Pictures of the Process

I am posting the least disturbing of the pics that we took, but even so, beware that some of these may be a bit intense to look at.


Right before we handed her off to the anesthesiologist.


The first glimpse we got of her after the surgery. They often kept her uncovered during recovery as she was running a low grade fever.


So many machines for one little baby.


As the days progressed, so did her swelling. This was about day three after the surgery.



In the PICU


Tired Mama.


Tired Dada.


Back at home with a smile. Her head is still swollen.


Today, head is looking like all swelling is gone.


Before surgery.


After surgery.


Before the surgery.


After surgery.

Home

We did officially arrive home on Wednesday. They originally wanted us to stay until 8pm so that they could give us the training session in injecting the blood thinner then. As we weren't interested in sitting around for the entire day just to get a lesson that night, they allowed us to go home on a "pass" and return that night for the lesson and then official discharge.

Our bed felt amazing that night. Zoe must have thought so too as she was determined not to sleep in hers. She's on a jag where she's mostly awake between 1 and about 5 AM. Well, can't say that this pattern is new. We seem to revisit it often. I think her natural rhythms would have her sleep all day and up all night if we allowed it.

Yesterday's blood draw saw her WBC's go up a little bit, but the word is that they are not jumping on it. Since she's mostly holding steady, her other numbers are good, and she still shows no visible or detectable signs of infection, they have to assume she's doing okay. It still stresses us out to have this be a point of mystery with her. It's not out of the question that she could have an infection somewhere in her.

Meanwhile, we took her to her naturopathic pediatrician today to get her set up with some supportive and immune balancing supplements. Grapefruit seed extract is going to be a challenge though. It's only a drop for a dose, but it is foul tasting. She complained for about an hour after we gave that nasty stuff to her.

We are still trying to catch up on sleep and sanity. Jeff volunteered to be the one to inject Zoe, and he hates doing it to her (can't blame him). Zoe is doing better every day. She "talks" a lot--even when being fed. When she wakes up, the way we know she's up is that she starts to babble. Always puts a big grin on our faces. The girl has got quite a spark.

Going Home

Today's labs were a qualified improvement. The WBC's were down not as much as they were wanting to see, but down a titch, nonetheless. The absolute bands were down slightly as well. The C Reactive protein was down even more--the indicator of a lessening of overall inflammation.

Again, the numbers are not diving as much as they would like, but the fact that they are down a bit (and certainly not UP) makes everyone hopeful.

So, they are sending us home. Halleluiah.

The checking out process does take its time. We are awaiting the training session on giving Zoe the blood thinner injections (twice a day for the next several weeks). We have to return again tomorrow for yet another blood draw in the afternoon to check that the blood thinner levels are appropriate.

As long as we get to go back home, I don't care how many trips back we have to make.

For all my worry and fear, I hope that I've made it clear that we find Seattle Children's a true blessing in our backyard. The people here are amazing and concerned and accessible. The hospital itself does a great job of creating a cheerful and colorful environment. In a perfect world, adult hospitals would do the same thing. Traveling between floors is much more fun in Rocket Elevators!

Fingers Crossed

Zoe's labs this morning fortunately showed a lower WBC count. I was skeptical at first when I heard that they were lower as we had seen them dip before, only to have them climb the next day. But, according to one of the docs we talked to about it this morning, as her other numbers are down as well (the absolute bands, for those of you who know what they refer to), she is hopeful that this is a sign of things getting progressively better, not worse.

Tomorrow we will know more, and hopefully they will be good things. The big issue is still whether she may have a bacteriological infection that all of the labs and diagnostics used thus far have not been able to catch.

Again, osteomyelitis is the big concern. While not usual, it can present without any accompanying fever or other symptoms. The screening (scintigram) test that is normally used to diagnose it would not work on her in her post surgery state. The cut-up and traumatized bone would definitely flag her in the screen--so it wouldn't be possible to discern a false positive from a true positive result.

Dr. Hopper, the plastic surgeon wanted her to be started on antibiotics for treatment of possible osteomyelitis in his concern about her numbers. Fortunately he is not the one to make the call, and the doctors who are are much more cautious about moving forward with such an approach.

Treatment for osteomyelitis involves at least six weeks, if not more, of antibiotics. Without knowing if she actually has osteomyelitis, let alone what bacteria would be causing it, prescribing the appropriate antibiotic would be a shot in the dark. Treatment would delay the start of her BMT, and could possibly affect the course of her BMT in that she would be starting the transplant with a possible resistance already developed against an antibiotic which may be needed to help her survive the transplant process.

So, the team assembled to make the decision about where we go from here is very aware of and concerned about all of this. We are all fervently hoping that her lab numbers from tomorrow morning's blood draw continue to show a downward trend. They have temporarily stopped her blood thinner shots in case they need to do a lumbar puncture to get a cerebral spinal fluid sample for testing tomorrow if the labs come back elevated. Testing the CSF would only tell us if there is infection in the CSF, not if there is a bone infection.

