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.

More Recovery

Mallorie had a rough start, but was watched so well by her nurses yesterday and last night, so her morphine was increased sufficiently to manage her pain. Just as Dr. T had been concerned about, the amount of medication Mallorie needed to keep her pain well-managed did seem to impact her breathing a little bit, because her bloodwork done to monitor how well she is breathing shows she might have been a little bit lazy about her breathing, although she definitely hasn't required a lot of support from the vent.

The plan today is to cut back on her morphine and see if she can breathe better and still be without signs of pain. If not, they can always go back up on the morphine and adjust her vent settings to help her. Since Mallorie's nurse last night was so much of a "hoverer," so careful about watching for signs of pain or fever, John and I felt comfortable leaving her room to get some sleep last night. Definitely, her face and eyes look more comfortable today, so we are comfortable with testing out to see if she can wean a little down on the morphine. I should say that I am comfortable with that; John is pretty anxious about Mallorie experiencing anything that resembles pain, so he's made it pretty clear that he'd rather see her dose get increased. :) Nothing is more beautiful than a father's love.

It was difficult last night to see Mallorie a little feverish and in pain, and everything looked sort of not-right. She looked puffy around the abdomen, flushed, and her face looked distressed (to me). Today, her heart rate and blood pressure are a little lower, and she just "looks" more comfortable. She doesn't seem to be as troubled by me cleaning and suctioning her mouth, or putting drops and ointments in her eyes, and I feel confident that she will do better and better as the day progresses. Dr. T had mentioned that the first 24 hours are hardest, but that healing begins right away, so we can hope for steady improvement. Funny how important it is to have what to anticipate actually spelled-out for us. Otherwise, it's easy to be anxious in the present, instead of fixing our hopes on what is to come: healing, less pain, overall improvement.

They were commenting this morning about those crazy "Fluid Balance" charts, so when I heard she was "positive" (more going in than out), I made sure to mention that I'd found a significant diaper leak onto her bed pad when I changed her last night. I'd shown the nurse, but maybe it wasn't charted. My goodness, what we don't need right now is for anyone to think she needs some "drying out." :)

So what we need prayers for today are less pain, good breathing, no fever, no infection anywhere. And of course, no seizures. Less pain will hopefully mean our girl needs less morphine, which not only can impact her breathing, but it also slows things down in the intestines, and when she starts taking things by g-tube again, she needs her intestines to be moving along. Right now when they listen to her belly, they don't hear a lot of sounds, meaning not lots of movement inside there yet.

If she doesn't have the breathing tube taken out today, for sure it should be by tomorrow. From there, clear liquids, milk, ..... home! Of course this is all my guessing, but I believe she can continue to heal from the surgery at home, provided there are no breathing issues, and she is able to take enough fluids and nutrition and all her medications through her tube. I can't really make a guess about the time-table, but I think we are on the home stretch. And there is just no place like home! Mallorie, John, the other kids, and I are already stretching and getting ready for the sprint home.

Recovery

Mallorie's surgery was done by 1 pm, and the surgeon, Dr. O, said she did well.  Her anesthesiologist, Dr. T, told us this morning that it was a big surgery and there would be a lot of pain, so she spent a lot of time collaborating with Dr. O and with the PCU attending doctor about what would be the best way to keep her pain-free and still manage her airway.  As no one could predict how much pain medication it would take to keep Mallorie comfortable, and whether it would impair her breathing, the anesthesiologist was not sure that taking out her breathing tube, only to potentially have to replace it in an emergency situation, was the best plan.  She said that she and the attending doctor from the PCU had discussed the possibility of having her spend the first night in the PICU, so it was no surprise when the surgeon told us that she was definitely going there. 

A lot of time and concern went into making sure Mallorie had a safe and pain-free surgery, and planning for her recovery.  The PICU nurse who first had her today asked us a lot of questions about how Mallorie would show discomfort, and she spent a lot of time advocating for her to have more pain medication. It was a very busy "admission" for her, but by the time she left, Mal was resting comfortably and her heartrate and blood pressure were lower than when she first got here. 

Mallorie has been blessed to be in very good hands all day today. 

Here are the gentle hands of Dr. T:

Surgery tomorrow

Fundoplication surgery scheduled for 9:30 am.  She'll go down earlier than that. 

