Saturday, September 25, 2010

Today is a much better day for Lolly.  Ben stayed here last night, and I think they both got some sleep.  Pain Services prescribed Dilaudid (an amazing painkiller) and Valium, which have both been helping immensely to keep her calm and feeling good.  Poor Lolly had so many things done yesterday (PICC line, 4 x-rays, dialysis, blood transfusion, Andersen tube placed in her nose to suction out her stomach for the next several days, etc.).  It was a really long, very busy day, and very stressful for her.  She was given a lot of both medications, and by the evening, her respiratory rate was about 10-12 breaths per minute (which is very slow).  The nurse held off on giving her any more for the evening (it has a long residual effect), and she still did very well.  She has had only minimal amounts of valium today, and she is feeling really good. 

Her antibiotics seem to be kicking in and stopping her Pneumosis coli from getting any worse.  The surgeon came to check on her today, and ordered another KUB x-ray for today.  After that, she'll get one x-ray a day to monitor the Pneumosis coli.  We are very grateful that they were able to get on top of it so early, and think that she is also feeling much better because that problem is being addressed.

It's been a very quiet day for Lolly- she has peed FOUR times today- and did not need any dialysis!!!  Her blood pressure has been high, but is coming down as she pees of some extra fluid. 

She seems to be feeling good, and wanted me to carry her when I got here this afternoon.  She looks so pretty, but does not want to wear anything but a diaper, will NOT allow me to touch her hair, and doesn't want any chapstick (even though her lips are soooo dry), and she still looks like a princess.

I have had a wonderful day with the boys and Sammi.  We took the boys miniature golfing, which they were so excited about.  We ran some errands and had a good time together before coming up to the hospital.  There were several arguments and issues with all three brothers in the back seat of the van.  Although fights aren't my favorite, I am very grateful that they have each other to fight with.  Little Lolly's car seat was too empty for my liking.  We missed her, but she was having a good time at the hospital with Ben, watching football on his lap, just like she does at home.

Mom and the kids and I are at the hospital while Ben is at the apartment, watching the BYU game.  We had all the kids in the playroom together- Luke actually made Lolly LAUGH for the first time.  She hasn't shown a great deal of excitement at seeing them at first, so it was really good to see her show some signs of her normal self again.

Things are good today.  Very good.

Long day...

This has been a really, really crazy day.  So much has been going on.  I've had lots of people tell me that they wait and wait for an update, and get anxious when I don't post anything.  For any of you that have been waiting today, I'm sorry it's taken so long, but thanks for checking!  Life here is really crazy- most days I don't get a chance to eat lunch until about 3 p.m. and dinner about 10 p.m., and it's terrible, but I haven't had time to go "pump" for Sammi.  After not being able to get ahold of me for several days, my sister was finally able to catch me on the phone.  She said she just pictured life in the hospital to be a day spent lounging in a chair, surfing the internet, watching Lolly sleep.  It is anything but!  If I have 2 minutes to chech my email, I feel grateful.  There are many of you who I'd love to respond to personally, and will, but things have been nuts.

So...about today- this new development, Pneumatosis coli is perhaps Lolly's most serious complication.  It is potentially fatal, but that is, of course, worst case scenario.  I am in awe at all the terrible things that E. coli has done to her tiny little body.  Two weeks ago, when Lolly got sick, I had NO idea she could possibly be so sick, or that she could have so many complications.  

The Pneumatosis coli are air pockets in the muscle wall- very likely the cause of all her horrible, horrible pain and belly distention.  It is very serious.  Today, the surgery team has been checking on her.  The will not operate unless her bowel is perforated.  The docs have said that we will know if her bowel is perforating because her vital signs will go nuts and she'll be in a great deal of discomfort.  We're really hoping we can avoid surgery, but the surgeons told me there's really no way of knowing whether or not she'll need it.

