Disorganized Breathing

I dislike this Fellow. He’s cocky and arrogant. He does not have a rapport with the patients, or the nurses, for that matter. He walked into our room, exclaiming “Whoa!”, in that damn that boy looks bad kind of voice. Not the voice you want to hear in reference to your own child. Maybe I am overly sensitive. Maybe he just rubs me the wrong way. But he is the one I have to deal with, the one who will intubate Capt Snuggles, yet again….

I knew when I woke up, that David would be intubated before the day was done. It wasn’t that he was breathing 100 times a minute, not so much, anyway. That seems to be the norm for him these days. It was the way he was breathing, like his whole body was gasping for air.  The Fellow called it Disorganized Breathing, he was inhaling twice, exhaling once. Inhaling once, exhaling twice. It was very hard to watch him struggle, not knowing the cause of his erratic behaviour.

The whole day was rough. He needed a blood transfusion. He needed the remaining dose of campath. He needed Cidofovir (treats Adenovirus). He needed a fluid bolus before and after the Cidofovir. All this in addition to his daily regimen of  5 different IV antibiotics, steroids, Protonix (protects the stomach from ulcers), IV nutrition, pain meds and fluids. Factor in the frequent blood draws and his dance card was full, full, full. Take a number and wait your turn. It was going to be a long day.

He was in such  obvious pain from all the open blisters now covering his little body. And no matter how much pain medication they threw at him, it wasn’t enough.  Somehow we got through the day. But by evening, he had spiked a fever, his blood pressure was sky-high, his heart rate low. While his blood work indicated he was processing oxygen adequately, it was obvious by looking at him that he was struggling.

We encountered a set back with his central line, somehow the hub came loose and was leaking. It needed to be repaired. This meant for about 6 hours he was without one of his access points. IV nutrition was turned off. The line needed to fixed and quickly. The risk of infection from a hole in the line is incredibly high. An infection his body is no longer able to fight.

The decision to intubate was made around 11pm. Ready, set, GO! Such a flurry of activity~ 3 doctors, 3 nurses, 2 respiratory therapists and a slew of helpers in the hall ready to get items as needed. It’s a bit like a sci-fi movie, all the scientists gowned up – ready to dissect the alien.

The Fellow does the actual intubation, the Resident assists. The 2nd Fellow supervised. One Nurse charts, one Nurse pushes meds, the other Nurse does, well,  everything else. The RT’s keep him breathing.

Copyright @Dan Piraro 2009

Fortunately, the Fellow didn’t have any trouble with the actual intubation. It was a struggle to get the ‘tube’ taped in place, though – both of his cheeks had multiple blisters and the skin had peeled away where the existing tape had been removed.

The RT and the skin-care nurse brain-stormed and came up with a way to dress the open wounds and still fasten the breathing tube in place. All the while, the 2nd RT kept him ‘bagged’. They couldn’t hook him to the ventilator until they figured out how to secure the tube.

It’s mind-numbing to watch someone squeezing that little bag, manually blowing air into his little lungs. I wanted to scream for everyone to Shut-Up – so the RT could concentrate on what she was doing.

squeeze    release    squeeze    release    squeeze    release    squeeze    release

Now the hard part ~ getting him sedated.  If he’s not fully sedated, he runs the risk of pulling the breathing tube out.  Sedation is an on-going event. He can require adjustments to the med doses on an almost hourly basis for days to come.

After the intubation, his blood pressure dropped, requiring epinephrine to stabilize, his body temperature went down to 93.4, his heart rate was elevated. His electrolytes, his potassium in particular, were off kilter probably because the TPN had been stopped. He needed another blood transfusion, his platelets dropped to 30.

I say ‘after’ only because, time-wise it was after. Intubation would have become an emergent need if they had waited much longer to do so. Some of the reactions were related to the campath, some to the sedation meds, some to his overall diminished state.

The good in all this is that his pain is better managed. They were able to dress all of his open wounds, essentially treating him as if he were a burn patient. They inserted an arterial line to constantly monitor his blood pressure and provide another access for blood draws.

It feels like we’re back to the beginning, though. This roller coaster ride isn’t over yet.

I’ve always hated roller coasters.

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13 thoughts on “Disorganized Breathing

  1. I have been reading your blog for a short time.. Every time I do I feel that I should leave a comment, yet I really don’t have the words.. I wish I had some words of comfort for you, but I can’t even begin to imagine what you continue to go through..
    I don’t know if it helps, but you are in my thoughts, and I pray for you and your son daily..

  2. Jennifer Canter Vogland

    Amy, I continue to read and am so sorry that you are going through such a difficult and scary time with your son. Thank you for having the strength to continue to share your life with us and please know that we are all listening and thinking of you.

  3. mooney=mc2

    okay lighter note, where on EARTH did you find that cartoon? Ha! that could not have been more perfect for your post!

    Serious note, I am gobsmacked at what you are trying to handle at the hospital right now. I have heard of GVHD but in regards to EB kids going through stem cell transplants and I understand it to be incredibly horrible. Poor Captain Snuggles, so unfair.

