Saturday, February 27, 2010

We're home!

Yesterday was the worst day of our whole hospital stay. In the morning I heard them tell me how baffled in a good way they were to see how fast his infection is disappearing. The Dr told me when they first did Turtle's surgery, his knee was "Pus central" and now it is looking "pristine". He still has pockets in his thigh, but they don't think it will cause a problem. He's still swollen and sore, but it is getting better fast. And they started throwing around the words "home" and "discharge" and I felt like floating out the window. I was so happy.

Then they had to put his PICC in. Unfortunately the floor got really busy so we had to try to make a sterile environment in his own crib and go ahead and do the procedure there. When the oxygen monitor that had been working fine the whole stay suddenly wouldn't respond at all, I wondered if it were a bad omen. They were able to bring in a portable one so we got ready to go again. Then his IV suddenly was blocked and they couldn't give him medication. *sigh* They all left for a lunch break and gave Turtle oral medication, which would take longer and be less effective.

He didn't enjoy the PICC placement at all. It's so hard to watch your little one cry so, and participate in holding him down and wonder whether he'll ever forgive you. But that was nothing compared to what happened next.

He had to go down to radiology to have his chest x-rayed to check that the PICC was in correctly. They still hadn't taken Turtle off isolation, although they had planned to, the Dr who needed to sign it off was in surgery. So, since Turtle won't keep a mask on his face, they had to put a blanket over his head for the journey. No, correction, *I* had to keep a blanket over his head for the journey. My poor boy, who hadn't been allowed food or water for 6 hours, who didn't understand why I was letting people do these horrible things to him, who's heart broke everytime he signed for milk and I said "it's all done right now", fought me the whole loooong journey to radiology, he struggled to rip the blanket off his face. And everytime he ripped it off, the lady accompanying me scolded me to put it back over him. He cried his eyes out and I have never done anything that so opposed my instincts before in my life. Jumping off a plane without a parachute would have been easier to talk myself into doing. Forcing a blanket over my crying, starving, frightened baby's head while he struggled for air and to see where he was going was stupid and cruel and deeply disturbing.

When we finally arrived at radiology I was quick to remove the piece of fabric that I had torchered my innocent son with, looked guiltily into his eyes, seeing betrayal in the reflection and whispered a plea for forgiveness in his ear. He hadn't come down from that trauma yet when the radiologist asked me to hold him down in an uncomfortable position to get the xray picture.

By this point, Turtle had just had enough. He had been so tolerant his whole hospital trip. He'd had a full savings account of love and tender touch to sustain him and he tolerated everything quite well. The nurses had been saying he was their best patients ever. Drs and anesthetists wandered up from another floor when their shift ended just to say bye to him, because they all had fallen in love with him. He was the sweet, adorable boy with the peaceful temperament, cute blonde hair who had entertained them all with funny faces, adorable noises and affections. But his tolerance had just ran dry. He was tired, hungry, sore, confused, scared and so weary.

I dreaded the moment that came all too soon, when they said, "put this blanket over his head and we'll walk you back". This time was a hundred times worse than the last. He was sobbing from the depths of his soul and my face was red, puffy and soaked with tears. He begged me with his wailing, to let him breath real air, to let him see the room, to have some dignity. Inspired by his natural survival instinct, he used all his strength against my own to try free himself of this cover that was forcing him to re-breathe his own carbon dioxide. The lady accompanying us (I'm not sure if she was a nurse or what?) was not very compassionate and insisted on waiting for an elevator that was empty, since his blanket was constantly being pulled off. I was trying to keep pulling it over his head while my arms ached from the struggle and my heart screamed at me to stop.

She let every stinkin' elevator go without getting on it, because it was busy and there were people in them all. I have never been so close to having a breakdown. I was past my limit. I turned to her, tears streaming down my face while my hands forced this evil blanket to hide the most beautiful boy face, and I confessed, "I can't do this to him anymore.". She had a worried look on her face that suggested she was considering calling security. I stared at a nearby exit and prayed God would help me control my impulse to take my son and run for it. I very nearly did. I knew I wouldn't get far. But I couldn't stay in this hell, playing the roll of Satan. I almost threw the blanket at her and said "YOU keep the stupid blanket on his head". My lips took the form of the first word while I gathered up enough strength to stop myself from being so rude. Instead, I flung a "This is so stupid! He's not even supposed to be in isolation anymore, they just haven't got round to removing it. His cultures were negative and they never proved he had anything. He's so tiny and has been through enough" at her. She gulped and crinkled her face but said nothing. I shivered with cold, and would swear that anyone standing so close to her would be able to see their own breath. She was like a pillar of ice.

