Before I Take It All Down

I put up my fall decorations right before my surprise vacation to sunny Loma Linda, and now, suddenly, it's time to take them all down. Where did November go? I never really had a chance to enjoy them.  But maybe some of you sweet people who brought meals or gave rides to my kids  were able to enjoy the decorations.    So before I take them all down, I'd thought I'd take a few pictures and post them.

The pictures don't capture it, but most of my fall decor is pretty sparkly.  I know glitz isn't a traditional fall thing, but I love it and had a fun time putting a little bling into my decor.

Those pumpkins are covered in glass microbeads that just glow when the door opens and sunlight hits them.

Fun find.  After Halloween Michael's had all their fall flower arrangements 75% off.  I found two matching topiaries for only $11 each.  They are perfect for those niches, and I love the sparkling butterflies made from feathers.  It's always the details that do it for me.  I also got the glittery "Give Thanks" banner in the after-Halloween 75% off bin.  Go figure.  Maybe because it was orange. It was $2.50.  All my beady garlands and wreaths you see were also 75% off at Michael's.

 You can always get great deals on fall stuff way before Thanksgiving, because the stores want to get rid of it to make room for all the Christmas merchandise.

I couldn't get enough of the luxurious satin orange ribbon.  I use it everywhere (TPT $11 for 25 yards!)

I bought this turkey for $19 at TaiPan (reg. $49).  It was brown resin.  I glitzed it up by spray-painting it, and a few of the small gourds and decorative squash, a shiny metallic gold.  

The pictures are dull, but he absolutely gleams and I love, love, love, my Midas-touched turkey.

This is the first year I really felt like my fall decorations came together.  

Now on to the biggie - Christmas decorations.  Oh my!

Five Kernels of Corn

I love candy corn, and I love traditions, so if I find with a tradition that uses candy corn, I'm doin' it.

Every year my kids make little packets of five candy corns in a piece of netting tied with raffia.

We pass them out to everybody at the Thanksgiving table.  Before anyone takes a bite of the Thanksgiving feast before them, one of us reads this:

Pilgrims had a custom of putting five kernels of corn on each plate before Thanksgiving dinner was served.  In many old Plymouth families, the custom is still followed today.  The five kernels of corn were chosen because prior to the first harvest, things were so bad that the daily ration was five kernels of corn per person per day.  Imagine how grateful the survivors of the first horrible winter were for the abundant first harvest!  The pilgrims put five kernels of corn on their plates to remind them of their great blessings.  Let us also remember.

The first kernel of corn reminds us of the autumn beauty around us.

The second kernel of corn reminds us of our love for each other.

The third kernel of corn reminds us of God's love for us.

The forth kernel of corn reminds us of our friends.

The fifth kernel of corn reminds us that we are a free people.

Another tradition, along the same lines, is the blessing snack mix we make and give to another family.  It is easy, just a matter of dumping the different ingredients together. This is what it says on the tag:

Blessing Mix

This mix was made just for you and your family.

Enjoy it as you discuss the blessings that the ingredients represent.

Bugles (chips)- shaped like cornucopia, it represents the horn of plenty.

Pretzels - represent our arms folded in thanks and prayer.

Candy Corn - during their first winter the pilgrims were each allotted 5 kernels of corn each day as food was scarce.

Dried Fruit - Thanksgiving is the celebration of the harvest.

Nuts and Seeds - Seeds represent the potential of a bounteous harvest for the next season of they are planted well and tended.

Happy Thanksgiving!

Even though this Thanksgiving was the craziest ever for our family, these traditions are too simple and too important not to do.  I'm so glad we did, because this year, more than ever before, we needed to be reminded of how much we have to be thankful for.

Meanwhile, back at the ranch...

So while Dennis and I were back and forth to the hospital, life continued at as close to normal for everyone else, and a lot was going on.

The middle school had a special honor roll assembly, and both Alex and Nathan were recognized.  I missed it, of course, but I was there in spirit, and they both know how proud I am of them.

Nathan got a gold award with a GPA of 3.86.  Can you believe he missed straight A's by one B+?

Next time, for sure, Nate.  Not bad for his first quarter in middle school.

Alex got a Silver Award for his GPA of 3.71.  He, too, only missed straight A's by one grade.  We are so proud of him, as it took a lot of hard work on his part to make those grades.

Alex also got another another very special Character Counts Award for Responsibility.  That fits Alex to a T.  He is extremely responsible with his homework and schoolwork.  He comes right home, shows me what he needs to do, then gets right to work.  He is organized - something he did not inherit from his mother, and works so hard.  I am so proud of him, and am grateful that a teacher recognized this trait in him and recognized him for it.

Also, Caleb had an Indian pow-wow in his Kindergarten class on Tuesday.  I was absolutely exhausted Monday after getting home from the hospital.  When I found out Caleb needed an Indian vest for the next morning, I was ready to just cut arm holes in a brown paper bag and call it good.  But Caleb was less than thrilled by that idea, so I pulled myself up by the bootstraps, and helped him make his own Indian vest with a scrap of faux suede I dug out of the garage.  He decorated it with Indian symbols.  He was thrilled with it. He wanted to wear it to bed and was so excited to go to the pow-wow.  Now I am so glad that just I made the effort to do that for him.  I know I would have regretted it if I hadn't.  The whole world doesn't come to a screeching halt because one kid is sick.

There was also a belt test for taekwando while I was away.  Caleb got his orange belt, Dennis got his senior green belt, and Nathan got his red belt, which is a really big deal.  Dylan would have received his red belt too, if he wasn't tied up in a hospital recovering from surgery.  Poor Dylan.  He'll be up and kicking soon enough.  Unfortunately I have no pictures of the belt test, since I wasn't there to take them, but I am proud of my guys, and I know they did great!

Pediatrician Please

I am in the market for a really good pediatrician, the kind of pediatrician that actually listens to the mom, the kind of pediatrician who actually reads medical journals and uses a computer, the kind of pediatrician who has heard of MRSA and doesn't dismiss everything as a spider bite.  Is that too much to ask for? 

 I need this doctor ASAP.

Any suggestions?

Home!

My sweet Dylan is home!  

After 18 days, two hospitals, an ambulance ride, two surgeries, two procedures, dozens of doctors, two MRIs, two eco-cardiograms, several ultrasounds and x-rays, 3 IVs, a picc-line, and a whole lot of blood tests - Dylan is finally home.  (This whole time Dennis has been saying "Man, I'm glad we've got good insurance!"  If you need better insurance, I know a guy.)

We are all back under the same roof, the roof of home, and I finally feel whole again.  Up until now I felt like I was being torn in two.  When I was with Dylan at the hospital, I missed my kids and worried about them, and when I was at home, I hated that I was not at Dylan's side.  And Dennis, well, we have just seen each other in passing for almost 3 weeks.  How I missed that man!  We needed each other so much during this crisis, but Dylan needed us more.  That's what it means to be a family, and that is why being back together again is so sweet.

Dylan is happy to be home too.  He is back, our same funny sweet Dylan, back at home, and back to being himself - laughing, chatting, threatening to beat up his twin brother as soon as he is able.  I can see how coming home really is the best medicine!

It has been a very long day trying to get that kid home.  I left at 8 am to go to Loma Linda.  We had to wait for this and wait for that.  Then we needed a last visit by the physical therapist, the occupational therapist, and a few doctors.  An at-home nurse came to teach us all about the picc-line and train us how to administer the IV antibiotics.  It was all really overwhelming for me. Then we had to wait on some paperwork, wait for a delivery of meds, and then fill another prescription, but that prescription was for pills, and Dylan can't swallow pills, so he had to have it compounded in liquid form, which take 90 minutes, but not until it was approved by the insurance company, which took an additional 90 minutes, and so on.  At 4pm we finally got out of the hospital and packed all the stuff into a small car, when I realized we were already a half hour late for his medication, so we had to unpack the car to get the meds and the instructions so we could give Dylan his IV, then get all packed in the car to go home.  It was pouring rain and the traffic was really backed up due to the holiday weekend.  We didn't get home until after 6.  My kids, my parents, and my sister, Mindy's family, all the way from Oregon, were here to welcome him home.  Dylan was the center of attention, and he loved it.

