Friday, September 30, 2011

The Infection (part 2)

...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.

Thursday, September 29, 2011

The Infection (part 1)

This week was Matt's second week of training for a new job near our house. Unfortunately, the first three weeks of training are at a city an hour and a half away from our house. By Tuesday morning, one week after Naomi was discharged from the children's hospital, I was finally feeling rested and caught up enough on chores to take the kids to visit Matt. Naomi had continued to have a mild headache and backache and I had continued to give her prescription pain medication as needed, but I was confident she was nearly recovered.

Excitement built as I packed the kids' dinner and swimsuits for a fun family night at Matt's hotel. At 4:00pm I loaded all our bags in the car and strapped Toby securely in his car seat. I called back to the girls in the house to hurry out to the car. Naomi appeared in the doorway holding her head and mumbling to me. Leaving Toby, I walked to the door and asked her to repeat herself. "Mommy, my head aches really bad again," she complained. I paused a moment, then decided to give her another dose of pain medication and load her in the van. We'd been dealing with headaches for two weeks now and neither she nor I wanted it to spoil our evening.

Naomi's headache responded so well to the medication that neither she nor I remembered to tell Matt about it when we got to the hotel. The hugs and excitement swept us into the hotel room and carried us through the evening. Thinking back now, I realize that Naomi ate little dinner, and wasn't very active in the swimming pool, but her quiet smile hid her discomfort well. After changing everyone into pajamas I suggested that Matt take the kids to the lounge and pop some popcorn while I collected the wet towels and swimsuits.

"Mommy!" Naomi suddenly burst out, "My tummy hurts really bad now! I feel like I'm going to throw up, and my headache is back too!" She tried to follow Matt to the lounge, but quickly retreated to the bed and lay shivering under a pile of covers. "I feel really sick, Mommy. I'm so cold!" she whimpered. Matt and I felt helpless. I had no medication with me to give her and I was confident she'd vomit it back up anyway. She was clearly too sick to ride an hour and a half sitting up in a car seat on the way home. I briefly considered taking her to the local ER, but quickly realized that it would be impossible for Matt to watch the other three kids in his hotel room all night. Naomi did not want to move from the hotel bed, but staying there didn't help her at all. It was a difficult decision to make, but Matt finally carried Naomi to the van and we strapped her into the front passenger seat with the seat fully reclined. We tucked two blankets in around her and buckled her in as well as we could, then put the other three kids in their seats.

I called my parents for advice, then called Matt's Mom to ask if she could meet me at home. Thankfully, Naomi slept most of the way. I kept remembering as I drove how the doctors had said the previous week that they would be much more concerned about Naomi's back pain if she were running a fever. Matt's Mom was waiting when I pulled in our drive. I let her and the other kids into the house and ran back to the van with a thermometer. Naomi shivered while I took her temperature. It was 103 degrees. I quickly packed a few things, said good-bye to the others and drove Naomi to our local ER.

It was a long five hours in the ER from 10:00pm to 3:00am. Normally docile and compliant, Naomi was in no mood to be messed with that night. It took four nurses to hold her down while they drew blood and placed an IV. "It would have been better to stay at home!!" she screamed with all her might, and I knew that it was hopeless to try to convince her otherwise. She was beyond rationality. I just stroked her hair and sang quietly until the nurses left and she calmed down. I was depleted as well after hours of preparation, driving, swimming, and driving again. I ached to sleep, but that wasn't an option.

At 1:00am the ER doctor reported that the initial lab work didn't indicate infection. "It's most likely viral, so I'm comfortable sending her home. Do you have any questions?" he rattled off mindlessly. I knew viral illness was a possibility, but what in the world was I going to do with Naomi at home? Even on IV anti-nausea meds and morphine she was wide awake and miserable.

"Well," I stalled, trying to think clearly, "Naomi's had ongoing headache and back pain for two weeks now--long after she should have healed from the spinal tap. When we were at the children's hospital they told me that they'd be much more worried about her back pain if she had a fever. So, now that she has a fever I'm pretty concerned. I want to be sure she doesn't have an abscess or something in her spine."