No seizures, urine was clear of infection, and breathing well.  She seems a little bit agitated (and I mean just a little) and so I'm sure whatever she gets for anesthesia will take care of any of that.  It seems she's still able to sleep, but just not deeply and is really touchy about being repositioned, changed, or suctioned. 

Please remember her in your prayers for tomorrow. 

Peaceful Tuesday Evening

It has been a difficult couple of days. Mallorie had been getting a small amount of food through her g-tube, and the balance by IV, because she had developed a kidney infection, and one of the attendings felt that if she could handle even a little bit of feeding, it would help protect her from some of the side effects of receiving nutrition only through her IV - one of those being "transmigration of bacteria" from the intestines through her bloodstream to other areas of her body. It was a fine balance, trying to keep something going through her stomach and intestines, but watching out for reflux, which puts her at risk of breathing in the stomach contents.
Yesterday she had such severe and constant reflux, that it became clear that the risk of aspiration was too great, and the feeding was stopped, but the reflux and periodic struggles to breathe continued all day, through the night, and all this morning. She didn't sleep last night, but was wide awake and agitated, ran a high heartrate, and felt feverish, although thermometers never registered as hot as she "felt." I worried that she was building into seizures again. I was so worried that she would not be fever-free by the day her surgery was scheduled, and also that by not resting, her body could not fight the urinary infection. I absolutely am certain that she needs this operation to allow her body to protect her airway, and to allow her body to settle down, and get on with the work of healing her brain. The date that everyone thought her surgery was set for (today), turned out to not be correct (it will be this Friday), and if she could not stop refluxing, would the surgery be cancelled?

The infection itself was a huge blow to me, because ever since Mallorie was born with spina bifida, I've known that she was at a high risk for getting urinary infections, and you can ask Dr. B:  I'm pretty obsessive about it, making sure she gets a minimum of a liter of fluid a day, and vitamin C, because I believe that it helps protect her against UTI's. So when we got here, and she got her first urinary infection EVER, and on top of that, it was a big infection, and not caused by the first bacteria you'd expect to be the cause, I became more "obsessive" than ever. There probably was not a doctor who set foot in this room to ask how she was doing, who didn't hear that I was worried about her fluid intake, and felt she needed more IV fluids, both to flush out her kidneys and bladder, and to make up for what she was losing in the saliva that pours from her mouth when she is having seizures and at other times. The most frustrating thing is that sometimes I would hear about how they worried that she could get "too much" fluid, and one doctor even mentioned that they wanted to keep her a bit on the "dry" side. By the time she started the constant refluxing and breathing problems yesterday, I was to the point that if any conversations with doctors went on for any length of time at all, I was weepy and without words to express how afraid and frustrated I was.

So, let me tell you how much I love nurses. I love respiratory therapists, and nursing assistants, EEG techs, and doctors and all the sweet people who work here, too, but nurses are a breed of their own, because most of them take very seriously the work of caring for their patients AND the families, and most have learned that they can't be afraid to speak up and even disagree with doctors. They are the ones who spend the most time at the bedside, who have the most opportunities to listen to what the families say, and after awhile, a pediatric nurse who has cared for a variety of children in several types of situations can have an understanding of situations and a wealth of common sense interventions that a new resident could not have possibly learned just in medical school. Throughout our stays here since February 11, nurses have more than once stepped up and told a resident or group of residents what he or she thought should happen. I'm always in awe and grateful when they do that. Yesterday, the resident writing the orders to stop feedings decided not to increase Mallorie's IV rate to make up for the fluid she had been getting in her stomach, and I was so discouraged, because it had taken so much to get anyone to agree to increasing Mal's total fluids by an extra 10 or so cc/hour, and the resident was already saying that she didn't "think" she needed that much fluid, anyway, so she was looking through her past orders to see what the old rate had been. When I told the nurse how discouraging that was to hear, and how I believe that dehydration led to her getting this infection in the first place, she told me to go out and tell the resident how I felt. I just said it wouldn't matter; she wouldn't hear me, and of course I choked up saying that. The nurse left the room, and in less than 2 minutes, was back and increased the TPN rate another 10 cc. I have no idea what she might have said in 2 minutes or less that was enough to change the resident's opinion, but whatever it was, I was spared the struggle of trying to sound rational when my emotions were so much on edge already.

