Last Night in Minnesota

Our Mayo experience is coming to an end. It feels like we've been here a year and not almost 9 days! Overall, it's been a great experience to be a part of the medical marvels and miracles that go on here. Here at the Ronald McDonald house we've met families who's kids are here for heart transplants, chemotherapy, gastroenterology studies, growth clinics, and various other surgical reconstructions. The vehicle licenses in the parking lot tell a bigger story of how far people have come to see the doctors here.

Nathan got clearance from all his doctors to leave the hospital today. The bacterias are still growing, but stayed at just three...and so they feel confident that we are fighting them the best way we can with the oral antibiotics, and we can do that anywhere, right? We'll have to have more blood work and x-rays in a few weeks to make sure that his body is fighting the bacteria so that it doesn't attack his new hip. Bacteria and infection lend themselves extraordinarily well to artificial joints and prosthetics. But we didn't come all this way to have some bacteria compromise the new hip. That bad boy better stay good for 20 years, sans infection!!

He has classic surgical hose that he has to wear for six weeks and an arsenal of meds...and generally, a good attitude, when he's not sleeping off his narcotic haze. (Don't kid him about men in tights...he doesn't think it's funny).

He's loving the Sleep Number bed at the Ronald McDonald house. He was very pleased to finally get comfortable on his good side. A walker was delivered to the hospital today for help transitioning him home. I'm not sure how that's all going to work yet, because I only have 2 arms...but I have to remind myself that is why we have the brother that's just a minute younger, along for the ride.

The boys both wanted to see a movie this afternoon at the theater near the hotel. The Avengers was playing during the "rush hour" special. I wasn't sure if Nathan was up for it, but he assured me he was...or at least the kid that was high on oxys thought so at the time. Great movie. And only one downside to going: a physically-challenged kid in pain that has to go to the bathroom right now with only mom to help. So I dragged his wheelchair into the ladies restroom and I heard how embarrassing it was for him the entire time we were in there...actually all three times we were in there ;)

I caught Cameron doing his homework tonight. Good thing, right? More like it's about time! He got an extra four days here, and he's still not done. He's the ultimate procrastinator. And then he had the audacity to whine that Nathan hadn't done any of his yet! Oh--as if!!

Tomorrow we start the journey home. There's going to be lots of sitting and rolling around, not to mention that we'll be getting our lost two hours back. (Yea...here's to waking up at 7am, but it's really 5am!) I have this little wish that I can keep it together for 1500 miles with a kid that's either high or in pain, 4 pieces of luggage, 3 busy airports, 2 carry-ons, and one wheelchair. (Almost sounds like a song....) I'm arming myself with a slew of pain killers, blood thinners, extra rubber gloves...and a cold coca cola (post TSA scans, of course). It might take all day, but we're ready to come home!

Unconventional Dilemma

We thought we were going home with a pic-line and IV therapy for a month or so. It looks like we may get out of here without it. The bacteria that caused such drama in Nathan's health care planned has mutated and produced two siblings...Viridans and Neisseria strep. One of those bacterias come from the mouth and the other is also found on the skin. Since it was a combination of three on the culture, they have decided that they are "contaminants"and not just a conventional bacterial infection. And since the surgeons don't want to classify anything going "wrong" in the OR, it's still classified as an "infection", although his bone and tissue looked normal except for the dead femoral ball. Nathan had slightly elevated sed-rates, so when the surgical team and the infectious disease got their heads together, they decided that if it was "contaminants"--they should give oral antibiotics for two weeks; yet he also had an infection, which should be treated with IV therapy for 4 weeks. The cause doesn't match the effect...and since they are all on the fence as to the cause and exactly what is going on--a compromise has been reached. We are going with an oral antibiotic for six weeks, unless the cultures in the morning present another issue.

We've been visited by the discharge team. A walker is being delivered to the hospital tomorrow and we have scripts to pick up a wheelchair and shower bench, once we are home. Things are moving along. We need to make appointments in Spokane for blood tests and follow-up x-rays in 6 weeks. Nathan won't be able to detect a noticeable change in the length of his leg just yet. The muscles on the left side have been significantly reduced with the failing hip, so it may take up to a year for that side to strengthen and elongate to match the other side.

Nathan keeps asking what his pay-off for being in the hospital is. (Too much monetary talk with Cameron, obviously....) I told him that he's not getting paid in money, but in a life that's pain-free and without a limp. What more could a kid ask for? $5? $20? No amount of money can pay for the quality of life that Nathan will have now.