The doctor's demeanor immediately changed. "Oh, I wasn't aware of that history," he quickly back-tracked, even though this history had been clearly given to at least two nurses. "Yes, I think we should order a CT scan then, I'll be right back."

...and now, I have to go to bed for the night...I'll continue this saga with part 2 tomorrow...

Monday, September 26, 2011

Joining the Song

Some thoughts from our stay at the Children's Hospital last week:

Beside me sits a little boy, maybe six or seven years old, in a wheelchair. His dusty blond hair is shaved close and his head is wrapped in layers of gauze. His left arm is casted and rests in a sling. His legs, covered in bruises, cannot hide under his short hospital gown. His right arm is wrapped in a foam pad that protects his IV site, but he has no trouble using this arm to shake his maraca to the guitar's beat. Incredibly, his face is smiling brightly. The boy's father sits beside him, smiling at his son, but the father's smile is guarded and weary. I wonder how long it's been since the accident and how long it has been since the father has slept.

Beside them sits another family: a young mother and father with their four-year-old daughter, "Kelsey." I know this family. We met on the elevator yesterday. I had joked about the pile of movies on Kelsey's lap as she rode in her wheelchair. "We've watched about every movie in the library," her mom sighed, "we've been here for over three months." She freely told their story. Kelsey had been born with a hidden birth defect: a weak stomach that caused no problems until it suddenly burst one summer day and sent Kelsey into septic shock. She had nearly died and only recently was well enough to be up and about in her wheelchair. "We're hoping to go home in another four or five months," the mother cheerily summed up. Today Kelsey also smiles and beats the lollipop drum on her lap. I wonder if she even remembers her home or how it felt to swing on a swing or slide down a slide.

Next in our circle are two girls, each with a parent and an IV pole beside them, but like my daughter, it is not readily apparent why they are here. "Jesse" is reclined in his special-needs wheelchair on the other side of me. He has only a nurse to help him beat a drum, but with his eyes to the ceiling and his tongue protruding he beats his drum and laughs. I am surprised when he laughs. I had assumed from his blank expression that his emotions were blank as well, but as he beats harder and laughs harder I realize how wrong I had been. I wish his parents were there to see him laugh.

The lady with the guitar sings softly and we play our instruments softly. She sings loudly and the whole ninth floor of that children's hospital is brought to life with maracas and drums and laughing sick children. I didn't choose to be in that room today. I want to be home with my other children. I want my daughter to be able to walk without pain today. A nurse sees my sad eyes as I look around that circle and leans close to me to say, "That's the thing about working here I guess. I realize that no matter how bad things are they could always be worse." She is right, but I am gripped by more: if Jesse and Kelsey and the boy from the accident can beat a drum and shake a maraca and smile, I have no reason not to join in the song.

Monday, September 19, 2011

Upheld: Pictures of Naomi's Hospital Journey

Naomi has been hospitalized for four days now. She's had some very painful and trying times, but some bright spots as well. Here are the pictures I've snapped of our journey.

Naomi working on Lite Bright Saturday afternoon

Being transferred to the ambulance Sunday morning

Off to the Children's Hospital, where we sat in the ER for 8 hours before being admitted!

In our room this morning (with a pillow pet they gave Naomi) she was finally able to sit up!

Sitting up again and a few more pictures of our 5 star room in a brand new facility.

Naomi's TV and our in-room refrigerator

This is my corner with my own bed, desk, and my own TV
Naomi even felt well enough to visit the playroom and do some artwork

Since Naomi was sitting up on her own without a headache, the blood patch was cancelled this morning. Now Naomi is simply being observed until tomorrow morning to make sure she can tolerate being up and about normally without the spinal headache recurring. Her back is still sore, but not quite as frozen as it was last week. Hopefully her back will loosen up, her headache will not return, and we'll be on our way home tomorrow. Thank you all for continually upholding us in prayer.

Saturday, September 17, 2011

The Brighter Side of the Hospital

A daughter in the hospital for days on end? That's the last thing I need right now...or maybe it's not so bad.

