Home from the Hospital

Dear Son was released from Big Academic Medical Center yesterday. They will treat him as if it were osteomyelitis so he'll be on antibiotics for another four weeks. The antibiotics are given every 8 hours and Dear Son gets all of his other medications every 6 hours so essentially, I'll be giving meds 6 times a day (6 a.m., 8 a.m., noon, 4 p.m., 6 p.m. midnight). The antibiotic needs to be every 8 hours so he can maintain the level in his system so there isn't room for any variation there. Giving meds 6 times a day plus getting up to turn him over at night will be a pretty tough schedule on top of getting up at 3:48 a.m. to start feedings on school days. I'll try to take a picture of Dear Son's foot but he's sleeping right now and I can't get a photo. It looks much better than it did when we went in althought it still varies a bit.

They have told me that it will take weeks for the swelling to go down and for the color to return. In a normal person, it might take 7-10 days however in a person like Dear Son, whose circulatory system is compromised, it will take longer. I wanted to know what symptoms would be a red flag for me so I would know when I need to call someone. They told me I need to call them if for any of these three things: fever, increased redness or increased pain.

We have three follow up appointments scheduled: infectious diseases, orthopedic surgery and pediatric neurology. I think we are covered, lol.

It's good to be home. Today, Dad will come over and I will go out and get the shelving for the laundry room.

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:

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  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.




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  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.




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  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.




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  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.

Home

Dear Son was released from the hospital on Wednesday. They did not perform any surgery on his foot and sent him home on two antibiotics (Clindamycin and Rocephin). I am not confident that they are working and expressed my concern several times at the hospital. The Peds Attending stated that as long as it didn't get worse, the antibiotics were working. I mentioned that he has times where his foot looks worse, more red and hot and they explained that this should not happen since it should not be variable. They had the Orthopedic Surgeon Attending look at his foot and he felt that this was the right course of antibiotics and assured me he did not think it was a blood clot nor did he think it was an infection of the bone. This doc has seen Dear Son in clinic once a year for the past two years so I went along with his recommendation. I don't have any experience with this type of infection.

We have been home for 48 hours and there still is no change in his foot. It is still red, still very swollen and the mark they drew around the infected area has not subsided. We have follow up next week.

On a different note, there were a few highlights of the hospitalization. While it was terribly depressing to be in the hospital, the good news was that Dear Son has been 9 months without a pneumonia and that is really the most important thing. Other highlights include:

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  Nurses-All of the nurses were great this time. Perhaps the best in 19 years. They all were nice, did their jobs well and were really helpful. Now that Dear Son is 19, it's pretty hard to change his diaper on the hospital bed since the mattress is quite firm. At home, we have a hospital bed with a foam mattress and I can bounce him a bit when I turn him and it makes it easier. At the hospital, it is very hard to turn him and I needed help for every diaper change. They helped me and it was great. At night, he needs to be turned a lot, on average every two hours; it's not only to prevent pressure sores but because he chokes on his saliva when he's on his left side so he needs to be turned fairly quickly. I had asked if they could turn him at night from 12:30 a.m. to 5 a.m. so I could sleep and they did that. Not only did they take care of this along with any diaper changes, they did it quietly and I hardly knew they were there. I even offered to help at 2 a.m. and they said no! So I actually just went back to sleep and let them do that. The one night nurse was fairly short which means it's a lot harder for someone shorter to move a big man like Dear Son and yet she did the best job. She planned it out to turn him at 2 a.m., 4 a.m. and 6 a.m. and did all of them. She had someone to help her but she was great. All of them did a great job but the night nurses had it the hardest. I made sure to thank each of them for their help.



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  For the ultrasound, we had to take Dear Son to another room. The nurse and I waited while the tech did her job. As she started the ultrasound, Dear Son began to wince in pain. I saw his fists clench and his face grimace. I went over to him and sang softly to him, while holding his hand and stroking his hair. He fell asleep within minutes and the tech did her job and Dear Son didn't feel any more pain. They had explained to me on the first day that his foot would be very painful to the touch, almost like touching an inflammed pimple so I imagine it was quite painful when the tech was pushing on it. In retrospect, they should have offered Dear Son some Tylenol prior to this test to help him with the pain. I am glad I was able to calm him and help him out. It made me smile when I heard him practically snoring once I started singing to him, lol.



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  For bathing, they had a cleanser that you could apply and leave on the skin or wash off. Of course, I opted to wash it off however I applied it with a soothing, almost massage like quality as I gave Dear Son his sponge bath. He had a big smile on his face and it made the whole thing fun. I really try to elevate ordinary experiences into something special to help make life more enjoyable for him and for myself.



