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Thursday, September 9, 2010

I'm going for a walk.

Yep, I am going for a walk before I become "that woman" or "that mom". Today, I am extremely frustrated and have lost the ability to filter and be nice (to doctors). We have no answers, and no indication of what to do or where to go. The doctors say that they think it's just an extreme presentation of  Enteroviral Spinal Meningitis, and that it will just take time for Nolen to improve.

And that is not what infurates me.

What frustrates me to no end (and led to that very emotional post earlier on here) is that I keep seeing the SAME cycle of Nolen's care. After posting that very emotional post and starting a journal to document his decline, the doctors at that hospital FINALLY saw what I saw, FINALLY witnessed his fall back to being listless and non-responsive. They got it, and sent me here. And now, once again these doctors just don't get it.

They are going to try and determine if it is the oxygen Nolen needs or the airflow by putting him on room air at 1/2 liter. A liter is the amount of air being pushed in, the oxygen% is the amount of that air being pushed in that is oxygen. So, they are taking away his oxygen and putting him on room air.

This has been tried once before when Nolen was alert and presenting well with occasional desats (Sunday Night). After about 7 hours of being on room air, Nolen began to desat more frequently. Prior to that he was holding his own at 97 pulse ox. Then instead of his average being at 97, it went to 94, and then it was frequent desats (a low pulse ox means low oxygen saturation in the blood) so that the nurse had to move him up to 50% oxygen at 1 liter. Even then he struggled to move up to 100 pulse ox. Then next day was spent weaning him down to 35% oxygen at 1 liter...and he's been there until we arrived at CHOPS where they dropped him down to 1/2 liter at 35% oxygen. It was at this time that Nolen became the WORST that he has been...because he was fighting so hard to breath properly, to keep his heart rate normal, to keep his body temp up. (The doctors at the 2nd hospital had also blamed his low body temp on him being exposed during testing until it lasted for more than 7 hours, they also blamed his increasing unresponsiveness on his tiredness from testing.)

Now, here we are again, with Nolen being EXTREMELY lethargic, not crying/moaning/making noises (other than gasping) with more signs of resperatory issues (high respiratory rates, high heart rates and even more low heartrates) trying it again because you think he needs the stimulation of airflow and NOT the oxygen, which is what the doctor at the previous hospital thought and was proved WRONG! SERIOUSLY!?!?!?! Do we have to repeat what we've already ruled out as a possibility?

You are telling me that my son is tired from fighting this virus, that there is nothing you can do to help him other than to treat the symptoms and provide supportive care. That he just needs time. So what do you do? You take away his breathing support?

**Yes, I understand that if you flood the body with oxygen it is actually counterproductive because oxygen causes the veins of your body to constrict, thus restricting blood flow and interfering with the bodies ability to properly oxygenate. Oxygen supplementation requires a precarious balance of the appropriate amount at the right rate. I also know that at some point he is going to be off the support altogether and I would love for that to be today, but given his somewhat rough night and his continued lack of responsiveness due to "sedation for his MRI" you try it anyways**

I think that other than not having answers...which is a  frustration I can totally cope with. I find myself being unable to cope with watching the same things be done or said to excuse away his behaviors. For example, today his decrease in responsiveness from yesterday is being blamed on his sedation...whereas, before we landed here his decrease in responsiveness was being blamed on the procedures preformed the day before until it was SO BAD that we were transferred. Or, trying to wean him off the oxygen all together and failing (happened at both hospitals), or trying to just do increased stimulation with room air (which has been done at both hospitals).

Instead of repeating what others have done and failed to do successfully, lets try something new!

**never got my walk, vented via blog instead and now speech therapy is here to try and get Nolen to latch and nurse...wish us luck!**

7 comments:

Kim said...

Maddening... there is so little I can say. I'm glad Daddy is home. Keep fighting - they'll figure this out.

welcome to our wonderland said...

keep fighting and yelling till they hear you! MOMS DO KNOW BEST (daddies too)!

I hope he latches on and nurses a long time.

Its frustrating for me and I'm you or the mom in this situation. I'm with you in spirit and vent away we are here for you!

prayers being said all over the net and my town for baby nolen, I think we need to also pray the doctors get off their high horse and get Nolen better!!!!

welcome to our wonderland said...

meant to say i'm not your or the mom sorry syd is on my lap trying to type too

Jeffrey said...

Sis, I wanted to let you know that there is further reason why oxygen is precarious thing. In the lungs the aveoli and the capalaries exchange oxygen, while this is occuring the nitrogen in normal air keeps the aveoli open so that it does not collapse. When there is less nitrogen to keep the aveoli open then they began to accumulate mucus in them and it becomes even harder for blood to become oxygenated. While I know this is little comfort right now I just wanted you to be as informed as possible, and it is still ridiculous considering he is only on 40% not 100% thus alleviating much of the risk of aveoli failure. Love you, we are all praying for you.

Paul, Angie and Tyler said...

Girl you don't have to be nice or "filter" when it comes to the care of your child. Little Nolen doesn't have a voice yet so that's you! You be his advocate and speak up!! You are doing such an amazing job! Keep it up Brandie! God is giving you the strength even if you feel weak!

Blonde Ambitions said...

I am so very sorry that you and your family are dealing with this.
Sending lots of good well wishes to your beautiful son.

Angela L said...

Your frustrations are similar to ours with CHOP that lead to Scott yelling swear words in a CHOP lobby full of children. What I know now, that I wish I knew then, is that I (and you) am the mother and has a right to say 'no'. I felt like I had to do whatever test and instruction that they said because they were the doctors. Long story short, Scott blew up (I did too, but in my own way), we finally refused some unneccessary tests and instructions that they tried forcing, and we were all happy in the end. Use your God-given motherly judgement, it's stronger than any medical opinion.