When the next elevator came, it was full of people and I knew she wouldn't take it. So I concluded *she* didn't have to take it, but Glenn and I sure as heck were gonna. She sheepishly followed me and uttered a disclaimer to the other people in the elevator, that he is in seclusion and isn't fully covered. No body cared. They saw this poor boy, flailing as though he were struggling for life and his mother, the perpetrator, completely beside herself in anguish while she commits this crime, unwillingly. I felt compassion in their gazes, and it warmed me.

We finally got back to the room, I hadn't eaten for hours, was sleep deprived and in post traumatic shock, when suddenly I felt as though I could lose consciousness and I started having small, trembling convulsions. Turtle went on to have the biggest freak out session he has ever had in his life. I've never seen any of my kids like that. His body broke out in a rash and he burst blood vessels on his face. His screams were so sharp they sliced through the room like a hot knife through butter. And he deserved to express every decibel of it. Intermittently, a caring nurse or volunteer would pop their head in to see if we were ok and ask if we needed anything. I just held him, apologized to him and sobbed my heart out. It seemed at that moment, everyone wanted to call us and I had to answer a number of phone calls before eventually switching off one phone and take the other off the hook. The stress and tension in the room was so thick you could karate kick it. I tried in vain to comfort him, but he cried and hit me in the shoulder, expressing his dissatisfaction that I had joined forces with the dark side, leaving him defenseless, standing alone on the side of justice.

After I begged with desperation in my red protruding eyes and urgency forcing through my vocal chords to be able to breastfeed him they allowed me, and eventually he settled down.

Just in time for someone to come in and say the x-ray showed the PICC needed redone. So we went through it all again and through the walk to and from the x ray again. It was every bit as painful but we were both numb. We went through the emotions, the sobbing, I felt like Judas, and we sort of floated above ourselves while it all played out.

A few rude interventions later, we were handed discharge forms to sign. I signed with much enthusiasm. The whole ride home I was just talking a hundred miles an hour, filling Rene in on much of what he had missed, and trying to come down from it all. I still have a lot of it to exhale, but I'm starting to realize we really are home and it really is over.

The nurse came to our home to show us how to administer his medication in his IV line. He has to have 6 treatments a day, 30 minutes each. We won't have much of a social life for a few weeks. They are intimidating and scary, but I am sure it will become habitual in time. He has an imobalizer on his leg and isn't supposed to bare weight on it for a while. If we can stop him, that is. While we recover and get used to the medicine regime we won't have to worry about meals for a while, because an awesome friend set up a mealtrain for us, online where people are signing up and bringing us meals. What a huge relief that is! We spent more than our month's worth of grocery budget just travelling to and from Omaha and grabbing fast food on the way etc. Every meal helps a bunch! We are so grateful.

I've been reflecting on our looong week and some blessings that have come about.

- The support from friends has been encouraging
- I had a lot of time to bond with Turtle, with no distractions
- I watched Rene bond with the girls and watch them turn to him when they have needs
- I felt so loved by Rene to see how dedicated he was to being mum, dad, wage earner, food preparer, taxi cab, husband, supporter, house keeper all by himself. Occasionally he slept a little too. Obviously he loves us all very much. He really held us all together
- I learned a lot about surrendering, giving up control and trusting in God
- We survived another trial, and it strengthened us
- I finished New Moon and started on Eclipse :) (Twilight series)

And best blessing of all, he's going to be ok and we're home.

I've got to get photoshop installed on this laptop!

Friday, February 26, 2010

So far so good...

Still no fevers! He had one low grade fever just below the cut off point. They are planning to take him to get the PICC in today at 11.30 which means maybe home tomorrow!! Possibly even today. This is the first I've heard them throw around the word "home" so much. I'm so excited I had to post. This has been a loooong few days and I'm so ready to get home.

