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.

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.

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.

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.

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.

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.

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.