...continued from Thursday, September 29th...
Around 2:00am the ER doctor returned and apologized for making us wait. He said that after speaking with the radiologist he learned that a CT scan would not be as sensitive to picking up a spinal abscess as an MRI, and we would have to wait until morning to have an MRI done. By 3:00am we were finally settled in the same room on the fourth floor that Naomi had stayed in over a week earlier. There was a measure of comfort to the familiar surroundings and the familiar nurses, and Naomi dropped right to sleep. As tired as I was, I lay awake fighting with an uncomfortable recliner and going over and over Naomi's situation in my mind.
There is enormous burden on the shoulders of parents who have children with complicated medical issues. I know that only I can keep in the forefront of my mind all the medical information pertinent to Naomi's case. I know that I know more than any doctor in this town about the specifics of Naomi's medical conditions. It is a rare combination of rare conditions and the doctors and nurses daily make mistakes that I feel the pressure to protect Naomi from. I stand guard at her beside, and before any medication is given to Naomi now I must ensure that is not an NSAID such as Ibuprofen or Motrin since those cannot be given to patients with polycystic kidney disease. Four times in two weeks I have caught nurses attempting to administer an NSAID to my child on doctor's orders. I must ensure that the medication contains no gluten, dairy, or red dyes. The gluten and red dyes have been nearly given to Naomi too many times to count now though every paper in her chart clearly marks them as allergies, and a bright orange allergy sign lists them above her head. The doctors are all too quick to make decisions regarding Naomi's care without thoroughly reading her medical history, so I feel the need to review and question each decision they make. I finally drifted to sleep around 5:00am.
Naomi was awake again by 7:00am. She had no appetite, but was thirsty and cried when I explained that she couldn't drink until after her MRI that morning. She requested more pain medicine and we waited. At 10:00am the technicians wheeled her down for her MRI. She was quiet and half-asleep as they hooked her to monitors. All was well until the Versed that was supposed to keep her asleep during the scan was injected into her IV. Suddenly Naomi was restless and irritated. When the nurse tried to cover her ears with sticky foam pads to protect her hearing she suddenly flew into a rage. She screamed and covered her ears. I immediately recognized it as a reaction that Naomi has when overtired and overstressed, especially if a certain drug such as red dye or steroids or, in this case, Versed makes her more irritable. I knew at that point that the only chance of her recovering would be for everyone to leave her alone for fifteen minutes until she settled, but the nurses were pressed for time to complete the MRI before the Versed wore off. I stood by, knowing it was futile, as the nurses attempted to soothe Naomi, then chide her, then pin her down and force her to comply. She only grew more violent, kicking and screaming and ripping her monitors off. And eventually, for everyone's safety, the MRI was cancelled and Naomi was sent back to her room.
For the first time in the past weeks of medical mayhem I felt tears in my eyes. I couldn't have been more tired or discouraged or worried about my daughter than at that point. We had stayed in the hospital just to get that MRI, and her care was to be based on its findings. Now what? Back in our room, Naomi's pain increased and her fever spiked again. The nurse paged the pediatrician, gave Naomi more morphine, and scrambled to find a form of Tylenol that didn't contain starch or dye. We finally had to hold Naomi down while we placed two Tylenol suppositories. Eventually Naomi quieted and settled to watching a movie. Around 2:00pm the pediatrician finally came to see Naomi. After seeing her miserable state with his own eyes and finding her quite tender in the back and abdomen, he decided to start her on IV antibiotics, even though the source of infection could not be identified. We also decided to run a CT scan on her back, even though it would yield less information than an MRI, since it would not require sedation or long periods of stillness.
Naomi was extremely thirsty by this point, but I explained that it was her own lack of cooperation with the MRI that caused us to have to run the CT scan and kept her from being able to drink water. She was remorseful then, and promised to try her best to cooperate with the CT scan. Just as I was hopeful that this scan would run smoothly Naomi started clawing at her head. "Mommy!" she whined, "My head itches really bad all over!" Within a minute or so her scalp, face, chest, and arms were covered in a raised red rash. I called the nurse who immediately stopped the antibiotics through the IV and ran to page the doctor and grab a dose of Benedryl. It was five minutes before the Benedryl was in the IV and would take another twenty minutes or so to stop the itch. To my dismay, the CT techs arrived and wheeled Naomi back downstairs while she was still miserable from itching. Vancomycin was added to Naomi's ever-growing drug allergy list.