Because of the Pneumatosis coli, Lolly can no longer receive nutrition through a feeding tube.  She had to have TPN nutrition through an IV.  Because she needs really dense nutrition (to give her calories to get better) without a lot of volume (because she's in acute kidney failure), they had to put a PICC line in (a semi-permanent IV that is fed through her arm toward her heart).  It was kind of a big deal, but she had a large group of people at her bedside, with two Nurse Practitioners here to give her mild sedation.  Her blood vessels are so tiny and they tried, without success, in her first arm at first, and finally got it in her right arm.

She's now receiving her TPN nutrition.  This might have to go on for a really long time.  She is NPO (nothing by mouth).  Remember...she's two- she will NOT like this.  I'm scared...  Last week, we'd have to say things like, "Sure, Lolly, you can have a little drink, in about an hour."  Now, we'll be saying things like, "Sure, Lolly, you can have a drink, in a few weeks."

As soon as she got out of sedation, Lolly got to start dialysis- a 3-hour treatment tody.  Before dialysis, she peed THREE times today.  That is AWESOME!  It seems like anytime we do anything to really tick her off, she pees.  

After dialysis, Lolly is due to have a blood transfusion (boo!), another KUB x-ray (every 6 hours to monitor her Pneumatosis coli, and at some point, she has to have an Anderson tube put down her nose- like her feeding tube was.  An Anderson tube has a much larger diameter than her feeding tube, and is put down, to her stomach, to suck out anything remaining there. 

It's been a really long day for her.  At times, I find myself asking, "How much more can she possibly take???"  But she deals with the latest thing, is ticked off for a while, then asks for a wagon ride to make it all better.  She LOVES her wagon rides now!  Loves them.  She never wants to get out of her wagon- even in her hospital room- she'd rather be in there than in her room.  Trey was the same way, after his last heart surgery.  He felt like his wagon was the one safe place he could go, and he wanted to sleep in it. 

It has been a really hard, tiring, emotional day (and that's just from my viewpoint- for Lolly, it's been about 10 times worse).  Our nephrologist, Dr. G, told me to prepare for about a month here.  That was really hard news to take.  And I honestly can't think further than one day ahead, for fear that I'll burst into tears. 

The best news of the day?  Ben and the boys are almost here!  I haven't seen them in nearly TWO WEEKS!  It has nearly killed me.  I CANNOT WAIT! 

Trey's birthday is this Sunday, so I hope to do some fun things with the kids.  I am more excited to be with them than words can possibly say. 

UPDATE: They are here!  I've never had such conflicting emotions- I am sooooo happy and sooooo sad, all at once.

Is this for real???????

It's 12.28 p.m.- Friday morning.  I'm still up, in Lolly's room.  The excitement has returned (not in a good way!), and I can't sleep.

A surgeon just came in to evaluated Lolly to see if she might need emergency surgery.  The word of the day today is Pneumatosis Coli.  Apparently, Lolly has pockets of air in her bowel- air where it should not be.  At first, it sounded quite harmless, but the fact that the docs called someone from surgery to come right away tells me that it's not.  And the fact that the doctor told me that if it were his child, he wouldn't leave the hospital tonight.  Mom was going to take another night shift here, and I was going to head home with Sammi; now we're all staying.  It's already been a wild night- and the night is still young!

My mind is somewhat reeling right now at this latest complication, but at the same time, I am sitting in amazement at the tender mercies of the Lord.  Writing out my thoughts has really helped me to put everything in perspective. 

So...follow me here...Normally, I would not think that the diagnosis of Pancreatitis would be a blessing for any child.  My mom had one of her Facebook friends tell her that Pancreatitis is worse than labor.  But, because of the Pancreatitis, Lolly needed an NJ tube to rest her stomach.  This afternoon, they started giving her NJ tube feeds.  The feeding pump machine giving her feeds kept alarming, and our nurse suspected there might be a kink in Lolly's NJ tube.  She tried to reposition her to see if the formula would go in, and it worked for a little while before it alarmed again.  Our nurse told me that if it didn't work, we'd have to go to radiology for a KUB (an x-ray of her Kidneys, Ureters and Bladder). 