As glad as I am to have that kid home, the reality of what that will mean to the operations of our family are beginning to sink in, and I am feeling overwhelmed.  Dylan came home with a wheelchair, a walker, and crutches, so he is pretty much set with getting where he needs to go.  We also got 3 large boxes of IV meds, syringes, and other medical supplies I will need to use everyday, and a lot of instructions.  Whoa!  

Here is the breakdown.  This is life for the next 12 weeks, mind you.  (It is 12 weeks, because the infection is in his bone, and it is really tough to eradicate when it is in the bone.)

 Dylan has 3 antibiotics.  One is every 12 hours, one is every 8 hours, and one is every 6 hours.  They each take about an hour to administer, and only one can be administered at a time.  (Sounds like a math problem, doesn't it?) Each time, at the appointed hour, I have to wash my hands really good, put on gloves, sterilize the IV junction with an alcohol wipe for 30 seconds (that is a lot longer than you'd think) then you have to attach a syringe of saline and pump that in, then you have to attach the IV medicine, unclamp it, and let it do its thing.  After the hour, you have to unhook it, clean it with the alcohol again, flush it with another syringe of saline, and then another syringe of heparin, which keeps the line from clogging, and clamp it, then Dylan is good to go until the next IV is due.  It isn't too complicated and I'm sure I'll get the hang of it, but right now I am just a bit nervous about doing something wrong.

Here is his IV schedule: 5 am, 8am, 11am, 4pm ,5pm ,11pm, and 12 midnight. Plus oral medicine twice a day.   I'm thinking those 4 and 5 pm ones are going to be great - right in the middle of that crazy homework/prepare dinner/practice piano/taekwondo time.  Oh and the 11pm, midnight and 5 am are going to be fun too.  Remember that means I have to stay up until 11 to give the IV, and then midnight to do another one, and then wait up another hour, until 1am, to unhook it when it is done.  Then be back up at 5 to do it again, go swim fast so I can be back at 6am to unhook that one.  Got it?  I still don't.  Yes, I am a bit overwhelmed right now trying to figure out how I am going to fit this into our crazy family schedule for the next 12, that is twelve, as in a dozen, more weeks; that is 84 days; 3 full months; a quarter of a year; all winter long!

The great thing is that Dylan will be able to sleep right through all of it.  Not me.  I think it will be like when you have a newborn and you don't get adequate sleep for 3 months, and you look so... pretty and feel so... energized.  We moms try hard to forget that stuff, but its all coming back to me right now.

Right now it is 10:55 pm.  I am trying to prop my eyes open to wait for 11 so I can administer the IV.  I am exhausted.  I am NOT a night person.  Dennis is fast asleep on his own bed after sleeping in a chair for the last several nights, poor guy, and I am not about to wake him up to do it.  I'd really like to be in bed next to him for once, but alas, that will have to wait.

We also will have a home nurse come once a week to change the dressing and draw blood.  We need to get a physical therapist and a home studies teacher, and we will be making lots of trips back to Loma Linda for follow-ups.  

BUT, that is all infinitely better than him being in the hospital far from home.  He is happier, and is feeling better, and that makes me so much happier and feel so much better, myself.

The fear of the unknown, the excruciating pain, the loneliness and longing for home - those are all gone, swept away, when we stepped (or in Dylan's case, hobbled) through the door of our home.

Home is the miracle cure, the balm that soothes the wounded body and soul.  And for that we have so much to be thankful.

  

Pins and Needles

I left the Hospital Saturday night.  Not Dylan.  Dennis is with him now.  It was so hard to leave him.  But I knew he was feeling better, and in good hands, so that made it easier.  I came home and slept solid from 9pm to 8am, when Nate woke me up for church.  I could have slept longer.  I never sleep that much!

Sunday he was doing well.  We were all happy.

This morning the doctors said they were filing the paperwork to get him home Wednesday morning.  Yay!  This came as very, very good news.  I can't wait to have my baby home, both of them.  Wednesday can't come soon enough.

This evening Dylan had a pic-line put in, a semi-permanent IV.  He was able to have it done without anesthesia, which is good.  But Dennis was told that Dylan would need 12 weeks of IV antibiotics.  Wow!  First I was told 4 weeks, then 8 weeks, and now 12!  I spoke to Dylan.  He was good... and happy.

I just got off the phone with Dennis again.  He said Dylan has a fever of 101.  I guess Dylan had had one last night too - 100 degrees - that he hadn't told me about.  He didn't want to worry me.  I'm worried.  It isn't a high fever, but it is still a fever.

I hate that I am not there.

Now I am sitting on pins and needles waiting to hear what the doctors will say tomorrow.  Still praying, always praying that it will be good news.

I think I'll pack a bag - just in case.

Windows

A Window! A Window! My kingdom for a window!

I have been sitting in this room at my kid's side for over a week now, and it feels like I have been sitting in a cave, and noisy cave with a lot of beeping.

There is a window in this room, but it isn't on our side of the room. It is on the roommate's side. His name is Joseph and he is 14. He gets the window, and we get the door, which works our fine for him since he has been in isolation for two months and thus has no need for a door. Joseph always keeps his curtain closed, for privacy, obviously, so we can't even see the window. But that doesn't matter because Joseph always keeps the shades down on the window. Dylan and Joseph both like it dark for napping and watching movies. Thus the cave-like atmosphere.

I have a book light and spend most of my time reading in the cave. I can use the computer, when Dylan isn't using it to watch his DVDs. My escape is the hallway. There are always lights there, but no windows. I know the halls of the 5th floor well, as that is my only exercise, pacing the hallway, talking on my cell phone or waiting for the bathroom. There are no windows in the hallway, only doors. I can go through a whole day and not catch a glimpse of the blue sky. I don't know if it is dark or light outside. Time mushes together and means nothing.

I did see a window when Dylan was having his surgery and I was in the surgical waiting room. I saw a guy up on a cherry picker putting Christmas lights on tall palm trees. Whoa! I was just recovering from Halloween. Where the heck did fall go? This is a bad season to have several weeks sucked away. I am always stressed out at Christmas, but this one is really going to be a doozy.

We got to see a few windows the day after surgery too. Dylan was in great pain, you know how the day after surgery is always the worst. One doctor ordered for Dylan to get an ultrasound. They sent up a wheelchair to transport him down to radiology. Getting him to the wheelchair was horribly painful, screaming, the whole bit, and sitting up in a chair a day after hip surgery was no fun either. We wheeled down to radiology, we passed a few windows. I think it was day. Apparently they do have windows here, but on other floors, other wings. When we got to the ultrasound room he had to go from the wheelchair up to the bed. Dylan refused. Too painful to have to stand up, turn around then lie down flat. We might as well have asked him to walk through hot coals. We finally convinced him to do it. It was so hard to watch him in that kind of pain! He finally got up on the bed and the technician lifts up his gown to do the ultrasound only to find the his whole belly and left thigh are wrapped in an ace bandage. He can't do an ultrasound through a bandage, and won't remove it. The doctor who sent for the test was obviously not the surgeon and had no idea he was bandaged up like that. The technician could do nothing and sent him back to the room. In insisted on a gurney. No wheelchair. We had to wait for the gurney, then had our trip back past a few windows to the room, again. Someone mentioned the possibility of a doctor removing the wrapping so he could go get the test. I insisted he stay right on that gurney until they knew for sure one way or another. I was not going to let them make another painful move to his bed, just to have them have to move him back to the gurney for another trip downstairs. Finally it was decided that the test could wait a few days. Good. What a fruitless waste of time and unnecessary suffering. At least we got to see some windows.

