Posted on December 23, 2013
Posted on December 23, 2013Hi all!
So it has been a quite a bit since our last update. The Neurologist appointment went much better than the last ENT appointment... the Dr put Nathan on a bunch of vitamins to promote nerve cell growth and changed quite a few medications around, and seemed to be pretty convinced that we will see some facial movement and hearing improvement in 2-3 months! He also said the meds the ENT had Nate on did not take care of the inner ear infection, which is where much of the blood and spinal fluid was leaking out and eventually trapped after his eardrum sealed back off. During his original stay in the hospital, we kept requesting an ENT to address the infection, but they refused to push the referral thru for the inpatient stay, so the infection was allowed to fester and has been really hard to get rid of. After a great week of Nathan feeling much better, his ear has again started to become more aggravated and painful, so I am hoping to get him in to a different ENT or his Primary Care tomorrow to get on some different antibiotics, but it has been pretty hard to get him last minute appointments, being the holiday season and all. I already booked our flights back to Seattle (for January 10th), as I need to return to work, so, hopefully we can finally get rid of this horrible infection so that he can fly back with me for more rest and rehabilitation. If the infection and pressure in his ear does not subside, I will have to push my return home back again, as the Doctor thinks a flight in his condition would be unbearably painful with the pressurization of air travel. We have a couple more follow-ups booked from January 6-9th, one with the Neurologist, ENT, Primary Care, and an EMG scheduled (although, we may have to cancel that, as the medical costs have gotten pretty insane). Medicaid has still not gone thru (they keep telling me that it will be 3-4 months).
On the upside, Nathan had been having some crazy knee and ankle swelling and pain that we spent several days dealing with in tests and appointments that went away completely when the Neurologist changed his steroid... we have now been successfully tapered off steroids for 12 days! Also... I have been working on planning a benefit for Nathan in downtown Saint Pete with the owners of The Bends, so we will be ironing out all of those details the next few days.
So, again, we wanted to say how lucky we are to have all of your support, and want to wish you all happy and safe holidays... all the love and thanks in the world!
Posted on December 5, 2013
Posted on December 5, 2013So today was nothing short of trying. Nathan could hardly sleep a wink, as he woke up with some really bad pains throughout the night and morning (I actually thought I might have to take him back to the ER). After a night lacking sleep, we had an early Ear/Nose/Throat appointment, which did not fair as well as I had expected from our last visit. We got some bad news about Nathan's left ear and facial nerve from the ENT MD, who thinks Nathan's left side of his face is permanently paralyzed, as well as his loss of hearing. We have an appointment with a neurologist tomorrow morning, so hopefully she will disagree with the news we got today, and, perhaps she will be able to get us in to an EMG to get a closer look at the facial nerve damage (which the ENT believes to be severed, supported by the last CT images Nathan received)... if not, we may have to wait to get an EMG until January 8, which was the soonest I could get scheduled as of yet.
On a happier note, his balance is getting better and better everyday, and our good friend, Deb, did a short-term memory assessment on Saturday and he did really great, so we just need to remember how lucky we are that Nathan is still around, himself, and able to walk when we have more difficult days like today.
We have all of our paperwork in for medicaid and disability, but the offices keep saying it usually takes between 4-6 months to get covered, so it has been pretty discouraging when the list of doctors we need to see keeps expanding.
Anyway, although belated, we hope everyone had a great Thanksgiving, as it can be so easy to overlook all that there is to be thankful for in the midst of everything that consumes our day-to-day lives. I am so very thankful for Nathan and all of you who have do-nathaned finances, a roof for us (thanks again to Papa Chittum for putting us up and being an excellent cook), plane tickets, your valuable time, love, and best wishes! We couldn't do it without you!
P.S. remember helmets!
Posted on November 19, 2013
Posted on November 19, 2013This weekend was the best so far! On Saturday, a couple of good friends picked us up and took us to go see the new Thor. It was awesome that Nathan could hear well enough out of his right ear to follow an entire film, but I think the loud action scenes caused a bit too much vibration for his left ear, as there is still a lot of fluid in it. Even though his ear was a bit irritated, he still wanted to stay out for a late lunch, so he got to eat some fried food and drink some fountain coke thickened to a goopy sludgy consistency at the behest of his ENT doctor (to prevent accidental aspiration). ick!
Our Sunday outing was the beach with our buddy Holly! Because Nathan's headaches had been so bad just a few days prior, we hadn't been to the beach yet. The sunset was amazing, but the water was a bit too cold for a full wade, so we just dipped our feet a bit. We saw about 10 dolphins! Nathan and I made a promise to ourselves to try to come out to the beach as often as possible (weather and doctors appointments permitting).
Yesterday was a full day spent at various govt offices, working to get Nathan some healthcare. We hope to have everything submitted over the next couple of days! Nathan was a real champ through the whole ordeal, but was pretty pooped at the end of the day. We came home and had a netflix night with a pint of Ben and Jerry's. Nathan is still in bed at 12:30 today! What a bum!! After a big lunch and some medication, we are going to let him rest a bit more and then see if we can rustle him up to go to the park or the beach, as the sun has come out again. More updates to follow...