So, again, pray for lower WBC's--as well as no osteomyelitis!!

We are in a new room due to the pity that the nursing staff have taken on us. We had been in a double room and managed to have three of the four nights we spent there to ourselves. The night we had a young 4 year old room mate and her mother was hellish. It is quite enough trying to manage our own trauma and sleep deprivation, without having a front row seat to another family's pain as well.

Monday night we got word that we would be due for another room mate--this one 6 months old, and when the parents brought him in, screaming. I was ready to join him. A week and a half in the hospital, barely enough sleep each night, and now this? Argh! My sense of self preservation was definitely trumping my capacity for empathy. Our good nurse begged her charge nurse to put us in a single occupancy room, and lucky for us we got moved.

We are now in Giraffe 3007 if anyone needs to know.

The CT scan yesterday actually showed that her head does NOT appear to be leaking CSF into her scalp on the right side. Visually, it looked like her head was growing, but the CSF showed it was not. Phew!

Also, someone mentioned today that they were given the impression by my description of the surgery that it was not successful. Sorry if I have given anyone else that impression. Her head is well put back together, there were some tears and patches made to the dura, and the optic nerve decompression was not attempted as it was ruled too risky based on what they found. CT scans have shown that the main goal of vaulting and reshaping her cranium was successful.

And, if the numbers come back the way we want to see them tomorrow, the surgery will have succeeded with flying colors.

Aside from all the uncertainty about what is percolating inside of our girl, the way she is acting is more and more like the Zoe we know and love. She smiles frequently, kicks, talks and cries like her old self when she's not getting what she wants. She's skinnier than she was, so I'm feeding her as often as she wants to eat.

We just have to work on this new biting jag she's on.

Security Leak

Well, I keep hoping that I can write and tell you all that we're home, but, we're still at Seattle Children's.

Zoe's WBC count was back up again this morning. Infectious Diseases will be coming to talk to us today to see what, if anything, they can come up with. I called her naturopathic pediatrician today to read the lab reports to her. She said that the numbers make her look like she's got some sort of bacteriological infection going on. I'm sure this is not news to the team here, but I wanted to see if the naturopathic perspective would yield something that the allopathic had overlooked.

Nope. Still a mystery why Zoe is spiking the WBC's.

Also, the swelling on the right side of Zoe's head has grown since they patched up her leak at the base of her spine. The cerebral spinal fluid is obviously under pressure and is wanting to shoot out somewhere, so now it's collecting under her scalp where there must be a hole in the dura. As disturbing as this sounds, it's something that they were expecting could happen. Jeff had the conversation with the Neurosurgery ARNP about this while I was at breakfast. As far as he could understand, if she didn't have the issue of the elevated WBC's, we would be home by now, despite the swelling in her head. He isn't certain that's the message she gave him, but that was his impression. The CT scan she had this AM will tell them more about the size of the leak.

Zoe is more alert today--yesterday she was very lethargic due to the regular doses of percoset she required for her pain. Today she's smiling and doing a little more of the vocalizations we are used to.

Jeff and I are stretched, but getting unfortunately used to it. The strange bright spot I think of whenever we are told that we will have to spend yet another night here is that I will get to have another serving of bacon in the morning. The food here is terrible, but we have gotten into a pretty good breakfast groove here. And, the bacon is AMAZING. I think I've had over forty slices since I've been here. The funny thing is, I am not historically a bacon fan. But, this experience is stretching us in many ways...

Doing Better

WBC counts are down today--still high, but the fact that they're starting to trend down is a relief.

Still no signs of infection anywhere. The Infectious Diseases department, upon hearing what has been going on with her, said that they felt everything being done was adequate and that they had nothing to add.

We discovered today that her lumbar drain puncture site was weeping cerebral spinal fluid (CSF), which may account for why we had such a horrible night last night. Zoe was in a lot of pain, crying a high pitched cry which only stopped when she nursed. When she nursed she would bite me a lot--which is not like her. They finally gave her some stronger stuff than tylenol (oxycodone) and she (and we) finally slept at about 5am.

Turns out, the leaking CSF may have been giving her a wicked headache. The pressure change from a leak in a pressure regulated system could have very conceivably caused the pain. They put a stitch in the puncture site this morning, as well as some super glue (!). Should take care of it.

Poor little Z is starting to look like a baby pin cushion.

We are groggy today, but not so worried. I'm feeling good about how she's doing.

Hanging Tight

We are in the hospital for at least a couple days more.

They are concerned about Zoe's elevated WBC count. Test results are all looking fine so far, but they want to run more diagnostics.