So anyways, that was our other encounter with windows this week. Didn't really get to sit and gaze out of them.

So when people ask what I need, I say "Can you send me a window?" I really need a window.

We have one picture in this room. It is a big picture of a momma, daddy, and baby killer whales. It is a nice picture, but holds your attention for all of three seconds. I suppose we could put curtains on the picture and pretend we are underwater.

My friend Farai even drew me a window, but forgot to bring it to me. I appreciate the thought, though.

Other people on other rooms have windows. I envy them their windows. I envy Joseph his window too. Why doesn't he just open his window? Even indirect sunlight would be better than nothing.

One day when Joseph got a rare trip out of his room, I took a sneak peek out of his window. I pulled up the blinds and what I saw was not the rolling hills and tall cypress and palm trees I had seen out the window a few doors down on that first morning we arrived here. All that can be seen from Joseph's window is a white wall and some dark rectangular windows. It reminded me of a prison for some reason. No view. Just a wall. No wonder Joseph keeps his blinds down. This hospital, with all of its policies needs to make a simple policy that the isolation rooms must have the best views. This kid has been sitting in isolation for two months and all he has to look at out of his window is a wall. It is beyond cruel! I asked if they have a suggestion box somewhere because I have a few suggestions. They don't have one.

Joseph's view-less window made me sad. I felt bad for begrudging Joseph for keeping the shades down. I didn't understand his circumstance. It was also true in other ways. Joseph is noisy, rude, and belligerent. I was really put off by him at first, feeling sorry for ourselves that we had to share a room with that kid. But the longer I have been here, and talked to him, and looked out of his window, so to speak, I have changed my mind about him. He has not has a single visitor since we have been here, other than his tutor, physical therapist, nurses, doctors and the rest. When those guys come, he messes around with them and causes them grief. I see now that he is just trying to get some attention. He wants them to stay and hang out with him, not just run off to their next patient. His mom calls every couple of days, but it usually ends up with him hanging up on her. His dad is in jail for drugs. He is going home next week not to his home, but to a group home. His only love is football, but three surgeries on his knee mean no more football for Joseph. He had a blood clot and has to have shots in his stomach twice a day. That can't be fun either.

Now that I understand Joseph a bit, now that I have looked out of his window and seen the crummy view that he has to look at everyday, I don't envy him his window anymore. He doesn't bug me anymore. I like Joseph. I listen to him when he needs to talk through the curtain, and I tell him he is smart and good. The other day he had a math game he wanted to play with me. I humored him and he won. I am terrible at math, so that is no surprise. I told his how smart he was. I meant it. Then he challenged his nurses, and his PT guy, and anyone who would stop their busy day to play a few rounds with him. He won every time. That night I heard him tell his mom on the phone "There are some people here who think I have a brilliant mind... No, Mom, really."

His tutor gave him an assignment the other day to write an essay about something that happened in his life. It stressed him out because he couldn't think of anything positive in his life that he even wanted to remember or have someone else read about. He got frustrated and told her he wasn't doing it. She left. I talked to Joseph, and told him I bet he was a great writer, and that all the great writers had had bad things happen to them. It was those experiences that helped them be great writers. He told me he wasn't doing it. Period.

A few days later Joseph declared to me that he was going to surprise his tutor and do the essay- due tomorrow - even if it took all night. The assignment was a bit more complicated than simple an essay. It had to have so many paragraphs, each with so many sentences, each sentence having to have a set number of nouns, adjectives, prepositions, etc. It was a difficult assignment. He was up until very late working on it. He kept asking me through the curtain things like "Is 'ugly' an adjective?" He kept me up to date on his progress, and I kept telling him he was so good and the tutor would be so surprised. He was so excited the next morning to hand his paper into his tutor. It was very good. He got an A+. Joseph was happy. I was happy too. Poor Joseph. I wouldn't want his window.

I've been thinking about the other people in these other rooms. There are some seriously sick children here, children who have cancer or horrible disease or trauma, children with major birth defects, children who are here because they were abused by their parents, children who have nobody at their bedside, children who will never leave this hospital alive. How can I really envy them their windows?

Yes this whole experience was very scary and very painful to go through. But in a week or so we will be back in our home with the big windows. By the new year Dylan will be off his IV, back in school, and by next Thanksgiving this will all have been a very bad nightmare, nothing more.

That is the window I get to look through, and I am so grateful for it. So the view from this room, as far as I can tell, is perfect.

Down - Up - Down.

Dylan's temperature is down.

Doctors' hopes are up.

Dylan's spirits are down.

It has now been 48 hours that Dylan has been fever free! This is wonderful news. It means that the second surgery likely worked, and the antibiotics are kicking in. The doctors are all very pleased. I heard one doctor in the hallway literally give a cheer this morning when the nurse told her he hadn't had any fevers since the surgery. It is so refreshing to see smiles on the doctors faces where I only saw worry before. I can tell that these doctors really, really care about Dylan, and as his condition got worse, and the mystery deepened, they grew more and more concerned. I am getting completely different vibes from them now. Smiles, nodding heads, laughing - all are good signs from them to me,just as low temps and blood levels from Dylan are to them.

Unfortunately, Dylan's spirits are lower than ever. Even though his condition is getting better for the first time in 2 weeks, he is actually feeling worse. He was feeling much better before his 2nd surgery. His pain was less and he was getting up and around, wanting to do stuff and thinking he was going home soon. Then came the surgery surprise, and suddenly he his back in the throws of pain again, can't get around anymore, home seems further away than ever, and he is just depressed. I breaks Mom's heart. Before, with physical therapy, he was trying so hard, really pushing himself (like Dylan always does with everything) and getting better by leaps and bounds. The PTs were so impressed. But the second surgery took it all out of him, and he is starting all over again with his PT. But this time he has no motivation. It hurts a lot. He cries a lot. He doesn't want to try. He is sick of pain. He is sick of the hospital. He is more miserable than I've seen him yet. It is heartbreaking.

Yesterday he was trying to sculpt an animal out of clay. He got frustrated because he couldn't get two ears to match. He got mad and threw the clay on the floor. When I asked him what was wrong he started to cry and admitted that he figured out he was going to miss Thanksgiving. He was very upset. His roommate, who has been here for two months for a similar infection in his knee, was told he was leaving Tuesday, and would be home for Thanksgiving. Dylan had heard that and asked me when Thanksgiving was. I told him in one week. He had done the math and figured out that he might not make it home by then and was very upset. I told him that our Thanksgiving would wait for him. Poor kid.

Dylan is not in the clear yet. We still have to get back blood cultures for several days that are negative for staph, and more tests are needed to assure the doctors that none of the staph has started to grow on the heart valves. He has to be up and walking, and he has to have a procedure to have a pic-line, a sort of semi-permanent IV, put in before he can come home. Of course, if he gets any kind of fever again at all, all bets are off. Lets pray for no fever.

I am hoping that tomorrow, Dylan's pain will be down, and his spirits will be up. I pray that tomorrow will be a better day, and the day after that better still, and that on Thanksgiving Dylan will be thankful to be home.

This down, up, down, up, is taking its toll on all of us.

Seeing Yellow

I loathe yellow.

