Online Memorial

http://www.broussardsmortuary.com/memorials.asp

http://www.broussardsmortuary.com/memorials.asp?page=mdetail&id=7048

And the obituary:
http://www.broussardsmortuary.com/services.asp?page=odetail&id=7048

Mallorie died early this morning.  Somewhere between 4 and 5 AM.  My mom is trying to catch up on sleep (she hasn't slept much in too long) and she doesn't have the heart or energy to post this right now.  I'll let her revise or delete this and write her own when she's ready, but I think a lot, if not all, of you would like to know.

She was admitted yesterday morning to our local hospital by Dr. B. (God BLESS her) after an appointment where her blood-oxygen levels were very low.  She had pneumonia, it turns out.  Again.

Things went down hill this morning.  The staff at our hospital worked so hard to get her heart beating, even doing what some would consider "extraordinary measures."  They weren't just going to let her die.  It was when my mom knew that she was gone that they stopped.  No one gave up on her.  Not one.  The staff loved that sweet baby and treated her like any other.  They are such a blessing to us.


Carley

3 guesses

I don't even want to count the number of hospitalizations this girl has had since February 11. 

I also don't want to count the number of times that we've been told someone has found "the last" IV site for this girl.  It's the thing that ate its way into my brain and made me want to drag her home with a PICC line on June 30, even though we had nothing that needed to be given in that IV.  So we flushed that line twice a day, checked for blood return, heparinized it, ... until it gave back no blood return, even after we got it de-clotted.  So I let it go.  I had said all along, that when we lost blood return, I knew the next fever, it would be taken out, because no one would have a way to know if an infection was in the line.  And I said at that point we'd be back to just trusting God to find her another vein, ... or grow a new one.  And of course, He has done that.  Twice.  Both of them have lasted as long as they were needed, to everyone's amazement.  And two well-loved nurses have not even hesitated to let me cut away some hair so they could try her scalp.  He takes good care of her.  And apparently, doesn't need much help from me.  He has nurses and doctors and respiratory therapists for that.

Every hospitalization, I get to learn something(s) important that we need to be able to care for our girl. This time, one of those things was the importance of positioning and CPT.  If I ever wondered if it "really" made a difference, I know better now. 

So we know these things. 

• Mallorie does, too, have IV sites.  Or she will when she needs them.

• An oral airway is a blessing from God, and in our lives, is superior to a tracheostomy.

• Diastat for seizures is amazing.  Better than IV Ativan.

• There is no end to the peace that comes from telling people she is having a seizure ... and going to get something for it, instead of going off to "discuss" and coming back to say they want to watch it for awhile.  I still have my guard up, even after all this time (since June 30), expecting to have to argue for treatment, but no one is arguing.  Even when they are still learning what Mallorie's atypical seizures look like, still no one is doubting, and since hers often can bring on respiratory difficulties, this is a blessing.
• Tylenol can sometimes stop her from heading into seizures.  This I am begrudgingly admitting, because I had to learn it from one of the residents in Houston.  I was not very happy the day I had to learn this, but today I am grateful to that resident. 
• A great pediatrician makes life easier than you would ever think possible.  A great pediatric group multiplies that blessing 5 times over (soon to be 6).  And a smart neurologist who is able to be reached by phone, and who your awesome pediatrician group happens to like, as well, is a gift from God. 
• If you are really, really lucky, one of your relatives might decide to become a pediatrician and join Dr. B's group.  So when Mallorie turns 21 or whatever magic age she'd have to be when you usually have to find an adult doctor, you can try to pull rank as "family." 
• Kefir is nothing short of a gift from God.  Still learning about this stuff, but it's cured Mallorie of the diarrhea we had been battling since June ... and prevented c-diff, despite all the antibiotics she had to have this time.

Oh, I did get one set of labwork out of that crazy PICC line.  One very relaxed blood draw done from the safety and comfort of our bedroom, and dropped off without having to bring Mallorie out in the heat, with results in a few hours.  So it was good for that.  But I really ought to have learned, by now, that God will come through and really doesn't need my help.

