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.

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.

12:22pm
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.

2:15
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.

3:40
Surgery is finally underway. It took a while to get the all of the prep done.

4:05
Things are still underway, working on the first leg. Nothing out of the ordinary to report.

4:55
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.

6:00
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.

6:30

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.

7:30

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.

9:30
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.

10:30

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.

In the Hospital 12/1/2008 - with updates - arm is rodded

12/1/08 1:25 pm (Central Time)

We have been at the hospital since 11:00 and Molly has now been taken back to the OR.

She was a bit feisty about accessing her port, but other than that things have gone quite smoothly.  The staff here is so wonderful.  I feel very lucky to have a wonderful surgeon and staff all at the same place - too bad it's all the way in Omaha!

There will be a nurse coming out to give us updates as to when the surgery starts and how she is doing throughout and I will update you as I get updates.

Thanks to all for thinking of Molly and hoping for a good outcome.

They are going to take X-Rays of her legs while they are in there, to check on the fractures she has had this past week.  He could feel bowing in her right Tibia right down at the ankle.  He thinks we won't do anything about the legs today in hopes we can get some more time out of the current rods.

Thats all for now...

3:05 (Central Time)

Dr. Esposito came out to talk about how her leg X-Rays looked and we needed to make a decision about whether or not to rod her left Tibia.  The rod i snot "seated"/fixed at the bottom, which means the rod will not telescope.  It is also bowing where the male and female parts meet (just below the middle of the bone).   The rod is quite close the bone in the front and will eventually break through the bone, at which time it will need to be replaced.  We debated replacing this one rod, but both Jim and Dr. Esposito feel it is reasonable to wait.  Her left Femur is bowing and those rods are now almost 2 years old.  We may need to replace the one rod in 3 months, or we might be able to wait a full year before she needs another surgery.  If we are able to wait a while longer we would most likely replace all 4 leg rods at the same time.   I am feeling a lot of ambivalence about this decision, but in the end we respect Dr. Esposito's opinion and his recommendation is that we can wait.

Here's hopin'!

I'll be heading out to be with her and will try and post soon.

Sarah

Good News From Dr. Esposito :)

Dr. Esposito just called and gave us a good report on Molly's X-Rays. He thought her Humerus (upper arm) was almost completely healed and we should be able to take the splint off in another 2 weeks or so. It has already been 4.5 weeks, so I guess we can make it another couple of weeks. He though the Tibias looked straight and saw some healing on the back side of the osteotomy (break) sites. He said that often if there is any bow that the front side of the bone tends to have trouble healing. If she has not had significant healing in another 4 weeks (2 months post-op) that we will look into getting a bone stimulator to improve healing.

He thought that things looked good enough to try some water therapy, assuming that Molly could tolerate it without pain. We will probably jump into the hot-tub tomorrow and see what happens. We can try some weight-bearing in the water, but not on the land for another 2 weeks or so.

Molly has been having tantrums today and it is hard to know what they are about. Everything has become a negotiation and she seems to want everything immediately and always her way. I suppose a lot of this is her age and a little of this is her personality. Her feistyness makes life very challenging, but also very entertaining. She has been working very hard on coming up with as many delay tactics for bedtime as possible, which has been exhausting. We have slowly been eliminating them from her repertoire and tonight was the first time in a while that she went to bed without a lot of battles.

She got a pair of Crocs (shoes) yesterday and they have been a new favorite thing. She has been without shoes for over a month due to the fracture and then the surgery and I think she is really enjoying being like the other kids. Our neighbors all just got Crocs, so I think it is especially nice that hers are exactly like her friends.

She is using the potty a couple of times a day generally when she needs to poop, but still does not seem particularly interested in making it a daily routine.

Surgery updates

[1:15pm central time] Molly was in good spirits as they took her away for the surgery.

[2:00] Just got the update that the prep work is complete, and the operation is under way.

[3:10] They are still working on the first leg, and it will still be a while until the surgery is complete. Molly is doing well.

[4:15] They have finished with the left leg, and are now moving on to the right. There has not been a decision yet about rodding her arm.

[5:30] Surgery complete! We just talked to Dr Esposito, and he said the surgery went well. He decided not to rod her arm. They will be creating a molded plastic splint for her arm in the next couple days. Both tibias now have f-d rods, with one osteotomy (break with an incision) each.

We should be able to go see her in about 45 minutes. Dr. Esposito thinks that the recovery should be much better than last year, since we didn't have to touch her femurs.

She will have splints on her legs for 3-4 weeks, and we won't do any baths or water activity until after that point.

