Here's how the week went. Tuesday was my birthday, 42nd, and it was spent in school preparing for Substitutes and getting ready for our doctor visits in Ft. Worth. We left Wednesday morning and began the trek. I was so proud that I had found a super cheap motel close to the downtown area. Sitting at the traffic light, hotel in sight, we watch an exchange between a rather scantily dressed lady and three, uhmm, gentlemen. We pull in, finally, and it is NOT okay. I am given the key and head to go and check to see if the non-accessible room is Libby acceptable and watch the lady from before go into the room above us with a couple of fellas. I came back out shaking my head and Rachael is frowning. Apparently the entrepreneurial spirit was thriving in that little hotel. We were able to get out of our reservation and not be charged since we booked an accessible room and none were available. Luckily we were able to quickly call and find an accessible room in our price range with less "business" happening.
We had to report to the Hospital at 6 am and needed to go by the Apple store to get the iPad fixed. Went by Apple, and must say wow- wish we had money to burn, and had to set an appointment. We all had a hard time getting to sleep.
Rough morning, but we made it to the hospital in one piece. No water or food. Libby has a VERY hard time going potty in the mornings, it is like her muscles are so tense when she wakes up that she cannot even let the water flow... Of course, before they could get Libby into the Day surgery room we had to have a pregnancy test. So fun. They tried to hand me a tinkle cup and I handed it right back! Amazing how quickly they can get ya a tinkle hat when you offer to let them hold the cup!
Getting the IV put in- I was ready for the Happy Juice for myself. Sad that they don't offer it for parents as well. :) The actual lumbar puncture took less than 30 minutes and they warned us that she would be out for a long time afterwards. This was our fourth LP and we know better. Libby is hard to keep knocked out. Always has been. She was wide awake by 10:00 and they had actually done the LP at 9:00. When we were able to go back she was a fussy, hungry, sore kiddo. 
I usually don't share the pictures of when Libby is miserable because it is too hard. No one wants to know the icky side of seeking treatment and daily ups and downs. I had a moment after she was wheeled away for the Lumbar puncture of hating it all. Hating every minute that her illness has brought her. Being so heart sick that there are things that my child faces that I cannot take away or make better, much less carry for her. It is not fair that her body struggles every day and I am strong and healthy and able. (Although I am very grateful for the stubbornness my body shows- even at my age...:)) I would take it all for her if I could. This is parenting and I have the same feelings for Mariah. As a mom I would gladly give up whatever I have for my children. Gladly. 
She had to lay flat until 11:00 and then the Physical therapists come in to evaluate how well she moves after the muscle relaxer Baclofen had been pushed into her spine. They tried to give us a bed pan somewhere during this time and that's a "negative Ghost Rider"... At 1:00 the PT ladies were to return to give the final observations and send us on our way. We had the Neurological consult at 2:30 and needed time to feed this kid!! After many questions, by 1:30 I am getting Libby dressed and ready to go. PT came, finally, and we asked to see how her ability to walk is affected. Picture tieing your knees together with panty hose, lean way over to the left, arms are lose and in full command, feet are heavy like they have lead in them....now walk. What we didn't know is that the Baclofen into the spine stops the spasticity and takes the muscular tone from the waist down. It was like seeing John Wayne walking with his knees glues together! :)
I finally got pushy and asked to have her IV removed and her paperwork completed as we had to get this kid out of the itty bitty area and feed her before her next appointment. We were cleared by OT at 1:50, raced to cafeteria, shovelled food in and made it to the Speciality clinic by 2:28. Geez.
Both Dr. Acosta and Honeycutt said that there is no reason that Libby cannot do a long flight. So, if Make a Wish okays Rome or New Zealand we will just have to plan for jet lag and recuperation time!
They also brought in a nurse who is also a patient and has the Brain stimulator's in place due to her Dystonia. We are not there yet. The sweet Megan is doing very well and is able to lead a normal life, working and caring for her children, but we are not there yet. I feel like we need to seek treatment for Lyme before we do anything so invasive.
Wednesday night we made it back to the Apple store and nearly $400 later have an unblemished IPad for Libby. I also bought the Apple care insurance just to be safe. Ughhh. So much money being spent NOT in the budget...
Driving home was not fun. A cold front was/is gripping North Texas and Libby was locked up. Her walk as still sideways and very labored. We stopped in Wichita Falls to eat and gave her the Clonopin- before and after eating. This was a meal where every bite was fed to her since her hands weren't working. Rough to say the least. Libby's walk is back to "normal" this morning.
Home Thursday to realize that a cat had been locked into our bedroom and then commenced the bed washing until the wee hours in the morning. I checked the bank account to realize that we had been overcharged by $160.00 for our satellite bill. Not happy and not a month where this would be okay. An angry phone call later and it will be reimbursed on NEXT months bill. Ughhhh.
I know that there will always be enough of whatever we need. I know that I will always have enough energy for whatever needs to be done. I know that there is nothing placed before us that we cannot handle. I know that I am grateful, always, for Rachael's support and strength. I am grateful for the chance to be grounded at home yesterday and today due to the cold and finances so that we can recuperate. Glad to go and learn more, glad to be at home.
Love and immeasurable blessings,
ileana
http://www.webmd.com/multiple-sclerosis/intrathecal-baclofen-pump more general information
http://www.medtronic.com/patients/severe-spasticity/therapy/index.htm From the company who makes the pump.
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