Saturday, June 25, 2011

Back to the Hospital

Dear Son's foot never really got any better and we had a follow up visit with neurology this week. Dear Son was released on June 15th and one of the residents had set up a hospital follow up visit with orthopedic surgery on a day that Dad worked so we couldn't make it. Attempts to reschedule were problematic since the clinic dates were on days Dad worked but we eventually agreed on a follow up for July 13th. We had a neurology follow up visit on Wednesday, June 22nd so we agreed that if there was an urgent issue, that neuro could address it.

As I mentioned, Dear Son's foot never improved despite the fact that he was on two antibiotics (Clindamycin and Rocephin) for 10 days. When Dear Son's neurologist saw his foot in clinic on Wednesday, he ordered us to go straight to the hospital for admission. Dear Son's foot would require a 10-14 day dose of IV antibiotics. He called and got Dear Son admitted, then contacted Infectious Diseases and ordered an xray of the foot/ankle and an MRI for Dear Son. The plan was that Ped Neuro Nurse would be present to turn off Dear Son's VNS so they could perform the MRI. She was leaving for vacation on Friday so we had two days to get this done. The neurologist was leaving on vacation for several weeks so he arranged for another Neuro Attending to follow us.

Infectious Diseases was consulted and they reviewed Dear Son's records and performed some basic lab work. They determined that Dear Son had a Methicillin Sensitive Staphylococcus Aureus (MSSA) and not a Methicillin Resistant Staphylococcus Aureus (MRSA). (A simplistic explanation is that MRSA infection is resistant to all methicillin type antibiotics whereas a MSSA is resistant to "some".) When Dear Son was hospitalized at Big Academic Medical Center earlier this month, the Peds and Orthopedic Attendings treated Dear Son's foot infection as a cellulitis caused by MRSA. The antibiotics they prescribed, while correct for a MRSA infection, were not effective for a MSSA. So Infectious Diseases changed the IV antibiotic to Cefazolin and after the first IV dose, Dear Son's foot started looking better. It has since been a bit variable and today looked worse than yesterday.

They did an xray of the foot and ankle and that was normal however they were unable to do an MRI. Dear Son has a Vagus Nerve Stimulator and to perform an MRI, they need to shut off the device (it's implanted under his armpit and has a lead that goes to the vagus nerve) and use a special head coil so that there isn't any injury to him. Apparently, they couldn't use the head coil because the cord wasn't long enough to be able to use the coil and get Dear Son into the MRI machine far enough to perform an MRI of his foot. The purpose of the MRI was to determine if the infection in his foot had gone into the bone. If it did, then his diagnosis would be osteomyelitis (infection of the bone) and not cellulitis. They discussed performing an MRI with a lower magnet setting however they would not be able to get as detailed images so they nixed the MRI.

Instead, they decided to perform a bone scan. With a bone scan, a radioactive tracer is injected into the IV and once it's disseminated, they take images of his foot in three distinct phases. The bone scan came back abnormal and showed increased blood flow to several areas of the foot however the test could not conclude if the infection was in the tissue or in the bone. I saw the images on the scan since I went with Dear Son for the scan and it was quite inflammed. Dear Son enjoyed the bone scan quite a bit though. There were two young female students present for the exam. He nearly strained his neck trying to look back at them since they were behind him on the table. Finally, I asked one of them to come in front so he could see them. He liked the fact they had to hold onto him in the exam, lol.

Because they could not rule out osteomyelitis, they have elected to treat Dear Son with antibiotics for four weeks. The Infectious Disease Attending will come by tomorrow and we'll map out a plan.

As I mentioned in my previous posts, I never felt really confident that they were on the right path when he was hospitalized earlier this month. I even contacted the pediatric neurology social worker (Dear Son's Ped Neuro Doc and Nurse were at a seminar and weren't available that week) and told her that I thought Dear Son needed a consult with Infectious Diseases and asked how we might set that up without stepping on any of the Attendings toes. She had contacted me the next day about that however by that time the Ortho Surgeon Attending had made plans for discharge and he was confident the infection wasn't a blood clot or bone infection, so I didn't pursue it.

I had extensive conversations today with various specialities surrounding a diagnosis of osteomyelitis versus cellulitis. Overall, I was concerend about a few things:

  • If it were a bone infection, I wanted to know how it was treated-was it treated surgically, via antibiotic therapy or something else? Dear Son is a high surgical risk since there is a risk of respiratory depression from sedation so if a surgery was required, this would present a huge risk. They explained to me that the treatment for osteomyelitis is antibiotics not surgery, unless an abscess is involved.

  • Another concern was if this infection could spread to other areas of Dear Son's body. Specifically, I was worried about a lung infection since Dear Son can't clear his airways, has risks of aspiration, and because they don't think they can save him anymore if he gets a pneumonia. The response from the docs was that we shouldn't have to worry about the infection spreading since it most likely was contained by the antibiotics. Dear Son doesn't have a fever and isn't terribly sick otherwise, he'd be in the ICU. So the good news is that this doesn't appear to be a concern.