Yesterday evening I drove home for a few hours so I could eat and catch up on chores while Matt got a chance to visit Naomi. I was glad to be home...for about five minutes while I ate and hugged Toby. Then it began. I put away the dinner leftovers that a friend had graciously brought us, loaded and ran the dishwasher, started the girls cleaning up their mess, and went down to the basement to throw in a load of laundry. Just a few minutes later Hannah came running down the stairs yelling, "Toby's in so, so, sooooo much trouble! He broke the mirror in your room and he's playing with the glass!" That got my heart pumping.

Toby was now downstairs quietly looking at his hands, which were both covered in blood. He looked at me and back at his hands, but he didn't dare complain. I ran him to the sink and washed his hands and was relieved to see only two small cuts on his fingers. After being bandaged up I left him strapped into his booster seat in the kitchen, screaming, and I felt zero sympathy for his plight.

The mirror had been given to us by Matt's parents last week as part of a dresser and desk set that Matt had owned when he was young. I thought the mirror would be safer and more useful on the wall in our bedroom than on the back of the dresser in the kids' room. I had moved it to our bedroom and left it against the wall, but hadn't found a chance to hang it up yet (somehow, it's been a busy week). Toby had found the mirror in my bedroom, tipped it down on the floor and, judging from the bent-out back, had probably stepped or jumped on it until it shattered. I removed all the little pieces of glass to the dumpster and vacuumed the room thoroughly, all while Toby screamed and screamed.

"Mommy! Can I get out my boo-seat!" he wailed. "I be a good boy!" But, after lecturing and releasing the prisoner he did not live up to his promise of good behavior. I returned to the basement to finish the laundry and he immediately pulled a chair over to the basement door, closed it, and slid the barrel bolt in place, locking me in the basement! He was not malicious in his intent, he is just Curious George incarnate. He soon realized that he had locked himself away from his own mother and began screaming again and banging on the door, "Mommy! Mommy! I lock the door! Mommy!" I just shook my head and went right on with the laundry. At least I knew where he was, and he did figure out how to open the door again by the time I was ready to come back upstairs.

I tucked the kids in bed, finished the laundry, packed my bags, and couldn't wait to get back to the peace and stillness of the hospital. Amazingly, I slept fairly well in the recliner in Naomi's room, other than the three times she woke screaming in pain because they kept wanting to sit the head of the bed up. I was armed now with clean clothes and snacks to last me a few days. When Naomi slept most of the morning I ordered her a breakfast tray, but then couldn't let it go to waste, of course, and had to eat it myself. Shhhh! In Naomi's words, "They sure do cook good around here."

When I called my mom to see how things were going at the house this morning, she attempted to update me, but had a hard time finishing a sentence without having to yell something at Toby. "Boy, he doesn't miss a beat in the morning, does he?" she observed. But my morning was quiet. It is now my full-time job to keep my daughter comfortable, watch movies with her, read books to her, and keep our family and friends updated on her condition. Of course, I want more than anything for her to feel better quickly and for us to all be home together again...but a little peace and quiet in the hospital has its upside too.

Friday, September 16, 2011

In the Hospital

Naomi before her spinal tap last Tuesday

In the ER Wednesday, unable to straighten her back

Yesterday Naomi's backache had lessened, but her headache had become very severe. The back pain that had had her screaming in pain in the ER she had described as an 8 out of 10. The headache she described as a 9! I didn't immediately recognize it as a spinal headache because it was so long after the spinal tap and because laying down didn't immediately relieve her pain. I rushed to get Emma dressed and out to her bus for preschool on time. Then I rushed to frost and pack the cupcakes I was supposed to bring to the preschool for Emma's birthday celebration. Naomi vomited twice, but seemed to feel better.

I asked Naomi if she thought she could tolerate the ride to drop off the cupcakes since Matt was at work and I couldn't leave her home alone. The ride is about five minutes either way so Naomi agreed to try it, but once she was in the car and on the way she was in agony. I was so flustered that I made four wrong turns and managed to change the five minute drive into a ten minute drive. Then I ran the cupcakes into the classroom and explained that I couldn't attend the party and rushed back out to the van. Naomi cried all the way home and vomited again once we were home. I called the neurosurgery office and had them phone a prescription for an anti-nausea med to our pharmacy. A neighbor agreed to sit with the kids while I ran to pick the prescription up, and I almost left before I realized that I had forgotten I needed to pick Emma up from the bus. My mind was in so many places at once it was in danger of making a major mistake. Deep breaths followed while Naomi laid on the couch and watched PBS and I retrieved Emma from her bus.

