Another stable day

>> Friday, July 3, 2009

We like stable, but would prefer progress and still don't have much really. Kamryn rested most of the day and was a lot less agitated. That's good to see, but her vent pressure and rate are still higher than we have seen in previous days. They did lower the rate tonight to see how she would react and once again her CO2 went back up. I talked to the doctor the other day about her being incredibly sensitive to rate changes, even when they are small and wondered if we should focus more on pressure (PIP). He felt rate was a better option right now. This is the 3rd time we have seen the rate change push her numbers higher so I plan on asking again tomorrow if we can focus more on weaning pressure than the rate. I'm not a doctor, but I feel like she is telling us what she needs. We'll see how that goes tomorrow.

She still seems to be tolerating her feeds at 1 ml/hr. To put this in perspective, this equates to .8 ounces over a 24 hour period which is not much. Sunday we plan to move this to 2 ml/hr and continue to build very slowly.

She definitely has less swelling today in the face which is great to see. The only drawback is that her body also loses fluid and you can see her chest really working hard on the vent when she gets agitated.

Kamryn has another primary nurse, Tamara, who has been so wonderful to Kamryn and us. She is incredibly thoughtful and is so attentive to every need Kamryn has. We just feel so confident having her on the team. We have been so fortunate to have 4 incredible nurses sign up to care for our little girl whenever they work.

Based on what we have seen, I really am starting to believe that this road to getting off the vent is going to be long. My gut tells me we have another month at least on the vent if not longer. That kills me. I know this is her life line, but it is also a monster that beats on her fragile lungs and no one knows the extent of permanent damage that is being inflicted on them. It's a necessary evil, but it's difficult to not think about the long term consequences.

We had another visit today from our Sunday School class. Melissa and her mom brought us a great dinner and gas money :) They are truly wonderful people and so kind. We have been truly blessed by our friends and family!

That's about it for tonight. We will be up with Kamryn all day tomorrow and will let you know how she is doing tomorrow night.



Tracy Meats July 4, 2009 at 12:06 PM  

This journey is a long road to healing and you have to take each day as it comes. Some days, there will be no changes in either direction and it is very hard to watch. I wondered at times what I was doing to this little boy, but he just needed time, his time, to heal and get stronger. Ian was on the vent for 29 very long days. Is Kamryn on the oscillating vent or the other one and is she on Nitric Oxide, I may have missed these details?

Praying you soon see progress for your princess. Hope the feeding continues to go well too...this will give her strength too. I loved the family pic of the 3 of you with Kamryn and Stephanie and Hollie reading to her, very precious. Hope Brooke will get to spend some time with her soon too.

Many prayers for your family during this time. Stay strong and positive and I know that is easier said than done, but Kamryn is fighting and we are cheering her on. So wonderful all the amazing poeple helping you out with meals, gas, and taking care of the girls. I am here if you two need to talk.

Thinking of you, Tracy

Timothy and Jenny Rogers July 4, 2009 at 2:04 PM  

Continue to be strong, God is watching over Kamryn and has blessed her with such an amazing medical team.

Being on the vent seems like it will never end. My son Weston CDH survivor was on the ventilator for 2 months, it was so long. But know this soon will pass and you'll be holding her and be amazed at how far she has come.

My family is praying for you all, your daughters are all beautiful. Stay strong and know you are not alone on this journey.


Irvin family July 4, 2009 at 2:26 PM  

I know how you feel about the vent. It seemed like Oakley's biggest fight. I didn't think she was ever coming off of it. The doctors would lower her Oxygen levels but the vent levels would stay the same. She was down to room air oxygen but the vent would be at 48 and they couldn't lower it because her little body couldn't handle it. I would sit with her every day and watch the numbers stay the same and Pray.
Then the day came that she was able to wheen and they wheened every 2 hours or 2 straight days. This started on a Thursday and by Sunday she came off the vent and on Wednesday she was off of Oxygen and on Thursday she was moved to the level B NICU. We came home the following week on Friday.
At times I thought that I was never going to take my princess home because of the vent and then I had to remind myself that she had done awesome kicking the worst part of CDH. I had to be patient and let her tell us when she was ready.
Kamryn and Brooke are beautiful.
Keep praying and she will be home with you soon.
We continue to pray for your family.
Love Sheree

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