Diarrhea = No Fun

To make a long story kind of short, Emma has had fairly consistent diarrhea for the past couple of weeks.  We were all unsure of the source, and to be honest, are still unsure.  However, after her failed extubation attempt the other day, Emma's heart started to experience some arrhythmias called PACs.  Now you or I can experience PACs from time to time and never know it, but Emma is hooked to a monitor so we know when anything and everything happens.  The doctors thought that the PACs were due to her stressful day/becoming acidotic and they were only happening every once in a awhile, so they were not concerned.  This morning around five Emma had a run of what appeared to be a-tach or atrial tachycardia.  A-tach are runs of fast heart rate.  Emma had several runs of these this morning.  The only thing they can attribute this to is the fact that the medicine she is on to control these is not being absorbed due to the diarrhea.  They contacted the electrophysiologist who wanted her to be switched to the IV form of the medication until her diarrhea is controlled.  Please pray her heart goes back into rhythm soon.  This is very scary for us.

Mommy Sarah

Oh the Joys of Extubation :-(

Well for those of you that have not heard, Emma was extubated this morning.  This means that they attempted to take the breathing tube out and see how she would do.  Well, sadly, she did not do well.  She only stayed off the vent a little while before it was decided to have to reintubate (put the breathing tube) back in.  Everything was pointing towards her being able to come off of the ventilator, but it is not her time to.  Please keep her in your prayers.  Pray that she will be able to strengthen her muscles used for breathing, that her lungs will function well, that we can get her back to a place quickly to try again, and that the next time she is extubated, she will do amazing!  Also, continue to pray for her heart as this was hard on it today.  Pray for Sarah and I as well.  It is so tough because we want her to be off the ventilator so so so bad!  Thank you all for the support.  May God bless each and every one of you!

In Him,
Daddy Scott

We need some Beano! :)

Emma has had several good days.  We are actually working hard to get her off of the vent this week.  They did pressure support trials yesterday and today.  She did well on the trials yesterday, and if she does well today, they will extubate tomorrow morning.  Emma has been A LOT more awake these last few days and that can cause problems.  Emma is very aware of the tube down her throat and gags on it frequently.  Gagging leads to throw up, which leads to a subsequent drop in heart rate and sats for a brief moment?  Needless to say, we are very ready for the tube to come out so she cannot be so sensitive to movement. 

Also, Emma has kidney stones.  There are several theories behind why she has developed these stones.  One of the theories is that due to the amount of lasix, a diuretic, they had to use, stones formed.  Other theories have more to do with her actual kidney functioning. Please pray that these stones do not move or cause her any problems.   

As Emma’s doctor so eloquently put it today, Emma needs to either burp or fart…lol.  Emma has a lot of gas build up in her intestines that NEEDS to come out.  If it does not come out and she is still as irritable then the vent can not come out tomorrow even if she is ready! 

Specific Prayer Requests:

We ask that you all remember our precious little friends in prayer: Katie, Taylor, Ella, Lyric, and Haven.  They are all on a heart journey of their own. Remember their parents as well as they support their precious little ones.

Some specific prayer requests:

1)  Pray that these pressure support trials will go well and that Emma will be able to come off of the vent.

2)  Pray that her kidneys continue to function well.

3)  Pray for her to continue to be in a good mood and not become easily irritated.

4)  Pray for Scott and I to have continued peace and strength for the road ahead.

5)  Pray for the nurses and doctors and all the other health care professionals that take care of Emma!  May they be blessed because of their efforts!

6) Pray that Emma can pass gas!

Thanks again to everyone that continues to support us and Emma with thoughts and prayers!  You do not how amazing that truly is to us!!!

God is good, all the time!

Mommy Sarah 

We're Still Here :-)

So sorry that we haven't updated the blog in awhile.  I am having to go back and forth from Texas to Oklahoma for my final rotation in pharmacy school and haven't had time to get on and update like I usually do.  Also, that means that when I am gone, Sarah has less help here and therefore less time to update.  So, needless to say, we apologize to all of you that have been checking for an update!

Emma is doing good.  We are on track to try and start pressure support trials on the ventilator to see if we can come off of the ventilator (for good!) this week sometime.  They did a recent echocardiogram of her heart and, as one doctors put it, "it couldn't look any better than that."  God is good!  Other than those two things, the issue we have been having, as of late, is an increasing BUN.  This stands for Blood Urea Nitrogen.  It can rise for a number of reasons such as: dehydration, bleeding, and excessive protein.  The doctors are still trying to isolate what is causing this steady increase.  So we will see after the initial tests come back as to what may be causing this problem.