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  The best part was towards the end of our visit. Every day, there are an endless number of doctors and residents that come to see Dear Son's foot and poke around on it. I could tell Dear Son was feeling more pain the past few days and most of the time he has a pretty high pain threshold. He rarely fusses for blood draws or for pain in general but when he does, I know it's huge. Anyway, he was trying to be brave and not moan or anything when they touched his foot. I told him after the Peds Attending Doctor had left that when any of the doctors touched his foot, that he needed to let them know if it hurt him. I said the only way they will know is if he tells them. Shortly after that the Attending Ortho Surgeon came in; he knows Dear Son since we see him in clinic once a year. Well, when he touched Dear Son's foot, Dear Son made a noise and I told Dear Son that was good that he let the doc know. I told the doc the story and he told Dear Son that was good that he let him know he was in pain. The whole thing just made me smile.

It is good to be home in our new apartment. Overall, I really like it. It's very pretty. Some of the things that I like are my new kitchen that is larger than my former apartment and has more prep space for cooking. Dear Son and I are going to celebrate moving in by baking a cake for my Mom. Dear Son loves to cook and the kitchen is large enough to get his wheelchair in there. Other things I love is the view. We have three windows that look out to a large tree along with all of the trees lining the rear of the property. We hear the birds singing every morning. In addition, I have a small patio with two rocking chairs. I can see my pink impatiens from my bed so that is a real plus. On an organizing note, I managed to get one closet done with closet organizers put in and I'll show those pictures soon. Dad helped thankfully. And yes, the place is very teeny tiny (650 square feet) and while I do think I can make it work, I must say that 850 square feet was a bit more palatable. I have had to sell or donate a few things that I really liked but don't think I'd like to go any smaller. I still have pictures and drapery rods to hang plus lots of furniture painting to do but it's hard when Dear Son's not in school. He doesn't start summer school until July 5th.

On another good note, we are one step closer to getting my Mom into the nursing home of our choice. There was one that I really liked that required a residency waiver as part of the admission process. My Mom lived out of county and this nursing home is in my county. I wrote a letter to the Health and Human Services Board, plus called and emailed all of the county board members and went to the Health and Human Services Committee County Board Meeting. I signed up to speak to present my case. She was approved! Essentially, this nursing home is better than most and gets high marks; what makes it different from the others is that it is funded in part by the county. I toured the place last month and thought it was the best place for my Mom. The nursing home has approved her admission but it will be a few weeks until they have a bed for her. Our whole family is excited and we have all worked hard on the admission.

Thank you for all of the comments and well wishes for Dear Son. He is fairly happy although still in some pain.

Hospitalization

The move went well and things are slowly getting back to normal. On Saturday morning however, I noticed a 3 x 3 inch spot on the top of Dear Son's foot that seemed unusual. By the afternoon, the red spot had spread, become extremely hot to the touch (even after icing), swelling had increased and brusing appeared on Dear Son's foot. I made a call and was instructed to bring him to the emergency room at Big Academic Medical Center.

We went to the ER and once the Attending Physician saw his foot, he said he would most likely admit Dear Son to the hospital. They started an IV, drew some blood for labs and did a blood culture. He was admitted that evening and started on IV antibiotics.

On Sunday, they continued the IV antibiotics and diagnosed him with Cellulitis, a somewhat common bacterial infection that typically presents through an open cut however Dear Son didn't have any. (All photos were taken on Sunday.)

By the afternoon, around 3:30 p.m. the foot had started to look better however at 5:30 p.m., just two hours later, the redness had spread over his ankle, the bruising had expanded and the swelling had increased. I contacted the Pediatric Attending and they consulted with the Orthopedic Surgeon. The Peds Group started a second IV antibiotic however the foot never improved.

Today, Orthopedics recommeded an ultrasound of his foot. Due to Dear Son's VNS, they opted for an ultrasound versus an MRI. The ultrasound was done to determine if there was pus or fluid beneath the skin. (Typically, for this type of infection, there is fluid or pus or whatever beneath the skin and draining of this fluid helps resolve the infection.) In Dear Son's case however, the ultrasound showed only swelling and no pus or fluid beneath the skin. They came back this afternoon and decided to give another dose of the second IV antibiotic to see if that might help. Tomorrow the Orthopedic Surgeon may do an exploratory surgery to find the source of this infection.

It's really a fluky thing however I am concerned. I do not like the fact that it is not getting better and his foot has now swelling even more and is quite tall. I am also uncomfortable with the bruising since he did not injure his foot in any way. He does not have a fever, which is good however things aren't really improving. We will be there a few more day until they get this figured out and resolved.