Posts Tagged With: babies

Baby Toaster Strudel

Capt Snuggles is 7 months old today.

He should be able to sit unassisted, he should be able to roll, he should be working on the whole crawling thing. He should be able to hold toys in his hands and he should be able to sit in his high chair or walker and munch on cheese doodles and baby cereal. He should be drooling with all the teeth he’s getting and he should be squealing with laughter when the dog licks his face. He should be working on the word’s “mama”, “dada” & “ball”.  He should be home.

Instead, I’m wishing I could say we celebrated with balloons and cupcakes.I’m wishing I could take his picture. I’m wishing I could rattle off all of the baby milestones that he’s reached. Hell, I’m wishing I could say we had an uneventful day.

But, I can’t.

I was all set to sing the praises of the Surgeon who finally, after 3 days and 8 different doctors,   finally got the arterial line placed. 

But that was Friday night. And if I hadn’t been so exhausted, again. I would have written an entirely different post than this one.

As it stands, the Surgeon did succeed in placing the arterial line, no cut-down required. Everyone breathed a sigh of relief. Myself included.

That was @ 6pm.

Around 10pm, his PICC in his left leg stopped working. It was the 2nd time that day that the PICC had occluded. The Chaperone’s replaced the IV tubing the 1st time. This time it was further in, probably clotted in the vein. They contacted the central line nurse on call. There’s a drug called TPA that breaks up clots and only the CVC nurses are allowed to administer it. Of course, she wasn’t in the hospital, so it was about midnight when she showed up.

It’s silly, really. All she did was inject the TPA into the PICC, like any other IV med. She told the Chaperones (we had 2 again on night shift) to wait 2 hours, if it still wouldn’t flush, then wait 2 more hours. If it still didn’t work, she’d either come back (yeah, she only came to administer the TPA) or the day-shift nurses would be ready to come in – they could come and take a look.

Frustration aside, this was the line that had his TPN (nutrition) in it. So until it was fixed he had to go on maintenance fluids since his access was limited. Many of the antibiotics and pain meds are incompatible with TPN, so it basically needs it’s own line.

Fast forward to 6:30am and I wake to the PICC –  broken. The catheter was still in his leg, but the ‘hub’ had apparently broke in half. So now they had to either try and salvage it or place a new one.

Oh – and did I mention that by now – the arterial line had also quite working? That’s right – I woke Saturday morning to a broken PICC and an unusable arterial line. The Fellow had already contacted the Interventional Radiologist to see about re-wiring the existing PICC.

The decision was made to do without the arterial line. Unless he takes another turn for the worse, they are willing to wait and see if he can do without.

We had to travel in order to go to IR. That meant the Fellow, both our Chaperones, the RT and the PCA all had to help transport him. Sorta like a parade, but without the fire engines and candy.

The bad news is they couldn’t savage the PICC. (1 1/2 hours to try)

The good news is, the IR doctor was able to place a new PICC in his other leg on the first try. (1/2 hour start to finish)

I Love You, IR!

Back upstairs to finish the dressing change and


brachycardia, again. And not just for a few minutes, and not just dips into the 60’s . He was ‘brady’ for a solid 1/2 hour and dipped all the way down to 45 heartbeats per minute. This is the 3rd time in as many days and no ‘vagal’ suspected, soooo…..

Time for atropine.

They tried for an EKG, but the leads won’t stick to his skin, because, well, he doesn’t have any. At least not enough good skin, his belly, chest and back are still quite weepy and oozy. Blood work showed a very low potassium level, he was more acidotic than earlier in the day and his body temp had dropped down to 91 degrees.

They needed to warm him up and fix his potassium. Once his heart-rate was stable, we quickly finished the dressing change, turned on the warmer for his IV  fluids, piled warm blankest on him and added not 1, but 2 warming blankets, one under and one over him.

We had him cooking like a baby toaster strudel.

It’s now midnight. All has been quiet for a couple of hours. His TPN has been re-started, so his electrolytes should be better by morning. His heart-rates have been good and he’s been resting comfortably.

*thank you*

I saved the best nugget of hope to share with you here at the end. I’m almost afraid to say the words out loud. So many things have just gone wrong this week…

I want to share with you that his skin is looking better. Not just a little bit better, either. More like


ssshhh! Don’t say it so loud!

Maybe, one day soon, I will be able to take the Captain’s picture again.

I’m hoping….

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

Damn you, Lymphocytes!

The good news: David did NOT extubate himself today. Round of applause, please.

The bad news: I may have over-exaggerated the power of campath. Not on purpose, mind you. It really was supposed to kill all of his lymphocytes. Hiroshima, remember? Which, in turn, was supposed to STOP the progression of the GVHD.  Yeah, well, David apparently does things his own way.

His lymphocyte count tripled overnight. Tripled?!?!? TRIPLED?!?! Lymphocytes are not our friends.

So tonite he’ll get a 2nd bombing dosing of campath.  Nagasaki, anyone?

While they haven’t completely run out of drug therapies that maybe be useful in containing the GVHD, the prospective agents that are left are quite fierce.  Some think a meteor smashed into the earth and killed the dinosaurs.

He may need that meteor.

Today’s re-dressing took place  in his room, along with a dozen or so of our not-so close friends. They managed to finish in 2 hours instead of 4. Each with their own opinions on the best way to promote healing, prevent infection AND keep him comfortable. Slather him with antibiotic ointment and wrap him up to keep his delicate skin moist. OR Leave the less vulnerable areas open and exposed to the air in order to let him dry up.

Shriner’s Hospital will be providing a consult tomorrow when the re-dressing takes place. David doesn’t have a 2nd degree burn, his skin just looks like a 2nd degree burn. His blisters and extreme skin loss are caused by inflammation from the inside out to the surface. Burns obviously develop from the outside down into the deeper layers of skin. So while Shriner’s are experts in the survival of burn victims, not GVHD, they may offer some insight on how to care for his delicate skin, how to prevent infection and promote healing.

Tomorrow’s session will be another marathon event.

Damn you , lymphocytes….

Categories: Life | Tags: , , , , , , , , , , , , , , , , , , , , , | 3 Comments

Intubation #5

I want to blame someone, anyone.

The Chaperone for not paying enough attention, the Fellow for not giving enough sedation meds, myself for not being diligent enough.  But in the end, I know it was an accident. One minute David was intubated, the next, not so much.

At 9:30 this morning, David’s breathing tube slid right out of his airway. The nurse was on one side of him, I was on the other. He started to wiggle because he wasn’t sedate enough and then he was crying, gasping for a breathe.

After 3 hours of sleep, I was not prepared for this.

Not. Prepared. At. ALL.

Our days have become a slap-stick comedy of misfortune. A Three Stooges short gone horribly wrong. I’m willing to take a frying pan to the head if we could just get to a better place. Just a little bit better? Please??  I’m not greedy.

So, Capt Snuggles is extubated. The sedation meds have to be stopped. The decision is whether to re-intubate or leave him on the high flow nasal cannula. The decision is shadowed by his extreme pain involvement. And the fact that he needs his wounds re-dressed, which will inevitably cause him more pain.

They tried. They tried to dress his wounds without heavy sedation. If I could scratch my eyes out to eliminate the image of his pain, I would. I have no words ( at least none I want to share with you, dear reader..) for the events of today.

Suffice to say, at the end of the day, dear Capt. Snuggles is intubated. Heavily sedated and wrapped from stem to stern with thick, soft bandages.

If only life was as simple as a pie in the face.

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