Saturday, May 31, 2008

Post-Surgery Bleeding Issue

Last night when Sarah asked me what was for dinner at around 10:30, my response was interventional radiologist (IR) sliced and diced with a side of prickly resident.

After I posted yesterday, we had a really rough evening. While Gracie’s central line surgery was technically a success, her recovery was anything but smooth. When the IR doc spoke with us yesterday, he shared some of the challenges they encountered during surgery and all of the impromptu decisions that resulted. For one, the catheter that they insert has to do a loop up in her neck near the shoulder blade (under the skin). It didn’t want to loop, so they tried for a while to push it deeper and deeper to get it to loop. Ultimately they made a tiny incision to help make the loop. He closed it with superglue. This challenge led to a longer surgery than we expected.

‘All good and well. Thanks so much for passing along the info.’

The problem was that while they were pushing the must have burst a capillary or two, causing the point of entry to bleed more than expected. The IR told us it was "oozing" and we were instructed to apply a little pressure and the bleeding would stop after a few minutes. When they took Sarah and I back to see Gracie in the recovery room, she looked ok. One of the Post Anesthesia Care Unit (PACU) nurses, we’ll call her Helen, was holding her all swaddled up in a rocking chair, rocking and soothing her while applying pressure to the spot. The other PACU nurse, Zelda, was sitting in a chair working on her documentation.

Gracie was squirming and wiggling in Helen’s arms, clearly not liking the pressure she was applying. Helen was really good with her, trying to keep her calm. Zelda, on the other hand, was very clearly annoyed by our presence. I guess we were in her way. No amount of “thank you” and small talk would warm her up. Zelda was our primary caregiver in the PACU, while Helen was the charge nurse, helping out because the PACU was winding down and because she loves Gracie, remembering her from our previous visit back in February. Zelda gave us no reason to trust her, or to have confidence in her.

Without going into too much detail, Gracie’s oxygen saturation was running low, which the nurses attributed to the lead placement. Fine, I asked them to replace it to make it more effective, as it was scaring the crapola out of both Sarah and I (especially sensitive to this after our previous incident). They replaced it but the numbers were still too low for our taste. Still Zelda and Helen were unaffected. As the numbers continued to drop, both of us vocalized our concern again, and Zelda finally decided to follow our suggestion to increase the oxygen levels around Gracie, to help her out a bit.

The numbers moved up. Whew!

Then, Helen decided it would be best to go ahead and lay Gracie up on the bed. Helen didn’t have the best grip, but got her up there. While rocking Gracie in the chair, Helen changed blood covered gauze pads frequently. I’d estimate about 10 pads in the 30-45 minutes we had been there to this point. When she removed her hand once Gracie was up on the bed, we got to see the horrible insertion site of the catheter. Gracie’s skin all down the left side of her body was stained dark red with blood. The “oozing” site, was not just oozing, it was running. Seeing this pushed Mommy closer to the edge, and made both of us a bit antsy to get this bleeding stopped. Helen also seemed pretty concerned that the bleeding was still so strong given all of the pressure applied so far.

At this point, big bro instincts took over and I started to demand things. Info on how long they had been applying pressure thus far? Answer – nearly 2 hours. Questions about other options? None. Demands to talk to the doc? Zelda called the IR at home (she heard his dog barking) and he insisted that we continue to apply pressure. We didn’t speak with him.

After 20 or 30 more minutes and still bleeding, I started to pressure Zelda again. She didn’t like it, and at one point told me to get out of her chair. I wish I had know the Chief Nurse Executive’s name right at that moment, just to drop names and be an ass, but I didn't. Sarah did speak with the BMT resident over the phone, who also said 'just continue to apply pressure,' even though she had never even seen the chart, any images, or Gracie and her catheter. Sarah let her know what she thought about that – uncle Mackie was very proud of her for standing her ground. Apparently, the resident couldn’t drag her sorry ass down two flights of stairs to speak with us in person and to see what we were dealing with.

There was an anesthesiology resident walking by, who offered to help us out. I feel sorry for him, because by the end of the night I was handing him four letter word after four letter word, not about him, but about his medical colleagues and their unacceptable response. Sarah and I were both concerned about unnecessary infection risk of being in the PACU and just this open wound in our little immune compromised baby. Central line infections can be really serious, and will be all over the docs’ collective asses to be sure the rule out any problems.

After about 3 hours of this and still pretty heavy bleeding, there was no more nice chit chat. Both Sarah and I were in high complaint mode. Poor Helen was totally on our side, but unable to do anything. By this point, Zelda stayed away from us as much as she possible could. Because the PACU was pretty slow, and we were causing a stir, Gracie’s little bay could’ve used some stadium seating.

We had our friendly and unsuspecting anesthesiologist call the surgeon again. Again, he came back with continue to apply pressure. FINALLY, he got the resident to come down. Helen asked us to step out for a minute, and told off the resident. Go Helen! We finally went back up to our room of 5-D, and Sarah held Gracie while the nurses took turns applying pressure. At 10:30, it seemed like the bleeding was slow enough to just cover it up. When I looked at it this AM, it had bled quite a bit more, but was truly “oozing” at this point.

Ultimately, the IR doc was probably right. We needed to keep applying pressure. However, spending 4-5 hours doing it was the wrong call – or at least having us at the bedside while they do it was the wrong call. After an hour, they should given her platelets or something to help the clotting. After 2 hrs, one of the docs should’ve been at Gracie’s bedside, either applying the pressure himself, or coming up with alternate solutions. The worst part was the horrible communication of what needed to be done.

Another problem with all of this was that the IR doc didn’t know where the source of the bleeding was, so we were to move where we applied pressure up and down the catheter until we found the spot that made it stop bleeding. How do you do this? It’s one of those statements that makes sense to the person barking the order because he doesn’t have to think about executing the order.

Zelda told one of the docs that Gracie had been losing about a teaspoon of blood every 5-10 minutes. Multiply that times a few hours and you can imagine the mess Mommy was going through.