I haven't always hated yellow. I mean, I painted my kitchen yellow. I spent weeks trying to find the perfect warm, and cheery yellow for my kitchen. I thought I'd found it, spent all night, 9 months pregnant, up on a ladder, painting it. In the morning light it was was no longer warm and cheery. Instead it was an unnerving and harsh chartreuse. I cried (hormones). It was Sunday, and I wouldn't be able to get to the store to pick out another paint and repaint it until Monday, and I was already over-due and I knew I couldn't let my kitchen stay this color if I had to run off and have a baby. Luckily, Caleb was late, and I got to paint my kitchen the perfect shade of yellow. And if I can remember right, I love my kitchen. (Its been a while since I've seen it.)

What I'm saying is that my hating yellow is a recent development, over the last few weeks actually.

Yellow is NOT a sunny and cheery color. Yellow is a dreary, dark color.

Dylan is in isolation. When you are in isolation, everyone who comes into your room has to don a yellow gown. I have been wearing a yellow gown for almost two weeks now. It is NOT my color. Everyone I have seen, except Dylan, has been wearing yellow. Let me just tell you, yellow is nobody's color. Nobody looks good in yellow, especially under these harsh hospital lights.

Isolation stinks.

Dylan cannot leave our dark and tiny hospital room. There is a bright and cheery playroom just down the hall full of games, toys, video games, books, crafts, you name it. Dylan can't go there. He is banned from the play room, and they will not bring him anything from the playroom to play with because he has the cooties.

If he ever does get to leave our room, because of an exciting adventure to get an ultrasound, an MRI, or have surgery, they have to put a yellow gown on him to roll him down the hall. The yellow gown says "Look at me. I have cooties." Like a leper of old, having to wear a bell to warn innocent bystanders to run for the hills because there is a filthy leper in their midst.

Never mind that Dylan has been carrying this infection in his blood for over a year and hasn't infected anyone. Never mind that 2 out of every 10 people have this nasty bug just hanging out in their noses or on their bodies at any given time. Never mind that this nasty bug is everywhere - shopping carts, doorknobs, swing sets. Never mind that it has to be spread through the blood and someone can't catch it by being breathed on, coughed on, etc. Everything that Dylan's infectious disease doctors tell us about this bug, really doesn't confirm the "precautions" they are making. Don't get me wrong. I think they need to take precautions, of course, to not spread the disease, but there are so many holes. They are ridiculously precautious in some ways, and not in more obvious ways. And in the end, they just make it extra hard on the poor kids who are in isolation.

Do you remember ever being accused of having cooties in school. I do and it was no fun. Humiliating. Embarrassing.

That how this yellow gown feels, like being branded with a scarlet letter.

Isolation feels like solitary confinement, and try as I might I really can't think of the crime that sweet little kid of mine committed.

Before his second surgery he was trying to do his physical therapy in the confines of his room with his walker. He had to make about twenty laps back and forth in the tiny track between his bed and the door. Why the heck couldn't he just walk down the hall? Do you really think he was going to infect someone just schuffling down the hall? He quit after 20 mini-laps in his bedroom, I believe, out of sheer boredom. I'm sure it would have been much more motivating to have him make it to the end of the hallway.

Cootie case in point: Last night he had had a long nap and had missed dinner. It was about 10pm when he woke up and was hungry. His taquitos were cold on his dinner tray, and taquitos are just not good cold, agreed? So I carried the covered plate out of the room and asked someone to throw the taquitos into the microwave for a minute. They all looked at me like I, well, like I had cooties. "No, we can't." I knew they had a microwave, and were happy, usually, to reheat things for patients - unless you were wearing yellow. "Nothing comes out of the isolation room." That is the policy. They couldn't reheat Dylan's dinner because it had been in an isolation room. What? Dylan had never touched the food, the plate, or the entire tray, but suddenly it had cooties. I explained this to them. Again with the policy, "Nothing comes out of the isolation room." Strange, because I came out of the isolation room, and so do all the finished food trays, I assume, because I didn't see them piling up in the corner. I have seen a lot of stuff leave the isolation room, cooties or no. But they refused to reheat the cootified taquitos in the community microwave. "OK, then can you please just order him some more taquitos?" "No, the kitchen is closed." I was ready to blow. It doesn't take a lot these days. When my sick kid finally wants to eat some taquitos, I feel obligated to get him what he wants. To heck with the cooties! I begged and pleaded his case. They refused and generously offered to toss some jello into the cootie room. I stormed back into the cootie room and slammed the cootie door! That's why I hate yellow. He who wears yellow is treated as a second class citizen.

But I have watched my child battle these cooties. I have seen the pure torture he has been put through. He has been so brave and so strong. I don't think someone wearing yellow should be treated like they are wearing a scarlet letter, but a red badge of courage. Kids like Dylan, and parents like myself, have been through heck, and anyone in yellow should be treated with extra love and attention, not like they have cooties. Hot taquitos for all!

I'll be happy to never wear yellow again.

MRSA Strikes Back

Another hard day.

Dylan had surgery this afternoon, to clean out the infection in his hip. Again.

I'm too tired and emotionally drained to say much tonight.

They gave Dylan a ton of morphine for his pain. My friends and family gave me a ton of prayers and well wishes for mine. Thank You!

A Good Day

It is funny what constitutes a good day. A day at, say, Disneyland should be a good day, right?, but it could also be a very bad day. Think about it. You could encounter long lines, you could have a sinus trouble that makes any fast rides torturous, your toddler could run off into the crowds on Main Street and be found in Frontierland, your kid could be caught shoplifting and carted off to Disney Jail, Space Mountain could break down while you are strapped in and you could hang there in the dark for hours. There are really so many ways that the day you looked forward to at the "happiest place on Earth"could turn into a bad, bad day. Just use your imagination. It works vice-versa too.

Today was to be a bad day. A sick, hungry, kid in pain, a hospital room, isolation, far from family and friends, scheduled surgery. All the makings of a really crappy day, as far as days go. I woke up this morning expecting the worst. I didn't get it.

Last night when the Dr. said Dylan was to have surgery today I was so disheartened, and even more so this morning after talking to another doctor, as I wrote about in my last post. But when Dylan finally woke up this morning he was feeling pretty good. Not great, but good. And very hungry and thirsty, of course. I told him about the day's itinerary, namely another surgery. He didn't say anything, but his face fell. I asked him how he felt about that. He whispered "A little mad...and sad." My sentiments exactly.

We watched a few movies together and waited for the word to transfer down to the OR. Lunchtime came and went. No lunch, and no word form the OR. The physical therapist came. I told him Dylan was having surgery today. But the PT just thought that was all the more reason to get him up and moving before he wouldn't be able to anymore. Dylan did great. The PT was so pleased, amazed at the vast improvement from just yesterday. He was getting around with that walker like it was nothing. He did at least a dozen laps of the space we carved out for him in the small hospital room. While the PT was so pleased, he was also worried that any gains Dylan was making now would be lost after the surgery, and that was discouraging.

But just as the PT was finishing up, the nurse walked in with a tray of food. "Good news," she said, "no surgery today!" Wow. That was certainly unexpected. I never spoke with the doctor and am not sure exactly why not. All the nurse said was that he wanted to wait and see. Maybe he got back some results that were encouraging. Maybe he consulted with doctors and they came to another conclusion. Maybe the OR was booked. I am not sure. And I am not sure if he will have the surgery tomorrow, or the next day, or never. But Dylan was eating, so it wouldn't be today. I could live with that.

Dylan enjoyed his lunch - devoured it actually. That was good to see.

Then he sat up in a chair and was anxious to DO something. This was good too. Now he can sit up because his hip feels much better, and he can use his hands because his new IV is in the middle of his forearm, which allows him more movement. He spent a long time painting a wooden snake black and red, and then a clay turtle bank green and red. I was so happy to watch him enjoying himself, DOing something.