Zoe is starting to act like a baby in pain, but I think that has more to do with finally shaking much of the lingering sedation effects than an indication of developing infection. Conceivably, she's acting like a baby coming down with a cold--prior to cold symptoms appearing. We'll probably know more tomorrow.

Stay tuned.

We Wait

I can see a beautiful blue sky above autumnal colors from the hospital window where we wait, still, for answers about what's going on with our girl.

Her WBC levels were even higher today.

The CT scans she had this morning, one with contrast and one without, showed that her brain and surgery sites are doing fine. No problems have arisen from the use of blood thinners.

But, what is up with the elevated WBC's??

One of the cranio-facial team docs had read that osteomyelitis does happen more frequently in osteopetrotic children. The Infectious Diseases department will be swinging by to talk to us to see if they can figure out the cause of her high WBC count. If they can't, and she still doesn't seem to be coming down with a cold, they will scan for signs of osetomyelitis. Treatment for such a diagnosis would involve weeks of antibiotics.

Let's hope it's just a cold--or--her body's reaction to her nasty diaper rash that she has had raging for the last several days.

On the flip side of this new worrisome development, Zoe continues to do great. She's actually cried and screamed a lot today--and that is really a good sign that she's snapping out of her stupor. She's kicking more and using her arms and hands more.

Another night in the hospital, maybe more.

Not Home Yet

Well, we were so close to going home today--we thought we were going to be discharged at any moment for hours today. But, blood draws today noted that Zoe's white blood cell count was elevated. She doesn't show symptoms of infection, which elevated WBC counts can point to. They (and we) are hoping that the high levels are due either to a reaction to all of the blood she received, or an oncoming cold that would be easily brought on by too long on the ventilator.

Tomorrow they will check to see where her WBC levels are at. Hopefully, they will be lower than today.

Also, the neurosurgeon does want her to have a couple shots of a lower strength blood thinner to start to treat her clot. He said that he has seen how a blood clot in a baby's leg has led to the leg being lost. (uh, yikes!) She got a shot tonight, and will have one tomorrow morning. Then she will go for yet another CT scan to see whether the blood thinner dose has had any negative effects on her surgical sites.

Zoe is more and more herself--however slowly that is going. Today she rediscovered her hands to suck on. Never was a loud slurpy sound so musical. Go Zoe!

Another night in the hospital. Boy, do I miss my bed!

Out of PICU

Sorry for the absence of an update yesterday--we both had hit a wall and just couldn't muster the energy to log on. Zoe is still doing better and better. We were released out of the PICU yesterday evening and are now, finally, on the surgical recovery floor. Next stop, home.

As you read, two days ago Zoe was finally extubated in the morning. While it was a great thing to finally have happen, it was a very long day for us. She wasn't allowed to nurse until she showed signs of returning to her "normal" self. She was sluggish and out of it all day. If they really made us wait until she was her normal self, we'd still be waiting now. A doc finally agreed that she was at least alert enough to nurse. It took her about a minute to remember her nursing technique--and then she was her voracious little self.

She continues to be alert, but still is not really herself. She lies in the bed, or in my arms, in a dopey state. She acts more like a newborn in her "not quite all there"ness. She is very floppy when we pick her up--she acts as though her arms are too heavy for her to move.

In our growing concern about this (is she brain damaged???) we asked the neurosurgical and plastics teams whether this was normal. They assured us that it was. The drugs she was given while being on the ventilator for a week leave the body slowly. They said to expect that it could take two or three weeks for her to get back to her recognizeable self.

They are still very happy with her progress. The latest CT scan yesterday showed that her brain was still holding steady. There is some fluid retention on the right temporal side, but on the outside of the skull. The area of hypodensity is unchanged.

The main concern for now is that she developed quite a large blood clot in the lateral iliac vein in her left groin area where they had placed the central line. They can't put her on blood thinners yet to deal with it as she is still too recently a surgery patient. The word is that it's not an acute danger to her, that her body will deal with it by redirecting blood to the capillaries around it and working to absorb the clot on its own. We are waiting to see a hemotologist to see what they want to do on an intervention level.

In our new hospital room (Giraffe 3010) we have a bathroom that we are allowed to use (we had to take a hike down the hall in the PICU and then pass through security to return to the room everytime we needed to relieve ourselves), we can eat in the room (couldn't in PICU), and we can have our cell phones on. Nicer to be less controlled, but ultimately we just want to go home!

While it was told to us that going home today might be a possibility, with how methodical they are around here, I won't be surprised if we have to spend another night.

A SLOOOWW DAY

At around 7:30 PM tonight it became official, one week in the PICU, and counting. Who would of thunk it?

This morning a little after 8:00 AM they pulled out the ventilator tube. A few coughs and suctions and she was breathing fine.

The word was once she shows signs of "normal" activity, they would let her breast feed. Well, that took all day. Lots of talking, singing, touching and worry.