Thursday, February 25, 2010

God answers prayers!

We've been so overwhelmed with support. People bringing gift boxes and food and flowers and arranging meals. Kind messages. And most of all prayers. My boy has been added to so many prayer chains and personal prayer lists. It's very touching. We are grateful. And God is listening.

Turtle went under the knife again today and apparently there is not much pus left to drain. Dr thinks he got it all. There is still a chance Glenn might need repeat surgery to drain his thigh because there was some up there that he couldn't reach, but they hope it won't be necessary. The cultures are still inconclusive so they are starting new ones. And they are baffled by it. They're holding meetings to all talk about it because they've never seen this before. But, whatever it is, it seems that the antibiotics are killing it! Thanks God! He's fighting it and getting better.

We're still in isolation, but it all looks like there's a light at the end of the tunnel. As soon as we are fever free for 48 hours they will put in his PICC and we're good to go. Still doesn't look like we'll be home this weekend but maybe early next week.

For now, he is in a leftover drug induced deep sleep on my right arm, making my fingers go numb but I daren't move him. He looks like an angel, all wrapped up in his pastel yellow blanket with his long lashes kissing his chubby little cheeks while he meows in his sleep. No I didn't intend to say "purrs" but messed up. He is actually meowing in his sleep. Good dream I guess. He keeps my mouth upturned and my spirits uplifted for sure.


Quick update...there is a *chance* he might get the PICC in tomorrow and discharge on Saturday. So far no fever, but the surgery today might yet cause a spike...We really don't want it to! Not that it would be anything to worry about, but it would delay hometime. I'm getting my hopes up now....

Wednesday, February 24, 2010

I guess there was a moral to the story after all

Remember this post?

Turns out my instincts were right after all. He did have something very wrong with his leg, and there wasn't an accident or something that I missed.

The story starts Thursday night. He started limping again and complaining that he was sore. Since the ER had said it was probably a muscle strain and they could do nothing we decided on Friday to call and make an appointment with a chiropractor. The appointment was set for Tuesday. But by Saturday morning it was still sore and we thought it seemed more serious than just a muscle pain. So we took him to the walk in clinic.

A few hours of chasing incredibly ansty kids around the waiting room later and an uncomfortable blood test later we were sent home with a prescription for amoxycilin.

By Sunday he couldn't bare weight on it and it was swelling and red and hot and he was getting fevers which came and went. We watched him carefully all day and by evening we decided it was just getting worse, so we took him in to the ER.

ER was busy. Zoe and busy ER waiting rooms don't go well together, so we learned. We got there at 6.30 pm and he was finally taken through to be seen at 9pm. In the interim Zoe had crawled under chairs, messed with people's catheters, ran out the front doors, jumped off of tables, upturned tables, climbed up walls, rattled door handles, pulled emergency cables in the bathroom, screamed her head off and continuously bolted down the hospital corridor. She is much faster than her fat, unfit mother and it must be highly amusing to watch me flop around with a red frustrated face while I do my very darnest to run as fast as I can down this very long corridor, reaching my hand out in front of me, inches away from catching her, Zoe flying a couple paces ahead of me with a look of utter excitement and laughing an evil laugh, soaking up the thrill of the chase all the while.

When they called "Glenn" at 9pm we were so relieved. Rene had the privilege of remaining with the 3 girls in the waiting room while I sat in the chair in the ER ward with a sleeping baby, waiting for the Drs to come. They did some more xrays and took some more blood, then at midnight they told us we'd have to transfer to the ER at the Children's hospital in Omaha. I was a little shocked to be honest.

We carted 3 exhausted, hungry (hadn't had supper), confused kids in the car and started our 75 minute journey into Omaha. When we got there, Rene sat with the girls in the waiting room again, but this time they were all sleeping and it was much easier!! By 4am we were admitted and the other half of my family went to spend the night in the rainbow house nearby.

Turns out he has a violent bacterial infection in his knee. They were concerned that it had been going on for 3 weeks and one major worry was that he'd have permanent damage to his cartilage. Monday afternoon he went under general anesthetic and they did an MRI on his tissue and then cut open his knee to remove as much pus as they could and then inserted a drainage tube.