The feeding pump worked for a little bit, and I was SO GRATEFUL because Lolly was sleeping so peacefully- I did NOT want to wake her.  Finally, trying to make Lolly's tube work for a little while, our nurse decided we'd better just head down to get the KUB.  We went down, got the x-ray, and saw a very definite kink in Lolly's NJ tube.  I figured they'd simply put a new one in tomorrow, and we'd be good to go.

So radiology called up after we got back to the room- she did have a kink, but they were also able to see that she had Pneumatosis Coli.  Long story short- Pneumatosis Coli is usually benign (meaning that the problem can resolve itself), or it can be very dangerous.  The gas can build up so quickly that it causes the bowel to perforate, spreading bacteria throughout the abdomen.  That. Would. Be. Bad.

So...one way to look at this is that it's a blessing that Lolly got pancreatitis, which causes her to need an NJ tube, which happened to get kinked, which required an X-ray, which led to the diagnosis of pneumatosis coli, which was a huge blessing because they are now on top of it.

Another way of looking at it is that it is a total rip-off for a little girl who has already been through too much because now, instead of being fed formula through her NJ tube, she'll require TPN nutrition through an IV for quite a while, as well as IV antibiotics. 

Probably both ways you look at it are true.  Another crazy development in Lolly's life.  I wish her life was boring.

The surgeon and the doctor will both be checking on Lolly frequently throughout the night.  That's never a good thing.  It's a really good thing if everyone wants to leave you alone.

But there were a few really good things that happened today:

Pain Management Service came to visit.  They are my new favorite group of people here.  Instead of "chasing" Lolly's pain like we've been doing (but never quite catching it), Pain Services are staying on top of her pain.  They came this afternoon, started her on some meds, and IT HAS BEEN AMAZING.  When she's been awake, she has been calm and quiet.  Quiet meaning no moaning or groaning or sounds of misery.  I haven't heard quiet from Lolly when she's awake in over two weeks.  Also, when she's awake, she actually seems to feel good for the first time.  This evening, she took a nap in her wagon.  When she woke up, she didn't look ticked off, and when I asked her if she wanted to play with a toy, she said yes.  It was AMAZING.  Really.  Amazing.  The child who wanted nothing to do with toys wanted a toy.  And she played with toys.  Lots of them.  Really.  It was so wonderful.  She had her baby doll with a tiara on and necklaces on and a ball in each hand- it was awesome.  And she was very, very content. 

I thought we were going to end the day on a very good note, but it's actually turned out to be quite crazy.  I'm really tired, and I hope to get a little sleep before her next KUB at 4 a.m. (they are going to see if the Pneumatosis Coli is getting worse, or hopefully better).

I have no idea if this post made any sense at all.  It is after 1:00 a.m., afterall.  This has been crazy.  Today, I told one of the docs (Meri- my favorite!) that it seems like there is a rare possible complication with this HUS, Lolly seems to find it.  She's tracked down just about every possible complication she could have so far- seizures caused by encephalopathy, dialysis caused by acute kidney failure, intubation caused by fluid overload, pancreatitis caused by who knows what, blood transfusions needed because of terrible lab numbers, Pneumatosis coli caused by unwanted bacteria in her gut, etc...  E coli is horrible.  I had nooooo idea what poor Lolly was getting into when she was diagnoses with HUS (Hemolytic Uremic Syndrome).  This is crazy. 

A better day! Thursday, September 23, 2010

(July 24, 2010, the day after she turned 2)

Poor mom and Lolly had a really bad night.  Lolly was in a lot of pain from her pancreatitis, and during the night, she was maxed out on all the oral pain meds she could get, but she still was in pain and could not sleep.  The nurse called me sometime during the night to get permission to put an IV in so that they could administer IV pain meds.  Several days ago, Lolly accidentally pulled the IV out of her foot.  (I wouldn't put it past her to pull an IV on purpose, but this time, the port got stuck between the toes on her other foot, and it got pulled out).  I told them to please do anything to make her feel better. 