At a little after 7 PM she was alert enough to get the OK to feed, and feed she did!! That's the Zoe I know!!

I am sure Kellie will follow with the details if she can recall them from her sleep deprived over stressed brain.

Off to bed I go, knowing Zoe's belly is full of goodness.

Surrender

She is still not extubated.

They had her down to only a little bit of morphine early today. But, as she continued to sleep like one more heavily drugged they stopped it all together to encourage her to wake up. She did so here and there and acted like our sweet little Zoe, but they were looking for a state of wakefulness that would have her really stuggling and fighting to get the tube out. Her state was more of one who was happy and relaxed, content to feel whatever was under her wiggling fingers and toes, not one who was irritated with her situation.

Perhaps our little ZEN girl is too Buddha-like in her temperament.

Now she dozes in the evening, leaving us to think that it may be yet another day before the little girls decides to truly join the waking world. She's forcing us to slow down to her schedule. Her little body is doing a fine job of healing her, so we have to trust that it knows what it's doing.

And, just to be clear--she really is doing great. Everyone assures us of that. Who knows? She may be extubated in the night. I will be sleeping here again this night in that event so that Mama can hold her immediately!

I'm doing better tonight--my dear friend Risa came to give me a Thai massage in small conference room here, and I was reminded that I do, in fact, have a body below this agitated head of mine.

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Incidentally, in case you didn't notice, there have been a couple of recent posts done by other people. Jeff wrote the last entry, and our friend Jon has been added as a contributer to the blog so that he can coordinate help for us (the "posted by" at the bottom of each entry indicates the author). So many of you have been so wonderful in asking how you can help, and now we finally are getting to a place where there will be direction in that. In case you missed his post, scroll back to the entry entitled "Lots of Helping Hands" to get the scoop.

Thank you, dears!

Almost there

It is a little before 10pm and I've just got back home to sleep in our bed. Zoe is doing well. After ten hours of breathing on her own the ventilator has been set back to help her breathe. I could see the ease run through her small body as she went into a deeper sleep. She twitches her arms and legs and then follows that with some small movements of her toes and fingers. All very familiar movements that tell me our little girl is coming back to us.

The waiting is excruciating, exhausting and a must.

The staff at the PICU are amazing. I just surrender to there skills. For the first time in months I can relax just a little inside when I walk away from her knowing that she is in very skilled hands.
They really do care about her and want to do know harm. All the doctors, nurses and respiratory folks want to make sure that every step we take forward be a success. Her body will tell us when we take the next step. All is looking good in a post major cranial surgery four plus days in an ICU kinda way.

So we wait.

Big Sigh

No extubation today so far, and probably not until tomorrow. No extubation means no allowing her to come out of sedation completely. She is mostly doing well, but they are concerned about how hard she is working to breathe on her own. She breathes rapidly and shallow, and her chest is working very vigorously with each breath.

She has still been spiking fevers, so they are going to run another blood culture on her. Her breathing is starting to sound ragged and liquidy. People are on ventilators for a long time run an increased risk of complications and infection from the liquid that collects and cannot be expelled by customary coughing and throat clearing.

The issue is that if she doesn't do well off the ventilator, they don't really have the option of putting her on a C-PAP machine to help her breathe as it requires that she wear a tight strap around her head to keep it on. Neurosurgery nixed that idea because it would put too much pressure on her tender skull and brain.

Without the option of a C-PAP machine then, if she were to fail breathing on her own, they would have to intubate her again. They can't be guaranteed that it will go as smoothly as a couple nights ago when they had to intubate her after she extubated herself. Again, the longer one is on a ventilator, the more complications can arise.

They want to wait until it is pretty clear that she will succeed with extubation and breathing on her own before they proceed.

They aren't acutely worried at the present. But, I'm not so sanguine. I'm impatient and stretched and cranky and have an ever growing hair trigger that Jeff steps on more and more often (unfortunately for him). My mind wants to latch onto anything it can worry about.

Somebody take me out back and shoot me.

Lots of Helping Hands

Hi, I'm writing to help with a website called "Lots of Helping Hands." The design of the site is to coordinate basic domestic needs for Jeff and Kellie. So that they don't have to think about going grocery shopping, eating healthfully, cleaning house, etc... They are walking on an extreme tight rope thru the most intense terrain and need to keep their focus on each step they take with Zoe and each other...NOT on coordinating a phone tree and their domestic needs, and especially not on taking care of us when we want to help them take care of themselves.