Then he got to take his first shower in a week and a half. After the nurse taped plastic all over his IV and incision, he was able to get unhooked from every cord and tube (a good, good thing) and get into a shower. Dylan is kind of a neat freak, so a shower and clean hair must have been really good. (His brother Derek would have loved the excuse to not take a shower for a week and a half. Maybe Derek hasn't showered since then either..., you know, in solidarity.) He smells so good again.

Then we watched Napolean Dynamite together and laughed. Laughing is good too.

Today many people called, emailed, left sweet and funny comments on my blog, and a brother in our ward, who commutes near here, even stopped by, on orders of his wife. So much love and support is so very good.

So there it is. An unexpectedly good day. We are still in a hospital, alone, far from home, my kid is still inexplicably sick and in pain, and we don't know when we will get home. But there was no surgery, for whatever reason, quite possibly a good one. A full stomach, clean hair, a jaunt around the hospital room, an artistic endeavor, a funny movie. These are all the makings of a good day. Who would have thought? I guess it really is all relative.

A good day. I'll take it. I promised in my last post that I won't get ahead of myself again and start getting my hopes up. This crazy trip has taught me that we never know what tomorrow will bring. Tomorrow may bring surgery, or an all clear from the docs. Who knows? Today was no day at Disneyland, but that may be a good thing, right? Today was a good day, and I'll take one good day at a time.

The nurse just took Dylan's temperature and it is spiking again. Perhaps today was only a reprieve after all. Here's hoping for a good night. We'll worry about tomorrow come morning.

Here We Go Again

OK, this is NOT the post I had planned on writing!

So I wrote that last post early Sunday morning, after a fitful sleep. I went to sleep without hearing from Dennis, but figured no news was good news, and that if there were a problem he would have called. Still, I was distracted and jumpy at church with worry, and kept stepping outside to try to call him, but he never answered. We got to church early (Hm... wonder why that always happens when Dennis is not with us?) so my dad could tie the boy's ties. I have never learned how. Tying ties is not really my thing.

It felt so good to be at church, among so many people who love me and my family, especially after my lonely stint at Loma Linda. It felt good to talk to my friends face to face, and see the looks of genuine concern in their eyes.

The primary program was wonderful, by the way! Everyone did such a great job, and the spirit was very strong! I especially liked how Caleb was dancing around up there, waving his arms to mimic the conductor. When I caught his eye and motioned for him to stand still, he stood at stiff attention. But that only lasted for a few seconds before his head started bopping back and forth, and soon his body followed and he was dancing around again. I guess he was really feeling the spirit... or something.

All reports have been that my children have been wonderful during this whole experience - Alex has been extremely responsible, the other boys so sweet. So I don't know what it is, but from the moment I was with them again, they started fighting like cats and dogs, calling each other names, tormenting each other is the harshest ways. The two little ones have been making trouble too, getting into stuff, being destructive for pleasure. I guess I just imagined coming home and having my family around me, and all my children would be knit together in love, united in a cause during this family crisis. Oh please. I suppose they are stressed out and as helpless feeling as I am, and that is the only way they know how to express it. I guess I should be grateful that they are saving it all for me, and not taking it out on my mom and all the people who are being so helpful with rides and such. But still, in moments of sorrow, the last thing I need or want to do is hear my dear children slinging vicious names at my other dear children. It takes so much out of me to jump into the fray and tear kids apart.

So that might explain Caleb's antics up there during the program. But hopefully many of the congregation didn't notice Caleb's antics because they were too distracted by the completely out-of-control 2 year old causing havoc on the back pew of the Chapel (mine too). Fun.


I never made it to Sunday school, as there were so many friends asking how Dylan was doing and how I was doing. I could tell them about Dylan, but had a hard time telling them how I was doing. I also had no answers for what they could do for Dylan or our family. But I was grateful for all the offers.


During Yong Womens, Alysa, the primary president - and my rock - stepped in and handed me a huge stack of papers. I started looking though them. They were sweet letters and pictures from every child in the primary for Dylan. They were precious, and my tears started streaming down my face. I could hear the YW leaders sitting behind me were having similar reactions. I had to stop looking before I ruined all those pretty pictures with my tears.

I had to rush out of YW to watch Derek give his talk that he wrote all by himself about how Heavenly Father loves all his children. He did a great job.

Back at home, I finally heard from Dennis. Dylan was in a procedure when he called. They had put him under, and with the help of an ultrasound, were using a long needle to extract infectious fluid from an abscess deep in the muscle his pelvic area, where the antibiotics were not able to penetrate. Oh man. Dennis said he had had a long night staying up with Dylan while he suffered in pain.

At home, any hopes for a nap quickly evaporated as I tried to get everything I needed to get done in my one day home before going back to the hospital for who knows how long. Of course, a fabulous dinner was brought over by Kathy and Diane, much more food than we could eat. Dennis wasn't there, thus the leftovers. But it was really good, and we took the time to sit outside in the beautiful fall evening and enjoy it. I am so glad we did. For dessert they had brought a huge pan of the most wonderful something - chex cereal with melted chocolate and caramel, AND just to be on the safe side, and batch of chocolate chip cookies.

The doorbell rang. It was the Jacksons with not one, not two, but three plates full of humongous cinnamon rolls. If you've ever had one of Melissa's cinnamon rolls, you know that they are the ultimate comfort food! Simply amazing!

The doorbell rang again. The Stevens brought over a bag of gigantic soft oatmeal cookies - my favorite! I'd be bring the whole bag with me to go see Dylan.

Ding - dong. Evan Carlyle was at the door with a plate of beautiful butterscotch brownies (say that five time fast). They were snatched off the plate in no time at all.

We already had a huge untouched chocolate cake on the counter, and a couple boxes of Moose Munch Crunch from Harry & David (one of those is going to the hospital with me too!)

Is that where they get the term "Living the sweet life?" If sugar = love, then we are very, very loved!

By the way, I understand that calories don't count in a crisis situation. Good to know!

Sunday evening Dennis' report was good. Dylan was doing much better, eating and sitting up. His temperature was down. Yay! I spoke to Dylan, and he asked me to bring all his stuff people have been giving him that up until now he had not felt like playing with. He asked for some specific action figures and toys. That was a very good sign. I dutifully packed up all his requests, the primary letters, the cookies and junk, the giant red card his brothers had made that says "GET WEEL SOON!" in big letters on front, and the various pictures Caleb had drawn and carefully cut out. Caleb also picked several roses from the garden. They were past their prime, and the stems were cut to about 2 inches. He put them in a plastic cup, and wrote "DYLANCALEB" on the cup. He carried them around all evening, and the next morning saying "Don't forget to give these to Dylan." Sweet boy. He really misses his brother.

Monday morning I headed out to Loma Linda and found Dylan sitting up in bed, cheerful and perky. He had no fever and was talking up a storm, wanted to eat, wanted to know what was going on at home. He was Dylan! I hadn't seen that Dylan for over a week! The physical therapist came in and got Dylan up and in a walker. Because he is is isolation, he can't leave the room, but he did several laps back and forth in the cramped quarters of the hospital room. He was trying so hard, and was doing such a great job!

Finally! After more than a week he had finally turned a corner. The antibiotics were working and he was up and moving. This is what everyone had been praying and waiting for. I was so relieved, because I really didn't know how much more of this I was going to be able to take! There was talk of him getting home by the end of the week. Hallelujah!

Dylan and I had a great time together. I showed him his flowers from Caleb, his giant card and picture from his brothers. He ate most of his cinnamon roll. We carefully read all the letters from the primary together, and laughed. He loved them! They really made his happy. All the nurses said, "Wow! Who sent you all those letters?" Dylan said, "my friends from church." "You sure have a lot of friends." "I know." I told him he lucked out because it was the primary program so everybody was at primary. More kids mean more letters. They were really great!

