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.

Why I am here.

I had a phone conversation with a tearful Hannah today. Hannah is 15, and is our family caretaker, nurturer, and worrier. It was Hannah who was with Mallorie when she had whatever happen that required them to take her to the hospital. Hannah just wants her baby sister home, back to her old normal self. She wants to kiss her and hold her, and love her in person. Instead, she is dependent on pictures I put on the blog, and updates.

She was asking me if Mallorie might be brain-dead (for which I was grateful for the EEGs, because I could tell her that her EEGs show areas responsible for seizures, and definitely brain activity), and I was realizing how I can never predict which of the words I use with this precious daughter, will frighten her. And I can't hold her right now, look her in the eyes; all I can do is listen to her on the phone and tell her what I do know. And that even though there is much that I do not know, and neither do the doctors know, ... there are some things I am certain about. One of those is that God has not turned His face away from Mallorie. And that even though WE wear down, "He neither slumbers nor sleeps." And that the powerful love we have for our beautiful sister and daughter, doesn't come anywhere near to the love of her Creator and true Father.

When God gave Mallorie to John and to me, He also gave her to our other children. When things like this hospitalization happen, I want to trust that He will care for them, but as a mom, I worry, especially when a few days go by and I realize I've just brushed my teeth and crashed on a recliner in the waiting room and not even called to speak with them. Am I failing them, and will they suffer as a result of my failings during times like this?

That is why it is such an encouragement to me to see that God is working in their lives during these times, and teaching them HIMSELF, and helping them grow. It was Hannah I had just been talking with a couple of months ago, when I said, "Can you imagine how different it would have been if we had known back when I was pregnant with Mallorie, and when she was in the NICU, that we would bring her home, alive, smiling? I would have been so different. I wouldn't have been so terrified."

Hannah replied, But then we wouldn't have grown. We would have said, "Yeah, right."

This is a text I got from Hannah sometime after our conversation today:

Mommy! I have to read the book of Matthew for Quine [her homeschool World View curriculum] ... It is amazing! I had no idea that all this was in the Bible! If you get a chance, you should read it; everything applies to our family. It's crazy!

Later, when I spoke with her over the phone, she said things like these:
I know that's why the Bible is there, because it applies to everything.

Oh my gosh, it applies to everything we have going on right now. Even though it was written like a billion years ago. Not really, but almost.

Here is what I'm thinking. God does hear our prayers and always answers us. But that God doesn't follow our formulas, so he is unpredictable (to us). Definitely predictably reliable, predictably loving, predictably powerful, unchanging. But he is beyond our understanding, too. That sometimes answering our prayers with a "no" is blessing us. And that sometimes, all we can do is trust, because we can't even see the blessing.

But today God blessed me by allowing me a glimpse of some of the blessing. Hannah said something about all the things she was reading in Matthew, and said "I just knew I was going to hell, because it lists so many things ... like not being loving to your sister, so I had to apologize to Carley." So I checked to make sure she had a good grasp on salvation, that it's NOT what we do or don't do; that she has been saved as a gift from God, and it will never have been because of any good works she does. And her sin won't have to cause her to forfeit salvation. But after the quick check, I just grinned, listening to her excitement about what she is reading, and how she sees it applying to her life and our lives.

Today I am so grateful to the Holy Spirit for bringing words of God to life, and allowing me, too, to see how they apply to our lives. I love the story of the father who asked Jesus to heal his son who had epilepsy and kept falling into the fire and the water. Hannah found the same story, and told me she was stunned when she actually read the word "seizure" in the Bible. I am also grateful to great friends for emailing, speaking, and texting me verses that come to mind, because the words from the Bible are so powerful to me these days. I know they are true, and they are also powerful enough to change my thought processes, to give me hope, to remind me of God's power and reputation for healing, whenever I start to forget. If any of you have a verse that comes to mind when you are thinking of Mallorie or praying, or you hear scripture somewhere that makes you think of her, PLEASE give it to me. You might think that what you share might not apply, but Isaiah 55:10-11 says: As the rain and the snow come down from heaven, and do not return to it without watering the earth and making it bud and flourish, so that it yields seed for the sower and bread for the eater, so is my word that goes out from my mouth: It will not return to me empty, but will accomplish what I desire and achieve the purpose for which I sent it.

Today, just a moment before I had to go to the hospital entrance to get a "milk delivery" being brought by Tamara, a girl from the milk bank came up to the room to ask if there was any more milk, because they had defrosted the last they had for Mallorie. Tamara had brought an ice chest with her early this morning (about 5 am) when she drove out to Houston for a heart walk, and arrived at the hospital just in time. Tamara and friends did the heart walk today in honor of her son, Conner, who will have heart surgery very soon (early March). He needs his closing VSD to be re-opened and to have another procedure done to limit the blood flow to part of his body (and I can never get the details straight). I am mentioning it so others can pray for Conner and his family, because it is definitely time for this surgery, but it was postponed because he has RSV right now. The link to Conner's blog is on the left side of this page, where I thought it always had been - I have no idea where it went or when it was lost.

I will try to add pictures tomorrow, after I figure out what I did with the cable I need for downloading camera pictures.

I almost forgot the updates:

Mallorie is still having something that looks "different," and is probably some sort of seizure-like activity. It involves some eyebrow twitching with an increase heart rate, and some tensing of her muscles and noisy breathing. It's not as dramatic as the other stuff that was going on, but it's still something new.

A new attending doctor came to cover Mallorie today, one I've heard great things about in the past, Dr. McP. Can I remember exactly where I've heard of her? Nope. But I definitely know of her reputation, and loved her instantly. I am thinking that sometimes it's a good thing to have an assortment of people looking at Mallorie and having input into her care, although it's an adjustment for me, as I'm more used to our awesome pediatrician, Dr. B, or one of her colleagues, who know Mallorie well, caring for her. Today, Dr. McP checked Mallorie's gag reflex (not there), and asked if she is acting like herself (she definitely is not), and decided to slow down the plan for removing the tube and vent, to allow for Mallorie to have the best chance of being successful at breathing on her own. Since she is still having some sort of seizure-like activity, they will probably discuss with neurology team about working on her meds a little.

Neurosurgeon (same one who checked her 2 years ago, and checked her shunt her first night out here) was called to re-check her shunt to make sure it still looked like a shunt problem wasn't involved. He "tapped" her shunt (took fluid out) and checked the flow, and says everything to do with her shunt still looks good. If anything, the head CT might be actually a bit better (smaller ventricles).

The EEG done yesterday - I think, but my days are a blur - shows a few areas where seizures are probably originating from. Whatever that means.

Mallorie's nighttime dose of seizure medication seems to have kicked in, and she seems much more comfortable right now. She does have an extra med that can be given if she needs it.

Mallorie's IV put in with ultrasound in the ER in Beaumont is still doing great! And Tony, the IV guy out here, shone a bright red light on her scalp today while Dr. McF was in the room, and we all ooohed and ahhhed over the scalp veins that showed themselves. You all know I am happy to cut Mallorie's hair off for a good scalp IV, so that little show made me happy today. There is still talk of putting in a PIC line, but I hope that it doesn't even have to happen.

I think that's it. I'm exhausted, and once again stayed up too late.