So...this is how I remember it: Go to this link - in fact you may want to bookmark it - www.lotsahelpinghands.com/c/608401/ - you'll see a sign in page that offers "already a member" and "interested in becoming a member." Under the "interested" part is a "contact a coordinator" option. Click on it. Now you are on a page where you can e-mail a coordinator. Click on "select a recipient" and pick me - jon howe - fill-in the rest and click "send." I will then register your e-mail address with the site. I think you will receive an e-mail saying the site will now recognize you as a member. Again, click on the link, now, when you click on "interested in becoming a member" the site should recognize you, follow the thread to create your own password, click on "sign-in" and you should be looking at a new page. Before going too far, click on "learn more about the system." That may save a lot of questions and confusion.

Okay, on the left, click on the calendar tab. When Jeff and Kellie get a better idea of what we can do for them (the calendar is empty now), start signing up for delivering a meal (or, for those of us who are out of town or can't cook that day, calling a restaurant that delivers - I will try to post some phone numbers of restaurants or services where you can order or contribute to an J&K's account), cleaning house, etc... Note, in the upper right hand corner of the first page is a "sign out" tab and a "tell a friend" tab. "Tell a friend" gives you a way to expand the "helping hands" community for J, K & Z, and to include anyone who might be feeling left out - again J,K & Z can't afford to worry about peoples' feelings right now. So please don't feel left out (which you hopefully won't if you are reading this).

This system runs pretty smoothly once we get over the first bumps and get used to it. It makes life easier instead of harder. So please bear with it at first. Now...I just need to get together with J & K and post their needs on it. You won't find much there right now. Until then, thank you for your love and witnessing of J, K & Z. I doubt we can know how sustaining and worthwhile our love is in even the smallest gestures, for them AND for us. Namaste'.

Sunday

Last night was uneventful--phew! I think I slept more last night than I have the three nights prior. I'm getting used to the beeps and buzzes in the PICU, strangely enough.

Zoe continues to do well under sedation. Her face is starting to look a little less swollen; I can just see some inklings of cheek contour.

Her CT scan this morning showed her brain unchanged. She still had the same place of hypodensity in the right frontal region, but, as it did not look any worse, neurosurgery was pleased.

Today her scalp drain was pulled out and they have started to wean her off of morphine. They have also adjusted the ventilator so that she is required to do more of her own breathing.

The plan is that they will take her in for another CT scan tomorrow morning to determined if it is safe to extubate her and bring her out of sedation.

Boy, do we hope so! It's been too long of a time not being able to hold our baby.

Saturday (I think)

I arrived back at Seattle Children's this morning at 6:30am. The word was that Zoe had done great---until she somehow knocked her breathing tube out at 4am when the nurse had her back turned for a couple minutes. Her oxygen levels dipped, but, as it turned out, there was an anesthesiologist and respiratory therapist right outside the door.

They descended on her immediately and had everything back in shape in a matter of minutes.

Zoe wasn't born in the year of the very lucky Golden Boar for nothing.

After that little excitement, they put restraints on her arms so it wouldn't happen again. She is definitely in the care of a great team.

The good news discovered within this event was that Zoe's passageway was not swollen or inflamed. The anesthesiologist could replace the breathing tube with one of the same size without any problem. It was this very experience that would have created a bad issue had they proceeded a month ago when she was coming down with a cold. Had they not been able to replace the tube she would have needed an emergency tracheotomy.

Now, I got it.

Other than that, she continues to do well. She spiked a low grade fever last night and then again today, but they said it was to be expected. Blood cultures last night said she was still infection free; they will run some more cultures tonight.

Tomorrow they plan to do another CT scan. We hear that it will be more likely that they will wait until Monday to bring her out of sedation. The truth of the matter is that they will have more staff on hand come Monday to handle anything that may come up once they take her breathing tube out and bring her out of sedation. While I am impatient for Zoe to wake up, I am glad that they are vigilant about risk minimization.

Jeff had a couple of good conversations last night with other parents. One was the father of an young teenager whose heart stopped in PE class; the other was the mother of an eleven year old who has had just a very difficult journey with an extreme cleft palate. He has had 12 surgeries so far in his life and the last one did not go well. He is in the next bed over from Zoe, also in a sedated state for at least three days to give fragile damaged mouth blood vessel a chance to heal.

He said that it was good to talk to other parents--and it seemed good for them as well.

We are all in the trenches here.

Jeff goes home tonight; I stay the night with Zoe.

I really, really hope it is a boring night.

Friday, late

Zoe is still stable.

The next CT scan will be Sunday, if things continue to progress well. They are noticing an area of possible injury in her right temporal area, but the neurosurgeon said that it is not surprising given the traumatic experience she had in surgery. Frankly, he had expected to see more injury sites.

He continues to be pleased with Zoe's progress, but, he says we are not out of the woods yet. He still plans to keep her sedated until Sunday, possibly Monday.

Zoe comes close to waking at times. When she does she thrashes, moves her head back and forth, kicks her legs, and brings her right hand to her face to rub her nose or eyes.

Morphine makes people itch.