Emma has been smiling at Sarah and me occasionally.  I think that it is a legitimate smile when Sarah smiles at her, but it may just be gas when she looks at me....  The jury is still out! ;-)  She has been a little more irritated today but that is probably because we had to hold one of her sedation medications yesterday, which can cause you to go into a semi-withdrawl period.  She is better tonight though now that the medication is back on board.

We ask that you all remember our precious little friends in prayer: Katie, Taylor, Ella, Lyric, and Haven.  They are all on a heart journey of their own. Remember their parents as well as they support their precious little ones.

Some specific prayer requests:
1)  Pray that these pressure support trials will go well and that Emma will be able to come off of the vent.
2)  Pray that this situation with the BUN will be fixed.
3)  Pray for her to continue to be in a good mood and not become easily irritated.
4)  Pray for Sarah and I to have continued peace and strength for the road ahead.
5)  Pray for the nurses and doctors and all the other health care professionals that take care of Emma!  May they be blessed because of their efforts!

Thanks again to everyone that continues to support us and Emma with thoughts and prayers!  You do not how amazing that truly is to us!!!

To God be the glory!  God is good, all the time!

In Him,
Daddy Scott

Cherished Moments

Happy Birthday to Me!!!!

The Dreaded Ventilator

So, as many of you follow our blog, you know the horror stories of Emma and her bouts with being extubated and then reintubated.  Well, tonight as I type this, I am not going to share a horror story but rather an update about her current condition, which involves the ventilator.  Right now Emma's heart and nutrition and about everything else are going good, or as good as would be expected.  But her current struggle now has been with sedation and the dreaded ventilator.  As you may recall, we thought Emma would be extubated at the beginning of this week.  Well, we had several set-backs which involved her sedation.  When switching her from IV pain/sedation meds to by mouth pain/sedation meds, she went into a semi-withdrawl period which caused the doctors to up her pain/sedation by mouth medications.  Well these medications are very long acting and so when they did this, she got a little to sedated.  Sedated enough that she was not breathing over the ventilator, which was only giving her 10 breaths a minute.  This caused her to not be getting the oxygen she needed, as well as not exchanging CO2 and oxygen in her lungs like she needed to.  When this happened, they had to increase her ventilator settings by quite a bit to be able to sustain her through this period of over-sedation and what is called respiratory depression.  Over the last couple days, the doctors have been weening her down on these medications, but the effects from the weening will not be seen for days.  Thus, Emma is still quite sedated and not breathing much over the ventilator.  So a week that looked promising for extubation turned into a week of chasing after pain/sedation meds and trying to get them at the appropriate level.  But, each day we are seeing a little bit of change as the drugs start to be eliminated and she starts waking up a little bit more.  So yes, we are still on the ventilator and don't look to be coming off of the ventilator any time soon.  I guess you could look at it as a set-back, or I guess you look at is as another part of this journey we are on.  Other than this, Emma is doing well.  She is going to be taken out of her Giraffe Omnibed ("grow-box") tomorrow and put in a crib.  This will be neat as we will be able to decorate and make her crib a fun environment for her.  We will also be able to touch, sing, talk, take pictures, etc. of her a lot more, which is great!  Some more good news, they tell Sarah she will be able to hold her again on her birthday which is tomorrow!!!!!!  She is super excited!  So, there is an update on our sweet little child.  As always, we are so thankful for all of the thoughts, kind words, encouragement, and prayers that all of you give us and Emma each and every day!  God bless you all!
I also want everyone to be praying for Emma's sweet little friend Ella.  Amy and Jon posted on their blog that Ella was having some problems with oxygen saturation and possibly her shunt.  Please keep this family in your prayers as they go through this scary time! 

Some specific prayer requests:
1)  Pray for Emma to become less sedated and be able to breath like she needs to to maintain appropriate sats and blood gases.
2)  Pray for her heart to continue to function great!
3)  Pray for the doctors, nurses, respiratory therapists, etc.  that take care of Miss Emma.  God bless them and their efforts!
4)  Pray for Emma to tolerate being out of her "grow-box" and to keep growing more and more each day.  We thank God that she is up to 7 lbs and 3 oz!!!!!!!!!!!!!!!!! :-)
5)  Pray for Sarah and I.  That we will continue to have the strength and courage that only comes from God!

As always, God is good, all the time.  And all the time, God is good!

Thank you all again for remembering us in prayer and for all of your thoughts and encouraging words.  It truly means so much to us, you have no idea!  God bless all of you!

Daddy Scott