Feeling Very Undancey...

"Feeling Very Undancey"

by Arthur Rackham:

Mallorie this morning:

Aww... :\

Eternally Grateful, and Going HOME!!!

Mallorie's been doing great.  She's been doing so well, and I've been in a private room, with a huge pull-out couch, and awesome people here who are always trying to figure out what they can do to help me, so I should have been able to update more lately ... but the closer I get to home, the more the lack of sleep the past couple of months feels like it's catching up with me.  You should see me; I'm doing what they tell new parents:  the baby naps, you nap.  I hope to SLEEP tomorrow, while everyone else keeps an eye on Mal.

We tried out the new home CPAP machine last night.  It's so QUIET.  We won't even be able to use it to replace the white noise machine!

So we're waiting on John to come get us from Beaumont (~ 2 hrs away), and we are so ready. 

But not without a huge thank you to all of those who "carried" Mallorie (and me) during this stay.  Unfortunately, I can't even list all the names of those who have touched our lives, and given such great care to Mallorie.  Some, like Dr. Bill (who never spoke the words, "I told you so," over the surgery which he had recommended/urged even way back when), and nurse C (who brought me food and cocoa mix and STRAWBERRIES), are old friends.  Most were new. 

This picture is of the most recent group of those who spent hours observing seizures or sometimes what I thought were seizures, waiting to see how she did with extubation, calculating fluid needs :), listening, listening, listening.  I am so grateful; I hope they realize just how much.

And an extra thanks to Dr. M, who totally surprised me and made me step up to the plate, by ordering Mallorie a pureed diet from the kitchen!!  Before this stay, I'd never moved much past jarred baby foods, but when pureed broiled chicken arrived yesterday, plus a side of nice fatty gravy, and when the dietician early this morning included olive oil among her suggestions for increasing calories in Mallorie's feedings, I was able to dump the chicken AND the gravy into a few bottles with some fruits and vegetables (and even snuck in our old Baby Calm, for vitamin C), and felt such a sense of accomplishment, because we're going home, and Mallorie is going to be fine.  Dr. M already gave me her wise advice about not going crazy (told you she sounds like Dr. B from home), and a good part of Mal's daily intake will still be breastmilk, but we are so much further along today than we were in February, when Mallorie turned 3. 

I have also learned that I completely interpret information from the standpoint of my own beliefs, and that I need to be more open to just listening.  I've learned a lot more this time just by listening to the ideas of those who came to see Mal daily, and not always countering with why we do or don't do things "that way."  This was a huge learning and growing opportunity, and I think I've been able to shut up enough to do some of both of those this time.

And I owe Dr. B and my friend Dr. H from back home, a great big fat apology.  I never "heard" you, no matter how you explained it to me.  Dr. H, in particular, told me that the fundoplication did not have to cause saliva to collect in the esophagus once the opening to the stomach was reinforced.  But I'd heard that somewhere before, and all I could think was that having the procedure without being certain that it was essential, would have meant a tracheostomy.  (I do not have any issues with that procedure, if Mallorie should need it, but simply thought one procedure would lead to another and that possibly choosing the first would necessitate something which might otherwise have been avoidable.)  So Dr. H could have told me till he was blue in the face that my fears were unfounded  irrational, but I couldn't hear his explanation.  Because my mind was set, and I couldn't listen.  I think it was a good decision to not pursue the surgery 2 years ago, when Mal had problems after just a surgery, but a year ago, when she had the laryngospasm after vomiting?  That would've been a good time to listen to both Dr. B and Dr. H on the fundo issue. 

But God has been so good to keep Mallorie safe, despite my pig-headedness, and allowed me this 2 month+ "vacation" to be alone with Mallorie to learn.

Home soon.

Almost ready for home.  Looks like Wednesday. 