When I finally did get home with the anti-nausea med I felt a sigh of relief as she swallowed it with just a sip of water. Now, I thought, she'll be able to settle her stomach and then take some pain meds and we'll be comfortable again. Unfortunately, she only vomited up the anti-nausea medicine fifteen minutes later. As the hours of vomiting and pain passed it was very clear that Naomi had a spinal headache from the spinal fluid continuing to leak out the sight of the spinal tap, and only the hospital could really help her out. Naomi, who by now realized that lying down did help the headache, reluctantly agreed that she needed to go back to the hospital, "but, Mommy," she cried, "how will I get there?" When I offered to let her lay down in the van she objected further, "but how will I get into the ER?"

The neurosurgery office agreed to call ahead to the ER to try to expedite the check-in process. My mother-in-law came over after work and helped me load Naomi in my mini-van lying down, then she stayed with the others while I drove carefully to the hospital. I pulled the van up to the ER doors and informed the registration desk that unless someone brought a gurney out to my minivan Naomi would vomit all over their floor. A technician with a gurney promptly met me at my van and lifted Naomi onto the bed. She was wheeled back to a room where a doctor met us within minutes.

Resting comfortably last night in her own room
He confirmed what two other people had told me, that the normal treatment for a spinal headache from a spinal fluid leak was a "blood patch" where some blood is injected over the hole to form a clot and seal the hole shut until it can heal. However, after some phone calls he told me that our local hospitals are not equipped to perform this on a seven year old. Naomi would have to be transferred by ambulance 3 1/2 hours away to the children's hospital if we wanted that procedure done. Add to that that the procedure is not always effective and could start her back muscles spasming again. Some blood work showed that Naomi's kidney function was declining from dehydration, so the decision was made to admit her to the hospital for IV fluids, anti-nausea meds, and pain meds while we decided whether or not to transfer her to the children's hospital to do the blood patch.

One of the medications that Naomi was given through IV was a bag of caffeine, which is apparently effective at lessening the pain of spinal headaches. It did lessen her pain, but it also effectively wired her until five in the morning! Multiple doctors also tried to give Naomi NSAIDs like Motrin, Ibuprofen, and Excedrin, and I had to keep informing them that she's not allowed to take these medications because of her kidney disease. Instead we ended up with a little more morphine as needed. We were settled into our room around 8:00pm, had a visit from our pastor and his wife, and then Matt came to join Naomi for the night while I went home to rest.

It was hard to get too much rest while caring for my other children, who were obviously feeling the stress of this week themselves. Hannah, who has never once wet her bed, woke up soaking wet and crying in the middle of the night. Not long after that was cleaned up Toby came screaming into my room and was so happy to find me there he insisted on sleeping beside me for the rest of the night. This morning, when I needed to return to the hospital he told me, "That makes me sad," but he seemed to understand that Naomi needed me to be with her and he didn't fuss when I left.

Watching "Black Beauty" this morning...and waiting
Naomi's pediatrician visited our room and agreed to call every anesthesiologist in the area to see if anyone would perform the blood patch on Naomi, but after two hours of phone calls no one was willing because of Naomi's age. We then decided to transfer Naomi to the children's hospital, but after another few hours of waiting those plans were changed. The neurosurgeon who had done Naomi's spinal tap was out of town and his partner relied on the procedure notes that said the tap had gone easily. She insisted that Naomi shouldn't be suffering from a spinal headache since the tap was uncomplicated. She convinced the pediatrician that Naomi should continue to be treated conservatively in the local hospital for a few more days. So now we are stuck in the hospital relying on IV medications to keep Naomi comfortable while we hope that hole in the spinal column heals on its own. If by Sunday no significant improvement is seen, then Naomi will be transferred that night and the blood patch will be performed Monday morning.

My mom is driving out today to help out, but it could be a long haul until we are comfortable at home again. Naomi was just infused with another 500mg of caffeine, so there's not much rest for anyone in the next day's forecast. I'll keep you updated.

