Posts Tagged With: Medicine

Every Damn Day Just Do it

Every Damn Day Just Do It

Sounds like a Nike commercial, doesn’t it? If you have found my blog or any other website ever in your life – you know how to use a search engine. You know how to ‘google’ stuff. Do you ever put random words together to see what sort of pages you arrive at?

I wonder.

Someone entered the above set of words (probably googled them) and landed on my blog. (Most blog software keeps track of search terms.)  Quite fitting actually, but raises the question – what was this person looking for?

I doubt it was the story about a little bambino languishing in a hospital bed.

I doubt it was the story about said bambino’s frustrated and exhausted mama.

Just what was this person looking for?

I’m sure I’ll never know, but the sentiment is apropo, isn’t it?

Because every damn day, we just do it. We get through each day. At the end of which, we breathe a sigh of relief that we had this day together. We  thank the universe for this time, however tenuous and we have the tenacity to ask for more.

Monday was no exception to this mantra. While it had started with the Surgeon re-suturing the breathing tube bright and early, the day overall was relatively quiet. The sutures seem to be holding, his bleeding was minimal.

He seemed comfortable most of the day. All the doctors oohed and aahed over his skin. It was uplifting to hear how impressed they were with the way his skin is healing.

Go! Baby! GO!

I cracked opened the door in my heart that keeps hope and optimism and light tucked safely away, separated from the fear and frustration and darkness. I let the hope and optimism and light buzz around me for most of the afternoon. I was content to corral the fear and frustration and darkness back into the corner, back into the dark hole it festers in.

Then the Fellow showed up at our door.

Everyday they do blood cultures on all 3 of his access sites. That’s how they knew the fat-loving fungus was growing in his central line and not anywhere else.

That’s how they now know there’s bacteria growing in  his new leg PICC.

He’s only had it for two days! How can he have an infection in it already? He’s on 4 different broad spectrum antibiotics, an anti-virual, an anti-fungal and a monthly infusion to ward off pneumonia’s.


Now I have to wonder – he hasn’t needed as much sedation for the past 2 days. Is it because he’s sick? Not feeling well?  I thought he was mellow because he needed blood on Sunday, maybe it’s something else. He threw up yesterday, does his belly hurt?  He’s been running low-grade temps for a few days now. Was that the first indication of things to come? I have to go back to my notes – no – the fevers started prior to the insertion of the leg PICC.

UGH! Some days the ‘what if’s’ drive me crazy.

An infection can be a death sentence for him. He already has Aednovirus, the bug that started all of this. He already has malassezia furfur, the fat-loving fungus in his central line. He already has VRE (vancomycin resistant enterococcus) in his poop. Now he has an unknown infection.

And no immune system.

I feel defeated. Deflated. Devastated.


Every. Damn. Day. Just. Do It.

We will get through this day.  At the end of which, I will breathe a sigh of relief that we had this day together.  I will thank the universe for this time.

And I will always have the tenacity to ask for more.

Categories: Life | Tags: , , , , , , , , , , , , , , | 11 Comments

Blood and Stitches

The one thing I did not mention in Saturday’s post is the thing that came back to haunt us today. Multiple times.

During the multiple events of Saturday, the Surgeon had to come and re-suture David’s breathing tube. If you recall, the other Surgeon had sutured it to his cheek after David had extubated himself 2 days in a row. In between then and now, the Surgical Fellow had re-sutured the breathing tube on 2 more occasions.

Just before David’s brachycardic episode on Saturday, the Surgeon had been back to do the re-suture. That was the 4th time the breathing tube has been sutured to his little denuded face.

So fast forward to 1am Sunday morning and the Fellow and the Surgical Fellow come in because the Chaperone’s are concerned for the suture – it looks loose, they are worried it may become looser and he could run the risk of being extubated, again.  Surgical Fellow feels it can wait until morning. (Rounds are at 7:30am.)  He suggests a Patient Care Attendant if we’re very concerned.

Let me clarify – he has 2 full-time nurses all night long, the RT checks on him every hour or so AND I am sleeping (if I can actually get to sleep) right next to him. The Surgical Fellow wants to add a 4th person to the mix to do what exactly? In the words of said Fellow: “You can get someone to sit in here and read their magazines and keep an eye on the tube.”

I told them flat-out – No! I understand the risks of him being extubated, but having someone sitting in the room reading magazines until morning is not the answer.  Especially someone who is not even a nurse – what would they be able to do, exactly? I say damn lazy Surgical Fellow – he could have added a couple quick sutures around the breathing tube – as an added measure – if he truly felt there was concern. I just think he didn’t want to mess with the Surgeon’s handiwork.