Mallorie is having some trouble getting in as much as she needs (by feeding tube) under normal circumstances, and since she's actually 2 lbs or more below her pre-February weight, this is a big deal.  I've started a list of high-calorie foods that can make her feedings more concentrated, like nut butters and avocado, but right now we're working on increasing the volume she takes in at a feeding.  There seems to be a back-up plan of nighttime continuous feedings, and even though I am not crazy about that option (I think stomachs need to rest, sometime), I am even less crazy about having to continue waking up to do nighttime periodic feedings like now.

I love the attending who is overseeing the team caring for Mallorie right now.  She is all about the details, and isn't missing the fact of Mallorie's weight loss and the need to make sure she will be able to continue doing well at home.  She reminds me of Dr. B in some ways.  So if she has a plan, I'll do it and stop trying to figure it all out myself.  Also, there's an interesting dietician somewhere around here who came to see us last week when we first got to this floor, and she has some recipes she wanted to share.  I think if she comes up with what she thinks is a good "formula" for weight gain, then it will be a good place to start.  I know that as tired as I am, when I start adding going back to work into the mix, it will be easy for me to lose sight of the whole picture.  So I'll happily take all the advice and help I can get from them. 

Our house was broken into and some things taken when John was out here with us this time.  It's been hard on the kids, and hard on us, and it's emotional for me going back knowing that this happened.  It really stinks.  It was just "stuff," thank God.  That's the part I'm trying to keep in my mind.

Still here

Mallorie is still in the Progressive Care Unit (PCU), working on getting back to getting all of her nutrition through her feeding tube, instead of her IV.  She's doing pretty well at that, but it's a process.  At first, her belly would bloat and she seemed really uncomfortable, so we had to slow down.  Then we tried some "home-style" feedings of baby food chicken and carrot added to breastmilk, but that really seemed to slow things down.  So now most of what Mallorie is getting is this: 

I've said before that some children are blessed with more than one mommy.  Mallorie is one of those blessed little girls, who right now is being fed through the sacrificial gift that only a mommy can give.  Every once in awhile, someone will say something like this:  "I keep forgetting to ask you this.  Where is the milk coming from?"  I don't have a simple way to answer this, but when I do try to explain, I also try to mention that this is a huge gift, and the reason that I would rather thaw and store the milk in a cooler with ice, and get up several times a night to refill syringes myself, instead of having the in-hospital Milk Bank thaw whatever amount they predict she will need in a day, and then stick an expiration date on it, so it must be discarded if her feedings are slowed down or put on hold.  And why I prefer the little 60 cc (2 ounce) syringes that must be refilled over and over, to a feeding bag where 20 cc of milk can be lost each time the bag and tubing are rinsed out.  No money was exchanged for Mallorie to receive this gift, and no "fair" price could ever be placed on this milk.  Each bag was stored by a mommy with other responsibilities, including a little one who's also receiving milk from her, and Mallorie was chosen as the recipient of extra milk that is pumped and frozen.  It's so easily digested that one doctor even commented that they want to "challenge" Mallorie's gut a little bit, and breastmilk isn't really a challenge.  It provides antibodies to protect her gut, and since I've learned about that "transmigration of bacteria" concept, I believe it's protecting other areas of her body, including her bladder and kidneys.  I cannot tell you how grateful I am to have this as Mallorie's first feedings as she recovers from surgery. 

And Mallorie got other gifts today, when some friends visited.  Her own personal hospital gowns, made by the same talented lady who made Annabel's gowns. 

They were delivered in person by Cathy.  My thought was that since Annabel and Mallorie are sisters (right?), maybe we'd be able to get some pictures of them together.  But I forgot all about the fact that Annabel and Cathy are somewhat of celebrities here, and everyone on the floor knew them.  So we had to visit in the family lounge, and I finally got to hug this sweet angel for awhile. 

Annabel isn't feeling her best today, though you couldn't tell by her smile.  This girl exudes joy whenever anyone makes eye contact with her, or touches her.  I've never known anyone like her.  Please pray that her doctors can once and for all figure out the best solution for keeping her healthy, and feeling much better.

