Updating Owen's Progress

Hey all, I have been too lax this year with the blog. Life has a way of sneaking up on me and leaving me with no time to write. But I did want to do some Owen updating. In April, we had his right club foot corrected and his right knee released. The knee is spectacular. We went from basically a 90 degree bend to a 5 degree bend. He has some wicked scarring from the Z-plasty, but his leg is in great shape. The club foot correction was probably moderately successful. Initially, we thought it was great too, but now that it is the end of August, it's recurring again a bit and my guess is that while Owen could and probably will learn to walk on this foot, we have some additional surgeries ahead of us to achieve a flatter foot. In May, we had his left vertical tallus corrected and his left knee released. Same outcome with the leg as the right. Awesome knees and legs. We could not be more pleased. The vertical tallus still looks like a vertical tallus. Dr. Feldman thinks he will eventually have to remove the tallus. Owen can learn to walk on this foot, but it will also need further work. Post-surgery we have just been working on Owen gaining the strength he needs to stand. I thought (mistakenly) that Owen was going to be able to get up and walk after surgery was done. I have no idea why I thought that. I am smarter than that, but I guess I got so excited about it that I just figured we would get from A-Z in a heartbeat. Ha. Walking will take a year or more. Now that I know that we need to visit each letter between A-Z and for some significant amount of time, I am much more realistic in my expectations. For example, Owen was cleared for weight bearing in June. We are told he can stand on his joints, however, Owen doesn't know how to stand and his hips are dislocated so the amount of stretching and exercise it takes to get Owen to stand somewhat straight takes so much time and then he can "stand" strapped into his stander for about 20 mins at a time. But I assure you, Owen will walk. If it were up to Owen, he'd run. As a matter of fact, when I take off Owen's braces to give him a break, he says to me, "Ma, I need to go for a run"! Soon enough O! On August 14, 2012, we had a left VEPTR expansion and a right VEPTR revision. Owen gained an inch on the table. But, right now one of his wounds is looking a little like it may be infected, so please if you read this, say a prayer or think good thoughts. We already had our turn with hospital infections and we aren't due again until the end of eternity and not a moment sooner! Caleb is awesome. Caleb had to be evaluated because he seems to have a little issue with his speech. His hearing tests came back inconclusive because he is 2 and he doesn't have the attention span to listen for beeps in his ear for an extended period of time. Early intervention came and he is fine. They wouldn't give him speech for the few things he isn't articulating correctly. Not to mention, cognitively, he is well beyond that of a 28 month old. I am thrilled to not need another appointment weekly. Gavin is also great. At our recent family vacation to North Carolina, Gavin discovered his love of the Ocean and was basically a fish for a week. He has also taken to doing elaborate jumps into my parents pool. He is a very talented jumper. All in all, it's been an eventful summer but also a good one. Thanks for reading!

A bit of good news...

I cannot explain how excited I am by all of the news around Owen's leg. I will revisit our recent months for a minute. We switched Orthopedic docs a while back. When we first met Dr. David Feldman and Hospital for Joint Disease, he walked into the room, gave Owen's thigh a squeeze and said, "He has great quads, let's get him walking." And right there I knew, he was the doctor for us. Well, that and a ton of research on him including speaking to other medical professionals, docs, therapists, and parents who just kept recommending him. On April 9, 2012, Owen had his first knee release and right clubfoot correction by surgery. As you all know, Owen's clubfoot had been corrected maybe 6 times with serial casting and tenotomies. Nothing kept his foot in place. At times we did casting 3x a week. It was crazy but in the interest of treating conservatively and attempting to avoid surgery, we wanted to try. We gave it our best. It's hard to live like that, for Owen especially. Not many people are casted three times a week. Usually it's once a week, but Owen's foot had other ideas. Eventually, we made the decision to go forward surgically. Surgery was done and Owen's knee was taken from 90 degrees to 20 degrees. Imagine 90 degress as you sitting in a chair with you knee at a right angle. Imagine 20 degrees as a slight bend in an almost straight leg- maybe the stance you would take as you throw a basketball into a hoop. A knee bend for sure, but not a 90 degree knee bend. Needless to say, after 8 long hours of surgery, Owen's leg looked great. He recovered pretty well too. Only 2 nights in the hospital and only one of those was in the PICU. Once his O2 was stabalized, we were moved to a regular room and regular rooms mean you are one step away from going home! The weeks following were painful, but Owen is a trooper and quickly got himself back to playing, rolling and scooting all over. On April 23, 2012, we went back to the OR for cast removal, suture removal and cast change for the foot. He was placed in a splint that we could remove to move his knee joint. His leg looked great, foot looked great and everyone was thrilled with the progress so far. On April 26, 2012, I took Owen to see Dr. Feldman for joint moving. Dr. Feldman described this visit as a day that he did not want to go to work. He told me it would be "traumatic- not dramatic- traumatic." Prior to leaving for the doctor, I gave Owen some Tylenol with Codeine and we headed into the City. I was terrified as they took the bandage and splint off. Owen did great. His joint moved well, he cried a little and we were on our way home! We have been stretching it ever since and now he even moves it on his own. It's pretty amazing! Nick mentioned to Dr. Feldman at one point, that no one really ever spoke about Owen without referencing his future need for a wheelchair. I watched Dr. Feldman as he scrunched up his face, knit his brow and then he said "that's not the plan. I think Owen will walk." And Nick and I felt like a million bucks. We know, nothing is guaranteed. But we now have a different kind of hope. We go in for the left leg/foot and right foot pin removal on Monday (5/14/12). I am nervous. Surgery is going to be long. I pray Owen's left knee has a similar result. We will be at NYU for a couple of days and then hopefully home. Please send good thoughts and prayers. Love to you all! Sara

It's been too long!!! And a parent's guide to VEPTR surgery. Multi-tasking at it's best.