Wednesday, September 14, 2011

The MRI and the ER, a Spinal Tap Update

Emma's MRI this morning went off without a hitch other than the sedatives turned her into a drunken sailor for several hours afterward. Drunken, but happy and very funny to watch, which is much preferable to the angry ball of slobberous fury that Toby was for five hours after his MRI last fall.

Naomi initially woke feeling slightly improved this morning. She was able to walk down the stairs and use the bathroom by herself, but within an hour the severe pain had returned. Matt had already left for work so our family friend dosed Naomi her Tylenol with Codeine and a cup of juice as my written instructions had asked her to do. Unfortunately, with no real food in her stomach, the medicine simply came up again within a half-hour. Thankfully, Naomi had a barf bowl beside her bed left from a night she was feeling queasy awhile back, and she grabbed that just in time.

By the time I made it home Naomi was in excruciating pain. She was literally writhing, trying to find any comfortable position. Her eyes were dark and puffy, her face tear-streaked, and she said she was having trouble using the bathroom. At that point I decided that a doctor needed to see her in pain in order to get her effective treatment. Thankfully, my friend volunteered to put her other plans on hold this afternoon. She stayed and tended to Toby, Hannah, and drunken Emma while I took Naomi to the ER.

Naomi winced and cried as she made her way to the van, bent over at a 90 degree angle. She stayed bent as far forward as possible in her car seat and in the wheelchair, but her honest pain helped us get effective treatment more quickly. After the doctor observed her try to walk and listened to her describe and rate her pain she ordered initial IV fluids and some benedryl while she consulted with the neurosurgeon from the children's hospital. When the benedryl made Naomi extremely drowsy, but she could find no comfortable position to sleep in Naomi finally lost her composure. She melted in sobs and screams that probably scared the entire ER ward. I sat beside her and wrapped my arms gently around her and told her it was OK to cry. So cry she did, with no inhibition, like I've never heard her cry before. Her nurse tried to offer suggestions, but Naomi wasn't taking anyone's advice. Finally the nurse brought three extra pillows and we were able to prop Naomi, sitting with her legs crossed, leaning forward on three pillows on her lap. I sang her a few songs and she dropped sound to sleep for about fifteen minutes, with her face in the pillow in front of her.

I snuck in a much needed snack break and a few phone calls before Naomi woke and cried that she just wanted to go home. I assured her that the doctor would give her some real pain medicine as soon as the two doctors had decided what to do. It took three hours total in the ER before it was decided by all tests and exams and consultations that Naomi was not suffering from neurological damage, but muscle pain, and that the appropriate treatment was heavy duty pain meds. Fortunately, those three hours gave the doctor plenty of time to see and hear that Naomi was indeed in serious pain that needed serious treatment.

Naomi was given a dose of morphine through her IV, which brought her pain down from an 8/10 to a 5/10 in one hour. She was still unwilling to move at all, so she was given a second dose of morphine which finally brought her pain to a 3/10 and Naomi was able to straighten her back a little bit and began to smile and talk to those around her. We were discharged with some strong prescriptions for Vicadin and Valium and instructed to try one and if it didn't work, to wait until the dose wore off and then try the other. Hopefully one of the meds will continue to control her pain well until her back can heal from whatever is ailing it.

We are now at home. Naomi can get up and walk cautiously with her back bent only part-way over. She happily ate a snack and is on the couch coloring pictures. She is clearly still in some pain, but is chatty again--chatty enough to boss her siblings around again too, which is always a sign of health. I just hope we don't have too many days of narcotics and sedatives ahead of us before she recovers.

Tuesday, September 13, 2011

The Medical Marathon, and a Spinal Tap Gone Wrong

I knew when the neurosurgeon scheduled Naomi's spinal tap on the day in between an ultrasound for me and an MRI for Emma it was going to be a long week. Thankfully, friends from church have lined up to watch the other kids for me each day and even to bring me an evening meal. I don't know what I would do without their help.