Rene and the kids were back in Lincoln gathering some supplies. He had the day off on Monday but his PTO is all used up. So we knew he'd have to return to work. I was hoping at first that this would be like an outpatient thing, they'd drain it then send us home. I sat in the waiting room while he had the surgery. I haven't felt so alone in a long time. I am used to constantly having a huge to do list with usually 4-5 things on that list at any given time that are of utmost urgency, or at least appear that way to young children. I am used to always having a sock to pick up or a drink to pour or a bum to wipe or someone who needs a hug or a fight to break up or a spilled box of cereal to sweep get the picture.

Suddenly my girls weren't there. My soul mate wasn't there. And my boy was being cut open. He had been poked and prodded so much by this point and had looked up at me with begging eyes while men and women with coats poked and prodded and hurt him, and we were both starting to grow slightly desensitized to that palaver. They had given him a relaxant before they took him away and it made him "drunk". He gazed up at me and laughed his head off. His laughter was contagious. He had no idea what was about to happen to him and my laughter was accompanied by involuntary tears. But his giggling, happy, woozy face was beautiful. And then I had to walk away. Walk away from my handsome, little, euphoric comedian, walk through the double doors, around the corner down the elevator and into a waiting room and sit. And wait. There was a TV on which irritated me, so I sat at the other side of the room, with a fish tank and I made many cups of coffee (Yes, I hate coffee, but I was tired and I needed something to mess with) and watched the fish and tried to let my mind go numb. I heard other families talk about the horrible things they are going through with their kids' long term conditions and I was so thankful that this is not as serious. And I was in awe at their strength. They all talked so matter of fact while their kids were in surgery for the umpteenth time and here I felt like the lonliness and fear and lack of control in this situation was crushing my lungs.

I paced the floor a couple of times in the few hours I was down there, but mostly, I just sat and watched the fish. I prayed. And I waited. And then the surgeon came to talk to me. He took me into the little room and explained how the procedure went. They think they got all the pus but they are not sure, there are some pockets left. I stared into the surgeon's clear eyes while he explained it to me in a velvety, hypnotic voice and I nodded. It all seemed to make sense. We won't be certain for a while, but it looks as though there is no cartilage damage. That's very good news. There were excessive amounts of white blood cells and the infection looks aggressive. They are suspicious it might be STAPH/MRSA (superbug) but it might possibly be kingella. It will take a few days to get cultures back until we know for certain, so we will treat for both just now. I flinched a little at hearing MRSA. I nodded and took it all in and figured I'd deal with the emotion aspect later on, when I'm alone again. Suddenly I really wanted to be alone. He continued speaking about plans of action and technicalities that I tried to grasp but the words were flying all over the place by now and my internal dialog was getting obnoxiously loud.

And then he said, "so he'll be staying here for 4-5 days minimum, ok?". My cool, calm, monotone "OK" was automatic but came out so fast and forcedly that it was obviously a lie. I was not ok. My head started to spin and the previous night's lack of sleep all hit me at once. The room was very bright and I was suddenly aware of the rhythm of my heart pounding through my chest. I focussed all my energy on getting through the rest of the conversation. Just make it through this discussion without looking like a fool. I couldn't really hear anything else he said. He got up and held to door for me. I thanked him and walked towards to box of tissues on the desk at the other side of the room. As soon as I had taken 3 steps the tears started rolling, silently. I felt eyes burning into me from all over the waiting room. Eyes of parents who are going through far worse than we are, and are holding it together much better than I am. I finally made it to the tissues, forcing my gullet to be silent and putting my energy into keeping my lungs from heaving. The box was empty. "There's another box over there maam", said the Dad who was waiting to hear if his daughter has Cycstic Fibrosis. "Keep it in perspective Niecey", I told myself.

I grabbed a handful of tissues from the other box and bolted to the ladies room where I cried my eyes out. The kind of cry that feels like an abdominal work out. It's not just from the eyes or the lungs. The kind of cry that makes other people in the ladies room wonder what the heck is going on in there. The kind of cry that leaves your eyes looking like someone removed them, dropped them in acid for a few minutes them put them back in place and it takes at least an hour before they go back to their normal color. I cried and I contemplated who we could ask to look after my girls while Rene was at work. I imagined them going to bed without their customary kisses and cuddles and stories from Mum. I asked God to help me get through the next 4-5 days only seeing my beautiful girls for 1-2 hours in the evening. Then I toughened myself up and committed to just coping with this an hour at a time.

