David’s 3-Ring Circus

whew.

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.

UGH!

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*

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

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7 thoughts on “David’s 3-Ring Circus

  1. WOW!!! I don’t know what to say. I just spent the last hour reading your blog and my heart goes out to you. You are one strong woman. I pray for your little guy and the rest of your family too.

    Fellow Blog Hopper:)

  2. Luann

    I woke up this morning thinking about Captain Snuggles. Praying for healing and hope…and that they come in abundance.

  3. Patty

    Hi Amy, I found your blog after it was posted on the Ronald McDonald Homes facebook page. Just a little background – my nephew and his wife just dedicated a new Ronald Mcdonald Family Room at Wake Med hospital in Raleigh, NC in memory of their 18 month old daughter who was accidently run over by her father in their driveway. The family room is near and dear to my heart, as I too spent a number of months in the hospital when my first born had several birth defects 22 years ago. Back then, there was no such thing. Anyway, I have read your whole blog now and have begun to pray for you as you come to mind. I remember too well grasping for those threads of hope. Back in the earlier part of your blog you questioned your part in being by your sons side each day. I think you have come to realize that YOU are his best guardian at this time (other than God) in that you are the one who knows what he has been through each and every day since you arrived there. Doctors and nurses aren’t perfect (I had to learn that myself!) and you are there to moniter each and everything that they do. I feel your pain when you talk about getting the arterial line. I well remember the nurses and doctors (we started with residents and worked our way up to the NICU head doctor) trying to get an IV on our son for more than six hours and finally giving up and doing a cut down under surgery (and they even had to do that twice!). Hang in there and keep looking for those threads. I remember well, it was those threads of hope that kept my sanity. My son is now 22 and other than having scars all over his stomach, he is healthy. I will continue to pray for you and Captain Snuggles. I firmly believe our God is in control and is giving you the strength to go through this difficult time. He promises He will not give us more than we can handle and I remember well thinking, okay Lord, I’ve reached my breaking point, but He was faithful to carry me through. I’ll pray for your continued strength as you are David’s best advocate. I hope that you can find rest tonight.
    Patty J.

  4. Yay for healing feet and a good CT scan! I honestly don’t know how you are able to keep up such a strong front. My thoughts are with you as always.

  5. Wow. God bless you and your family. I’m floored and exhausted reading your post and imagining what you are all going through. I admire your strength and a wonderful positive attitude. You will all be in my prayers tonight. I send positive thoughts and hope that your little guy heals.

  6. mercy… my prayers are with you and your family. And may you be continually be blessed and filled with hope.

  7. Catching up — good news on the skin and the CT scan. I’m on to read the latest post now…

    Veronica 🙂

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