Ok, this is dragging on too much. I can’t do the event justice, other than to say it was all infuriating and exhausting. Poor service. Bad manners. They forgot that Gracie is OUR baby, not just another baby. :) Both Gracie and Mommy slept better than usual.

Argh. I really would eat him.

Friday, May 30, 2008

Day +22 - Central Line Surgery Today

Sorry for the update delay. So much has been happening; it’s hard to keep up with it all. Noni went back to Lake City today. It was hard for her to go, and it will be hard for Sarah too, since Noni was able to take night shift once in a while. Now with just Sarah and I here, Sarah will be in the hospital every night.

Right now Gracie is downstairs in surgery to have her central line replaced. The cuff from her old line was slipping, so the consensus decision was to go ahead and replace the line. This is a good idea, if for no other reason than to stop having to worry about the line constantly. Up to now, every dressing change has been a stressful struggle to make sure the line doesn’t move. This should reduce that concern by at least 50%.

Gracie definitely has some minor liver issues. Her skin and eyes are a little bit yellow, but the docs don’t seem too concerned. They are monitoring her bilirubin levels to keep tabs on it. There’s a slim chance she has some minor VOD, but again it doesn’t seem like anything to worry too much about.

Gracie is on extra precautions because she is producing a lot of snot and sneezing sometimes. They took a sample to rule out a rare respiratory disease that (if she has it) must be controlled, especially on a unit with immune-compromised kids. As a result, all of the staff needs to wear gowns and masks when entering the room. We learned today that family members are supposed to gown and mask as well. Even mommy has to wear a mask. Frustrating that we learned this a couple of days later than we should’ve. Definitely some issues here with consistency of nursing staff - some just aren't very good, some are still in training, and some are awesome. That sid, communication between them is not so good... Anyway, we were worried that the mask would scare Gracie, and while she doesn’t like it much, she’s learned to play peek a boo with it. She actually ripped one of sarah’s masks already.

I know this sounds a little scary, but it’s just a precaution. We need to continue this until we get final culture results back (assuming they are negative). The preliminary results are back and all clear, but we need to wait for the cultures. Docs expect all to be clear.

Hmm. What else. Oh, Gracie is totally off of her pain meds. She can still get a one-off dose if need be, but so far she’s been doing ok. She has learned to talk to herself to self-console. I think she must have learned this from Muntz. He talks to himself all of the time. :) She will lay there and say nigh-nigh-nigh-nigh-nigh and chew on a binky until she is ready to sleep. It’s so cute.

When Noni was here, Gracie spent a couple of night sleeping in the crib, which was great. Unfortunately, when Sarah is around, Gracie wants to be closer to her, so they brought the bed back in last night and returned to the less than ideal sleeping arrangements. Oh well. Fortunately both Sarah and Gracie are used to it.

Gracie’s numbers continue to look good. After they took her off of growth hormones, the numbers dropped (as expected), but today they started to rise again. I don’t have them in front of me but her total white blood cell count is around 3.4, and Neutrophils are at 2.0; both up from yesterday. Her leukocytes are a little bit low, but that’s ok. Neutrophils are more important.

As far as her weight, she’s still retaining fluids, but she is starting to reduce that a little. Her weight is slowly dropping, but needs to drop a bunch more. I’m thinking of putting her on a treadmill with me. :) Her kidney function tests are a bit elevated as well. This is likely due to the volume of drugs and fluids pumping through her. It really puts the kidneys to work. They aren’t too far out of normal range today, but they’ve consistently been a little above normal.

All of this said, Gracie “seems” to be doing really well. She is up and playing a lot. She’s doing great with both physical and speech therapy. Her white cell numbers are up, and her demeanor is generally really good. One of the best diagnostic tests is just how the baby looks and behaves. On those parameters she is great.

That’s it for now. Please pray for successful line replacement surgery and recovery. Please pray for good kidney function so that Gracie and eliminate all of the excess fluids. Pray for clean cultures, and of course, good nights of sleep for both Mommy and Gracie. Also please pray for our friend Rylie down the hall, for her continued progress. We love you guys, and I’ll try to update more frequently.

Uncle Mack

Day +21

I am up way too late, but I wanted to make a quick update. Today was day +21 and it was a good one. Noni spent the night in the hospital last night and worked on transitioning Gracie back into the crib. It apparently went well and so we'll see how we do tonight with Mommy. :)

Gracie's counts dropped again today. This time it was a substantial drop, but still not unexpected. Her WBC was at 2.5 and her Neutrophils were 1.2. Hopefully we won't see much more of a drop before we start growing again.

Today was also a big day because they tested her engraftment. That means they're testing to see how many of the new cells are donor cells vs. how many are Gracie's old cells. We're hoping to see 100% engraftment for our precious one. What stinks is that we won't find out for a whole week! Ugh... I hate suspense.

On the activity front, Gracie seems to be feeling pretty good. She's still kind of nauseous so we're trying to keep a hold on that. She did hold down an oral diuretic today so I must say, I am pretty proud of her. Baby steps toward our release.

Her weight and fluid retention is still up but she did manage to drop a little. I hope she continues to pee all of that fluid back out. She is seriously puffy right now and its affecting her skin a bit. Poor Peanut. :(

Ok, this post in rambling and random enough. Off to bed for Mommy. I hope to have lots of good news to post tomorrow.


Wednesday, May 28, 2008

Day +20

So, there has much improvement over the past 2 days. Her diaper rash is slowly getting better again and she has been awake, alert, and playing much more yesterday and today. :) Good stuff. Her counts finally began to drop today as a result of being off of the growth factor and that is expected. So for today, her WBC is 4.0 with her Neutrophils at 2.2. These are still great numbers but we can expect them to continue to drop over the next few days while we see if her new bone marrow can step up on the production without help. GROW CELLS GROW! I forgot to ask the doc when he was in, but I think Gracie is supposed to have her engraftment checked in the next day or so. This is when we find out if Gracie's new cells are taking over or not. I'll let you know when I know. In the meantime, pray for 100% engraftment!!!

