Hoping for success

February has been a whirwind of a month.  With all of the appointments, tests, procedures and consultations Megan had there is surely going to be some good outcomes.  Hopefully anyway.

Monday we had a emergency consult with the GI Dr. at Shands due to her progressive gastroparesis and weight loss.  I went to discuss a GI Stimulator as the options presented by local GI team were not options for Megan.  GJ Tube is not possible due to all of her allergies and that there is not a single enteral formula that meets her needs for the J tube.  Home prepared blenderized diet can not be used which is what I have had to come up with to be able to give her anything.  The other is TPN which is the insertion of a port so she can be fed through IV.  Not going to happen.  You dont put ports in patients with immune system deficiencies or with increased risk of infection.  Last April we started the immunoglobulin therapy for Megan and did not get a port for that.  Instead of monthly IV infusion we do weekly sub Q at home because of the risk the port posed to her.  Put it in so she can deteriorate from infections and most likely pass away.  We still are on the weekly infusion and will continue to be for a while. 

I was very pleased that the Dr. was thinking the same way that I was.  That this is our option.  While new for ped patients - very new - it gives us hope that she can get some nutrition in as the stimulator will serve like a pacemaker does for the heart, only in the stomach muscles.  It will send electric impulses to the muscles that move the food through to digest  He was so on it that we are already scheduled for pre-op on the 23rd and insertion on the 24th up in Gainesville.  It will be amazing to see what her body will do - and her brain if she is absorbing nutrients, vitamins and SEIZURE medications!!!! 

We also had the urodynamics study done at the crack of dawn on Tuesday morning.  Another procedure off the list....I am not scheduling the follow up until after the GI implant because I am not up for anything else this week.  Worn out.  Megan and I both. 

I feel very guilty that I will be gone Thursday through whenever they say Meg is okay to come home.  Minimum of 2 days - depending on what happens.  I know this story well though.  Have lived it out too many times.  My guilt is for Ryan.  It is really hard on him.  All that went on when he was 5 and 6 with Megan really affected him and his anxiety - separation and in general - is severe.  I hate to have to stir it up.  He wont realize it but it will come out and I am certain there will be some regressive behaviors. 

Have been reading a great book.  Not an interesting topic for most but I am getting a lot out of it.  It is called Families Living With Chronic Illness and Disability.  It is so on for a family like mine with the kids, marriage, normal life, the disability world and the lack of knowledge the rest of the world has or cares not to have when it comes to what supports are needed for the family to survive.  It will also be a great tool when it comes to advocating for Megan and our family.  I realize even more that I should not disregard the needs that still exist outside of Megan or feel weak to need more. 

OMG

Venting here.  I hate doctors offices!!!!  I am so sick of being in them.  And I hate the stupid medical assistants who cant get anything right...........espeially when they are working in an office that is taking care of chronic and disabled children.  Pay attention and follow through on what you were supposed to do so it gets done and I dont have to chase may tail in circles to make sure you do your job.  This is the best.  I am at St. Joes at the Medical Arts Building.  The 3rd floor is all pediatrics and specialists.  Nutrition, mobility, movement disorders, GI, metabolic disorders - basically all the kids being seen there have issues - big ones.  So I am waiting for the Dr. that does the botox injections for spasticity and movement disorders and Megan's feeding pump clogs and I can not get it to work. She is sick with a fever - but we could not miss this appt or else we would be 6 months down the road for a reschedule.  So I make sure we are there.  With her fever I need to make sure she is hydrated and fed - also she has lost 2 more pounds due to more GI complications that we are waiting on the GI Dr.s Med assistant to refer us into Shands on an urgent basis for a GI stimulator so she can digest - which she screwed up - per  my comments above.  Anyway the nutrition is really important.  I go out to the front desk and ask the receptionist for a cup so I can at least get the food out of the feeding bag and give her bolus feeds to keep her hydrated.  She tells me there arent any.  I ask - is there a kitchen that you all use maybe?  A water cooler?  Then I say wait the ped lab is right here - they have to have a sterile specimen cup.  She tells me no.  I tell her why I need it - to feed my daughter and her feeding pump broke(the 60cc syringe I have does not fit into the top of the bag to extract the food and the 10 cc syringe is too short to get in there to get any food.  Besides the fact that it is really hard to do that with a sick crying spastic child with flailing arms without spilling it before being able to get it out and get it into the gtube.  She tells me I cant go to the lab and ask.  I ask her if she is able to....she says no.  She also knew exactly who Megan was because she saw us come in - everyone saw and heard us come in.  She was arching up out of her wheel chair and her arms were extended out cojpletely straight while she was crying and choking on phlem..  I almost killed this woman.....I did not say anything...I just looked at her and walked away in shock.  Can you  imagine?  I felt like telling her I would not pee on her if she was on fire in front of me.  What is wrong with people?????????????????