best.

Wednesday, September 23, 2009

Happy Molly is back

We are past the magic 36-48 hour window after the surgery. We saw more and more of Molly being herself today. We went for a trip around the hospital in a wagon, and had a chance to start playing different games.

Here are a couple of today's choice quotes:

"Can we come back here again? They are nice here."
"I got this kitty for being brave this week."

Tiny Steps Forward

Molly is feeling better, for the most part today. There are times when the interval between doses is a little bit too long, but more often than not she seems to be in a lot less pain than yesterday. We transferred her to a wagon today and took a trip downstairs to the gift shop. This was fun in the beginning, but soon became a bit of a nightmare. She is still very tired and became a bit hysterical when she couldn't find the right thing to buy. We came back up and she promptly fell asleep for a little under an hour.

She is watching show after show after show at the moment and interacting with us more and more like herself. We have not figured out a plan yet as to when we will be leaving, but we will probably find that out tomorrow morning when Dr. Esposito does his rounds.

She is still not eating or drinking much of anything and went 8 hours without going to the bathroom (after the catheter was taken out at 8 am). We got her on a bedpan a little while ago and now things seem to be moving in the right direction. I just hope she begins to eat and drink quite a bit more than she currently is.

All in all we are happy to have the past two nights behind us.

A Better Morning

Molly got some much needed rest last night (off and on) and seems much more like herself. She is talking quite a bit this morning and being quite pleasant (a big change from yesterday). She is still not eating or drinking much, but I'm sure that will come sometime today. If only all 3 of us could take something to sleep through the first 36 hours... at least we seem to have made it through the worst of it :)

Tuesday, September 22, 2009

Epidural Free

They have pulled the epidural after we decided that it wasn't working. They have increased her Dilaudid (a narcotic) and put in an order for Toridol (an IV motrin). The Dilaudid makes her feel a little better, but she is still in pain. I am pacing the room waiting for the Toridol to come up to the floor.

It has been a long day with lots of crying and whimpering "I hurt", which has been unbearable.

We got to lose the epidural and pulse-ox today and hopefully will lose the catheter in the morning. Then we just need to get the pain med cocktail that will work for us.

I really wish there was a better list of what to ask for when your child is in pain and how much, how often etc. It is hard that the nurses often are gun-shy to page the doctors for a change in dose or frequency. We had to push to get the epidural pulled tonight (since it wasn't working) and I only knew to push thanks to another OI mom who happens to be an ER doctor. They then thought we couldn't have toridol for hours due to the medication that might be in her system from the epidural, but again the ER doctor gave me confidence to push for it.

She just asked me "do you have brittle bones?" and when I answered "no", she said "that's good... you're lucky". That is just heartbreaking. She also said "this is a nice place" about the hospital - which is a remarkable thing given what she is going through. What an amazing little kiddo she is.

Back to the Medication Nightmare

We cannot seem to keep Molly comfortable for more than 30-40 minutes. There has been too much crying and whining for any of us to handle. She just got a bolus of medication in her epidural and we have not seen much improvement as far as pain management is concerned. We have just paged the anesthesiologist to come up with a new pain management plan...

Pain Management has Improved

Anesthesia just came in and I think we have Molly much more comfortable. They think there is some resistance in the line and not all of the medication was being administered and some has been leaking out. She came in (Dr. Marika Stone - wonderful) and did a bolus (pushed several ml's of medication through all at once) and that seems to have her much more comfortable. She is now resting peacefully. Here's hoping this lasts!

Night One Post-Op

6:30 am

It was a long night. All three of us got some sleep, but in between the sleep was rough. We have finally figured out that she needs morphine every 2 hours and valium every 4 in addition to the epidural in order to be comfortable. She screamed off and on for 10 minutes in the middle of the night while we waited for her morphine.

This morning she seems a little bit more like herself, but clearly in a lot of pain and having a lot of fear as the nurses continue to come in to do one thing or another. She has eaten several popsicles, which is a good sign.

Today is a new day and hopefully things will be better today than they were last night.

Monday, September 21, 2009

Surgery updates

We are at the Omaha children's hospital now for Molly's surgery. We'll probably be re-rodding both tibias today. I'll update the blog through the day as we have progress.

They have accessed her port, and now she is off to get x-rays. They had to bump one kid with a fracture ahead of us, so our surgery will likely be around 2pm central time today. Poor Molly hasn't had anything to eat since last night, and is getting hungry.

molly is in for surgery. She was in good spirits while we waited for everything to be ready. The surgery should take about 4 hours.

Surgery is finally underway. It took a while to get the all of the prep done.

Things are still underway, working on the first leg. Nothing out of the ordinary to report.

They have finished with the first leg, and they are moving on to the next. So far so good. We talked about having an epidural this time, which should help with the pain and recovery after the surgery is finished.

They have finished the other leg. There was less bowing it that leg, so it went more smoothly. Seems to have gone well throughout the surgery. We will probably see her in teh next 1-2 hours.

They are finished with the surgery and she is now being moved into recovery. He felt things went well. He did one incision at the mid-tibia area for an osteotomy (surgical break) and both fibulas are also broken. She may be slightly shorter on the right side due to the way the fibula is sitting, but he felt that it will balance out on its own or with subsequent surgeries and his main goal was for her to heal from this one. He noticed a lot callus (bone healing) on the front of the right tibia, which told him that she has been breaking that bone off and on for quite a while.

