July 25, 2016

War Has Been Waged

For the past week, David and I have been at war with some of the hospital staff over quite a few things. And I am so tired of this hospital. The level of inconsistency and lack of communication has been astounding and incredibly frustrating.

Now before I go on, let me first point out that the issues we have been having have not been with nurses. NICU nurses are angels, and have been on our side. We've even had some nurses stand up to doctors with us. The problems we are having are coming from doctors and, more than anything else, nurse practitioners.

They don't take notes. They don't write things down. They don't communicate with each other. They walk in, see that his CO2 level is currently at 63, freak out and want to change all of his vent settings and put him on more respiratory support. Then when I ask why and say, "No, that's normal for him..."; only then do they look at his chart and see that it's indeed a normal number for him, and then waltz out all puffed-up and besides themselves. David and I have time and time again voiced our concerns over how bad the communication is - but nothing has been resolved. It has gotten bad enough that David and I feel like we've had to babysit his medical staff. And today because of this, I lost my son for a few minutes.

I apologize if this post isn't as well-thought out or written this time around. I am just so beside-myself angry about today, that I just need a way to get it all out of my system and vent for a minute.

I've come to loathe quite a few NP's. Don't mistake me, we have also had many incredible NPs. And when they are willing to listen and do their job, they can be a viable asset and advocate for you. But when I hear some names assigned to Aiden for the day, my heart will sink. We have had many situations in the past where we have had to fight an NP for something that Aiden needs. And today, that went way too far.

All day today Aiden has been in a never-ending cycle of bronchial spasm attacks. The tidal volume that the ventilator is set to giving him is 35, and he was only able to achieve a tidal volume between 9-12. This means he was only able to achieve small little breaths, almost as if he had been running around for some time and unable to catch his breath. His heart rate was consistently high, and he was working very hard to breath. He was covered in sweat, he was hot and exhausted - and we were trying everything.

We gave him multiple Levalbuterol puffs, and that only helped him calm down for a short period of time. We gave him Tylenol to see if he was in pain and keeping him in this state, and it didn't even phase him. So we gave him every other PRN medicine he had available, and he still wouldn't calm. We tried suctioning him constantly, but nothing significant would come out. We re-placed his trach, we wiped him down with cool water, we sat and gave him manual breaths on the machine - and still nothing was helping him calm and reach his tidal volumes. His oxygen was turned up to 100%, but he was only satting at around 75.

He was completely panicked and upset all day. His nurse, RT and I sat by him, watched his ventilator, and tried every thing we could think of. And nothing helped.

It got bad enough that the RT thought it would be best to do an xray and try to get a picture as to what was happening. So the nurse called our NP back to look at him. She looked at Aiden, looked at his ventilator and said, "I just think he needs to sleep. Try to get him to sleep, and see if that helps first.", and walked off without batting an eye.

As she walked away, I mentioned to his RT that in the past, we have increased his tidal volumes temporarily to help him catch up and it worked. The RT agreed that was a good place to start, and also wanted to push the xray again. So he followed the NP out of the room to talk to her further about that.

The RT came back a few minutes later to announce that the NP still didn't feel the need to xray, and would only approve him increasing the tidal volume from 35 to 38. Now that's not really a significant enough increase to do anything for him. And in the past, we would always increase his tidal volume to 50 in these situations. The RT said he brought this up to her, and pointed it out in his chart, but she still would only agree on increasing it to 38.

I was about to have my own say in this and demand an x-ray and increase to 50, but Aiden got into a coughing fit and suddenly plummeted.

We did everything, manual breaths, a quick suction - but after an entire day of fighting to breathe, his little body couldn't handle it anymore and he flat lined.

I was holding his hands, rubbing his hair, trying to calm him down, and his stats just kept dropping until his heart rate and oxygen saturation was at 0.

For a few brief moments, he was completely lifeless. No matter how much I have desperately tried to erase the image of him like that from my mind, it's stuck sitting in there. I called out his name and shook him as the nurse and RT pushed me out of the way to bring him back. It was only maybe a half minute he was gone - but he was gone. His body was completely gray and limp, his eyes open and lifeless.

That half minute felt like an eternity. I thought I lost him for good. Did his body give up? Just like that, after a straight three weeks of doing great, was he gone for good?

When he finally gasped and came back, I realized the room was full of his medical team. I pushed my way back to his side and he looked at me. I grasped his hand, and his little fingers weakly held my finger.

His doctor began examining him and assessing the situation. As the nurse and RT went over the day's events, the doctor snapped her head around to the NP and asked, "Why is this the first I'm hearing about this?"

The doctor immediately upped his tidal volume to 50, called for an xray, told the nurse to give him a Pentobar to knock him out and allow his body to recover and rest, and asked the RT to give him yet another double-dose of Levalbuterol. As the doctor ordered each of these things, she turned to the NP and asked, "Why didn't you up his tidal volume? Why didn't we get an xray earlier today? Why didn't you tell me this is what he was doing?" And the NP just stood there in the background, looking dumbfounded and worthless.

I can't seem to calm the emotions I have tonight because of this. Why did my child have to die for this particular NP to do anything for him? Why should it even be a battle anyway!? Why does Aiden have to go through this?