When she thrashes they give her a bolus of medicine to calm her back down. I do talk to her, but I notice that often my voice and Jeff's voice can cause her to thrash more. As though she is trying to reach us somehow. We spend time with our hands on her and have soft music playing.

Her head is swelling up--she looks like a kid from the Peanuts strip.

I'm home for the night--Jeff is staying tonight in the PICU with her. My stay there last night was not restful--as you might imagine. So, hot shower for me and off to bed.

Friday, mid

Zoe is doing so great.

The follow up CT scan she had this late morning showed a brain and skull behaving very well, with the swelling that they would expect to see after such an intensive surgery. She has no blood pooling, no sign of stroke.

Her swelling is minimal so far--our nurse is very impressed at how well she is looking.

Zoe means Life.

We alternate widely between being calm, feeling agitated and beyond exhausted, welling up at unexpected love directed our way, laughing too hard at silly jokes, and just numbing out and staring into space.

It's a very altered state we find ourselves in.

And, it is so awe-filled to see the depths of Life Force that Zoe exhibits. This little girl is amazing. And she picked us. Wow, we are so blessed by her.

Zoe means Life!

Whatever the outcome.

Contact Info

So, as I mentioned in the last post, we will be in PICU for at least three days, if not longer.

We are not allowed to have our cell phones on while in PICU, so, for those of you who need to get ahold of us you must call the Pediatric Intensive Care Unit front desk:

206-987-2040

Tell them you would like to speak with Zoe Newton's parents, and they will find out if we are available and then transfer the call to us.

For those who are bringing us food, please come to the Giraffe entrance as described previously, and ask at the information desk how to get to the PICU front desk. It's on the 4th floor not too far away from the Giraffe entrance. Once at the PICU desk, you can have them tell us to come meet you.

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Zoe's head looks so different, it is remarkable. Her CT scans are fascinating--her bones look like they are pieced together like a messy puzzle. We were told to anticipate this--like it would look as though she was pieced together with spit and glue.

She's not swollen yet--that will come. The word is still that the neurosurgeon wants her to be sedated for at least three days.

We feel cautiously optimistic.

hooray

Zoe is stable. She is in the PICU. Her CT scan was clear. By the time Dr. Hopper closed up her skull her brain was soft and pulsating as it should be doing--not hard and angry as it was when they first opened her up.

Hopper's face looked so happy and relieved when he came into talk to us--it was good medicine for us. We had been paged for him to come talk to us; we didn't know what to expect. I was preparing myself for anything. The sight of his face put years back on my life.

It's not even close to being over--she still has 3 days of sedation to go through, and then after that, who knows? Her risk of infection is higher than the usual craniosynostosis surgery patient. Her osteopetrotic bones may not heal as they should.

But.

We shall cross those bridges as we come to them.

Not Great News

We just met with the neurosurgeon, Dr. Avellino. He said Zoe is "okay", but it's not going as well as they would like.

Her bone is extremely soft and mushy; the dural wrapping around the brain is interwoven with the skull bone. Every time they drilled through the bone they hit brain matter. What is supposed to happen in a healthy construction is that they would drill through bone and be able to separate the bone from the dura while leaving the dura in tact.

Dura is supposed to be strong and resilient; Zoe's dura is more like an 80 year old's. It is not strong and easily tears apart.

Her brain was under a huge amount of pressure. That combined with the surgery trauma, makes it extremely "angry" right now, said Avellino. He wants to leave her in a medical induced coma for at least 3 days to help her brain heal.

We will be in PICU for at least that long, if not longer.

Nothing about the surgery has gone the way they would have liked--she's required so much blood product that they have brought in a cardiac specialist in the event she has a cardiac arrest from all the product (a distinct possibility). The pressure in her cranial system caused the lumbar drain to squirt and leak. They will not be doing the optic nerve decompression as it posses too much risk in her situation.

It is possible that she could have a stroke--the CT scan after the surgery will tell them if this is a real concern.

She has bone encroaching in her sinus vein in the brain. This is not good.

I am in shock while writing this. Avellino says we should hope for the best, but be prepared for some very rough stuff.

He said that Dr. Hopper should be finished in another hour, and then she goes for the CT scan, and then we will be able to see her.

What I know is that I had a wonderful evening with my girl last night. I'm holding that vital girl in my heart.

Please help us with that.

So Far, So Good

At 11am we got our first page from the OR nurse: they started the actual operation procedure at 10am and have been going at a good clip since then (so to speak).

We got to tour the Pediatric Intensive Care Unit (PICU) and took a look into the room that she will be in. Pretty nice! We are so lucky to have this hospital in our backyard.

We are well cared for--some dear friends have stopped in with food and coffee. Jeff and I have received accupuncture for the stress as well. So great to know alternative care practitioners!

Will write more as I know the updates.

Tawanda!