They put the IV in and gave her some Fentanyl, but it only worked for a very short time.  My mom called me just before 8 and told me that Lolly really needed me.  I hurried up to the hospital sent my mom "home" with Sammi.  I picked Lolly up, and for the first time, she wanted to be carried.  Usually, she just hurts too much.  She sat on my lap and whined.  I decided to try to distract her, and got out some bubbles.  She got really mad, and yelled the whole time I was blowing bubbles.  It took me a few minutes to realize that she was mad because SHE wanted to do it- she didn't want to watch me do it.  So I let her have the bubble wand.  She got angry when it dropped into the jar and I had to help her out.  So we did bubbles for a few minutes.  Then I got out the play dough.  She yelled at me for a few minutes while I played with the play dough, then she wanted some, and played for a few minutes- still letting me know she wasn't happy.  Then we tried coloring.  I colored; she yelled.  Then she wanted a turn.

The QUEEN BEE has returned!!!

The DIVA is back in town!

Holy cow...this is going to be a long hospital stay here with her!  She has no desire to be pleasant.  And after our worries last week about whether or not she'd ever wake up, it's great to see her true personality coming back.  We had to walk on eggshells around her back when she was healthy- not it's about a million times easier to set her off.  She is quite the girl!!!

We went down for her NJ tube placement around 11 a.m.  A friend from high school was the radiology tech.  Poor Lolly had to be strapped to a board, with her hands tied above her head, so they could advance her NG tube further.  It was sad, but, thankfully, didn't last long.  She was angry enough during the procedure that she wet her diaper (her FOURTH time peeing- and a whopping 219 ccs this time!!!).

Once we got back to our room, our nurse had a great surprise- Lolly is off precautions!  When a child here has any type of infectious disease, they are put "on precautions."  That means that all medical personnel have to wear a gown and gloves when they come in to a patients room, and the patient is not allowed out of the room, for fear that they might spread any disease.  A reasonable practice, but enough to make any kid on precautions go crazy.  Lolly doesn't trust ANYONE wearing the yellow gown and gloves, and she had been able to leave the room once in a week and a half.  Now that she is off precautions (because she's had three stool samples in a row come back as negative for E. coli), she is allowed to go all over the hospital.

I was jumping for joy when I took her to the playroom this afternoon.  I thought she'd be so excited!  She didn't care AT ALL, and wanted nothing to do with it.  We went outside.  She was mad.  I tried to show her cool things out the window and below the balcony.  She was mad.  Finally I just pulled her back and forth, along the entire floor, about a million times.  She didn't look happy.  In fact, she looked quite angry (especially when we ran into several of her doctors and stopped to talk).  I know she liked our walk  because whenever I stopped, then she got really mad.

Lolly had a date with her dialysis nurse, Devin, at 2 p.m.    She was not excited (no offense, Devin), and didn't want to get out of the wagon.  Her catheter in her neck only works when she's in a certain position (lying calmly in her bed), so she had to go to bed.

Lolly is finally resting right now.  She's in the middle of her dialysis treatment; I haven't heard if she'll be getting a blood transfusion today (it's been several days- yippee!!!). 

We feel very blessed and thankful for all the support and especially for Lolly's improving health.  And since my mood is 100% dependant on her mood, today is a good day.

Lolly is...

tired

thirsty

frustrated

sad

tired. of. it.

She is on "bowel rest" because of her pancreatitis until tomorrow, when they'll place the NJ tube.  She is supposed to be NPO (no food or drink in her mouth), but they are allowing her to have ice chips or little sips of water.  Since she is two, and S.T.U.B.B.O.R.N. and would rather have APPLE JUICE than WATER, she is choosing to have nothing. 

Tonight, she has been moaning and tossing and turning.  Her cry sounds like a little kitten.  It is so, so sad.  Mom and I have been sitting here crying and crying.  It is HEARTWRENCHING.  Poor mom has it double bad because she is worried about ME and LOLLY. 