On to the not so good news... Gracie is retaining fluid again, so we are back on the Bumex (the stronger diuretic) and its on a continuous IV drip again. Like we've mentioned before, its really important that Gracie doesn't retain too much fluid so that we can keep her lungs dry. So back on the Bumex we go and hopefully Gracie will become a pee pee machine again. :) She has something like 2 lbs of extra water weight on her little body. Yikes.
Looks like we're going to be staying in the hospital this week, despite everyone's optimism. Mommy is secretly relieved to be staying a little longer. I'm sure you can all understand why. They're looking now at maybe getting out next week, so we'll just see how it goes.

Occupational Therapy came by this afternoon and Gracie really showed off her stuff. She used her pincher grasp we've been working on, pulled some baby beads apart, and pushed buttons on a camera toy. The therapist was very impressed. She also colored for the very first time so now Mommy has a sheet of scribbled paper to hang on to forever. Awwww.

Gracie's still having some problems with the medicine taking, but she's choked a few things down. She's still so easily nauseated, so I just don't know if we're going to make it out of here without the NG tube. I have my fingers crossed though. You never know what this Amazing Grace might do.
Bonus: Gracie has started putting things in her mouth again over the past day or so which is a great sign that she is feeling better. Hopefully food and meds won't be too far off. :)

We miss everyone so much and hope you are all well.


Monday, May 26, 2008

Day +18

Well, Gracie counts just keep climbing. Her WBC is 4.5 today and her Neutrophils are at 3.0. Those are some awesome numbers! They are so great that the plan is to remove her from the Growth Factor meds she's been on to boost her cell growth and see how they do on their own. They will probably drop tomorrow and maybe for a day or 2 before beginning to climb again.

So unfortunately, Gracie has another terrible diaper rash. :( The Bag Balm doesn't seem to be helping her much with this one, but I'm hoping that all those white blood cells she's growing will go help her take care of it. Her skin seems to be ultra-sensitive these days which is apparently another normal side-effect right now. Also, she's retaining fluids again so they're needing to increase her diuretics to help us get that under control again. She's still extremely nauseous and not taking her oral meds. She choked down a little bit of Tylenol today because she needed to have platelets and whole blood transfused, but when she took some more later for her enzyme treatment, she heaved until she threw up a bit of mucus. :( Here's hoping she'll get better soon and avoid the NG Tube, although we keep hearing about it so I'm getting the feeling that they want to give her one. Yikes.

Gracie has definately been sleeping a lot the past few days. I don't know if its because the diaper rash hurts her so much or if she is just really still pretty sick from everything she is going through... something tells me that its probably a bit of both so we're letting her rest as much as she can in here and looking forward to our playful smiley baby to show up again soon. :) I'm sure she will.

Keep the prayers and chants coming.


Saturday, May 24, 2008

Day +16

Well, I have to give credit to our friend Roseanna for guessing our counts for today. This morning Gracie's WBC count came back at 2.5 or 2500. Way to go, baby girl! Her neutrophils are at 1.9 or 1900 and she is just doing so well. She did need a transfusion of platelets and whole blood this morning since her levels wew a little low, but thats par for the course and its been several days since she's needed a transfusion anyway.

The docs are again very encouraged to see such great numbers and their goal is to get us out of the hospital as soon as possible. Today I got my TPN (Total Parenteral Nutrition) training so that we can keep Gracie well-nourished when we are released while we are waiting for her to get her appetite back. Our current battle is with the oral meds. So far Gracie hasn't been able to keep them down. Please pray that her tummy starts to feel better so she can handle these meds. Our alternative to the oral meds is for her to get a tube up her nose (NG Tube) and into her tummy to give meds that way. Ummm, no thank you. I wish I could make Gracie understand how much more yucky this would be... Here's hoping she takes her meds and avoids that speedbump.

Gracie also wants me to tell you all the the combover is back! Baldness is beautiful and she's proud to be mostly hairless. :) She's also still a bit puffy and has a few scratches on her nose because her pain meds make her face itch, but she is still our little cutie!

Friday, May 23, 2008

Day +15: The Auctioneer is Here

Hey all. Just a very quick update.

According to Sarah, Gracie's white blood cell counts are up again today - WBC = 1.9, and Neutrophils = 1.5. This is great news. GROW BABY GROW!!!!

"We've got 1.9, anyone for 2.0? Can I get a 2.0?"

Gracie's doing great, but things are still very tough. She's playing more, but she definitely is still having some pain. Her pain meds are down to 0.3, but she still needs an occasional bolus in the toughest times. The also took her off of Bumex (the drug that makes her pee pee) in exchange for a drug with fewer side effects.

She's has a couple of rashes on her hands and face, likely symptoms of Graft versus Host Disease (GVHD). In a nutshell, GVHD happens when the newly transfused cells (the cord blood) recognize that Gracie's body is not the same body they came from. The cells start to attack her body as a defense mechanism.

This is normal, and all kids get GVHD to different degrees. The objective is to get it under control as best we can, and pray that the new cells accept her body. Please please please accept her body! GVHD can be severe, and it can last a long time. We just want to minimize it.

Please keep our friends Rylie and Chance in your prayers along with Gracie. These kids and there families are going through the same process alongside Gracie, and deserve all of the prayers we can give them. In fact, Rylie is just down the hall. Chance is around 70 or 75 days post transplant and he looks great. The docs are now looking for a date when Chance and his family to return to their home in North Dakota. :)

Thursday, May 22, 2008

Our Amazing Grace, indeed!