We watched movies and hung out, and I thought how great it was going to be from here on out. Now that Dylan was feeling better, I was looking forward to these next few days where I could spend a lot of alone time with just him. He is such a great little kid, and I love to be with him.

After lunch he was tired and he slept all afternoon. I noticed that his temperature started to go up, but I wasn't too surprised. He is still sick after all.

My good friend Kristi came in the evening and brought me dinner, even though she was leaving for Hawaii with her family in the morning and had so much to do still to pack. It was so nice of her to come, knowing she'd be up all night packing. She brought me In-N-Out, bless her soul! We had a great visit. I just love that girl! We've been friends since we each had one kid. Now we have 11 between us, and she has always been a great resource of wisdom and strength for me through the years.

So here is the part where this post about how everything is getting better goes awry.


I walk Kristi out of the room and say my good-byes. As she walks away, a doctor comes up to me and asks me to sit down. He has forms. He tells me that the MRI results from Friday night, along with other tests and the recurrent fevers have made the doctors decide that Dylan needs another surgery.

Numb.


Your kidding me.

He explains the the infection that was in his hip had crept over the hip bone and settled in the back of his pelvis. They worry that if they don't catch it now it will creep up his back, which is already inflamed...

There was more, but my mind was still stuck on the word "surgery." Again.

That poor, poor kid! Just when he was finally up and moving about - it's taken a full week to get him to that point. Now we will be starting all over again. I think we'll be stuck here for a while.

I should have never got my hopes up and started assuming things. You'd think I would have learned that lesson by now.

I haven't had the heart to tell him about the surgery yet. His spirits are pretty thrashed at this point already. Mine are in pieces.

He had a rough time last night. More fever and severe pain. His IV blew, and had to have another one put in - his third so far. He is so brave! He has been given another order for no food or water. He was thirsty and I had to tell him no.

I held his little warm hand all night. It was all I could do for him.

It is morning, and he is still sleeping. Another doctor came in and "explained" a lot of stuff about blood cultures, a bone infection, bone scraping, low hemoglobin levels, a blood transfusion, heart mummers, a possible infection of the heart valves. Just trivial stuff, you know, idle chat.

We're looking at another fun day.

It is strange because I haven't cried yet. I frankly don't know what to feel. I might still be angry. Ya, OK, I am angry. This should never have happened! Maybe I am sad. Of course I am sad. Who could watch a little kid suffer and not be sad. Yet I don't cry. Maybe I am just tired. I am tired of crying, tired of worrying, tired of waiting. I'm just tired. Too tired to cry.

But don't worry. I'm sure the tears will come. They always do.

I do know that a whole lot of wonderful people have been praying for my boy. I know that many dear friends and loved ones have been fasting Sunday or Monday, and I realize that the Doctor's decision came Monday evening. I don't think that is a coincidence. It is was the praying and fasting that helped the doctors know the proper course to take, and that surgery is that course. This is what needs to be done, and I believe it will work.

Maybe I don't cry because of hope. Maybe I don't cry because of faith. Maybe I don't cry because the spirit has somehow reached into inside my frazzled mind and broken heart to tell me everything will be OK.

I'll take it.

A Midnight RIde

On Thursday I was told that Dylan would be transferred to Loma Linda on Friday. This came as good news because his condition was not getting better despite the surgery and powerful antibiotics. Dennis came to relieve me from my long day at the hospital just in time for me to go to taekwando. He thought I needed the distraction and a way to get my frustrations out. He was right of course. It has never felt so good to kick and scream!

As soon as I walked in the door after taekwando the phone rang. Dennis told me that a bed had opened up at Loma Linda and that they were going to transfer him now, within the next 30 minutes. I wasn't packed, hadn't showered or slept. I quickly changed out of my gi and grabbed a toothbrush and some PJs, kissed my kids good-bye and raced back to the hospital.

When I arrived, my parents were already there. Dennis and Dad gave Dylan another blessing. It was absolutely beautiful and soothing to my ravaged soul. Dylan and I would need it to get through the next few days. How grateful I am for the priesthood. How grateful I am that my husband and my father carry the power of Jesus Christ to bless and heal my family. Looking back now, I wish I would have heeded my sister's advice, and had them give me a blessing that night too.

Soon the EMTs came with the gurney to take him down to the ambulance. It was decided that I would ride with Dylan in the ambulance, and and Dennis would go home. Dylan was rolled into the ambulance, and I climbed in after him. Dennis handed me my bags, then the doors were closed. As soon as we took off I realized Dennis had forgotten to give me the wi-fi card for his computer. That meant I'd have no internet access. Darn. Then we were off on a midnight ride - a ride that still hasn't ended in some ways.

It was a rough ride.

Despite all my mom talk, i.e. "Wow, Dylan, an ambulance. Isn't this cool! You brother are going to be so jealous that you got to ride in a real ambulance..." I knew and he knew that it wasn't that neat, but I had to say it, and he dutifully smiled and feigned slight excitement.

It wasn't neat at all. It was just bumpy. Poor Dylan felt every jolt and bump as we sped down the I10. I was amazed at how rough the ride is back in an ambulance. Can't they put better shocks on an ambulance, of all vehicles? Every bounce and jerk registered on poor Dylan's face. Sometimes, over a large bump he'd gasp. There is one spot of the freeway near Banning that is extremely rough. We might as well have been off-roading, the way we were bouncing around. As I watched, every bump and jolt was translated onto Dylan's sweet face, and then I felt the same expressions on my own face - my jaw tightened each time I saw his tighten.

It was a long ride. We were both so tired! It was just over an hour, but seemed much, much longer. The clock hit midnight as we bounced along. I had no idea where we were, could not look out the window for exit signs or any familiar landmarks on a road I had been down thousands of times. I felt like we were be transported to another world. I guess we were.

When we arrived I only got a glimpse of the round towers of Loma Linda Medical Center before we rolled Dylan though the big double doors of the basement, down long white corridors, and up an elevator to the 5th floor of the Children's Hospital. The ward is located in one of the towers, so it is round. The rooms are around the circle like spokes of a wheel, and the nurse station is the hub. There is an undersea motif. Whales and dolphins are sprinkled among the ominous hospital paraphernalia, in an attempt to make a scary place feel a bit playful. It wasn't working for me. I was scared.

We were both so tired, but it wasn't until 2am that he had been checked in, checked up, hooked up, and got to bet. I slept in a fold out chair next to his. Some doctors make early rounds so I was woken up at the crack of dawn by doctors who wanted to know everything about Dylan's history, etc. They kept popping in, so I didn't ever have a chance to get back to sleep. Between these frequent guests I got to look out the 5th story window. Except for few ugly buildings, the view looked very much like Italy with the rolling hills and tall cypress trees. I was thinking how grateful I was that I had this view, so I wouldn't be stuck looking at a hospital room all day, when the nurse came and informed me that we were moving to another room, because there were two isolation rooms in this ward, and a girl had to come in this room. They were transferring Dylan two doors down to a room with a 14 year old boy roommate. Guess who already had the window? He kept his curtain drawn on his half of the room, so I never got even a peak of the outside. What we got was two large windows on the double doors, so everyone walking by can look right into our room, and we have a spectacular view of the nurse station. Dylan has a curtain that fit just around his bed for his privacy. I have no such curtain for my sleeping chair, so anyone could just watch me sleep. Nice.

I asked if his brothers could visit. "Sure." That's great! "But they have to make an appointment. I'll see if there are any spots still available for this weekend." An appointment for a sibling visit? I supposed I should have made the appointment weeks ago. Silly me. Nice.

They brought in breakfast. Just one tray. "They don't feed the parents?" "No." Nice.