At the Hospital

It's a little after 9 am, we are waiting for our first page to let us know that things have started. We are nervous and tense. Met all the Docs and Nurses this morning after our 6:45 AM check in. Seems like a great group of folks, all very caring. Things feel calmer than last time. Keep us in your thoughts and prayers. We will update as things move forward.

Zendada

We Are A Go

The results from the blood work came back today--although her WBC count is slightly elevated, her numbers are within "normal" range. Her surgery will go on tomorrow as planned.

Halleluiah.

Her platelets are lower than they were a month ago. Platelets are what help the blood to coagulate; osteopetrotic babies typically have less than normal amounts. To accommodate this, Zoe will be loaded up with platelets before they start to work on her.

We don't have an exact time for surgery yet, but we are pretty certain that we will need to be there early in the morning.

As before, I will try to put regular updates in the blog here.

Thanks for your continued love and support. This is turning out to be quite the roller coaster ride, and I've never been much of a fan of roller coasters. I am grateful that you are all here to hold our hands through this.

New day.

Sinuses seem mostly clear. I just read that I can squirt breastmilk into her ears and nose to help fight infection. Crazy how powerful the stuff is!

We go to Seattle Children's in a few hours to get a blood draw and a physical from the neuro-surgery nurse. The blood test will show us if she's indeed fighting anything.

All those opposed to viruses, cry NAY!

------------------------------------

I just got off the phone with a BMT nurse at the Aflac Cancer Center and Blood Disorder Service of Children's Healthcare of Atlanta . I had found out about them through a woman who had posted on a blog entry I stumbled across while combing the internet for information about breastfeeding during a pediatric BMT.

The commenter had noted that the BMT team at AFLAC enthusiastically supported her continuing to breastfeed her baby. I wrote her directly and got the contact information for the team she worked with.

The chat I just had with the nurse confirmed their policy of endorsing breastfeeding during BMT procedures. They believe it to be optimal nutrition for the baby, and even put the breastmilk in the NG tube (that runs through the nose down into the stomach) when or if the baby can't nurse directly due to mouth pain from the chemo. They haven't experienced any complications resulting from nursing.

It's crazy to me that there have been no studies done on this subject. Any of you who knows medical researchers, tell them to get on it! There is work to be done!

ZENmama out!

Help.

This morning Zoe woke up with post nasal drip. It could be nothing; it could be the onset of a cold.

If ever we needed some good vibes our way, now would be the time.

All manner of prayer, positive visualizations, circles cast, healing vibes, anti-infective thoughts are needed for her now.

Just know for her and for us that she is not only well, but thriving. See her recovering nicely this Thursday night from a surgery that was successful and expedient.

Thank you.
--------------------------------

Today we went to Seattle Children's for her first day of pre-op appointments. The clear plastic rain guard was a very effective bubble. Never have I been so aware of how public places, especially a children's hospital, are crawling with viruses this time of year. We washed and gelled our hands so many times they began to smart.

The appointments went along without incident; it was our unscheduled meeting with Dr. Cunningham that provided a point of interest.

Among the issues I brought up with him was the little exchange I have been having with Dr. Manley regarding the breastfeeding vs. weaning issue. While initially he was cautious about my wanting to go against Manley's wishes on the matter, he got that I was very serious about my position--and understood that it was not merely based on an emotional whim not to wean her yet.

He said that in matters such as these it would be best for a peer of Manley's, such as himself, to talk to him on the subject. Cunningham said that he would do some investigating into the matter himself, wanted to read the copies of the emails I sent Manley, and would do his best to get some different opinions on the matter. He assured me that his approach would not be to merely look for proof to back Manley up, but rather to investigate to entire issue.

He said that, ultimately, the decision would be ours. There would be no cutting her off from treatment if we were to go against Manley's wishes.

I really appreciate Dr. Cunningham--I always feel like he really listens and understands. I broke down into tears while I was vehemently stating all the factors that backed up my point of view. He wasn't dismissive of me as merely an emotional mother. He, in fact, said that he had mentioned us to a few different people (without disclosing any names) when discussing parents undergoing an astronomically stressful situation. We have very good reason to be distraught.

His position with me on the whole breastfeeding topic was that I shouldn't have to carry the burden of thinking that I needed to research all of this myself--that he would be happy to look into it for me, and find some answers. (Very kind--and, I'm still not relinquishing the reins on this one.)

He was astute and emotionally present enough to observe, gently, that my focusing on this was probably a way for me to --

I know, I know--I said--Feel like I have a modicum of control in a bigger, scary picture where I have none!

Not to discount the importance of the breastfeeding issue. But, it is a very easy channel through which I can shove all of my need to DO. SOMETHING. PROACTIVE.

-------------

Zoe is asleep behind me. Her breathing is sometimes calm, sometimes labored. As she is a stomach sleeper it's difficult to know whether the stuffiness is due to sinuses naturally clogged by gravity from her position and how much is due to this phantom cold we are fearing.