So Gracie's WBC count is at 1200 (or 1.2) as of today -a huge and greatly celebrated leap- with her neutrophils at 900 (or .9). This is very awesome news. The docs are so excited to see her counts steadily rising so quickly and they have set a preliminary goal for our discharge at the end of next week!!!! That would be something like 20 days earlier than the expected average! Of course, to be released, Gracie will be required to do lots of stuff. Firstly, she'll need to be off her pain meds entirely, which we are steadily decreasing everyday. Also, she'll need to be able to take all of her meds orally. Yikes! That will be a real challenge since she is still a bit nauseous and unable to take anything besides water by mouth without gagging. So we'll be working on that as well. I'll also be getting some training to be able to give her the IV Nutrition she's been getting for the past few weeks to keep her nourished until she is ready to eat again.

So much to do but I'm so happy to have such great news to report today. :)

Day +13

So today Gracie had an excellent day! She spent much of the day awake and smiled and played a lot. She's also much less mucusy and congested and only has kind of a hacking cough and runny nose leftover. Hopefully that means the worst is behind us. It seems to still hurt her a bit to cough like that, but for the most part, she is doing much better. I am hoping to try and get a decrease of her pain meds a little tomorrow.

Even more great news to report- Gracie's white blood cells jumped up to .7 today! Excellent and exciting progress. We got the differential back and her Neutrophil count is at .5 which normally would qualify Gracie for a trip around the Unit hallway with a mask on, but luckily at Gracie's age, its not really necessary to do that. She's pretty content in her little room and definately safer when it comes to germy things so we've decided to forgo the hallway adventures. Gracie said I could go for a walk in the hallway instead. This kid is all heart, let me tell you. :)

Sad news... our Daddy had to go back home today. We miss him so much already and wish he could stay here with us the whole time. Of course, someone has to bring home the bacon and especially the insurance to pay for our extended stay here in the lovely metropolis of Minneapolis, so he will be working away for a few weeks before returning here to check on his girls. We're definately counting the days.

Spring has sprung here in Minneapolis and it is truly beautiful. Everything is bright green and flowering. The scent of the sweet dogwoods linger in the cool breeze and you can't help but breathe deeply and enjoy the non-recirculated-HEPA-filtered-extra-dry-transplant-unit air. Little puffs of dandelions seem to always be floating around these days and everywhere you look, tulips are wide open and basking in the sun. There are even a few bunnies running around and enjoying this beautiful Spring weather. And as much as I wish my heart could be as light and floating as the dandelion puffs, it still stays a bit heavy with the knowledge that my Peanut is not enjoying the sweet air, warm sun, and beautiful colors this Spring has brought. She's stuck in a tiny room, and hooked up to more machines than any little baby should ever have to deal with. However, I try to remember how many more Springs she'll be able to enjoy as a result of this confinement and I hold tightly to the feeling of hope I get.

Much love and dandelion puffs to you all.

Tuesday, May 20, 2008

Day +12: Early Cell Growth! YEAH!

Just a quick update today. Gracie was much better today than yesterday. The best news is that we have some cell growth! Her white blood cell count was on the board at 0.4!!! That was pretty unexpected and welcome news. At 0.5 they start to analyze and count the different types of cells (neutroplils etc). So I think Gracie is hearing your chanting (GROW! GROW! GROW!) Keep it up.

She was still pretty tired, but did get up and play just a little bit. Muntz and I were acting like idiots trying to keep her attention so she'd play longer and scream less. :)

Gracie still has lots of sores in her mouth and in her GI tract. They are still producing a lot of mucus and she is still having a hard time getting rid of it. We have a new contraption to assist, however. We have a miniature suction tube (just like the one the dentist has) to suck out mucus until she learns to spit them across the room. Gracie already hates the suction, but its better than watching her struggle with it.

All in all, no major complaints today. Gracie is still not feeling well, but that is to be expected right now. Daddy said she had a rough night last night, and that slightly increased her pain meds from 0.4 to 0.5 last night (compared to 0.9-plus, when the poo hit the fan yesterday). Daddy is pulling night shift again tonight because he has to fly back to lake city tomorrow and bring home the fat and oil free bacon. He'll be back in a couple of weeks. I know Sarah and Gracie will really miss him, but were very happy to have him around through these (the worst of) days.

Keep praying and chanting GROW! GROW! GROW! GROW!!!

A Boxing Match On A High Wire

Testdriver here, posting from afar.

Gracie's Mom, Noodles, Noni and Muntz are all holding it together in Minneapolis and I'm here in Philly, a million miles away, with my two healthy, but likely plague-ridden babies, who are not allowed to visit immune compromised people on a BMT unit, and would probably not mix well with lots of tubes and cords and things that beep around, anyway.

From my phone updates, I can hear us collectively holding our breath. We're waiting, waiting, waiting for cell counts to creep up, waiting for fluid balances to normalize, waiting for meds on drips to be titrated ever-closer to Gracie's exact need for them. Gracie just got knocked down by the medical blow of a lifetime, and we're all holding our breath, watching her try to get her feet back under her, watching her reel and stagger, and imagining how her head must be spinning.

The balancing act that is maintaining Gracie's body's stability right now is really something to behold, a high-wire act like nothing you can believe.

It starts with a side effect of chemotherapy--immune suppression--served as the main course, in order to erase her body's ability to make blood and other fast growing cells, but that means wiping out ALL KINDS of fast growing cells (the reason chemo was originally developed and used in cancer patients--kills those fast-growing tumor cells) like the lining of the mouth--and the rest of the GI tract, the hair, the lining of the urinary tract, various organ tissues, everything.

So now that those cells are also compromised, there are new problems. Mouth sores are one very painful problem--mediated along with other painful problems--by narcotic pain medications. Narcotics, particularly in people as small as Gracie (easy to overdose a little baby) have to be carefully, carefully titrated, to avoid their own cascade of side effects, the most dangerous of which is respiratory depression. It's a delicate balance. She's gotta breathe.

