This was the first time in the past 5+ months that I've had problem coming up with something to write about, so I just sat here for about ten minutes just completely blank. I guess you can call it a really bad case of writer's block. The funny thing is, an email came across the bottom of the screen from someone who was asking what Kayleigh needed to accomplish before she could come home, so she could pray for those things. Ha - Thanks!
Well, Kayleigh first needs to come back down on her oxygen an off the nitric oxide. She is currently at 4 liters of flow and her oxygen is set at around 40%. It needs to be .1 liters of flow and typically they will leave the percentage of oxygen at 100% since the flow won't really supply that amount of oxygen to Kayleigh anyways.
Second, Kayleigh needs to get her feedings to perfection. She is not eating well at all from her bottles, but she IS tolerating all the feeds when gavaged (fed through her tube). She is currently at 25-30 ml's every three hours, but she only took 5ml's by bottle for me tonight and all of that was practically forced. We can't figure out if her throat hurts or she just needs to improve her suck, breath and swallow again. I remember there was a time she was finishing 50ml's in less than 15 minutes, so I know she can do it but we don't know why she isn't.
Lastly, her lung pressures need to come down to a safe number. The last echo, which was yesterday, showed that her pressures were elevated in to the 60's again. That is not what we want to see, but it isn't horrible either. At her worst, she was in the high 70's, low 80's. Normal children's pressures are in the teens. We don't expect Kayleigh to be in the normal zone, but we would like to see them in a zone that prohibits her to spiral out of control with the smallest illness/infection, like the UTI.
All in all, the doctors are concerned about her pressures but are happy to see they are still reactive. If they were fixed and at this level, we would have a serious problem. So the main thing to pray for is that her pressures improve before they become fixed. The problem with that is no one is sure what will help improve those pressures because this is not a common occurrence amongst preemies. Kayleigh is unique and she has proven that so far, but in the past several weeks since her heart surgery, her pulmonary hypertension track record is not improving yet.
So please pray for those three things! Yes we would like for her to come home soon, but if it takes a long time for all of these issues to be fixed, then we would rather that happen than for her to come home unhealthy.
Kayleigh had a pretty good day today. She did drop some weight, which doesn't seem right. She weighed in at 4lbs - 3oz, but we will see how tomorrow weight is to see if it was something to worry about. She was still cranky today, but not as much as the day before. I am hoping that what ever is causing her to be cranky is going away and she can get back to her normal self. She slept pretty good on my chest tonight, but would wake up every now and then as if something was nagging her and she felt uncomfortable. I had to pat her back constantly or she would wake up and start crying. She definitely looks more like herself though and she was a little more alert tonight while we were doing her cares. Her scar from her heart surgery is looking great!
Thank you all so much for your support and prayers through this. Hopefully his roller coaster will come to an end one day, but let's just pray for a healthy Kayleigh. That's all!
The Freemans :)