I am being taught, over and over again, the lesson that worry accomplishes nothing.

I thrash about in my fear, but when I'm finally calm again and return to the place of stillness, of surrender, of knowing that this is all so much bigger than I, it's the closest I come to touching God in all this mess.

Milking, Part 2

Email received yesterday from Dr. Manley in regards to nursing during Zoe's BMT:

"Hi Kellie,

Sorry for the delayed response, I have been looking into the matter a little bit, and I should have passed that along sooner. We have allowed mothers to feed their infants undergoing BMT irradiated breast milk, which eliminates the risk of transmitting maternal lymphocytes to an immunosuppressed host, which is the real risk. The problem is the availability of that 'irradiator' for this purpose, and I'm trying to find out more.

Thanks for your very good questions. How is Zoe doing? When is her surgery rescheduled for?

Thomas"

My response to Dr. Manley:

"Hi, Dr. Manley,

Thanks for getting back to me. I am not interested in feeding her irradiated breast milk-- I want to nurse her from the source.

My understanding, again, is that there is no documented proof that maternal lymphocyte transmission to the immunosuppressed baby is actually a danger during a BMT. I am uncovering case after case of babies who were nursed while undergoing bone and stem cell transplants without incident.

I had an email exchange with one such woman who directly breastfed her son during the entirety of his BMT. Apparently she was even a carrier for CMV (cytomegalovirus), as they found out later, and this did not affect him at all. (Controversial, I know.) She writes:

'One more thing is that I am positive for CMV which I did not find out until after his transplant when I donated blood. Many people are positive for CMV. CMV is very dangerous for a BMT patient. Nothing was transmitted to David. I did have a bad cold during transplant and still, nothing was transmitted to David through my breastmilk. The doctors at Stanford agreed that breastfeeding helped David in many ways.' (emphasis mine)

GVHD (graft versus host disease) for her son has been limited to chronic skin GVHD--but no digestive tract signs of it at all. His donor was an unrelated 6/6 match.

I found another woman who breastfed her baby during the entirety of his BMT process, again, no complications. In both cases neither baby needed TPN (total parenteral nutrition--fed via tube) as neither one lost any weight on a breastmilk diet during the procedure. The first child was two at the time, the second, was four months old (which predates the 6 month point at which the 'leaky gut' effect of the baby's digestive tract stops). I don't know whether he has GVHD issues, but I could find out. I do know that he is 14 months post BMT and apparently doing very well.

Both of the BMT teams for these different babies encouraged the mothers to breastfeed--Stanford for the first, Atlanta Children's for the second.

Did you manage to talk to the immunologist I told you about? Again, as I understood it, his argument was that IF maternal lymphocytes managed to somehow colonize the baby from the breast milk, the immunosuppressants should be able to take care of them.

Again, as I wrote you before, he stated that:

'There are reasons to believe that breastfeeding would be beneficial (during a BMT) because
of the protection against many types of infectious diseases that affect the gastrointestinal and respiratory tracts. This is particularly important to a child who is immunosuppressed.'

Here's a link to an article about breastmilk preventing rotavirus and gastroentiritis, infection risks as I understand it, during BMT's:

http://www.pubmedcentral.nih.gov/pagerender.fcgi?artid=443262&pageindex=1

It is not my intention to be a pain or disrespectful of your vast knowledge in your field, but I am sticking to my guns that I need for you to prove to me that breastfeeding her would be detrimental to the process, or even greatly risky, before I agree to weaning her.

I hope that if I decide to nurse her, despite your wishes, that it will not be a 'deal breaker' with you. You must know that the last thing I want to do is endanger my child. Everything I am reading and coming across on the subject, however, is telling me that breastfeeding her through the BMT will be greatly beneficial for her.

Zoe is doing fabulous. No one can accuse her of 'failing to thrive', as it seems most babies with osteopetrosis seem to suffer from. Her surgery is rescheduled for this coming Thursday. We have been keeping her in a bubble to avoid another virus.

Thanks for your time and consideration,
Kellie"

****************
You know, it's not much fun to go toe to toe with a doc--especially one who holds my daughter's life in his hands. I just have to trust that breastfeeding her will be a good thing. I don't believe I am being naive.

But, it still is scary to outright oppose a doctor.

Tomorrow we have pre-op appointments for Zoe. We're planning to put her clear plastic rain shield over her pram so that NO ONE breathes on her in that hospital. She is going to have that surgery on Thursday--and it will be a success, by God!

-------------------------------------

Two things:

Note the added links to the right of the current post; there are informational websites listed about our situation. (I'm finally ready to research)

And, who is borrowing season one of "Six Feet Under" from us?? I honestly can't remember! I don't need you to return it right away, but I just want to know who has it--thanks!