It's also important to protect that urinary tract. If you can't make urine, you're pretty much sunk, so keeping the chemo from compromising her urinary tract function is extremely important. How to do it? Get that stuff through her body and out as fast as you can. To dilute it, she has to have LOTS of fluids through her IV, and then she gets loop diuretics to help her punch-drunk kidneys move all that fluid out. Sounds sensible and simple, but it's another crazy balancing act. If the diuretics are too weak, and she gets more fluid than her kidneys can manage, the extra fluid will back up in her blood stream and leak into her lungs (the "wet lung" we keep hearing about) impairing her breathing again. Too much diuretic and there is danger of her losing important electrolytes (like potassium) which are essential to muscular function, and importantly the function of her heart muscle. So, these electrolyte levels also have to be carefully balanced.

She gets an antibiotic drip, which prevents invading bacteria, or even her own native cultures, from growing out of control and infecting her immune compromised body. She continues to receive enzyme replacement therapy, which provides her with the critical enzyme until the donor cells can start growing in her bone marrow and producing enzyme on their own. I'm sure she gets much more besides, these are just the list we've discussed on the phone.

All this is to illustrate how absolutely miraculous the success of this treatment is for children like Gracie. It's a monumental undertaking for all concerned to maintain artificially these balances that, for most of us, nature maintains effortlessly. As the graft takes and her cell counts improve, Nature will take over again, where medicine is doing all it can to keep up.

I know it's starting to sound like there's an echo in here, but we are so grateful to everyone who's following Gracie's journey, and for everyone who thinks about her and prays for her, and loves her. We can't thank you enough.

Monday, May 19, 2008

Day +11: Yuck!

Hi all. Day +11 was a wild and unpleasant ride for all of us, especially Gracie and Sarah. I won't go into detail now because I'm really tired, but today Gracie scared the H-E-Double-Toothpicks out of all of us. I feel like someone punched me really hard in the stomach when I wasn't expecting it.

Before I go further, it's important that you know she recovered like a true champion, and before we left tonight, she was better than she has been in several days. I also want to recommend that you read the what Mandy (testdriver) wrote in post that is just above this one, because it (coincidentally??) explains exactly why this happened today and why Gracie's body reacted the way it did.

As background, fluid management in Gracie's body has been a big challenge since she started Chemo. She's retaining fluids, but at the same time she is dehydrated (Mandy's posting - the next one above - describes why). Her pain meds have been pretty high as well, and she needs lots of fluids to keep the narcotic levels safe, a delicate process in a baby her size.

Today, in a nutshell, it all fell apart late morning. Gracie had started benadryl as part of her ERT protocol (she had ERT today). She also had been given a bolus of her pain meds, and was already on a relatively high level of narcotics to manage pain. The combination caused her oxygen saturation to plummet suddenly (also described in the posting above). When you combine this with the discussion of "wet lungs" that we heard from the medical resident yesterday, it all scared the dickens out of us. Poor Sarah was alone with Gracie at the time, but Jim got there quickly, and Noni, Muntz, and I all arrived just after the event.

Fortunately, they were able to stabilize Gracie. They decided to stop her pain meds for most of the day, and returned to a much lower dose this evening. Great news is that this afternoon and evening she was alert and playing and having a ball for the most part. In fact, it was the best I've seen her in a week!

It just goes to show how difficult it is to know how to treat pain in someone that can't tell you "it hurts." She appeared to be in pain for days despite the level of medication she received (and I'm sure she was). After a few days, she may just have been so gorked up on pain meds that we couldn't tell if enough was enough. She still "looked like" she was in pain, and we wanted to do our best to keep her comfortable. But again, she can't say when enough is enough. It's just impossible to tell. It was pretty clear this afternoon that she will be fine at a lower dose. She will also be more alert and more active, which will aid the healing process.

More Good news: All of her cultures for which we have results are clear. She had a chest xray that also came back fine.

We've never been so scared. If there is a silver lining, it's that the event got the unit staff's attention and my family's attention, so everyone is being a bit more vigilant and thorough when examining our Gracie. And if I find that resident who spooked us with the "wet lung" talk I plan to take him over my knee and whip him until he cries and promises to be more careful with his terminology. Grrr! Tomorrow, I'm taking mommy to a spa for a massage and a facial. Very well deserved!

As always, thanks for the warm thoughts and prayers. Keep em coming. And don't forget: GROW! GROW! GROW! GROW!

Sunday, May 18, 2008

Hitting Double Digits - Day +10!

Today was day +10. Today, Gracie's doctors lowered her pain medications, which is good news. They are still having some challenges managing the fluid levels in her body - dehydration and over-hydration in the same little body. They are running tests to determine where the fluids are being and not being retained. Hopefully nothing to be concerned about.

We also got her labs back, and her white blood cell count actually hit 0.1! At least we know something is happening in there. That number is still too low to really matter, but it's something. The doctors don't pay too much attention to the count until it reaches 0.5. At that point, they focus in on specific sub-types of white blood cells, most importantly cells called neutrophils.

Our friend Rylie, who is at Day +11 today also has a blog, and her parents did a pretty good job of describing what's happening with the white cell counts and why they matter. Rather than recreate it here, follow this link and you will get a better sense for what these numbers mean.

We picked up Muntz last night, so he got to spend some time with Sarah and Gracie today. Noni wasn't feeling well today, so she stayed home to rest. Uncle Mack has been a little out of pocket for the last day or two, but Noni and Muntz tell me that Gracie seems to be feeling a little bit better than she was a few days ago. She's been a little more active, playing a little bit more, gabbing, smiling, and drinking water every once in a while.

She still has the sores in her mouth and throat, which are creating a lot of mucus. She coughs every once in a while, but hasn't yet figured out how to hock a big lugie and spit it all out. Despite her roots, she didn't come out of the womb a certified redneck. :) Anyway, the coughing is uncomfortable and upsets her.

Her diaper rash has cleared up, thanks to the Bag Balm. Sarah says it's "the bomb," but I thought she was just calling it "the balm." Silly uncle mack. Anyway, it's in your local walmart pet section, and it has magical healing powers. I'm going to start bathing in it regularly and I'm also going to buy stock in the company that makes it.

