The White Prison

It’s hard to make plans when you have a special needs child. Their diseases are not predictable, so any vacation/date night/concert plans have to be tentative until they actually begin. Many times over these 6+ years, we have had to cancel plans because Gracie was in the hospital or very, very sick. It can be extremely frustrating for all of us.

We don’t have a lot of vacation plans for this summer, but we had a flurry of activity planned for the beginning of June. Chad makes a yearly service trip to the Pine Ridge Indian Reservation in South Dakota, where he works 18 hour days making dentures and other dental appliances for the people who live on the reservation. I was scheduled to represent my company’s publications department at a legal education conference in Vail. Of course, these two trips overlapped, so I agreed to take the kids (it’s much easier to have them in a fancy hotel with me than spend long days in a hospital dental lab with dad). When we got back from Vail, we would have a few days at home before leaving for New Mexico to see my sweet sister (a/k/a the kids’ favorite Auntie) and attend a program with Amma.

The first week of June went off without a hitch. Although the event was not kid-friendly, the children did a great job keeping themselves occupied while I manned the books table. We spent a lot of time in the hotel’s two pools and three hot tubs as a reward for the kids’ good behavior. It was a lovely hotel, and we had a good time despite working.

We got back Saturday night and started planning for our trip to New Mexico. I would work all day Monday, but had Tuesday off to pack and prepare, and then we planned to leave early Wednesday morning. I was working late Monday evening in order to get everything done before vacation when Gracie said her knee hurt. I glanced over and gasped — her right knee was bright red and hot with infection.

Even though it looked too red to be treated with orals, I still intended to go on our vacation at that point. I texted Gracie’s doctor to ask if I could start Keflex — our emergency antibiotic — and bring her to the clinic in the morning. The doctor agreed, so I gave Grace a dose of the medicine and stuck her in the bath to soak the knee. I had plans to hang out with my sister-in-law’s sister that night, so after getting Gracie out of the tub and dressing her knee, I left.

Chad texted me about an hour later that Gracie was moaning and thrashing around in her bed. This is a sure sign that she’s about to spike a fever; my heart fell. All hopes of vacation went out the window at that point — fever + infection = hospital. Grace continued to spike every three hours overnight. This was a serious infection indeed. Instead of spending Tuesday preparing for vacation, I spent the morning preparing for a hospital stay. We left for the ER after I showered and packed a bag.

The ER doc added a different antibiotic called Clindamycin to the Keflex Gracie had already started. I was concerned about the drug choice, since neither works well for Grace anymore, but agreed in hopes that we could switch to orals quickly with either option. (I still thought we could go on vacation. Silly me.) When we got to the floor, the infectious disease specialist, Dr. PC, came to the room to check on Grace. I expressed my concerns to Dr. PC about the medicine choice, but he disagreed. He felt like Keflex and Clindamycin provided broad-spectrum coverage for staph and strep, the two most common bugs. He contemplated adding Levoquin, another drug that is only so-so for Gracie, but decided to wait 24 hours before doing so. Levoquin provides coverage for a bug that can live in hot tubs.

Gracie continued to worsen at the hospital. Her fevers spiked high and she was miserable, moaning and writhing in the hospital bed. Poor sweet girl… it hurts my heart to see her like that. I kept telling doctors and nurses that I didn’t think the medicines were strong enough for her, that she’s had them too many times already and doesn’t respond to them, but to no avail. The doctors added Levoquin on Wednesday, so Gracie was getting three mid-level antibiotics rather than the one that would have helped (Daptomycin) that I kept requesting. It is SO FRUSTRATING when doctors won’t listen. Dr. PC in particular did not seem to think that Daptomycin would be necessary, but agreed to check again in 24 more hours to see if the Levoquin had helped.

Thursday morning, I awoke at 5:45 am to all the lights on and two nurses standing over Gracie, chatting and drawing blood. My nice-filter was off — I chewed them out for waking her up that way. Their explanation was that the doctors want the night nurses to draw blood so the results would be available by the time they got in. So, waking a kid up at 5:30-5:45 is for the doctor’s convenience — ARGH!!! It was not a great way to start the day. As the nurses left, they cheerfully told Gracie she could go back to sleep. Apparently they don’t understand her (or most kids) at all. Of course she was awake for the day. Who wouldn’t be, at that point?