He said her knees will be the most sore part because he has to insert the rod through the knee joint. She had a slight non-union in the right leg as well. The fracture from Friday was only a crack, which is what we figured based on her behavior and comfort level.

She will be on Morphine, Toridol (IV Ibuprofen), Tylenol, Tussionex, Valium (for spasms) for the next 24-36 hours.

We are now just extremely anxious to see her. These next 30 minutes will really drag on.

[10:45] We are in our room and happy to be together. She has been doing remarkably well. She has slept a little off and on amongst all of the nursing activity. We are trying to figure out the best pain management regimen for her. She hasn't needed any Valium (for spasms) yet, which is a good sign. She has asked for a lot of "nails", which means patting her belly with our fingernails, and has wanted us close by.

She has just woken up and asked for a snack and just had half a popsicle and some jello. We are already seeing glimpses of our wonderful little girl.

We have watched the same few videos over and over and that seems to be doing a good job of keeping her mind off the pain.

Hot Tub and Ortho Phone call

Molly is doing very well and coming up with new tricks by the day.

We bought a used hot tub for Molly's water therapy and it arrived on Wednesday. We have all been very excited for it to come and have really been enjoying it. There is a seat shallow enough for her to sit at and she can stand on the other seats. It seems like it is going to be perfect for her!!

I spoke with Dr. Esposito (the Orthopedic surgeon in Omaha) and we discussed the X-Rays we had taken in December. He thought that her femurs looked good. The FD rods are expanding nicely. The top of the rod is still extended beyond the bone and is in her bottom tissue, but she hasn't been complaining about it and he said that this was better than it being sucked up into the bone. Her tibias are bowed and the right more than the left, which we already knew. She has a partial "non-union" in her left tibia with some "bridging", which means that she had a fracture (I think from sometime around June) that has not completely healed. The "bridging" means that there has been some healing, but it should have been healed by now. She has not been complaining about pain in that leg, so hopefully it is not causing her a lot of discomfort. The right tibia is bowing and now it is just a wait and see as to when we re-rod her Tibias. It looks like she is big enough now to have the telescoping (F-D) rods in her Tibias, which should give her more time with the next set of rods. You need 4mm in the growth plate area and she is measuring at 6mm.

The plan now is to wait and see how she does. She is walking more, but she is also walking with more of a limp than before. As long as she is tolerating walking and weight bearing and she isn't complaining of pain and doesn't have a fracture we will hold off her surgery. He felt that we will be able to splint her if/when she fractures a Tibia and schedule surgery within a weeks time. It is hard for me to play this waiting game, but the longer we can wait before her next surgery the better things will be for her. He said that her bones looked much better and more normal than they did for her last surgery, which should make things a lot smoother for surgery.

I discussed my anxiety about going through the post-op recovery that we went through the last time and he felt that it would be a lot better this next time around. He can use a tourniquet to prevent the blood loss she had during the last surgery (because her femurs have rods), so she won't need a transfusion. It should also be better because there will be fewer osteotomies (bone cuts) and fewer bones involved. Molly had elevated PT/PTT blood test results (these have something to do with bleeding and clotting? I think) and therefore they were not able to give her an epidural for that initial recovery period, which would have been so helpful.

We need to be sure and have X-Rays taken from both the top and side view in the next 3-6 months in order to better determine how her Tibias look and to help Dr. Esposito come up with a plan. I hope that we get to the point that we decide to schedule these X-Rays and don't have to go in because of pain she is having.

Dr. Esposito also asked how her arms were. This is the first time that has come up. It makes me a bit anxious to think that we might also have to address fractures and rods in her arms. We will have to keep our fingers crossed that we are lucky enough to avoid this completely - I can wish at least :). He said that you can rod the Humerus (upper arm), but there aren't rods that are particularly effective for the lower arm. It sounds like a lot of the arm complications occur after an arm fracture. When the arm heals and there is a bow, it will simply get worse from there or can have non-union complications etc.

I am sure I will remember more from my discussion with Dr. Esposito. I'm glad to have that all down on "paper" for our records :).

Here are a couple of videos...
Molly in her new hot tub CLICK HERE (poor quality, sorry)

Molly says "Cockadoodledoo" CLICK HERE

"I put ketchup on my sandwich, it tastes good"
"I sit HERE" as she pushed the foam out of the way that I had placed there to prevent her from sitting there. This is one determined little girl!

"Daddy toot...pfffft (her sound affect)"

"My name is Lisa" (and holds her hand out to shake hands)
"My name is (Mommy, Daddy, etc."
"Call Livie...(on plastic phone)... Hi Livie, come to my house and play with toys"