Hope you are all doing well. We need lots of prayers as we start scrutinizing lab results and cell counts, as well as to deal with hassles like mouth sores and fluid levels. Thanks for all of your support.

Friday, May 16, 2008

Day +8 Update

I apologize for not keeping you all up to date across the last week or so. The primary problem is that I just haven't really known what to say. Sarah has been very effective in translating the tone around here. Much better than I could do.

Since Gracie had her transplant, she's been really sick, really uncomfortable, and progressively doped up to control the discomfort. It has been very hard for Uncle Mack to witness, especially because this is all just part of the treatment process, and there is nothing - at all - that I can do to help. Noni and I have been trying to provide relief when and where we can - fetching things, keeping company, and anything that is needed. It's frustrating though. It's hard to watch Gracie struggle, and possibly even harder to watch my little sister struggling. :(

Today is Day +8. Yesterday when I left, Gracie seemed to be feeling a little better. The hospital staff seems to have her pain mostly under control. The side effect, of course, is that she's sleeping a good bit of the time. She wakes up every once in a while - sometimes happy, sometimes upset. The staff still has to wake her up all of the time, and she seems annoyed with them (or is that just me :) ).

They've officially started to give some of the labs and numbers back. These are the tests that tell us how well the graft is "taking," and whose cells are winning. How fast are the new cells growing etc... It's still too early for any detailed numbers, but at least we are starting to get some data back. We'll share with you as soon as we have something to share.


Oh, I also learned that 7 (or 5, can't remember) of the staff on Unit 5-D are named Sarah. Ha!

One piece of good news I forgot to share before: Sarah and Jimmy got upgraded to a newer, more comfortable, an considerably larger suite at the Ronald McDonald House. Bye bye room 124, hello 444. :) It has 2 rooms and a bathroom. One room has a kitchenette, a small couch w/ a pullout bed, a small kitchen table, a rocking chair, and a TV. The other room has 2 queen size beds, 2 oversize bunk beds, a desk, and a TV. They also have enough closet and drawer space, which was probably the most irritating part of the previous room. If you are a neat-freak, you might have run out screaming because there were stacks of things everywhere. :)

Wednesday, May 14, 2008

So we're entering the tough phase...

which can probably explain my lack of posting. We're currently beginning day +6.

Gracie is almost totally bald at this point. She has a fringe-like dusting of fuzzy hairs left on her head and lots of scalp. The hair has stopped falling out so we can all function now without picking hair off our hands, our clothes, our lips, binkies, pillows, food, and everywhere else is was getting to and driving us all crazy. On the plus side- Gracie has a lovely shaped head and is still as cute as ever. :)

Mothers' Day brought both happy and sad emotions to Mommy. My first Mothers' Day was spent in the hospital for the day, and then Noni took the night shift to allow Mommy and Daddy their first night out together since we were admitted 3 weeks ago. On the downside, I had to leave my reason for celebrating in the hospital for not only my very first Mothers' Day, but also her 10 month birthday. :( Happy 10 months, Little Peanut. We went to a really nice Japanese place in the heart of the city and we enjoyed some yummy food and drinks before searching wildly for a Walmart open past 10 pm on a Sunday night. Haven't they ever heard of SuperWalmart around here??? Sheesh. Then we crashed and woke early the next morning to relieve Noni from what turned out to be the beginning of a rough few days for Gracie.

We have now entered the sick phase. Gracie is hurting. She is very much in pain- she has sores in her mouth and throat, another wicked diaper rash, and is generally very achy these days. We've started her on some pain meds to manage the pain until we get past this point. Hopefully it will only be another few days. We hope to start seeing some improvement around day +9 or +10. Until then, all we can do is make her comfortable which is proving to be a tough job. She started on Morphine until we found that it was making her itch enough to actually scratch herself in the eyeball! Yikes. So now we're on an alternative med and we're currently trying to adjust the dosage to ease her pain. Its a slow and sad process. Poor Gracie is truly uncomfortable, and Mommy and Daddy can barely stand not being able to fix her hurts. God knows we'd do anything we could.
She had a platelet transfusion this morning and you can tell that they have totally dropped because Gracie is very bruised all over her arms and legs. Poor baby.

Anyway, according to the doctor, this is all expected and not out of the ordinary at all. Its funny how that news doesn't comfort me much. :(

Daddy spent last night and will be there again tonight with Gracie in the hospital as he is better equipped to deal with this difficult process than Mommy. This is again one of the many times I am thankful for my husband's clear head and his medical experience. I don't know what I would do without him here right now.

So while this is not a happy update, it is what we're facing right now and we could really use a few extra prayers for Gracie's comfort and healing. Hopefully she'll be back to her happy little self soon. I miss my sweet smiley Peanut so much right now.


Sunday, May 11, 2008

Day +2

Today is much of the same stuff- trying to fight a fever, some nausea and vomiting, lots of sleeping. One huge difference- Gracie is balding and she's doing it fast. Her hair started falling out this afternoon at about 5 pm. Its now 11:30 pm and she has about half the hair she started with. We've been collecting what we can in a Ziploc bag and its currently about half full.

Mommy is not handling this very well.

By tomorrow, Gracie will probably be mostly bald.

Progression pics:

You can see she's still puffy from retaining fluid and she's getting pretty thin up top now, but she's still smiling like the trooper she is. I couldn't be more proud of her for her awesome attitude.

Thanks for the prayers and keep them coming. We need Gracie's new cells to grow and get strong!

Saturday, May 10, 2008

Day +1!!!

How wonderful to now be counting UP the days now that Transplant Day is behind us!