I picked up my cell phone to call my husband. "No cell phones." I have to disrobe and walk down the hallway before I can make a phone call. If the phone is ringing, it will always stop before I even got my robe off and got halfway out the door. No phones. Nice

I was told that the bathroom in the room was only for the patients, since they had to share it. Parents had to go down the hall and around the corner to use the bathroom. Nice. So when Dylan was settled I gathered all my stuff together and headed down to the bathroom for a much needed shower (remember, I hadn't showered after my workout, and was disgusting!) I found the bathroom. It was a single bathroom, and there was a line in the hall to use it. Nice. There is only one bathroom on the entire floor for all parents, visitors, and staff to use. When I finally got inside it was just a toilet and a sink. No shower. Nice. So I tried to wash up as best I could with a sink, and changed my clothes, knowing I had to make it quick because there was a line of folks waiting outside. I went back to the nurses' station to enquire about a shower. There was a shower provided for parents' convenience - conveniently located several floors down on another wing, oh, and you have to make an appointment. Excuse me? You have to make an appointment to take a shower... somewhere else? How is it that I have to make an appointment to have my kids visit or take a shower, but anyone can waltz into our room at anytime, day or night, to do anything, or we sit around for hours waiting for some test or procedure whenever they get around to us? Can they possibly do anything else to make things any harder on parents, especially those parents who are far away from home? I'll bet the shower is coin-op too, and that they provide no shampoo or towels. Of course I don't know because I couldn't get to a shower. I had been away too long just going to the bathroom and a few doctors were lined up in the room, waiting to grill me and poke a prod Dylan.

Dylan has 3 different teams of doctors: a pediatrics team, a pediatric orthopedist team, and a pediatric infectious disease team. That is like a dozen doctors and that is awesome because that is a dozen heads trying to figure out what is happening with my kid. At Eisenhower, He had three doctors: a pediatrician, an adult orthopedic surgeon, and an adult infectious disease doctor. They had all been very concerned and had tried their best, but obviously this is a much better situation for Dylan to be in. Unfortunately, it is also a very uncomfortable situation for Dylan to be in, because with a dozen doctors, there were a dozen examinations, some attended by half a dozen med. student observers (It got a little crowded!) Dylan is in isolation, that means everyone entering his room has to don a lovely yellow gown and gloves. But that didn't dissuade any of them from coming in. All the doctors' exams went something like this:

Dr: "Hi Dylan, I'm Doctor_____. How are you feeling today?"

Dylan: "OK"

Dr: "How old are you Dylan?"

Dylan: "nine"

Dr: "What grade are you in Dylan?"

Dylan: "4th"

Dr: "Dylan, do you mind if I take a look at your incision?"

Dylan: "OK"

Dr: "Does this hurt when I touch it."

Dylan (holding his breath): "yes"

Dr: "How about here?"

Dylan (wincing):"yes, yes"

Dr: "And here?"

Dylan (jerking away): "Ahw, oooh, ya!"

You get the picture.

After a while, Dylan caught on.

Dr: "Hi Dylan. I'm Dr. _____. How are you feeling today?"

Dylan: "OK. I'm nine and in the 4th grade." Then he'd dutifully uncover his hip for the doctor's poking pleasure.

After they were each done poking a prodding the nice little sick kid, the questioning for mom began. Did Dr. so-and-so come yet? I didn't remember - all the name tags are under the yellow gowns. When did the fever start? the leg pain? Had he had any injuries? any pets? any...? I told them all about the "spider bites" and these doctors actually listened to me and believed me when I told them about everything. Cool. Not one of those doctors told me they were just spider bites, so I knew we were in good hands. But still, the constant poking and prodding was difficult for my little man to take too many times. Difficult for mom to watch.

The fevers remained. The pain remained. Next came the tests. All the same tests that had been done at the other hospital, and some new ones to boot. Blood tests. (Every time I looked at Dylan he had a different color tape on his arm to hold on the cotton ball where someone had drawn blood.) X-rays. Ultrasounds. Etc.

Each time they had to take him for a test, they have to move him onto a gurney, and moving is pure hell, frankly, for that little kid. He can't move himself. It is so painful, that his body won't allow it. So nurses would have to lift him up by the sheet and slide him into the gurney. Sheer torture! The little boy who has always been so brave and never cried, screams out frantically as they moved him over just two feet, a look of pure panic on his face. This is too much. Too much for my mom heart to take! But I smile and kiss his burning forehead (the only spot that doesn't hurt, I think). "I right behind you, baby," I whisper as they wheel him out of the room for another bumpy ride.

Even though it was noon, and quite possibly light outside (I don't know for sure, since I never saw a window), it was my darkest hour, and a long, long, walk to who knows where. Walking behind my son, I knew he couldn't see me, and that the sound of the gurney on the cold tile would mask my sobbing, so I decided to cry. I looked at the top on his little head, and saw his hands grasp the blankets tightly as he went over a little bump, and I cried, and cried, and cried. What else could I do? I couldn't cry in front of him. I couldn't have a good cry in the shower, and there is no time for a good cry in the bathroom when people are lined up outside waiting. Where is a mother supposed to go to cry? Had anyone ever thought of that?

Tears rolled down my face as we slowly walked down one hallway and another. What is going on with this kid? Why can't they just figure it out? How much pain can one little body endure? How much pain can one mom endure? How long can a little body take fevers like this. He's been burning up for a week already! What can I do for him? What can anybody do? Someone find an answer! Look at that sweet little boy. Oh, how much I love him. Lord stop this, stop this please!

At somepoint the thoughts turned into prayers. They always do.

Somewhere in the back of my mind, I knew that there were so many people who loved Dylan, loved me, who were praying and fasting for us, who were bringing meals to my family, giving rides, or offering to do anything. I knew his name was in temples dotting the land, and that lots of prayers were being said on his behalf. But at that moment, that all seemed so far away. Faces passed by me as I walked. Lots of faces. Faces of strangers. Doctors and staff looked straight through me and my tears. They had seen a lot of tears. Parents saw my tears, and looked away quickly, to prevent their own upwellings, I imagine. I felt so exhausted, so alone. How does one possibly feel so lonely in a place so bustling with people? So many faces. The only face I recognized, the only face that mattered was the angel face of my little boy.

We were still on that midnight ride. When would this ever end?

We arrived at the ultrasound room, and I quickly wiped my tears and forced a smile. "Don't worry, honey. Ultrasounds don't hurt." It hurt.

Then the long trip back to the room, winding through the white hallway. I cried more. As we walked I saw something I had not seen through my blurry, tear-filled eyes, on my first pass through these hallways. There was art on the walls, large paintings. One of surgeons operating on a child. One of a doctor at his desk, trying to make a diagnosis. One of a mother sitting next to a sick child on a hospital bed. In each picture, Christ was standing behind them, whispering in their ears. Wow... Wow. Tears flowed back, and the images blurred quickly. as we passed. I knew the Lord was with these doctors, and the Lord was with us. Another picture had Christ surrounded by children in hospital gowns. "Suffer the children to come unto me." I didn't have to read the title. I knew what it was.

This gave me strength.

When we got back to the ward, I insisted that they didn't transfer Dylan back to his bed until they pumped him with pain medication. It was a long wait and crowded in the room with a bed and a gurney, while we waited for the orders to be sent to the pharmacy. I didn't care. I wouldn't let them move him without doing something to ease the pain.

Finally back in bed, he tried to sleep. But the peace was soon broken by the mystery boy on the other side of the curtain who turned on a movie, a rather loud movie, with a few too many profanities. I peaked over and explained to the teenager that his roommate was very sick, and hadn't had any sleep the night before. He turned down the volume a notch or two in compliance. Still, each dirty word made me flinch like the bumps on the road had made Dylan flinch. Plan B. I opened the computer and pulled up some classical music on iTunes, turned the volume down, and plugged in some headphones for Dylan to listen to. "Maybe this will help you sleep." It worked. He fell asleep, and I got to listen to the "bleep, bleepity, bleep." Nice.