The ultrasound yesterday confirmed that our next baby still looks completely healthy, and is growing a little above average on the charts. This was wonderful news which was unfortunately eclipsed by the phone call I received not five minutes later. I had planned Naomi's spinal tap today for a 9am arrival at the children's hospital, which would've required that we leave home at the reasonable hour of 5am. But the nurse on the phone informed me rather abruptly that the surgeon had had a schedule change and they would now need Naomi to arrive at 5:45am! Since leaving at 2:00am and driving nearly four hours through the night when I am six months pregnant was not an option, I spent the afternoon yesterday finding and booking a hotel for Naomi and I to stay at. When I had ironed out the details of childcare for today and Matt arrived home to watch the other kids, Naomi and I headed out on the long drive, arriving at our hotel by 10:30pm.

I gave Naomi about 10 minutes to savor the new experience of sleeping in a hotel and then we turned out the lights with two alarms set for 4:45am. We checked out at 5:15am and arrived at Day Surgery Registration promptly at 5:45am only to wait nearly a half hour for our turn to check in. The rest of the hospital was dark and deserted but Day Surgery was alive and writhing with hungry, tired, fearful, and cranky children. A toddler girl wrapped in a towel clung to her mother like a baby chimpanzee. A baby with a cleft palate and a tracheotomy fussed in his car seat. Another girl with wandering, unseeing eyes cried for her bottle and refused her mother's calm explanation of "nothing by mouth for six hours prior to check-in." Naomi didn't complain of hunger or thirst, though I am sure she felt it as well. She is used to this routine.

When we were finally given our child-friendly cubicle we again sat for nearly an hour until a nurse came to check Naomi's vital signs. I slumped in my chair and tried to rest and imagined how much I would have liked to sleep that extra hour and a half. Finally, I had answered the long list of usual questions, signed all the consent forms, and shaken hands with the anesthesiologist. Naomi calmly followed the nurse back to the OR, and I headed straight to the hospital's in-house McDonald's for a dollar-menu breakfast. Forty-five minutes later the surgeon met me in the waiting area and told me the tap had gone without incident and that we'd have results in a few more days. I then joined Naomi for two hours of lying flat in the recovery area in order to prevent a spinal headache while the pressure in her cerebrospinal fluid equalized again. I read her a book, we watched some cartoons, and I tried again to doze upright in a hard chair. Finally, Naomi was allowed to sit up and dress. Her IV and monitors were removed, and we were on our way home by 10:30am.

I was thinking about how smoothly everything had gone with the procedure and how early we would be arriving home, and how I might even steal a little nap before Toby woke up. Silly me. An hour and a half into our drive home I pulled off at a gas station and told Naomi to hop out of the car for a potty stop. She was tired but otherwise pain-free, until she tried to stand up. She winced in pain and cried, "Mommy! It hurts to stand up. I can't stand up, my back hurts too much!" Her lower back and rear end were obviously in intense pain and she refused to straighten her back at all. I asked her to try walking, hoping her back just needed to loosen up a bit. She hobbled into the gas station bent over at almost a 90 degree angle with tears running down her face and painfully completed the bathroom break. Once she was back in her car seat she was again completely pain free. As I continued driving I called the hospital, who paged the neurosurgeon. He was surprised and a bit perplexed by Naomi's unusual complaint, but he was reassured that she hadn't lost any ability to move her legs or use the bathroom. He told us to push to make it home, and have her rest there, but to take her to an ER if she began to actually lose the use of her lower limbs.

While I knew paralysis was an extremely remote possibility, I nervously glanced back at Naomi every few minutes as I pushed the speed-limit on our way home. She sat calmly reading her Highlights magazine and swinging her legs, kicking them together every now and then, and this reassured me as I drove. We had to make one more rest stop an hour later and Naomi again cried and hobbled all hunched-over through the crowd at the gas station. I have no clue what the staring people thought of my hunch-backed sobbing child, I don't know what I would have thought. I tried to crack jokes to Naomi about how silly she looked, but she was in no mood to be consoled today. I smiled confidently at the cashier who looked like he was ready to call an ambulance for us, and we finally made it back to the car. One more hour and we were home.