The day did not improve from that point. Gracie shattered her iPad screen (it’s kind of a miracle that it hadn’t happened before), she sprayed perfumed body spray in her eye, I found out her blood work showed that her infection markers had risen, and then Dr. PC came in. Again, I stressed to him that Keflex, Clindamycin, and Levoquin had all been given to Gracie many times over her life, and they simply were not effective anymore. I again pleaded for him to switch to Daptomycin. He refused, saying that Dapto is for resistant infections and he absolutely would not give it to her, and that his partner would not either. He left the room and I burst into tears. We were going to be stuck in the hospital for indefinite days with doctors who refused to listen to the Gracie-specialist — me. I may not have gone to medical school, I may not see sick children every day, but there is NO ONE in this world who knows more about Gracie than me (well, maybe other than Gracie herself).

The nurse came in while I was crying and he, too, was upset that Dr. PC hadn’t listened to me. He called the patient advocate and went out to talk to the hospitalist — the floor doctor. The housekeeper, a wonderful woman from East Africa, sat with me and chatted. She, too, has a special needs son, and she reminded me that tears wouldn’t help but anger might. I am not really a person who expresses anger to strangers, though; I’m much more likely to cry than to yell. She chided me to wipe away the tears and be strong. She is a wise woman. I composed myself and went back to work on my computer. (What else do you do when you’re stuck in a hospital room all day? I actually had a very productive work day yesterday, despite everything.)

Before long, the hospitalist came in. He sat down and had a long conversation with me. I explained to him what I’d told Dr. PC — that Gracie has had Keflex, Clindamycin, and Levoquin many, many times in her life, and they simply are not effective for her anymore, at least not on more severe infections. I asked him to think of her as a 90-year-old cancer patient instead of a 6-year-old. He said, “Well, I don’t have 90-year-old cancer patients, but I do have 9-year-old cancer patients, and I would use Linezolid for them.” Linezolid is one of the drugs Gracie has had before also; it does work for her and is a step up from Keflex/Clindamycin. He was concerned that if we went to Dapto, we would have nowhere else to go. I agreed, and noted that each time she gets a drug it is a little less effective for her, so we need to save Dapto for times when nothing else will work. After about 15 minutes or more of actually listening to me and formulating a plan together, the doctor agreed to change Gracie’s antibiotics. He would keep Levoquin to address any possible gram-negative bugs that live in hot tubs, but switch from Keflex and Clinda to Linezolid.

I was cautiously optimistic that this plan would work but also worried that we’d farted around for too long without adequately treating the infection properly. Even though the three antibiotics weren’t working well enough to cure the infection (obviously, since her fever and the redness continued to worsen), they were helping a little — they kept the infection from exploding and instead kept it to a slower crawl. Gracie got one dose of Linezolid yesterday afternoon and one dose overnight.

Today is Friday. We have been in the hospital since Tuesday morning. But I’m happy to report that today her leg has noticeably improved. YAY!!! It is the first day she hasn’t worsened. The redness is significantly less pronounced and she feels like her normal temperature. Her knee is still hot but that’s to be expected. No fevers and less redness means the drugs are working. Hallelujah! I’m so relieved. She will probably be able to go home tomorrow, and maybe today if the docs really want to get rid of her (we haven’t seen them yet this morning).

The moral of this story is that doctors really, REALLY need to listen to parents. We may not have medical degrees, we may have learned the medical lingo as a second language, but we are the experts in our own children. I’m grateful to the floor doc for really listening and for changing his plan based on my input. I’m worried about our continued relationship with Dr. PC; I don’t know if we can work with him again, and infectious disease is a specialty we need to have a good relationship with. We may switch back to the adult infectious disease specialist who saw Gracie in the interim between Dr. D and Dr. PC; I don’t know, though, if she’ll even agree to see a pediatric patient. We may just wait and see what happens before making any decision. But for now, we are on the right path. Thank the good lord.


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