Why we are here

I wrote this yesterday, at about 2 pm, but I needed to get permission before posting it:


We are on the PCU unit now. Mallorie's doing GREAT. And today I know why we are here.

Sometimes it's only clear to me later on, that there were very good reasons for the specifics in my life. But it's a happy time when I can see good things in the present. My "outside" job involves working for a state program for children with medical needs. I love it. Times like now, it's hard, though, to think of being away from Mallorie at all, so it is really helpful for me (because we do need the income from me working) to be reminded that I am doing what I am supposed to be doing, when I work outside the home. If it ever becomes clear to me that I'm not, I'll be happy enough to stay at home all the time.

So today we moved back to the PCU unit, and into another one of those four-bed "pods." Here's why you won't hear me whining this time: Today I met Evan's sister. She's Mallorie's nurse. In our state, among people who work much with the program I work for, Evan is a legend. And his mom, Chava, is a warrior. She has poured hours of her life and much of her energy into keeping people who influence policy aware of the needs of children with medical needs. (She also works outside of her home, which really helps me not whine.) I've heard her name and Evan's several times over the years, because I originally worked in the same region where they live, but she sort of seemed to me like a far-off celebrity.

When Mallorie was still in the NICU, a friend in Austin kept telling me to go meet Chava. She told me that Chava worked extremely close to where Mallorie's NICU was, and my friend said she would not only provide a wealth of information, but as a mom of a young man with medical needs, she could provide encouragement the way only someone who has "been there" can know how to do. Those were crazy days, and I never did manage to get in touch with Chava, but I still hear her name from time to time. Parents who have been helped to find supportive programs sometimes drop her name, like they've personally met a celebrity, and I swear they look to see if I recognize the name. I get that, now, because today, I met Evan's sister. And I sort of feel like I've met a celebrity, too. Meeting her reminded me of Evan, and of her mom. It reminds me that Mallorie does make a difference for others, too. Not just for our family. And because we get to have her in our family, she's changed us, and we make a difference, too. And John and I and our other children go out and impact the world, just as Evan's parents and sister do.

Message from PCU

We believe we will be home soon, and will be able to celebrate with you.  We love you and miss you very much!!

Tube is out!

Mallorie's breathing tube was taken out today.  They put her back on CPAP, as she had been on that prior to surgery.  She was intially working a little extra hard to breathe, and the CPAP helped for a little while, but then she started struggling with saliva, and I couldn't get it suctioned out fast enough.  Finally, they got permission from the surgery team to take out the NG tube (going through her nostril down to her stomach, so they could use suction to keep her stomach empty).  Once it was out, she settled down and went to sleep.  NO more problems since. 

That's when we realized, oh, yeah.  She only breathes through her nose, and one nostril had an enormous tube blocking it, and the other is her tiny nostril since she had the cleft repair surgery. 

She's been bathed, moved, moved, moved, changed, picked up (by me) ... :)  She's fine.  She's even wearing a very pretty purple and teal paisley gown on loan from Annabel, because she doesn't seem uncomfortable anymore.  She's only on Tylenol and an IV medication that's sort of like motrin for pain, and it's clearly plenty to manage any residual pain.  Tomorrow I expect the surgery team to say she can have clear liquids, and maybe we can even go out of the PICU to another floor. 

They did some testing from her breathing tube a couple of days ago, and the "rapid flu test" was positive.  So everyone's wearing masks, gloves, gowns.  I suppose she could have it; the hospital is one of the best places to get something like that.  But somehow I doubt it, so I'm waiting on the test that takes a few days and is more accurate, before I'm convinced that she does or doesn't have it.  The nice thing is they are treating her "as if," and giving her Tamiflu.  Can't hurt.  I have a crazy habit of putting Blistex on Malloire's lips and then when I'm done, I rub the extra on mine.  That's about the only thing I'm changing right now.  Oh, and I kiss her knee instead of her face.  But that's only because medical people are watching, you know.  :)   

Thank you all for praying.  God is so good.