Lolly has not wanted to be carried at all today.  She doesn't want to be distracted or talked to or played with.  To get her asleep, I just sit close by, so she knows I'm here, and listen to her moan as she finally drifts off.  As I was sitting here just now, waiting for her to go to sleep so I could go (mom is taking another night shift...bless her heart), the nurse came in with an anonymous delivery.  Someone had left a gift, for Lolly, with the security guards downstairs.  The nurse brought it in- it was a pink Fisher Price doctor's kit with the words, "Lolly's Payback Kit" written on it.  Lolly immediately quit moaning and perked up when she saw it.  I asked her if she wanted it, and she did.  Then she wanted to hold and play with it while she rested in bed.  A small miracle, I tell you what.  She has not wanted to play with ANYTHING all day.  Nothing.  She's holding all her doctor kit toys as she drifts to sleep right now.  Whoever brought it, thank you for making my girl's night!  She's almost asleep now, with a pink blood pressure cuff in her hand.  We even got out the camcorder to mark this momentous occasion- she was PLAYING!!!

Tender mercies and small miracles get us through each day.  We are overwhelmed at the outpouring of support for our little girl.  Thanks to everyone for checking on our girl throughout the day.  Her blog is about 10,000 times more popular than my blog ever has been!  Thanks for loving our girl.  We think she's amazing.

One more thing...

Pancreatitis it is.  (Boo!).  NJ tube placement tomorrow.  (Boo!). 

I'm not a fan.  Not a fan at all.

But on the bright side, she is sleeping now.  I think it's time for lunch.

Wednesday, September 22, 2010

Lolly seems to have a pattern of good day/bad day/good day.  Yesterday ended up being a good day, and unfortunately, today is a bad day. Lolly seems to be looking for every possible bump in the road- today's possible bump is PANCREATITIS (more on that in a minute). 

Lolly had a really good night, which was good for her and good for my mom, who was on the night shift at the hospital.  The Benadryl and melatonin really seemed to help.  This morning though, she has been in a lot of pain, and has just cried and cried (and there's nothing I can do to help her).  Yesterday afternoon, her stomach started bloating up, and she's been having bad stomach pains.  Her belly button is normally an "outie," but now it is a major outie.  They stopped her NG tube formula feeds last night, she has only requested 30 ccs (2 tablespoons) by mouth all day.  She keeps saying, "owie."  :(

The doctor thinks her pain might be caused by pancreatitis.  They will know later today, after they draw blood and run some labs.  If it is pancreatitis, there is nothing they can do to treat it- it normally takes 3 to 10 days to get better.  In the meantime, her NG tube would be changed to an NJ tube.  What does that mean?  Right now, Lolly's feeding tube goes in her nose, past her throat, and down into her stomach.  An NJ tube goes in the same way, but goes past her stomach, into the jejunum (small bowel).  Trey has had NG tubes lots and lots of times, and one time, he was having problems, so they changed it to an NJ tube (which is done in radiology, using dye, to make sure it's in the right place).  The main reason why I am crossing my fingers that she doesn't have pancratitis (besides the obvious reason- we don't want her to have MORE complications) is because if she has an NJ tube, she wouldn't be allowed to have anything in her stomach...which means NO eating or drinking anything.  She would get nutrition- either through her IV or into her jejunum, but her stomach would get a vacation.  I'm not sure Lolly or her mother could handle that very well.

Lolly is getting dialysis right now.  Thankfully, she's been given some pain meds and Benadryl, and is sleeping now.  When she's been awake today, she's been really, really sad. 

In other news, I tried to talk to Luke on the phone today, and he refused.  :(  I'm quite certain he's mad at me.  My mother-in-law said he's doing well, and he LOVES to go over there, but I'm sure he's confused about everything going on.  Ben goes over to see the boys every night after work.  Last night, they played football together.  Tonight, he's taking the kids to the ward party.  I'm so glad he's there to spend time with them.  I just miss them so much.  It's really hard to feel a part of their lives with a short phone call each day.  I'm grateful they are being cared for so well; I just miss them.