  • I also needed more information on what healing would look like meaning how I would know if his foot was getting better. They had told me that his foot would take weeks to heal and that it wouldn't look better for several weeks. Since the color, swelling and bruising wouldn't go away, I needed to understand how I would know if things had gotten worse. So let's say we go home, I didn't want to assume the antibiotics were working and then find out the infection had spread. My biggest concern in this case was that I might miss the fact that the infection had spread and then we'd be in a situation that would require surgery or we'd have an infection so severe, they couldn't save Dear Son. Since I didn't have any experience with cellutilis or osteomyelitis, these were questions I had. As a mother, my main concern is that I need to be able to understand when I need to seek treatment for Dear Son and having a foot that won't look better for weeks makes that task harder.

  • Additional tests. The bone scan summary included a recommendation of an MRI or white blood cell scan to confirm a bone infection. I was interested to see if there was a test to confirm specifically if he had a bone infection or not. We knew they couldn't do the MRI but after some discussion with the docs today, it was suggested that as long as they treat Dear Son for a bone infection with antibiotics for four weeks, that should resolve the issue. We'll have some discussions tomorrow with the Infectious Diseases Attending to see if there is anything else to be done.

They have indicated that they'd be comfortable sending him home with antibiotics via the gtube for four weeks so I suspect we may not be there much longer. I am not certain if they will consult Orthopedic Surgery again on Monday but it appears we are close to resolving this issue.

I just hope everything starts getting better. I am really tired after moving, issues with my Mom and these hospitalizations. I am anxious to settle into our new apartment and relax and most importantly, I hope Dear Son feels better soon.

Some notes of interest...One interesting thing happened last night. Our evening nurse was one that has taken care of Dear Son for years. We were talking and she said that all of the nurses had been talking and that I was considered the favorite patient (well, patient's Mom, lol) on the floor because of the good care and love I have for Dear Son.

The second thing that struck me in the hospital was when I read the bone scan summary. The clinical information on the summary described Dear Son as a "19 year old man"...I couldn't help but think, "What? When did this happen? This is my baby, lol." My how they grow so fast!

And finally, when Dear Son went in for his foot x-ray, the technician said was telling everyone that she remembered Dear Son when he was just a little baby. She's been there some twenty plus years and she's done multiple xrays on Dear Son. It's hard to believe how many of these people remember Dear Son. Even the resident we had in 2009, popped in to see us as well as one of the other techs that was passing by in the hallway. It is wonderful though.


Eileen said...

Glad things are finally looking up a bit - but did they not do that basic labwork and identify the pathogen and what it is sensitive to at the start? Is this more doctors who know better by looking (and not thinking) than the clnical scientists and their very specific tests in the lab? I despair at doctors who don't/can't accept that lab tests do have limitations so you have to take clinical signs into consideration even if some parameters are within normal limits but can also be highly informative as in this case. You need to know the bug to choose the right antibiotic - that is fairly basic!

Hugs to you both!

Dream Mom said...

Hi Eileen! Big Academic Medical Center is pretty thorough on their testing. Yes, they did do bloodwork-both basic, plus others (infection markers) and blood cultures (bacterial and fungal) both of which were negative. All were done on the first admission.

Now then, here's how I'd answer your question, and keep in mind I don't have medical knowledge per se. Dear Son's foot was red, swollen, bruised and presented like a cellulitis. It did not have any pus however or did not appear to have any; they would have had to cut the foot to determine if there was any pus. Without pus, you can't analyze the infection to determine the type. So Dear Son has a cellulitis, which is a staph infection, and Dear Son has MRSA (we know that from previous admissions) so essentially it was assumed and treated ss a MRSA infection. (Dear Son had two MRSA pneumonias in 2006 and required a blood transfusion.)In addition, the antibiotics they used, both the Clindamycin and the Rocephin are broad based antibiotics (if I recall correctly)which would be appropriate to use if you didn't know the infection or for these MRSA infections. They have also used both antibiotics with success previously for Dear Son. Keep in mind as well, that Dear Son was horribly sick, meaning he never had a fever, didn't appear ill, wasn't in the ICU and his white cells and blood work wasn't elevated very much like a raging infection would be. The larger concern was that it wasn't a bone infection and/or blood clot and that isn't very common with kids.

My concern was that they should have done more testing at the first hospitalization and not let him go home with the foot infection since it didn't seem to be getting better.

I hope this answers your question:)Thanks for your concern!

clairesmum said...

Dream Mom - you may not have an official degree in a health care field, but you know quite a bit, including which questions to ask and how to be a polite pest when needed, and when to go right to the top when needed. I'm a nurse, but I would not do as good a job as you are doing!
Can they arrange visiting nurses to come and check on wound healing, or would that be more trouble than its' worth? A good, non judgemental home care RN can be worth her weight in gold, and might ease your burden a bit. Same with some home help. In this state, I think you could be paid as a caregiver, in some of the Medicaid programs that provide care at home to someone who would have to be in a nursing home if they did not have family care and support in the community. That sure describes dear son, and if you could be compensated for your labors of love, it might ease some of your financial burdens. Passing age 18 might have changed his eligibility, if he was not eligible in past. Just a thought.....sending good thoughts your way. Glad he's home again.

Dream Mom said...

Thanks, Claire! What a nice thing to say! Yes, overall, I feel confident in terms of assessing what is an emergency and when to escalate an issue. I do listen and ask questions so that I have a good understanding of an issue. That part does make it interesting at least. As Dear Son disease has progressed, every issue becomes more complex, in terms of diagnosis and in terms of treatment.

I have contacted an agency regarding the caregiver issue.

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