We should be able to see her in the next 30-45 minutes. The anesthesiologist is redoing the epidural because she wasn't getting the complete pain coverage that Molly needs (I don't want to know how they know that), but we are hopeful that they will have it figured out by the time we see her and that she will be comfortable for the next 1-2 days while it is in.

They are still trying to get her epidural set up. It will be a little longer before we will be able to see her. This waiting is unbearable.

We are in the room with Molly, and she is sleeping in bed. The Epidural seems to be helping more with pain management than previous surgeries. She asked for some water when we got into the room, and then she went back to sleep.


We're on the medication roller coaster. She was doing OK when we got up here and has since come to and been upset and in pain. She screamed and was angry (understandably so) and we are now trying new medications. We have started with morphine and will soon be adding some valium to the mix. Here's to tomorrow or the next day when I won't have to hear my daughter whimper in pain.

Tuesday, September 15, 2009

Hooray for Southwest Airlines!!

We were trying to mentally prepare ourselves for a 22 hour drive each way, but we have now been saved by a reasonable fare through Southwest! I had been looking at other airlines and the cheapest flight was between $500-$600 - these were closer to $300!!

One more thing to cross off my "to do list"... now back to trying to get our house ready to put on the market.

Monday, September 14, 2009

Surgery on Monday in Omaha

We went and got an xray of Molly's legs on Wednesday and there is definitely a fracture right at the mid-shaft of the right tibia and it also appears that the rod is migrating up into the knee. Dr. Esposito got back in touch with me today and said he didn't think this fracture would heal without replacing the rod. She has not been able to bear weight on the leg, which is unusual after 3-4 weeks with a rod in place.

Dr. Esposito's nurse called this afternoon and Molly is on the schedule for this Monday, in Omaha, at 1:00. The flights seem to be about $500 each given the last minute notice, so it seems that we are going to drive the 1200 miles!!! I know it will be an adventure if nothing else - thank goodness for DVD's :)

She has now come down with a cold and is feeling a bit under the weather, so we are offering her as much fluid as possible in hopes that this will pass or at least subside for the surgery on Monday.

She is now weighing in at 28.5 lbs

I am dreading the idea of having her going through yet another surgery, but I am hopeful that this will mean she will feel less pain in that leg and will hopefully be back to walking in a month or so.

Thursday, September 03, 2009

Fun, Feisty and Back in School

Molly is doing well and keeping us busy and entertained.

We have entered a new phase with more back-talk and tantruming than we are used to. We are now having the head turning fits in the store when she is told she cannot get the toy she has enjoyed playing with. Up until now we have been able to "visit" toys at the store and then put them back on the shelf. She is now saying "I won't let go" and she is hiding it behind her back or sitting on it etc. Oh so fun.

We were at REI yesterday and she was looking at sunglasses. When I told her she did not need another pair of sunglasses she had a nice big tantrum with "bucking" in her chair wailing and screaming and the proceeded to honk the horn (a beeping sound) on her power chair. When that didn't get her what she wanted she proceeded to "escape" and wove her way through the clothing racks all around the store. Funny now, but not at all funny at the time.

Molly had her first day of school today, which went extremely well. She has not been able to tolerate standing or walking for more than a few seconds since she broke her leg last month. We decided to start her off this year in her power chair in the classroom, which has given her a great deal of independence, which is good. She has a new aide this year, Sheila - who seems wonderful, but Molly has taken a little time to be willing to open up to her. We met Sheila last week for the first time. Molly was drawing pictures for the 3 returning teachers for this year and when I reminded her that we needed a 4th picture for Sheila she told me she would do one another day... only after explaining that we would not bring the pictures in until we had 4 she was willing to do one more (begrudgingly).

She seems to be warming up to Sheila very quickly and I am really excited for this year at school. The kids seem wonderful and Molly seems really happy to be there.

We have decided to put our house on the market and hope to be able to sell it for a good price and be able to build a new home with widened doorways and one story living for Molly that is also closer to Jim's office. Molly is very excited about the idea of being able to paint her new room purple (she does NOT understand why we painted her current room yellow - which is NOT one of her favorite colors). Boy does this girl have some strong opinions!

We have been talking a bit about what she might like to do "when she grows up" and she has now narrowed it down to being a Princess, nurse and teacher. She asked Jim what he wanted to do when he grew up and told him he should be a doctor. Jim said he wasn't sure that was something he could do, but Molly assured him he could... all you have to do is poke people and take tape off Daddy...

She is a bit unsettled about us packing things up and the idea of moving. She told me the other day that she dreamt that we had to move in to a doctor's house and they were poking and prodding her (ugh). I have of course assured her that would not happen, but she is understandably anxious. She also asked if when we got a new house would we get a new Howie too (our dog)?

Well, we live in a house FULL of stuff (mostly toys) and I have been frantically trying to pack to get us ready to be on the market and I am exhausted!! We are having a yard sale on Saturday and we are hoping to get rid of A LOT of stuff!

I am off to bed - sweet dreams :)