And that's where we're at now. The kids are with our awesome, amazing neighbor through the day, then Daddy picks them up, grabs supper and comes out to see us for about 1.5 hours before heading home and crashing out. Everyone is tired. We are still waiting for cultures to see if this is MRSA or not. He is in isolation here, so everyone has to wear masks and vests. They are going to put a PICC IV in him, but haven't been able to get his temp low enough to do it yet. And he might need another MRI and drainage surgery tomorrow.

Ever since we turned the calendar page to February, Zoe has been counting down the days until her birthday. She had the order of events all planned out and told me about it multiple times a day. "I will wake up then open my pwesents. Then we going to a pirate show, then we can come home and have Strawberry Shortcake cake with Strawberry Shortcake and Custard and Friends and a rock." She's been so excited and I've been playing it up big time too. I wanted to make a huge deal out of it to help her know how special she is to me. And now I might not even be there. She turns 3 on Sunday. We are considering postponing her birthday without letting her know. I'm not sure ethically how that would sit....

I miss them so badly, I long to be running around pulling my hair out over Zoe and her mischief. It drives me wild sometimes, but the girls are my life.

Turtle is in very high spirits today. They took him off fluids because he's keeping foods down and he's no longer on all the monitors. If he gets the surgery again tomorrow he'll be hooked up to everything again, but for now he's free and I can hold him and feed him. He has a huge cast thing on his leg so it's awkward, but it's not hurting him too bad. And we're just waiting. Waiting to find out which bacteria it is for sure. Waiting to see if the treatment is working or if the bacteria is spreading. Waiting to see when we get to go home.

Prayers would be much appreciated. They are not too worried about him, he's certainly not in critical care. But it could get serious. It's aggressive and they are treating it aggressively. Specifically I'd love prayers that the antibiotics will work, that he won't have any more fever today so he can get the PICC line in tomorrow (otherwise they have to wait and each day means an extra day we have to stay here), that I will be able to handle the hospital stay, emotionally and that Rene and the girls will be happy and sleep well.

Thanks for reading this. I mostly typed it up for my own benefit. To help me process it. I see so many sick kids around me and I am reminded how blessed we are to have the health we have. I hate missing the girls and I hate seeing my poor boy as helpless as he is here.

But we'll get through. He's a tough kid, and has such a gentle spirit. It will help him heal. And so will the prayers and the love. I am not leaving his side.

Monday, February 15, 2010 (and iKaya)

A lot has happened since I last wrote.

I don't have the time nor emotional energy to go through it all in detail...
So here's the condensed version with much left out, or you can ignore it all and scroll to the bottom to watch this week's iKaya!

Almost lost Zoe in a small local supermarket, scared the living daylights out of me. She had left the store and was outside. :(

While driving away and getting over the shock of losing Zoe, the van broke down and overheated. We rolled to a safer spot, got a cab home and had the car towed for repair.

Decided to get stuck in to some major projects I had to do on the laptop. Camera lens fell on laptop from on top of fridge and completely killed it. Laptop won't even boot up. Had to disappoint many people and not complete projects.

Grieved over loss of laptop. Sulked.

Came down with yet another sinus infection. Kids got sick.

Was bored without Internet. Could technically use my husband's netbook like I am just now, but it frustrates me very much so I'd rather not. (I'm making an exception for this post though.)

Was blown away by how much stuff I could get done without the internet. Kids started playing hard with me all day and thus sleeping better at night. Cooked lots of good food. Laughed. Lived. Sorted through some major chores that I had put off for months. Bonded with kids, made memories.

Got van back, but didn't really go anywhere. Enjoyed staying home.

Bought awesome tent with tax rebate. Put it up in livingroom, kids slept half the night in it. Excited for Spring so I can go camping. I know, me! The hotel Queen. Actually wanting to go camping. Something weird going on here...

Saturday night couldn't sleep. Incessant pain in tooth. Paced floor all night. Woke Rene at 6am for emotional comfort. Whined like a baby and didn't handle pain well.