And I can't get the image of his gray, limp, lifeless body out of my mind. David switched me out at the hospital for the evening, and I took the girls home. Once they got into bed I broke down and bawled. The fact that this happened today is unacceptable. I am so tired of having to continually deal with these type of situations. After today a part of me feels like I can't handle it anymore. Almost like I need a break from that hospital room before I completely break down myself - but how could I possibly do that? I no longer feel like I can trust his entire medical staff to give him what he needs when he needs it. I feel like I have to be constantly monitoring and babysitting people. I don't feel like I'm listened to or considered a valid person in terms of his care. Medical personnel are so quick to think they know better than everyone else. But what did I ask for today for Aiden? An xray, and increased tidal volume temporarily to help him out. I shouldn't have to ask, because it's in his chart that that's what he needs. And I shouldn't be treated like I don't know what he needs either. After all, as soon as the doctor was FINALLY notified, what did she do? Increase the tidal volume, and get an xray.

How much longer will my baby have to withstand the torture he's endured before I can finally get him out of that hospital? How much longer can I take this myself? After witnessing him die today because of a stubborn NP that thought she knew better, I don't know how any of us are going to get through this.

And I never want to watch my son flat line again. I have a feeling that memory is going to haunt me for the rest of my life.


  1. Corissa, I am the grandmother to a little fighter (Mason... Now 2 1/2yrs old) who has been through this valley. I think his mother, my daughter-in-law, contacted you to send some encouragement at some point recently.

    I am sitting here reliving our experience as I read your post. We spent months going around and around with the medical staff, the lack of continuity, the low expectations for my grandson's life, etc. One thing that we found with Mason was that every time he was having a bad day and struggling it was ALWAYS something simple. Never underestimate the importance of the trach ties being tight enough... It proved to be the culprit many times with Mason on days like you have just described.

    I would be glad to correspond with you if you would like the encouragement. If so, you can email me at

    We developed a few methods of improving communication and dealing with the continuity issue during Mason's time in the hospital. I would be happy to share those with you if you want to try some of them. Either way, you will have our prayers and support!

    Praying for light on your darkest days. Praying for strength for your little warrior. Praying that God's hand will be on you all as you travel this road. ((Hugs)) from Tennessee

  2. Oh you guys I'm so sorry. This life is so beautiful but so so hard. I can still recall the image of Norah's gray lifeless body, too. I'm pretty sure that could never be erased from my mind.

    It was amazing meeting Aiden and David today. I gave him an idea about asking Dr Meier to see if a longer custom trach could help ventilate him better- just like it did for Norah (and now since my suggestion a couple of other SEDc kids too). Definitely worth a try to ask him to look. I hope you and I can connect tomorrow before we are sent home. Lots and lots of love and strength to you guys! Please let me know if I can ever do anything or help in any way. Even if it's just an understanding shoulder to cry on. Xo

  3. I agree with Shauna about the trach length! She and another trach mom both helped us learn that we needed to advocate for a longer custom trach for my grandson. Even after that he was still very positional and his trach ties being too loose would always wreak havoc with him. You just have to find his sweet spot... Once you do, it makes a world of difference. Hang in there!

  4. First off let me introduce myself. I'm Jennifer Van Berckelaer I'm SEDC and my husband is average. Two years ago we had a beautiful baby girl who unfortunately took after my diagnosis. After having to her at 30 weeks and with all the respiratory problems we are born worth she fought and fought and we finally after two and half months we brought her home. Maybe it was too soon tho. Tho no one could tell Drs nurses and us she quickly became sick. What do you know (we have in common) I rushed her to the hospital and she was diagnosed with rhino virus and a form of the entero virus (it was going around that summer). They admitted her to the PIcU. What a different world. I get your frustration when I comes to lack of knowledge and lack of wanting to "know". I feel like they were not doing everything they could like the NICU did. After being there for four horrible days and nights she finally started to look better. Her color was coming back and she seem to not be trying so hard to breath. Mind you she was never trached til that day! All of a sudden all sats dropped bam 0. I too was pushed out of her room and they said we have to intebate her. The thing about intebating Olivia was not only the tiny airway but it was deviated and she had pier robain. It was in her charts to only use the new born tube (micro optic one). After 40 mins of not knowing how she was doing I hear an effin nurse come flying out of her room requesting the special tube! 40 mins! Needless to say it then became an emergency trache surgery and in the end they lost her. I lost my lil girl all due to medical negligence and straight stupidity. I will never forget that day I will never forget what I heard and I feel you when you say you will never forget the grayness lifeless bodies of our sweet children. In the NICU we had to experience just that multiple times. The worst nights of my life and then on that day the worst possible day of my life! I am so sorry this happen to you, your family and Aiden. But please please be thankful after reading my story that he is still here. He left for a second. But he did not die. He's here. Try to be strong. He needs you. I will always feel like it was my fault for not saying something before being rushed out of her room. I will always have that guilt. So if you have something to say to that hospital or any staff memembers (as I did so many times in the NICU) then say it girl!!! Who cares if there is altercations. That's your child. I think by the time I got to the PIcU after being home with her and (obviously it was 24 hours to care for her) I was exhausted and was flat out just tired and didn't know what else to do. Never thought I would had to bring her back so quick. Our prayers are with you all. #aidenstrong