So they agreed to be “generous” with his sedation. We made it through just fine until….

What? It’s 4am? Really?

This time it’s not the breathing tube. Capt Snuggles is bleeding. Profusely. From the open areas on his back. We had to change the dressings and all the pads underneath him. It just soaked all the way through. This is relatively new. He has had some bleeding during the dressing changes, but this is the first ‘spontaneous’ bleed.

We get him cleaned up and re-dressed. He’s snuggled back up, I try to lay down for an hour before rounds.


Shift change (7:30am) Just as the Chaperone enters the room the ventilator starts going off – David’s moving and just as he turns his head – I catch the breathing tube. The suture has come undone and desperately needs to be replaced. If I hadn’t been standing next to him , there’s no way I could have stopped him from extubating himself. Just like someone reading a magazine wouldn’t have been able to do anything. The Chaperone held the breathing tube in place until the Surgeon came in. Since it was time for rounds, the Surgeon  wasn’t far away.

I listen to rounds while the Surgeon sews the breathing tube back in place. After the Surgeon leaves, the Chaperone calls out that he’s bleeding. Again.

The ICU Attending, the BMT Attending, the Fellows, the Surgeon and more Chaperones all race into the room. It was a little unsettling, to say the least.

Our Designated Chaperone had been changing David’s diaper when she noticed the bleeding from his back again. This time there were areas on his right and left sides. Pressure wasn’t stopping it. They had to use a special spray that helps stop bleeding. They also went through gobs of ‘quick clot’,  special gauze that helps stop bleeding. It took almost 4 hours to get the bleeding under control, re-dress him and get him cleaned up.

In the middle of this mayhem – the Surgeon had to come back – you guessed it – the damn suture came undone, again.

To say I’m frustrated almost belittles the whole situation. We have been in high gear everyday for a solid week. It’s an odd disparity – his skin is so improved, but the rest of him is suffering.

The Surgeon wants a call-back to Shriner’s for help with the breathing tube situation. The logic is there are patients with severe facial burns that require breathing tubes – how do they keep them in?

As for the bleeding?  *shrug* BMT seems to think it’s the ‘mechanics’ behind his skin healing. He needed a full unit of blood today to make up for the loss – that’s a lot of blood. He’s had approx 22 blood transfusions since we arrived here on August 18.

5 of them in the past week alone.

It’s 1am Monday morning and there’s still hustle and bustle about the suture holding the breathing tube. Surgeon gets called, yet again. I’m sure he’s not pleased with this whole fiasco.

He arrives promptly at 7am, adds to the sutures already there. He is unhappy that he has to extend the suture to David’s little cheek, but he does it.

Rounds will start shortly and our days’ activities will be back in full swing soon.

I’m hoping for a peaceful day.

I think we deserve it.

Categories: Life | Tags: , , , , , , , , , , , , , , , | 8 Comments

David’s 3-Ring Circus


I had no trouble with sleep Wednesday night. Most days are long, but in that never-ending sort of way. Wednesday seemed to fly and by the time I got a chance to sit-down, I was too exhausted to even begin to write. Yep, that’s right I was exhausted. The little babe ran me (and everyone else) ragged.

So our day started at 4am with the loss of the arterial line. During rounds, it was decided to replace the arterial line. He also needed his dressing change with the Shriner’s doctors and then he needed a bronchoscopy. His CT scan from the day before showed what was described as ‘ground-glass’ areas of haziness. In other words, there was stuff in his lungs that shouldn’t be there. So the ‘bronch’ is a flexible camera that goes down his breathing tube and can grab a sample to be tested. It can determine if there’s infection in the lungs that isn’t being detected in the blood.

I was tired just listening to what needed to be done over the course of the day.

So from 2pm until almost 8pm, we had a revolving door of people and activities.  I liken it to a clown car full of doctors and nurses. We easily had 25 people in the room at one point and his room is not that big.

The Shriner’s doctors said his skin looked good, that we were doing a good job with the dressing.

Yeah, Team!

The re-insertion of the arterial line didn’t go as well. In fact, the Attending, the Surgeon, the Surgical Fellow AND the ICU Fellow ALL tried and none of them could do it. They finally gave up around 6pm, so the Pulmonary doctors could come in and do the ‘bronch’.

The ‘bronch’ wasn’t pretty, either. The flexible camera has to go down the breathing tube – well it takes up about 80% of the tube, so he wasn’t getting very much oxygen while they did the procedure. They had to pull out several times, so that he could catch up. He had quite a bit of bloody secretions in his lungs. They’re not sure if it’s an infection or something else. The sample they took will help figure it all out.