And today, after watching Mallorie struggle and even stop breathing for periods of time because of reflux, I was beside myself with worry. By about noon, it was clear that I couldn't put Mallorie in bed, because she would reflux instantly, but I also couldn't even prevent it by holding her. I was juggling an oxygen mask on a short tube coming from one side of her bed and her IV lines coming from the other side of the bed, with her in my arms, trying to suction and hold the mask in place at the same time, and not daring to lay her down because of how much worse she refluxed when I did. She simply could not keep her oxygen levels up without the oxygen mask, and I almost missed the chair once when trying to sit down with her to manage suctioning better, and realized I'd have pulled out her PICC IV line if I'd have landed on the floor. When her nurse came in because the monitors showed low oxygen levels, I asked for a syringe to empty her stomach through the feeding tube. She asked if I wanted to just let it drain into a disposable diaper. This is going to sound stupid to any nurse who's ever worked with me, but I never done that for Mallorie, unless she had some sort of illness and was actively vomiting. If I ever draw fluid out of her stomach to give relief, I always let it go back in eventually, because I remember being told that a habit of not returning stomach contents could throw off the electrolyte balance in the body. This is one of those not-seeing-the-forest-for-the-trees situations, because when Kerry asked me that question today, as she had already asked me yesterday, I realized this is one of those times when you DO want to just let the extra fluid go. Anything Mallorie was refluxing was partly going into her airway, and I was suctioning it out, and certainly not returning any of THAT to her tummy, so what was the harm in discarding stomach contents that were going to eventually be vomited or refluxed out, anyway? It was a turning point, because once Mallorie's stomach had been emptying for about 15 minutes, ALL of the refluxing stopped, her breathing calmed down, and she stopped being so restless. In time, her body began to feel less hot, and when I put her into bed, she did not resume the refluxing, and in fact, fell asleep! By the time she went back onto CPAP, she briefly needed oxygen along with the CPAP, but after an hour, she was able to just breathe regular air.

Tonight she is having a sleep study done to see if it can give any additional information about her apnea. In the past couple of days she's started to have really slowed breathing during deep sleep and some brief periods of apnea. But will this be picked up on the study, since tonight she's having a bit of reflux again? And even if it does, if it's central apnea, we already know it will be better managed through caffeine (as long as she can tolerate it without stimulating seizures). She had to have a medication through her g-tube at 9 pm, and so the tube was clamped, and already she has started making noises that suggest she is having reflux, and she is WIDE awake and restless, twitching. If she doesn't go deeply asleep, I suspect the apnea during deep sleep won't even be picked up. Also, one of the goals was to see what settings she would need for a CPAP machine if she needed it just during an illness at home. However, if she's not having the obstruction right now like was happening the other day when we needed to even put in an oral airway, will this study show enough information to help us know what she might need at home?

All I know is that Cathy told me that the study done on Annabel a few months ago showed events that were not at all visible to Cathy who was right in the room when they were happening, so we might learn a few new things. At any rate, the conversations with the girl doing the sleep study have been enjoyable; it is nice to get company, and a captive conversation participant is even better.

So Mallorie's surgery is scheduled for Friday, to be done by the same man who did her g-tube surgery 3 years ago while she was in the NICU. He is a humble man of God known for his surgery skill as well as for his character. Whenever his name is mentioned, nurses and doctors say that he is a great surgeon ... "and an incredible human being." I love to hear them say things like this about him, because I know she will be in good hands. Of course, if Dr. Olutoye heard that, he would say that he is just "an instrument of God," and that she is in God's hands. Which is true. This surgery is quite a bit bigger than just g-tube placement, and might also require that the g-tube be moved, depending on how things reposition when the fundoplication and tilting of the stomach is done. But judging by how well Mallorie responds to having reflux being taken out of the picture, she should do much, much better afterward.

John will be out to be with us tomorrow. I am SO looking forward to that.

Happy Easter from Mal's Gang!

:(

Mallorie has a bad urinary tract infection, more uncontrolled seizures, reflux, is anemic, and just needs our prayers.  So does her mama...


Carley

(yeah, Mal, my sentiments EXACTLY.)

Oh, we do miss this one, us at home... (and her mama, too)

Good night, and happy early Easter, you two...


Car & the rest of us.

