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.

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.

xoxo.

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.

xoxo.

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.

xoxo.

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!

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. :)