Transplant Day went very well, although you can really tell that Gracie is beginning to feel the effects the chemo has had on her body. She's very nauseous all the time and has been fighting a fever for the past 2 days. She's been sleeping a lot which is probably a pretty good way for her to be passing the time right now. I definately want her to get plenty of rest right now as her new stem cells try to make their home in her bones and begin to produce healthy cells to heal her. According to the Transplant Docs, so far Gracie is doing beautifully and nothing thats happening is unexpected.

The Unit Chaplain here put together a small blessing ceremony for Gracie on the day before her transplant and it was truly very touching. I loved being a part of that and it really made my soul feel lighter than theprevious days
She's still on pee-pee meds, and she's started a few new ones. Cyclosporine is a big one that she'll be on for a long time to help suppress her immune system to avoid having it attack her new cells. Also, she started a growth hormone to get her new cells to begin producing blood cells like crazy so that they can take over in Gracie's body. All good stuff.

I have to tell you all that Gracie is really being a trooper. Despite all the she's going through right now, she's still smiling and playing and being her charming little self. I could not be more proud of my little tough cookie. :) She is a real fighter to the core.

Thanks for all of the great pictures. Gracie and I love looking at our digital photo frame and seeing all the people who love us smiling back at us. :) Keep sending them... we still have lots of space for more!

Thank you all also for all of the comments and for your positive thoughts and prayers. We are so blessed to have such a wonderful support system and knowing that we have so many people praying for our girl is such an amazing feeling.

Much love.

Thursday, May 8, 2008


Hi, everyone! Aunt Hys, here.

Just a quick post to share Gracie's wonderful news. She won a prize today in closed-circuit TV Bingo at Fairview! Gracie could not be more delighted at her good fortune, and she can't wait to enjoy her fabulous prize! Sarah will post later today to tell you all what she won, and to share Gracie's pitch-perfect acceptance speech.

In other news, Gracie's cord blood transplant was completed about twenty minutes ago (around 2:25 central), and she's snuggled up with Noni, sleeping it off. Sarah will address that, too, a little later today. Congratulations, Gracie, and happy New Life Day!

A late night/early morning post on Gracie's "Life Day"

So in 12 hours from now, Gracie will be getting her new stem cells from a donated umbilical cord. She will get a fresh chance at life. We made it this far. I am so glad to be at this moment in time. I am even more glad to stop pumping my poor baby's tiny body full of chemo and work on trying to get her healthy instead.

Of course we have a very long and very tough road ahead. Gracie will get sick, go bald, and really fight for her life as her body struggles to accept these new foreign cells over the coming weeks and months. We will still be confined to this room for at least another month and we will have to really try and keep Gracie comfortable and healthy... and do our best to keep ourselves healthy too. I have to admit it- I am so scared.

On the other hand, I am so hopeful for Gracie and for the chance to give her a real future. A long life full of ups and downs, highs and lows, joys and sorrows. A chance to experience the world, to grow up, to know love and friendship, and the simple pleasures of life- smelling the cleans scent of rain, dancing on her Daddy's feet, eating an ice cream on a hot summer day... These are my hopes for my Gracie.... an ordinary life for an extraordinary girl.

Dear Lord, hear the prayers of my heart and bless my precious baby.

Day O! Gracie's Re-birthday! Transplant Time is 1:00 PM

Hi all. I have to make this brief, but wanted tol let you all know that Gracie's transplant is scheduled for 1:00 PM today! Please pray a little extra when you get a few minutes.

Noni is here now and we are roommates. She stays up way to late, and is keeping me awake with all of her snoring! Kidding mommy. Today, we had a nice little family blessing ceremony to add that little extra that will be needed to ensure the graft takes. We need the new cells to take over in her body, and start to grow and multiply!!! I want everyone to chant "Grow! Grow! Grow! Grow!" in unison. :)

I'm so happy that we get to start counting up tomorrow. I was never very good at subtraction. We love and miss you all!!!

Wednesday, May 7, 2008

Today is Day -1

Yesterday Gracie was noticeably more worn out than on previous days. It seems like the chemo is catching up to her. She sleeps a lot. When she's awake, she splits time between playing and fussing. I think she might decide to be a dentist when she grows up because the girl LOVES to brush her teeth. She doesn't have teeth yet, but she gets these foam swabs to clean out her mouth a few times per day (these help prevent mouth sores) and she just loves them. It's so cute to watch her gnaw on them. :)

The hospital staff placed her on a medication to make her pee-pee more to get the chemo through a little faster, and also something to keep her blood pressure down. Her blood pressure has been consistently above what they want, although mom and dad say her blood pressure is generally higher that what they want.

The best news of yesterday is that mommy went back to the RMH last night to try to get a few hours of uninterrupted sleep while daddy took the night shift at the hospital with Gracie. I haven't found out how that went yet, but we were hopeful Gracie would not holler too much since she doesn't get hungry these days, so less need for breastfeeding. She still gets her nutrition through an IV.

Today, uncle mack picks up Noni from the airport. We are all really excited about that. Not only will Noni be able substitute for mommy better than anyone else, it's also just really comforting to have your parents around during times like these. Mommy (or Noni) always knows best. Even when you are 35. :)

Well, today will be the last day of chemo. YAY! Tomorrow is transplant day!!!

We love you, and please send us pictures of you and/ or your family for the digital frame. Even if you've never met Gracie, I'm sure she'd love to know you are thinking about her. :)

Tuesday, May 6, 2008

Call for digital pictures

Hi everyone. Typing here in the room with the White family. All is well, Gracie is sacked out, and mommy and daddy are watching Rachel Ray cook something. woo-hoo!

Gracie just got a new digital picture frame so she will be able to see all of the people who love her while she's recovering. If you have a digital picture of yourself and/or your family, please email it to daddy at or to uncle mack at


Day -2

Hey everybody. I'm very happy to say that I have very little to report. No news is good news.