Staph=Staying Longer

We saw our Pediatric Infectious Disease doctor, Charles Ruskins, today , with some updates on the staph bacteria. He started talking about all the options that we could take, but each of them seem to circle around us being in Minnesota. I told him that our reservations to return home are for tomorrow--and he said that Nathan won't be able to leave tomorrow. I asked him how long Nate will need to be on the IV antibiotics...and after consulting with Dr Trousdale's resident...it won't be any sooner than Tuesday. If the bacteria was caused by an infection in the bone--then it was best that his femoral bone was removed. If it was present from contact with the skin...then the time frame for treatment could be different. What it all boiled down to was that Nathan definitely has Coagulase Negative Staph and they are continuing to culture the bacteria to check it for susceptibility. He'll continue on the Vancomyacin and there won't be any definite plans for release until Dr Ruskins talks to our surgical team on Monday. The original plan was for Nathan to be released today and fly home tomorrow. But with this latest development, we can't go home tomorrow, and Nathan is bummed.

The antibiotics are potent and Nathan lost his good IV site this morning. Infiltration is a dirty word in the medical field. It took a specialty team to set him back up with another one. The doctor mentioned a pic-line for the Vancomyacin, but would decide if that might be a better route to go down with his other doctors on Monday. Thank goodness for numbing creams and distractions. The nurse put ice on his other arm to get the swelling down.

Physical therapy came today and got him out of bed. That was a challenge. But he knows how to use a walker and position himself in the bed. It still took almost an hour to go 8 feet. He had a nap in the chair and made it back to the bed in time for medications.

I took a leap of faith, and rebooked our tickets home for Wednesday. Southwest rocks!! The first call got me no where. I was given the customer relations number, which only operates M-F, 7-5pm Central standard time. So I called back and got somebody different and she worked wonders. I explained the situation and she put me on hold for a few minutes. She came back on the line and said that everything was taken care of, that we had the exact same flights and times, but now leaving on Wednesday! I was kind of stressed about the cost difference with a three day notice. She said that Southwest would honor the same discounted fares because it was a medical emergency. That saved us almost $800!!

While I was on the phone, a nurse came around the peds floor handing out Get Well balloons. Some nice lady went and bought a bunch of balloons and brought them to the hospital for the nurses to hand out to all the kids here today. I thought that was pretty awesome and so uplifting. I've never seen anything so anonymous and random while Nathan's been hospitalized before...and that's been quite a bit!

Earlier in the day, a volunteer came to each of the kids' rooms and let each kid choose a cute stuffed animal. The stuffed animals were donated by an organization called Allie's Friends Foundation. They are intended to comfort children during medical emergencies. It's amazing to me how people take their own traumatic experiences and become inspired to do something for others who may be in similar circumstances now. The Ronald McDonald house is full of things for the families that have been donated by generous locals. Yesterday, Nathan and Cameron each received a fleece blanket and cool pillowcase, probably made by somebody's grandma that had stayed there before.

We've seen many ethnically diverse people in this hospital. And the little Amish girl loved her stuffed pony as much as the Somalian boy loved his stuffed elephant. And the boy from Spokane picked out a puppy...because he misses his. (Cameron picked out the grizzly bear because it reminded him of the one he just read about on the Internet that had been saved from a fall from a tree, only to be run over by a car later.)

Tomorrow holds the answers for the questions of today. We're hoping for good things to come. We've seen other obstacles overcome in shorter periods of time...so here's to dead bacteria!

L...M...N...O...P

L...is for "lengthening" his muscle. Nathan's femoral head is dead and the muscle is automatically trying to remodel and support his body. That means it's trying to calcify and turn into bone. Since the last surgery a few weeks ago, he's been on a really high dose of anti-inflammatories to fight against that and the severe arthritis in the hip. Since being admitted last week, he's on another form of that same kind of medicine--but he's also in traction to pull the muscle out by putting weight on the end of his leg for 10-12 hours at a time.

The daily hydrotherapy also seems to be working for his good. The water relieves the pressure on his hip and he's able to move and extend in ways that he couldn't otherwise. The 3 pins they removed last month had become impinged, dragging down his hip socket and limited his range of motion to about 20-30 degrees. It must be wonderful to move around after being "unpinned"...literally.

