My Thoughts on Friday's Surgery

As Quinn's Roux En Y Jejunostomy surgery is rapidly approaching (this friday!), I find myself playing the same mind games I did when Q had her g-tube put in, and then when she had her Nissen. i feel a little lucky that Quinn is not as fragile as some children, but I still continuously second guess myself.

i recall Quinn's g-tube surgery and how nervous I was that she was going to be getting a TUBE in her stomach! Quinn was not a typical case.. as she never was and never will be. Quinn wasn't grossly underweight. She stayed on the growth charts at least, but she was ALWAYS in and out of the hospital because she was always sick and everytime she got sick, she got severely dehydrated (to the point that she couldn't even lift her head) This lead to multiple trips to the ER just for IV hydration and many, many hospital admissions. Before her G-tube, these were the bulk of her admissions. At first I regretted doing that to her, mainly because my child could eat. she only needed it for supplementation and hydration when sick. And when her first sickness came after the tube, it DID NOT keep her out of the hospital. It was a raging g-tube infection that landed her inpatient for a week. And this happened not just once, but MANY times. I was so mad at myself, however her stays in the hospital were fewer, shorter and farther between. We were at least able to keep her hydrated for a little bit until she continued vomiting everything. we realized though that she still had a very severe case of reflux. The surgery to correct it was recommended due to the fact that Quinn was still eating a good amount of her nutrition by mouth. We knew that she was refluxing what she was eating (she had many PH probes that indicated very severe reflux) and when she got fever, she projectile vomited. if she got the g/j tube, she would still end up puking unless we stopped feeding her by mouth and this was not an outcome we wanted. At this time, we were completely unaware that she potentially had a disease that would keep her tube-dependent indefinitely. We focused on the fact that the surgery could fix her and that we could eventually remove the tube and she would be able to survive like a normal child without always throwing up.

When Quinn had her surgery for reflux, she, again was not a typical case. We heard many many horrible nightmares about stories that other parents had been through. We were told by other parents that unless it was a life-or-death matter, never to have it done. but our surgeon was confident that Quinn was a good candidate and that it would help her. Quinn had her gtube and although she puked all day every day, she was somehow able to keep enough calories in her to continue to grow! Though she had a few pneumonias, it wasn't found that she aspirated. And so in Quinn's case, the Nissen was NOT a life-or-death situation. We just wanted her to be healthy and to live a normal life, without a g-tube, without puking. She was also globally delayed and all her docs felt that her reflux was so severe, it was probably contributing to her delays. By the time Quinn had her surgery, she was in the 20th percentile. So, like I said, she was not life-or-death.

I, to this day, have NEVER regretted Quinn's g-tube surgery or her Nissen surgery. These, again, were surgeries that were well processed, pros and cons were weighed and decisions were made based on other's experiences, our experiences, doctor's recommendations and consulting with family. We have always had Quinn's best interest at heart. In retrospect, we are so grateful that we did not wait too long. Given the immediate improvement in both operations, they were good decisions. Quinn was healthy enough to suffer little to no complications and for that we are so grateful. The surgery did help her! After she had her nissen, Q started thriving in therapies and now, at four, she is not at all developmentally delayed.

In short, from those decisions to now, we are almost 100% certain that Q has mitochondrial myopathy. And she has followed that path. Unfortunately, after a very healthy year in 2009, the disease has taken a road of progression and her motility has slowed down quite significantly this past year. It affects her health and daily life greatly. She can no longer eat food like a normal person. It must be pureed and she cannot have a lot of it. Her stomach does not empty well and this means taht she walks around almost every day looking like a pregnant toddler. She is on a very high calorie diet, is on a feeding tube 16 hours a day and has episodes where her stomach just decides not to work. As crazy as this all seems, she still finds ways to gain weight (yes with lots of intervention she is still gaining). but this does not come as a price to her. Quinn lives with belly pain constantly. Sometimes it is mild, but sometimes it is raging and she spends a lot of time screaming in pain, pain that I can't always make go away. She also has frogs that try to hop out of her mouth (this is her description of retching). And she is on 3 seizure medications because she is lacking the ability to absorb all of them through her stomach.

Earlier this year, Quinn had her gtube switched to a g/j tube. but, Quinn's anatomy is different and caused the g/j tube to not stay in and after multiple attempts to keep that thing in place, that is why she was referred to surgery for the Roux En Y Jejunostomy procedure. And as this day nears, I find myself with questioning thoughts. Does she really need this? what if something bad happens? What if it doesn't go as planned? what if we make things worse!? These are the same thoughts that consumed my brain when she had her gtube put in, and when she had her nissen surgery. These decisions were never abrupt, they have been thoroughly thought out and she has had many consultations with doctors, teachers, and family.

Though on days like these, the decision should be an easy one and on those days, it IS easy to say, YES, I just want her to feel better and to convince myself that she NEEDS this.

However, My Quinn is so amazing and it's moments like THESE that I can convince myself that she doesn't need it.

We are still going through with the surgery as planned. We feel that it was a well-thought out process, we are not making an abrupt decision and are confident that it will work as planned and give Quinn a better quality of life. All this week, I have been asking family and friends if t hey feel that this is the best thing for her and the answer is always yes. I have asked her GI doctor and he too feels that we should go through with the surgery. Though we have no way to know for sure how the outcome will be, if it goes as planned, it will help her.

As for the surgery, it is not an easy surgery. They are cutting her intestines, moving a portion over to make the stoma for the J tube and re-attaching the other part of the intestine to her stomach. We have been told the recovery is a minimum of 4 days in the hospital and for us to expect a week. We were also informed today that given Quinn's "history" she might have to remain intubated for a short period of time to give her body a boost for healing.

Please send some good thoughts, vibes, prayers, whatever you do, as we gear up for this surgery. for quinn to remain healthy until her surgery day.