Monday got dentist appointment. Need root canal tomorrow. Am scared. Tooth still hurts though and won't ease up so I'll be glad to have it done. I think I'm getting old and falling to pieces.

Rene ordered new laptop with tax rebate today. I'm almost sort of dreading it arriving. I'll have to check my email, for one. Which must be SOOOOOO overfull by now. It will take a day just to go through emails.

I have a sort of Internet addiction. There, I admitted it. And this past week+ I've grown to love not being online. The kids and I have really benefited from me not having my face stuck in a laptop all day. From having their mum be more than just physically present. So I plan to put some serious restrictions on my computer time when the laptop arrives. I might even install software to enforce the restrictions. I won't be checking my email a hundred times a day. I won't be taking on many new projects. I will still edit my pics and put them online and plan to still occasionally post here. I won't keep up with tot talk tuesday though..if any of you guys want to start it up on your own blog, feel free.

Oh and another thing we did was borrowed a new camcorder which we might want to buy from a colleague of Rene's. We tested it out with iKaya. File sizes are huger but it looks more crisp. Decisions to make for sure...

So, here it is. A bit of fun for the week. My darling daughter starring in her wonderful webshow. Fantastically edited by Uncle Doug (he hates when I give him credit for some reason) as always.

Hope you liked it. :) Wish me luck at the dentist (spare the horror stories please), and I'll see you sometime. Whenever I can squeeze it in. Because living real life is my priority and I can live with my face stuck in a laptop after the kids have grown. But not now. :)

Wednesday, February 3, 2010

instinct schminstinct

I've always been a huge advocate of mothers following their own instincts.

I had a bad day for that yesterday. Well, starting Monday really. About midday Turtle started to get really upset. I figured he was grizzly and needing a nap. He often naps around that time. so I laid down beside him and nursed him and patted his tummy. He gradually became increasingly upset. An hour into it his back was arched and he was high pitched screaming. This was not a happy boy.

I had changed his diaper and he was rashy, so I thought maybe this was why he was upset. I patiently patted him and help him and told him it's ok. Eventually he fell asleep....for about 20 mins then started back up again. For the next 24 hours he pretty much cried for 5 mins, then tried to sleep for 5 mins. He wouldn't eat but was nursing.

Because he was so upset, I was carrying him or laying beside him the whole time. He was up almost all night crying and saying "ow ow ow". He was signing sore, too. I assumed he was getting this sinus/ear infection we had. I gave him tylenol but it didn't seem to help.

Looking back now, I'm kicking myself that I didn't check him all over. Why wouldn't I do that? What kind of mother am I?

He had a moment of calm at about 11am yesterday and I sat him in his high chair and he ate some breakfast. When he was done I placed him on the floor. The first time he had been put down since the day before! And he started crying and limping towards me. Oh. Darn. Why didn't I think to check his legs?! Poor guys has been suffering pain in his leg this whole time! So I laid him down and tried moving his legs around. He wasn't tolerating bending his left leg and he'd cry "ow ow ow" when I tried to move it. I stood him on the floor again and he reached for the wall to help himself limp along, then collapsed on the floor.

So I called Rene and he came home. My awesome neighbor looked after the girls (seriously, I hardly trust my kids with anyone, but she is fab) and we took the wee laddy to ER. I was certain it was broken because it reminded me so much of when Lana broke hers.

And I beat myself up for not even noticing how it happened, and not realizing he needed help.

A few hours, blood tests and xrays later we were told he didn't have a fracture nor an infection and he probably just strained a muscle. We went home feeling so confused and by evening he was waddling about all over the place. He almost walks perfectly on it by today.

So I was wrong twice. So much for mothers intuition. *sigh*

I don't really know what the moral of the story is, though I'm sure there must be one somewhere...I guess it's spend less time online and more with your kids so you notice if they get hurt. (D'oh.)


In other news, I was interested to read about the latest SIDS research released today. Sounds like we might be getting somewhere. It's not the first to suggest a link between SIDS babies and low seratonin levels, which effects respiratory and heart regulation. Helps explain why soft bedding is a no no and why you should always sleep baby on their backs. I pray we can figure this whole thing out and then start work on prevention.

Monday, February 1, 2010


Lana in her world. Ah I love her.