Day -3 was pretty boring in Unit 5D room 5. Gracie is still tolerating the chemo pretty well. Last night she started to appear a little more pink than usual, which may have been a minor reaction from one of the drugs she is taking to address chemo side effects. Other than that, she was sacked out most of the afternoon and evening when I was there. She woke up for diaper changes, played a bit, and then down for another hours or two. She did have a big day yesterday, with physical therapy, occupational therapy, and speech therapy in the early part of the day, but we are suspecting that the chemo is wiping her out a bit, and making her a little more tired than usual.

With not much else to do, daddy and uncle mack played wii most of the day. We mostly play wii tennis. It's a lot of fun, and passes the time relatively quickly. It's tough to play in the tight room, especially when you have a big serve like me. :) We now have a third controller, so mommy, daddy, and uncle mack played for a little bit which Gracie cheered from the bed.

I'm happy to report that the diaper rash is getting much better. While it sounds like the stuff from the pet section might've been a better choice up front, the spackle seems to be doing the trick.

Noni will arrive in Minneapolis around 3:30 tomorrow. While uncle mack is good company, loves to play with Gracie, has a car, and can type, I don't really trust myself to be alone holding Gracie. I'm too clumsy and as most of you know I only have 1 fully functional arm (I type with one hand), and if I drop her she might break! Noni is much better at holding babies, and will be a great relief for mommy and daddy to get outside a bit more. We can't wait for her arrival!

It's very hard to believe that 2 days from now, Gracie will get the new cells from the anonymous cord blood donor. We are so grateful to this donor. I wish we could tell her just how grateful we are. We did find out it's a little girl, and we know the blood type, but that's it.

Noni was going to have the unbilical cord blessed, but it doesnt sound like the timing will work out. Next best thing is for everyone to pray really really really hard tomorrow night and first thing Thursday morning for the new cells to work and for Gracie's recovery to be a smooth as possible. All of our collective prayers will bless the cord cells.

Or friend Rylie is at Day -1! Tomorrow is her big day. Please send warm thoughts and prayers to her tonight and tomorrow as well! We'll catch you up on the play-by-play later.

Monday, May 5, 2008

Day -4, Day 1 of Cytoxin

Well, today is actually Day -3! I started this post last night, but got sleepy.

Hello everyone. Uncle Mack is back in Minneapolis so I can pass along first hand information about Gracie. Today was her first day on Cytoxin. This is the drug that will eventually cause hair loss. :( It's so strange. To look at this kid, you'd never know she was a week+ into chemotherapy. She's a little bloated from all of the fluids they are pumping through her, but otherwise she is just having a ball most of the time. She plays and flirts just like she always has. I did see her spit up one time yesterday, but it was pretty much mid-play and a non-event for her. She's the best sport ever!

Anyway, Sarah mentioned a wicked diaper rash. Whoa!!! I had no idea what that meant. It's terrible. Despite changing diapers every 60 to 120 minutes, it's just next to impossible to keep the harsh chemo drugs off of her skin, as she gets rid of them (pee-pee). Especially around her "no-no" area. And because she has fewer and fewer white blood cells, she can't fight the rash to make the area better. It's tough to see, but understandable now that diaper changing time is not her favorite time.

The unit staff gave us some sort of cream to create a physical barrier between her skin and the pee-pee once it comes out. Jimmy compares it to spackle. It seems to be working pretty well, as the area appears less irritated and she is less fussy during changes. A rule with real spackle is that you are supposed to let it dry before anything touches it. Well, we don't have that luxury with this human spackle. Gracie is too active, and we have to be sure that we catch all of her pee-pee so the nurses can weigh it (in the diapers, people). They need to know that she's pushing the chemo out of her body fast enough to prevent kidney infection, and to make sure the dose in her body is appropriate at any given time (that explains all of the fluids and the bloating). So, she has to have a diaper on. The diaper sticks to the spackle a bit, causing the diaper removal process to take a little while.

Gracie is doing more cool stuff, even after being gone just one week I can see a difference. She stands up pretty much by herself, just hanging on to mommy, but mommy doesn't have to hang on to her. She is "talking" a lot more too (she even said da-da). She has lots of stuff to play with, and she's

Mommy and Uncle Mack got out yesterday for a bit. The weather here is amazing. About 65-70 degrees and sunny. So nice! We went to the two story target in downtown Minneapolis. We walked in, and they announced "closing in 5 minutes!" Despite our mad Target dashing, they eventually had to turn out the lights to get us to come to the checkout.

It hard to believe that This Thursday is the big day. More to come later.

Friday, May 2, 2008

Day -6

Good Morning! Gracie is sleeping in a bit due to another late night last night so I figured I'd hop on and give a quick update.

So far, the Busulfan hasn't been too tough on Gracie. She has lost a some of her appetite, but she is still nursing some, so Mommy is happy with that. On the downside, the chemo has given her a wicked diaper rash, so diaper changes have become a nightmare. Poor Peanut. We're experimenting with a few different creams and such to see if we can get it managed. Hopefully we will soon. She's still her happy, playful self although she is more tired these days. For the most part, the good outweighs the bad.

Yesterday we had a visit from Occupational Therapy who did a standardized test to see where Gracie was developmentally from their standpoint - motor skills, play, etc. - Gracie tested beyond her age at 12 months+ and boy was there a celebration in room 5! I am so proud of her. She is a total trooper and a pretty smart cookie.

I still hear "MaMa" over and over for most of the day and it still melts my heart each time I hear it, so I guess you can say that Gracie is doing her part to make Mommy's stay in the hospital a bit more tolerable. :) Although I did get a chance to bust out of the jail cell and make a trip back RMH to pick up dinner last night. Oh wow, how easy it is to take advantage of the opportunity to spend time outside. The air was fresh and crisp and the wind was blowing in my face.... if it weren't for my baby trapped back in the room, I might not have come back. :) That brief time out was wonderful. I really look forward to when I get to take the Peanut out with me to enjoy the world we so often take for granted.

Much love and a few new pics.

Gracie enjoying her last dinner at RMH for a while.

Our tiny room on the unit

. How we get our meds.

And where it all goes in.

But still a happy girl!