Naomi hobbled inside, but found she could not lay down at all. Instead she sat, half-propped sideways at the end of the couch. Awhile later she could not find any position at all which would relieve her pain. I called the hospital again and wearily waited another hour for the doctor to call back. He was still perplexed, but after reviewing her symptoms he was confident that Naomi was suffering from muscle soreness and not nerve damage. He phoned a prescription in for Tylenol with Codeine and told me to call tomorrow if she wasn't at all improved.

It has been a long, weary night for us. Naomi's back only seems to hurt worse and worse. The Tylenol with Codeine has not helped one bit. Matt gave her a massage and I warmed up a heat-pack for her and these seemed to help some. This seems to support the theory that we're dealing with some seriously cramping or spasming muscles. Naomi cannot stand, cannot lie down, cannot use the bathroom without two people's assistance. Her eyes are puffy and bloodshot from crying and from fatigue. I just tucked her in bed, propped on an enormous pile of pillows that keep her almost sitting upright, and I believe she is finally asleep.

Tomorrow I wake up early to take Emma for a brain MRI. This means neither Matt nor I will be able to be with Naomi if she is still in pain. Thankfully, the friend who is coming to watch the kids is a Certified Nurses Assistant, so she should be as qualified to help Naomi as anyone until I can return. If things do not improve we may end up taking Naomi to the local ER for evaluation tomorrow. The surgeon even mentioned transferring her to the children's hospital if needed. This is very unlikely, but still, these scary possibilities tend to haunt me as I watch her cry hour after hour.

Please pray for Naomi's back to heal quickly. Pray for Emma's MRI to go without incident tomorrow. Pray for rest for my family. Thank you.

Friday, September 2, 2011

MRI Update on Naomi's Pineal Gland Mass

I am so exhausted tonight I will have to be less eloquent and wordy than usual, but I wanted to post this report for those who are following the health concerns in our family.

I was up at 3:00am after only a few hours of restless sleep and out the door with Naomi by 3:30am. The air was muggy and warm, but traffic was light and our three-and-a-half hour drive to the children's hospital was quiet and uneventful. We checked in just after 7:00am, and Naomi was put under anesthesia and wheeled into MRI by 8:00am. We were rechecking what the neurosurgeon suspected was a cyst in Naomi's pineal gland (an endocrine gland in the brain). The cyst has caused no problems so far, except to suppress her melatonin production, which causes her trouble sleeping. We give her a melatonin supplement each night before bed to help her fall asleep.

I actually laid down on a bench in the waiting room and fell asleep while Naomi was in the MRI. I'm sure I looked utterly ridiculous, but that power nap provided me the extra fuel to safely drive home. Naomi woke happily from anesthesia, as she usually does, and we were up to the neurosurgeon's office for consultation by 10:30am.

The neurosurgeon first gave us the good news: the mass has not grown at all or changed shape, it is still not compressing the nearby aqueduct or causing hydrocephalus, and Naomi still shows no sign of it affecting her neurologically--all excellent news. The downside was that they used a dye contrast for this MRI (they hadn't used it for the last one), and the mass showed a distinct highlighted ring around the edge of it, with some fuzziness in the middle. He said this was not at all a typical appearance for a cyst and was unclear as to what it meant. We then waited over an hour while he consulted with the radiologist and his neurosurgeon partner. Finally, the three of them agreed that while the mass is certainly behaving like a cyst and not "something bad," it doesn't really appear to be a typical cyst and that we need to take a cautious approach with it, just to be sure.

The cautious approach means this: we will return to the children's hospital on Sept. 13th so that Naomi can undergo a spinal tap to look for levels of hormones in the spinal fluid that would indicate a tumor rather than a cyst. If these hormones show up the neurosurgeon felt that biopsy of this area of the brain is too risky and we would simply proceed with radiation treatments. He was emphatic that he does not expect this to be the case, but that we are just being extra thorough. If the spinal fluid does not show the worrisome hormones then we will repeat the MRI in six months.

Thankfully, they will put Naomi under anesthesia again for the spinal tap so she will not endure any pain, but she will have to lay down in recovery for several hours to prevent her from getting a spinal headache. It will certainly be another all-day event. The next day I have to wake early to take Emma to the next town over for her repeat brain MRI.

Please pray for smooth procedures, for good results, for rest for me. Thank you all for your prayers.