I fell off a little bit. I usually find this blog to be therapeutic, I also sometimes get a little depressed writing about surgery after surgery. And after the infection and resulting surgeries, I felt a little down about everything and needed a mental break from reliving that nightmare. But lately, I have made a lot of new friends with kids like Owen (children with Escobar, children with VEPTRS and often, children with both) and I felt a renewed sense of wanting to share our experiences with everyone.

I decided since we are coming off our first bilateral VEPTR expansion, to share some of the things I have found about Owen's surgeries. Maybe it will be useful to some of the parents who are about to go through this and it may help your visit to the hospital to go smoother for the parents and the patient.

So here are some tips-

Pre-op:

TIP 1
One of the things I insist upon now is the CHG wipes (Chlorhexidine Wipes) prior to surgery. These are packets of individual use wipes that are used the night before your childs surgery to attempt to prevent infection. Dr. Campbell's office introduced me us to the wipes, but now I ask every where we go. I am not sure if it helps, but if you can take an extra precaution, why wouldn't you? Up until this last surgery, it was my understanding that these wipes are to be used the night before surgery after a soap and water bath. One hour post bath, wipe the child down pursuant to the direction (i.e. neck down only, one wipe for certain body parts). This last time we visited CHOP, I was sitting in the rocking chair in pre-op and I noticed from a sign that the second CHG bath is to be given in that room prior to surgery. I showed the sign to the nurse and he was given bath two. After our experience with infections, I am at the point where, if she would have let me use them on my body, I would have. So tip 1- ask for the wipes and make sure you do it pre-op!

TIP 2
The On-Q pain ball. I am not sure if they are using this everywhere, but Dr. Campbell used to use in in San Antonio and currently uses it for VEPTR placements at CHOP. We were one of the first cases to use it at CHOP. Dr. Campbell was very curious to see what we though of it as parents. Initially, I did not find it helpful. Owen needed all of the morphine rescues, all of the oxy, valium and tylenol they were willing to give. But, on day 4 post-op when it was removed, Owen's heart rate increased. He needed a little more oxy and things like peaking in his dressing caused a crying fit. So I asked some questions about it and I began to understand it's purpose a little better. It numbs topically. It's purpose is to basically battle incision site pain. I personally wanted Owen to have all of the available pain management options out there and I am thrilled we were able to get some relief with this. So if it's available, I suggest asking your doctor about it. It is embedded. It does have to be taken out by the surgical team, although it takes one second (less time than removing an art line).

TIP 3
Stool softener. I am going to do an experiment before Owen's next surgery and I am going to give him a stool softener prior to surgery. And then request the colace and the miralax post-surgery. I am a nut about this because when you have a child who cannot expand his chest wall and who breathes with his diaphram solely, a poop backup causes lot of symptoms. For one, an extremely distended stomach which sometimes can give you issues regarding the diagnoses of fluid retention- which is another very important issue you are watching for. Secondly, it causes desaturation in oxygen. He cannot breathe the same way. Third, his heart rate becomes elevated due to the pain, which no one can tell if it's from that, or from the incision so more pain meds are given- which leads to slower systems- which contributes to the lack of poop. So be adamant about stool softener immediately after surgery.

TIP 4
Kind of related to tip 3, but when your child can eat and is given permission, give them food. Food makes it better. They poop. They are happier and stronger. They seem more like themselves. Even if they don't seem hungry, try to get a couple of bites in.

TIP 5
Pain meds. Do not be afraid to ask for them, to ask for an increase in dosage, to ask for less of them and to ask them to refrain from giving a dose. After Owen's first surgery, I thought Morphine was the best thing since sliced bread. It made Owen okay. After his right VEPTR placement, I realized how overly medicated your child could be and how that can be detrimental to his healing. Owen was a zombie the second time. So much so that I asked them to stop giving him Morphine for a day so he could wake up. He would sit upright in his chair and be asleep. He didn't wake if I held him. I was getting worried. So the nurse and I spoke and I asked that they stop giving it.

TIP 6
You know your baby better than anyone. ANYONE. I will use fluid retention as an example. Owen has needed lasix after both VEPTR placements. I could tell that he was swollen. His fluid output was very positive. His breathing was affected. His O2 levels were not high enough. Now, post-surgery your child may be swollen from placement. They are face down for a lot of hours. But at some point you begin to say to yourself- hmmmm, he looks a little more swollen. Or it's post-op day 2 and I still see he looks chubbier than normal. Speak up. SPEAK UP. Maybe because I am a medical malpractice attorney, I feel comfortable sticking my nose in and asking tons of questions and really being a part of all of his medical decisions. But I cannot stress enough to those of you who are less comfortable, speak up. You know your baby. You are the expert in your child. So if there is any behavior, symptom, twitch, or minute detail that you are wondering if you should mention- mention it. They will respect your input. They use it. And if they are as quality as our team is- they will will appreciate you for bringing it to their attention.


Okay- that is all I have for now. I eventually want to write something on prophylactic meds for those of us who deal with infection, but I must run for now!

AND any input you other moms and dads have on this topic- please comment. I would love to know what you find useful as well!