A decision for Q and coordinating Medical Care

First of all I must say that NOTHING stresses me out more than trying to coordinate all of Quinn's medical care. It's the P's and Q's that are annoying... making sure all the i's are dotted and all the T's are crossed... it's just PAINFUL! If a doctor doesn't write an order correctly, or the insurance doesn't take a certain diagnosis, or waiting for authorizations, appealing denials, having our medical equipment delivered only to find out that they forgot to bring her 10ml syringes.... getting adult nasal cannulas instead of the pediatric ones... trying to get the right paperwork in line for referrals... it's just a very stressful. For me.... very very stressful. I am in awe of the mothers and fathers who can do this kind of stuff naturally, for me, this kind of stuff is incredibly tiring. Add ALL of this on top of us moving into a new location... now i'm having to give my new address to every company, every supplier, and all my bills and bank. <--- that's just normal stuff, but ugh! so frustrating.

but yes, we did move into a smaller home, in hopes to help with the financial overload we've been struggling with lately. I love the new home. it's so cozy! I'm having a hard time finding places to put our many things we have collected over the years, but things are working out nicely. I've donated a few good toys that Q will never play with to a couple local thrift stores and have almost finished her room. it's so cute!

On to our decision making... We saw Quinn's GI doctor recently and did finally get the results of her seizure medication... whether or not she is absorbing. It seems that she is and she isn't absorbing her meds through her stomach. keep in mind that Quinn's seizure meds.. she is on 3 of them and is maxed out for her weight. her Trileptal seems to be ok but her Keppra is very low. We were told that we could increase he Keppra and Zonogran based on if she starts having more seizures. Well, quite honestly, i'm not ok with increasing any seizure meds if she is maxed out since Quinn's motility fluctuates. if we increase, on days when her stomach is acting ok, we would be overdosing her. So, if she starts getting seizures again, we might have to find a new way to give her these medications. A bridge we will cross if we have to, but for now we are not at that bridge yet.

Quinn's GI doc gave me some tips on how to manage Quinn's bowels. he wants to try her on this different motility medication, but it is not yet approved for children. it's mainly for adults. It is something that we discussed, but we haven't made any plans about it yet. He said that insurance will likely not approve it for her since it isn't FDA approved for children and so it's a battle we can do without for right now. But basically, you have to actually prove it is working in order for insurance to approve it and I think it would require a hospital stay. For now, unfortunately, Quinn's motility sucks. so what we are doing for her bowels is pretty much the brunt of what we can do. We are adding more mirilax, even though we can't really get the fluids into her that it requires, he said if we just add a lot of mirilax, her body will have a better chance of absorbing it if we just load her up with lots. He wants us to space the dosages over much of the day and we are hoping to get her pooping every day soft poos.

Quinn's GI doc has a good relationship with her surgeon. her surgeon is also the director of pediatric surgery, so I really felt that Quinn is going to be in good hands. He did her nissen wrap and it's actually still intact : ) The GI feels like the J-tube will be very beneficial for her. So, we have come to a decision, finally in this. Quinn's GI doc is a very good doctor and I fully respect his opinion. Her doctors have all discussed Quinn's plan and all of her doctors are in agreement that Quinn will likely benefit from the J-tube procedure. Both for pain and overall quality of health. We are going to go ahead and go through with the procedure. this surgery was in no way an abrupt decision, it has been discussed very thoroughly and we (docs, family, friends) all feel that the benefits outweigh the risks (her seizure medication absorbtion through the stomach is minimal). We also feel that she is currently stable enough neurologically and nutritionally, and therefore would likely encounter minimal complications if any.We are at peace with this decision and are hoping and praying for the best outcome. Right now, we are just waiting on paperwork from her neurologist for the muscle biopsy, what a pain in my butt honestly! It's been 3 weeks and I'm so exhausted from all this. I want this surgery done before we get hit hard with the winter season. It's bad enough being in the hospital, but even worse when it's wintertime. not only are the staff totally overworked and worn out, but also LOTS of bugs tend to make their way through the hospital during winter, so more chances for infection. next week, i'm totally cracking down on the phone calls and will be making sure that the paperwork is finally processed.

 

 Yes, this actually CAN happen! don't ask me how because I have NO clue lol! (that's her feeding tube)

 

 

My Big Girl! Giving her OWN meds!!!