David has been assigned 2 Chaperones during the day shift since they started these dressing changes, but usually only one at night. Last night they needed two. There was just so much that still needed to be done.

Needless to say, by 9:30pm I could no longer keep my eyes  open. I crawled onto my little cot and passed out, exhausted. To be honest, I thought I would be able to write this on Thursday morning, before his dressing change.

He had other ideas.

So here I am at 11pm, Thursday night, trying to catch up on both days’ events. In essence, you get 2 posts for the price of one.

Fortunately, nothing catastrophic happened to wake us up early. No, he waited until mid-day to drop his heart-rate. We’re used to him being tachycardia (fast heart-rate) but brachycardia (slow heart-rate) is a new phenomenon.

Around 11:30am, the eye doctor came in to dilate his eyes. They needed to check his eyes for any evidence of the fat-loving fungus he has acquired.  Right after he put the drops in his eyes, his heart-rate dropped. So the Fellow runs over, yelling for resuscitation drugs to be drawn up, the RT came in to draw the bedside blood gases, the nurse was drawing blood to send to the lab. He dipped below 60 beats per minute for about 5 minutes, then he slowly came back up on his own. They did not have to administer any drugs. But there was concern that he may have had a stroke or a brain bleed, so they ordered another head CT scan. They couldn’t go by his pupils because they had just dilated his eyes.


So the afternoon was almost identical to the previous day. They still needed to re-insert the arterial line, they needed to do his dressing change and now he had to have another head CT Scan.

Our days have become a cross between Bill Murray’s character in Ground Hog  Day and a Three Stooges short. The daily doses of frying pans to the head are starting to wear me out.

2 Attending’s and a Fellow attempted to re-insert the arterial line today.

David said no. Access de-nied.  It’s heartbreaking to watch them stick him over and over and over. But I agree that it needs to be placed. The arterial line gives us a constant blood pressure, heart-rate and it’s a better sample of blood for the blood gases the RT needs to run. So it’s a must have.  The Surgeon’s will try again tomorrow. They may have to do a ‘cut-down,’ actually make an incision to visualize the artery.  I feel another repeat of Tuesday coming on…

His skin continues to improve. We didn’t need to use the gel-sheet on the soles of his feet. The were all pink and pretty!!  This is tremendous news – the soles of his feet were, by far, the worst affected area.

Go! Baby! Go!!

His CT scan also came back as normal. Round of applause, please!

They think he may have ‘vagaled’. When the eye doctor was mucking around in his eyes, he could have put pressure on the eye which, in turn, caused the drop in heart-rate.  Sort of like the Vulcan death grip Dr. Spock used on Capt Kirk, only not quite as cool.

The fat-loving fungus started to show up at the same time the GVHD flared. We know the Adenovirus triggered the GVHD in the first place, so I wonder if this fungal infection triggered this episode.

Regardless of the reason why or how, I will continue to gather my scraps of hope. Like fabric scraps for a quilt, my hope is accumulating.

*thank you*

Categories: Life | Tags: , , , , , , , , , , , , , , , , , , , , | 7 Comments

Monday, Monday….

ah, Monday’s.

Monday’s are usually pretty busy. We get new Attending’s for each service: ICU, BMT & GI. We spend a great deal of time in rounds filtering through the legacy left from the previous week (New, as in different, not new as in never met before. We’ve recycled all the Attending’s on all services.) .  My job is to bear witness to all things David. I attend all the dressing changes.  I am his constant companion. I see what works and what doesn’t.

I am an outsider, still. Sometimes my suggestions are laughed at, which is, at times, frustrating, to say the least. David is still unable to regulate his body temp.  Someone, in passing, had mentioned that fluids can be warmed before being administered through the IV.

So I asked the obvious question, can we warm his TPN ( IV nutrition, largest volume of IV fluids he receives) The suggestion was met with lots of head shaking and smirks. No, No, warming fluids is only used in emergent situations, to rewarm a critically hypothermic patient. Yet, here I sit listening to the warming box as it works to warm the TPN before it enters his little body.

I think it becomes a matter of suggesting it enough times, to various people, until someone takes the idea seriously and runs with it.

It’s helping, too. His temp is only 1 degree shy of normal, instead of 5.

Go! Baby! Go!

His dressing change went well today. The doctors all ooohed and aaahed when the dressings were taken off.  His skin is looking better. He still has quite a few areas of breakdown, but the overall feel is that his skin is improving.

I have helped streamline the dressing process. Sometimes you just have to jump in and do something. That’s exactly what I did.