    I am going to rally my prayer warriors for you and the Captain.
    Thank you for being such a support to ME during a time when you should be saving all of your energy for your little man.

    Stay strong. (as if I have to tell you that! comes naturally for you!)

  4. Ugh – my heart is breaking for you guys. I am praying that he can heal quickly and that you may filled with all the strength you need to support your little one.

  5. Amy – my name is also Amy. And, I also have a son with a UCD. I was led to your site by Mindy. I am in tears reading your blog. As, my memories of Mitchell being a “wonderfully sleeping baby” came crashing back to me. He was not sleeping – he was dying. The reality of those memories are almost too much to bear sometimes. Mitchell was born in 2008 – and thankfully, his UCD was detected on the newborn screening test. It was not a moment too soon. At 7 days old – he probably would not have survived many more days – or even hours.

    I am overwhelmed by your resilience and strength for your boys. What a truly amazing and remarkable woman and mother you are! My thoughts and prayers are with you. I will continue to read your blog and pray for you daily!

    Thank you for sharing your journey with us and for helping raise awareness regarding UCD and liver transplants for our children.

  6. Sairah

    Amy,

    I have been reading your blog, and I just wanted to write to let you know that you and Captian Snuggles are in my thoughts and prayers! You guys have had a tough ride, but I hope and pray that this hardship too shall ease! Stay strong Mama, you are doing an amazing job!

    On another note my son was also diagnosed with Citrullinemia at 4 days old, and we were just transplanted this past May. He has been doing well, and I hope that Captain Snuggles starts feeling better soon!

    -Sairah

  7. Hi,
    Thank you for sharing your story. My prayers are with you and your family.

  8. Thinking of you and your little guy, I just can’t imagine all that you are going through right now. I keeping hoping that the rough days are behind you and you will soon post about how much things are improving. Sending you lots of strength and hugs.

  9. I certainly wasnt expecting to read something like this today, but I’m glad I did. Not only is the topic of your blog something I’ve not seen before in the blogosphere, but your writing really has left me speechless. I think I have to come back and read a few more times before I can add something meaningful to the conversation…
    I’m really glad I found you! I’m now following you through The Fun Weekend Blog Hop. I hope you’ll do the same! You can find me @ http://sofiasideas.com/

    Sofia’s Ideas

  10. james hillis

    My darling wife take time to take a breath. Captain will get better in time he has you there with him counting his every breath and counting every heart beat. I know you feel his pain in your heart and I feel it for both of you. Try to look past the pain and see how it will be when you get home and he is running around making you crazy just like the other ones. We all miss you and want you and captain at home with us, everyday is a little harder without you two here. You are both in my thoughts all the time and sometimes it gest real hard not to just break down, but I don’t have time. So you tell him I said to get better, he has been there long enough I need to hold him,too. I LOVE YOU BOTH WITH ALL MY HEART.

  11. Tonya Fisher

    My dear friend,
    Amy after reading this, I am crying like a baby. My heart sinks for you daily as I know how you feel. Having Isaiah (although different circumstances) and all his medical concerns doesn’t hold a candle to Capt. Snuggles. As I read your post about the burns, I can relate because I watched my Dad (just 2 yrs. ago) deal with 3rd degree burns over 51% of his body for almost 3 months. I was with him at Cincinnati University hospital every day watching him suffer. You can’t describe in words how this feels to see ANYONE you love so much suffer like this. I am understanding everything you are saying from 2 different experiences in my life…#1 my Dad and his death, and #2, my 1 yr. old son. I am so grateful hat we met there at the hospital during Isaiah’s surgery-and happy I can be here on the sidelines to pray and cheer you on. Here I was, wanting to inspire you..help you along…and here you are inspiring me. I understand you, your husband and children’s pain/journey. God laid you and your family on my heart the moment I met you. I am here in prayer and in spirit for you. I can’t physically be there all the time, but I think all a lot when God tells me to pray, I pray. I can say I love you because God has led me to do so. I miss our lunches there at the hospital. I know your are staying strong, but it is okay to cry and fall because although you are strong, you are human. Take comfort and strength in HIM because as you know, He will always give you the strength you don’t have on your own. Lots of hugs.
    Your friend,
    Tonya

  12. I want to say thank you to all of you for your kind words and uplifting comments. Today has been beyond difficult and I am comforted by so many of your comments. Thank you for taking the time out of your day to follow our journey. I usually respond to each of you individually,tonite, exhaustion gets the better of me. Peace & Hugs~Amy

  13. Oooooh man, Amy, I have spent the last hour reading the boys stories, and you have been through it haven’t you!? You and your whole family, cuz, lets be honest, it just doesn’t effect us Mom’s and the affected little ones, it’s the whole family and it ripples out from there. I really do feel your pain… I have two boys with genetic issues. My 8 year old has a rare genetic disorder, my 3 year … well… seriously, his list of diagnosis-es is long.. all I can do is send my love to all of you and offer a shoulder if you ever need one. {{HUGS}}

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