Naomi cried on her way to CT. She was so tired, so thirsty, the nausea had returned, and now she was itching all over. She wanted to cooperate with the CT scan, but she was afraid she wouldn't be able to. I was afraid too and wanted to cry with her. With tears in her eyes and a vomit bag beside her, Naomi was transferred to the CT scan bed, and I was forced to leave the room since the radiation from a CT scan is unsafe for my pregnancy. Thankfully, Naomi completed the CT scan well and good pictures were obtained. By the time we were back in our room again her itching had stopped, her fever had dropped, and she was able to fall asleep.
Only at this point did I finally feel safe in leaving her side to get food for myself. In 24 hours the only nourishment I had taken in was water and two cans of Sprite that I had drunk while out of sight of Naomi. I informed the nurse I was leaving and asked her not to give any medications to Naomi while I was gone. I quickly scooped up a chicken sandwich and some fruit and cheese from the cafeteria and hurried back to the room. Naomi was still sound asleep so I sat beside her and quietly chewed and breathed a long sigh of relief.
Around 5:00pm the doctor called to say that the CT scan had not shown any signs of abscess, but it could have possibly missed a small one. The scan, however, did show a thickened bladder wall which could be consistent with irritation or inflammation from a urinary tract infection. Since Naomi's lower abdomen had also been tender the pediatrician proposed that we were probably dealing with a UTI, even though her urine had not shown clear signs of that. He switched the IV antibiotics to Rocephin and said he'd see us in the morning to examine Naomi and talk about the results of the urine culture.
Around 9:00pm Naomi finally turned a corner. Her fever had stayed down now for about five hours, her pain lessened, and she was allowed to drink water, but I wasn't comfortable leaving her in the nurses' care yet. Matt drove home from his job training to stay the night with her in the hospital so I could head home to get some real food and sleep.
Hannah, Emma, and Toby had had a happy day with their Grandpa Eby, and a happy evening with a friend from church watching them. It was nearly 10:00pm when I arrived home. Toby attacked me in a hug, then decided to whine for a cookie, and throw a fit when he was denied. Hannah simultaneously bumped her leg and began crying for a kiss. A quick bed-time followed for them and I collapsed in my bed shortly after that.
Matt didn't get much sleep at the hospital. Naomi's four-hour evening nap had refreshed her and her water bottle that she uses at night cracked and began leaking. Naomi decided to wake Matt hourly to ask for drinks of water. The nurse attempted to help by offering to let Naomi watch TV at 2:00am, a suggestion which Matt didn't find helpful in the least. He wearily headed back to training at 7:00am, and was surprised that he had caused quite a stir by disappearing from the hotel the night before. He wasn't in trouble, but he had a lot of people worried about his safety or the health of his hospitalized daughter.
Naomi was much brighter when I joined her Thursday morning. Her fever had not returned. I was finally able to coax her to sit up, and she was surprised to find that it didn't worsen her headache any. We eventually brushed out her tangled mass of hair and gave her a can of ginger ale to sip. The pediatrician came by our room around noon and we spoke about the possibility of discharging her that afternoon, but the urine culture had come back negative, making it unlikely that the infection had been a UTI. In addition, Naomi's back and abdomen were still quite sore, especially when he pressed beside her spine at the level of the spinal tap. We decided that it was possible the infection was a small abscess in her spine that was responding to antibiotic treatment, and that discharge that afternoon may be premature. He wanted to keep her on the IV antibiotics until Friday morning, and to see if anything eventually grew in the blood or urine cultures and if her back stopped hurting.
Naomi spent the day happily watching a pile of movies. She eventually regained a decent appetite and I was comfortable leaving her for a few hours to take care of some things at home. I left her in the care of the night nurse for the night as well, who called out as I left, "We're just going to be having pizza and partying tonight, don't worry!" I dreamed last night that the nurse had indeed served Naomi cheese pizza with full servings of dairy and gluten, and I was giving that nurse a piece of my mind when my alarm clock went off.
Instead, I found that Naomi had slept well and was just waking up as I entered the room this morning. The doctor came by around 9:00am and said that we would be discharged this morning even though Naomi's back is still sore, pending results of the blood culture. We've now been waiting two hours for the lab to get a 48 hour report on the blood culture to the doctor so that we can go home.
It is good to have a healthy, happy daughter again and to know we may all be home as a family tonight, but I'm not letting my guard down too quickly. There is always the possibility that the infection was not completely wiped out by 48 hours of IV antibiotics and that it may return, whatever it was. Tonight I will celebrate and rest, but it will be hard to truly relax until Naomi is really pain free and at least a week has passed without signs of infection. I just hope we're all truly healthy and settled before this new baby comes--less than 10 weeks to go until that saga begins.