Then came the doctors for another round of poking and prodding. There were a few more obscure questions. Has he done a lot of camping? Been to any third world countries? and the like. But mostly there were the possibilities. It could be this, or it could be that. The infection could be here, or it could be there, or it could be everywhere. Probably not, but just wanted to keep you informed. I wished they had just said "bleep, bleepity, bleep." I started crying again. They were kind enough not to notice and kept giving me prognoses, and possibilities and treatments. I was so tired and drained, and unable to compute what they were saying. They were giving me explanations, and all I really wanted was a hug. None were ever offered.

This was a long day. This was my worst day.

It was Dylan's worst day too. The doctors explained that blood work results showed that he had been getting steadily worse since day one. The antibiotics did not seem to be working. They were working to try to come up with a cocktail of different antibiotics to find something that would work. The good news is that his hip seeped to be getting better, and the infection was pretty much gone from his hip. The bad news was that the infection was still raging- somewhere, but just where, they were still trying to figure out. He had a large patch on his left side that was red, inflamed, and warm to the touch. Excruciating with even the slightest touch. Could be in the flesh. Could be in the muscle. Could be in the pelvic bone. The doctor pulled out a ballpoint pen and drew around the boundaries of the inflammation, to see if it grew bigger. Hopefully it doesn't because that would be very, very bad, apparently. Leaving me to those very happy thoughts, the doctors left. Dylan slept, and I turned my chair so my back was to him, just in case, and cried again.

At some point I looked up and saw two people outside the door window putting on yellow gowns. They were two faces I recognized! I can't tell you what it did for my soul to see a familiar face. They were the faces of my dear friends, the Muchejes, who used to be our martial arts instructors, but had moved to Riverside. They lit up my dark day in an instant. They brought me a large burrito, which also worked wonders for my mood, since up to this point I had had only a few of Dylan's leftover tater tots and carrot sticks. Dylan was so happy to see them to. We sat and visited. I talked and they listened as I unburdened my soul. What would we do without friends? It could have been the faces of any of my wonderful friends that could have pulled me out of my despair at that moment, I know, and so many of them would have hopped in a car and driven down to rescue me in a heartbeat had they known I needed it. I knew that. I just hadn't known that that was what I needed - a familiar face, a listening ear, a hug, a friend - until they arrived. Salvation had come in the form of a friend. God is good.

At one point I stepped out of the room to answer a phone call, and a nurse told me I had to go somewhere else to talk. I am ashamed to say that I competely lost it at that poor nurse who was just following policies handed to her from on high. "At the last hospital we had our own room, I could use the bathroom, I could shower. They brought me food. We had privacy. We were close to home and we had lots of visitors. Here you make me leave my kid to go to the bathroom, leave my kid to take a shower, leave my kid to eat, leave my kid to take a phone call! We are far from home. I am all the support system he has right now, and he is all I have. They tell me I can go to Ronald McDonald House, but that is 5 stories down and across the street. I can't do that. I CAN'T TO LEAVE HIM! " I was hysterical, obviously. More tears. Out in the open for all to see, and hear. Only this time there were arms around me. My friends were there in their yellow gowns, to bring me quickly to my senses. The nurse was sweet, and compassion was in her eyes. "I see what I can do." She smiled, and the scene was over.

Thank heaven for friends.

The Muchenjes, so good to spend their date night hanging out in a hospital, stayed for hours, until a gurney came to take Dylan away to do another MRI. It was 10pm. This time some good soul had the brilliand idea to use a board to transfer Dylan over to the gurney. It was smooth and much less painful. We said our good-bys to our friends as we rolled Dylan away , downstairs to the basement and a metal room where the MRI machines were. Once the technition had left the room, and Dylan was safely inside the tube, the tears started to flow again. This MRI was much quieter than the one at the other hospital, but it was plenty loud enough to mask my sobbing. It was the first real private time I had had since I had been here, and I took full advantage to let it all out. Who knows when I'd have another chance, right?

The MRI was hard on Dylan, as it became painful for him to stay in one position without movng for over an hour. But he was very brave, and stuck it out. Poor little guy.

When we returned to the room it was nearly midnight. A doctor was waiting for him. He ordered no food or water after midnight, just in case Dylan might need another surgery or some kind of procedure the next day. Happy Thoughts. When my head hit the pillow, was so glad that this day was over!

Yesterday was saturday. It was the weekend, so things were quieter in the hospital. This time only a half a dozen doctors came to poke and prod. We waited to see what they had decided about the test results. Dylan seemed tp be feeling a bit better today, and wanted to watch some movies. His fever was down, and I began to hope that we had turned a corner. Dennis and Mom were bringing the boys over - we had gotten a 2pm appointment, and we were both looking forward to that. The nurse brought in a tray for breakfast. She knew Dlyan had an order not to eat, but had ordered his tray anyway, so that I could have it. I was so grateful! I waited until he was sleeping to eat it. As the day wore on, he got hungrier and thristier. The doctors were still deciding what, if anything needed to be done.

The boys finally arrived just in time for their appointment, but the woman they made the appointment with never arrived. Of course. So the boys stood in the hallway and waited, and waited. Dylan could hear his brothers but coldn't see them (Except for Luke, the 2 year old, who took off through the ward so mom could chase him down.) They had to page the lady and it took her 30 minutes to get there. "We had an appointment" I told her. She ignored me. All she did was tell them to put on the yellow gowns and gloves. We had to make an appointment and wait in the hallway a half hour so she could tell them to wear yellow gowns before entering the room. Nice.

Even little Lukie had to wear a full size gown that he tripped all over. That didn't last very long. Derek kept trying to blow up his gloves while still on his hand. What an adventure. Maybe we should use this picture for our Christmas picture. Darn, we can't. Alex isn't in it. He was at a stake YM missionary activity. Dylan was so happy to see everybody again! I was happy that he seemed to be feeling better. Finally.

When the kids started to get a bit stir crazy in that tiny space, we had to leave. Dennis was relieving me, and I was taking the kids home. It was easier to leave knowing that Dylan was feeling better and hadn't had much of a fever all day. The worst was finally over. Yesterday really was the worst day. The antibiotics were finally working. It would be better. I kissed him goodbye, kissed my husband - I sure miss that man - and headed downstairs, into the lobby, and out into the warm sunlight. Nice. No, really. So Nice.

I needed a distraction, and I knew the perfect place just up the way, good old Tai Pan. Nothing lifts my spirits like a trip to TPT. The kids were indulgent. I called Dennis a few times while I was there. All was good. Afterwards a quick stop at Krispy Kreme, and then we stopped back at the hospital to deliver a few donuts to Dennis and Dylan, who was finally, at 6pm, given the OK to eat something. The antibiotics had seemed to be working, so the doctors had decided against surgery or a procedure and just wait and see.

We drove home and I was getting ready to crawl into bed when the phone rang. Dennis. Dylan's temperature had spiked up to 105.9! He had horrible pain in his other side, and he had been wisked away for more xrays and ultrasounds to try to determine the cause.

I started shaking uncontrolably. "I'm coming," I said. "You better not," he warned. "You are exhausted. You'll fall asleep in the road. I'm here. You need to sleep... for Dylan." What could I say? What could I do? He was right. But I just laid there and shook until he called again, and told me that Dylan was back, his temp was back down, thanks to a lot of ice, and he was feeling pretty good. I had to talk to Dylan. "Hi mom." He was perky. "I'm fine." I couldn't have hung up until I heard those words. I finally fell asleep, and fell hard, until I woke up at 3am and had to write this post.

Will this jolting midnight ride to who-know-where ever end?