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!