With half of his day (or night) in traction--and the other half playing various computer or animated games with fellow patients, he's pretty tied up (pun intended ;)

We had an appointment with the only doctor in Spokane that could do the work on his hip that's needed--and they blew us off when we showed up on Monday. We made the appointment as a "private" patient (with private insurance....) and the nurse coordinator told us we were "late" for the appointment and that the doctor would see us at Shriner's on March 15th. We weren't late. They just didn't want to see Nathan outside of Shriners'. But we did not schedule the appointment as a Shriners' patient. I started in on the poor lady and Jeff calmly intervened. We've been told about the hospital politics and contracts negotiations between the two hospitals...but I DO NOT care! Pain is our problem...not the Politics. And when there's only one physician in the matter that has the skills to address Acute Vascular Necrosis in a child--and we are willing to pay him the going rate with full insurance coverage and deductibles--we want IN when we are scheduled and not some bullcrap excuse that Nathan will be seen MARCH 15th at Shriners' instead! (Furious doesn't even begin to explain how angry we were at that moment!)

Needless to say, we went back to Shriners' and I had a melt-down. It was time to regroup and go back over the options. Jeff had to leave for Seattle for the week...and I started working with the care coordinator at Shriners' on the next step in getting Nathan out of pain. Dr. Tompkins had mentioned the Mayo clinic at the pre-admitting appointment in mid-February. I mentioned this to a couple of friends, one of which, her husband trained there. I e-mailed him for some referrals and he e-mailed back some names of orthopedic surgeons that he had worked with, that perform pediatric hip replacements. The procedure is so rare, that it's very difficult to find a good and experienced surgeon in this field.

After Darlene Ramelow, the nurse coordinator, told me that "the sign" was written on the wall as to what our next step should be...I finally called the Mayo Clinic Monday afternoon and got the ball rolling. In fact, I know it was the right move, because the ball start rolling very quickly. We already have patient ID numbers, all medical records have been sent, and the surgeon is reviewing the x-rays on Monday. We expect a call Monday or Tuesday with check-in dates and surgery times. The doctor, whom our friend recommended, is Dr. Robert Trousdale, and is reportedly very tender-hearted, according to his staff--and will likely bump us ahead of his already scheduled patients. He is booked well into May, but there's a strong probability that we'll be going to Minnesota sometime in March or April.

M is for...Melt-down, Mayo, Molly and Minnesota. The Mayo Clinic wanted to know if we wanted medical transport from Spokane to Rochester, MN. Ugh. I can only imagine what a medical (non-commercial) flight would cost...but as one of the PAs at Shriners' suggested--we should charge it back to the surgeon who blew us off this week. And since Monday, Nathan has been researching airfare and the airlines that fly there from here to there--as I'm sure that we will be flying commercially, just so Nathan can enjoy the novelty and "ride". We aren't sure if he's more excited to be pain-free or go on his "first" outing via an airplane. [Sidenote: Cameron has been crunching the numbers to see how much it would cost to take everybody. Agh.......right!]

The Chief of Staff, Dr Caskey, mentioned trying to get Dr Lovell in to see Nathan prior to his scheduled date of March 15th. I wasn't there when he did his rounds, but according to the nurses--no one's confident that that will happen. Ironically, it makes me feel better to know that the doctors at Shriners' are just as frustrated with this specialist, as I am. I'm still trying to work out what kind of surgeon would leave a kid in this much pain month after month.

N...is for Nathan. He's a trooper. He's taking everything in stride. He's getting a little stir-crazy and begs to go for a ride. No can do without a doctor's note. So he's changed his tune and wants things brought in, calls home incessantly, and thinks that going to Minnesota will be like going on a vacation. And with the promise of pain relief--it just well might be.

O...is for "Oh well", operations, orthopedics, and orthodontia. Nathan only had one request, besides wanting a Jamba Juice everyday--and that was to see Molly. Ashley stayed home from school to sit with Nathan today because I was running the other three around to orthodontic appointments. So, in the morning, I took the opportunity to take Miss Molly down to sit with Nathan in the truck for half an hour. It got a little crazy on the backseat. The boy and the dog lapping at each other's faces was a little gross, but they both were ecstatic to see each other.

P...is for hoping that Nathan is going to become a Pain-free Patient. We've been told that once the hip is replaced, Nathan should experience almost instant pain-relief. The down-side of the whole ordeal is his age...because that means that he'll have to have a number of hip replacements throughout his life. But technology is advancing so much and the materials are improving likewise. If he gets to 25 years-old with this hip--that's better than one year we've had since it was resurfaced and repositioned in January 2011.

P...is also for Prairie View. Yesterday, he had 2 visitors from his school...Mrs Royster and Mrs Pittz. They are working on getting a liaison with the district to get Nathan a tutor and start doing "school" while he's tied up in the meantime. He was glad to see them, but not so thrilled about their news and having to get back in the swing of things. Lazy boy! Too bad math and reading isn't as fun as playing video games or working out in a jacuzzi pool. He's looking forward to seeing some friends from school soon.