Hospitalization update

I know I should be updating more frequently, but Mallorie's been "busy" lately.  She has continued to have seizures, and when they happen, it can take a lot to stop them.  Then she can be without for a couple of days, and there isn't really a pattern that anyone can see.  Sometimes there will be a fever (like after she had an aspiration the other day), and that seems to explain seizures coming back.  Wednesday evening she needed two doses of Ativan for seizures, and yesterday she looked to me like she would need it again, but settled down.  She also had run a little bit of a fever last evening, and it was treated with Tylenol pretty quickly.  There also was a fever early this morning, and by noon-ish she started having some dramatic seizures which required a few doses of different medications. 

There were a few scary moments when it looked like she might not be breathing, and suddenly, out of nowhere, the attending doctor produced an oral airway and put it into Mallorie's mouth.  It pulled her tongue forward and corrected whatever was obstructing her airway and causing her to have noisy breathing, prevented her from biting her tongue, which has been a problem with her recent seizures, and gave a better way to suction her mouth.  I burst into tears when the situation was corrected, because I didn't have the right words to express to this doctor all that I felt about him being in the right place at the right moment.  He's an exceptional teacher, to the residents, the nurses, and the parents, and we all learned something in that moment. 

With all of Mallorie's changes, it is good to be in the hospital with her to learn what works in different situations, and I appreciate the input from the nurses.  Today, just when I was getting frustrated at repetitive signs that looked like low-level seizure stuff to me, the nurse asked me if there was any chance it might be reflux. It was a lightbulb moment.  I had realized a couple of times recently that sometimes what she is having could be seizures and sometimes it could be reflux, because a lot of the signs we are seeing can happen with both, such as putting out excessive saliva, arching, grimacing, stiffening.  But I sort of get stuck in the moment, and when I see definite seizures, then it's hard for me to not see seizures when anything seizure-like is going on.  Once she made me see that, I was able to relax, because I believed her seizures were in control.

Because of today, they have increased her Keppra dose, and one of the neurology doctors explained that Keppra is a medication they like because it doesn't cause liver problems or excessive sedation.  There is a mom I know of a boy who has seizures which improved after surgery.  I just remember her saying that when she was given the choice of which medication to keep last, as medications were weaned off, she chose Keppra.  Also, Gavin's "miracle" seizure drug is Keppra, according to his mom.  I was so happy to hear that she still has room to go up on that drug, and that's what they did again today, so she will be getting a higher dose of Keppra ongoing. 

The neurologist who was covering last week (not Mallorie's own neurologist, the awesome Dr. Rivera) was in her PICU room one day and made the comment that he didn't think they would ever completely control Mallorie's seizures.  I was grateful today for a change in doctors, because that attitude didn't settle well with me, although the doctor himself seems good and I have no complaints ... except about his negative attitude.  :)  Not only did I not believe that, but I also believe it's extremely premature to make statements like that about someone who only has had seizures for less than 2 months.  But when you have a couple of days of contact with very positive doctors who do not act like they are "discouraged," it does wonders to boost your spirits, particularly when you've been up since 4 am and are feeling quite weepy.  And it helps when Dr. Stein, the performer of the amazing oral-airway trick, says that on a scale of 0 to 10 in terms of concern that he has for Mallorie, with 10 the most severe concern, and 0 being no concern, he considers her to be about a 2, it is encouraging.  He believes that what she has is manageable, and we just have to learn how to manage it.  This was before Mallorie required the airway, and sure enough, even that scary event was managed. 

Prayers that we need:  For Mallorie to get the needed surgery on the right day for her.  She needs to be in good health, but I believe she also will be in better health when this new severe reflux is made a non-issue for her.  For healing for her brain and lungs.  For our kids and John, who can't always be here, and all miss being together as a family.  For healing for myself. 

Oh, and I also forgot to mention that Cathy, Annabel's mommy, came by to see us a few days ago while we were in the PICU, and brought Annabel's beautiful hospital gowns and quilt for Mallorie to borrow while she is here.  Let me tell you, when you dress this fashionably while you are in the hospital, you make quite a stir.  Even male doctors have commented on how she looks, and at least a couple of the nursing staff recognized the gowns and talked quite a bit about Annabel, Cathy, Carly, Colette, and Tara.  I will admit that it was nice to be able to say I was friends with Cathy.  Sort of like saying you are related to the president of the US, because I swear people are jealous of me when I say that.  :)  Of course, it could be Annabel that they are all jealous of me for knowing, because she is quite a star here.