The dressing consists of this sticky gel sheet applied to the skin then wrapped with gauze. Each day prior  to the re-dressing of the babe, I lay out pieces of the gel sheet, cut and backed with gauze, to fit all of his body parts, all except his boy bits and his head/face. Those don’t get a dressing. It takes me about an hour to set it all up before the dressing change starts, but it saves a significant amount of time in re-dressing him.The first day took 4 hours. 4 hours in which he was naked and open to the chill. Today it took an hour and a half.

Yeah, Team!

The Fellow joked with the Chaperones that maybe I should get a percentage of their salary for my contributions.


More good news is the assumption that his gut is improving, as well. He’s having considerably less poopie diapers, so that’s a good sign. AND he did not need any additional campath or any other med, for that matter, today. That’s an even better sign. All in all he had a pretty good, awesome, phenomenal day except for the eye doctor’s report and the fact he’s not peeing. Not much pee, anyway.

His eyes are of great concern. He was having GVHD involvement with his eyes since the beginning, but they had been getting better. Today they were considerably worse. They increased his eye drops back to every hour around the clock and tomorrow they will put a contact lens in each eye to help protect them.

Onward we plod.

The doctor’s from Shriner’s will come to oogle the babe, tomorrow. (Another apt suggestion that took a few days to come to fruition.) It only makes sense that the doctor that suggested this particular type of dressing should come back and assess his progress in terms of continued use of the dressing.

Sometimes my logic even impresses me.

All in all, though, I think Capt Snuggles is on the right path. I think he has improved ten-fold from where he was at this time last week. He’s still not out of the woods, not by any means,  but my shreds of hope have graduated to full – fledged scraps.

Maybe we’ll be home by Valentine’s Day……

Categories: Life | Tags: , , , , , , , , , , , , , , , , , , | 6 Comments

David 2 Lymphocytes 0

His lymphocyte count remained at zero for the 2nd day in a row.

It is a teeny, tiny shred of hope.

Shortly before starting today’s dressing change, David was finally able to bring his core body temp up to 96.8.  It took 24 hours and it’s still not normal, but it was a small victory, albeit short-lived. After this morning’s dressing change, his temp had fallen to 92 degrees. 8 hours later, it is still only 93 degrees.


Each day will be like this. The gut-wrenching anticipation of what the day will bring. My days don’t seem to have an ending or a beginning. Each day is just a continuation, hour by hour. I may sleep for a couple of hours then I may be awake for 20.

Time is irrelevant.

Except in terms of his comfort, then time is everything. David is on outrageously high amounts of pain meds,all running constantly. Fentanyl,  Versed, Dexmedetomidine,and  Dilaudid, these run continuously in an attempt to keep him comfortable and sedated. He needs to be sedated while intubated lest he self-extubates, again. And he’s in pain. Lots and lots of pain.

These meds are not enough.

He also receives scheduled doses of Methedone and Ativan, one every 3 hours.

These meds are not enough.

He receives no less  that 6 PRN’s approx every 1/2 hour. Fentanyl, Versed, Ativan, Morphine, Ketamine, Dilaudid.

Theses meds are not enough.

If you or I ingested all of these doses in the course of a single day, it would kill us, no doubt about it. His body just chews it up like candy, enough just isn’t enough.

So high is his current need that they decided to try a ‘Propofol holiday’. Tonite he’ll get 12 hours of constant Propofol, increased when needed, additional PRN’s every ten minutes, if needed. The pain meds will be turned down. If they could get through the 12 hours and wean him off the pain meds completely, that would be ideal.

Right now his pain receptors are so overloaded, the pain meds aren’t working. Propofol is used in anesthesia,  so it acts differently than all the drugs he’s currently on. This plan gives his pain center a chance to re-boot. They’ll re-start the pain meds at the end of the 12 hours, hopefully at a more manageable level.

He’s five hours into his propofol holiday.  He’s resting comfortably for the first time in days. So far, so good.

Another tiny shred of hope.

All the doctors come to the re-dressing of the babe. The most important are the Oncology docs – they are the ones who treat the GVHD with a fair amount of regularity. They are the ones who determine his course of treatment.

They gather around inspecting his skin for the tiniest bit of improvement.  Even though his skin is angry red from where the top layer of skin is sloughed off. Even though there are signs of new blisters forming on what little bit of intact skin he still has. Even though it’s only been 2 days since they administered the campath. They uttered words that were music to my ears…..

We are cautiously optimistic.

I will tuck it away and not flash it about, some things are meant to be savored, shared quietly among friends.

Maybe sleep will come a little easier tonite with that wee gem tucked under my pillow…..

Categories: Life | Tags: , , , , , , , , , , , , , , , , , , , | 12 Comments

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