Day 49

I apologize again for taking so long to update you on Wyatt's progress.  But, again, it has been a roller coaster of emotions for me lately and sometimes I just don't want to think about it.

As most of you know, they took out the breathing tube on Thursday at noon.  There was much debate on whether they were going to put him on By PAP or on CPAP.  Ultimately, they decided to put him on CPAP because the By PAP mask didn't fit correctly last time, causing too much of a leak to work.  I spent the first two hours never taking my eyes off of his monitor.  For a while, it was perfectly fine.  His oxygen never went below 98, but it seemed he was breathing very quickly.  I was reassured that it was because he had just been extibated and was still in stress over it.  They let me hold him.  This event in and of itself should have been an incredible one.  However, Wyatt was so angry that he kept bowing his back and really thrashing.  After about 10 minutes, the nurses put him back in his bed.  It was determined that he was having withdrawals from his medicine.  He had been on a drip of Versed and something else for most of his time in the PICU.  So, Monday or so of this week, they started to wean him off of those meds to meds that aren't as strong.  To spare you the long story, this withdrawal was because he was over 2 hours late for the Methadone.  Did I mention that during this time his heart rate went up to 204?  Yeah, so lets just suffice it to say that I was freaking out a little.  However, once they gave him his meds, he was perfectly fine.  He relaxed and went to sleep and his stats looked great.  I started thanking God for the healing that was taking place in my angel.  For an hour, I did nothing but thank and praise God. 

The next hour or so I just asked God to take this minute by minute.  I didn't want a giant or drastic change all at once, I just needed him to keep his stats up, minute by minute.  As the day went on, I felt good about the progress Wyatt was making.  I was still nervous, but it was hard not to smile at the thought that my angel was doing such a great job.  As I went to sleep that night, his stats looked great and they had even started to lower his oxygen.

On Friday, the doctors felt good about how things were going.  They decided to try and drop his pressure in hopes of weaning him off of CPAP entirely.  Needless to say, it didn't go well at all.  His respiration rate was faster than ever and his heart rate was up, again.  It was so difficult to see my son in such distress.  I just wanted them to do something.

The doctors were afraid that he had fluid on his lung again.  So, they did another x-ray.  It looked like fluid on the lung, but they also want to do an ultrasound.  The ultrasound showed that the lower part of his lung had collapsed.  But, the good news was that there was no fluid on his lung, so he wouldn't need another chest tube.  Dr. Rhodes said that they were going to try everything to keep from reintibuating him. 

The doctors decided to try some new breathing treatments to reinflate his lung.  Please let me apologize for not knowing the exact name of the treatment, but I can tell you it sounds like a train.  From what I understand, it breaks up the secretions in his lung.  It uses a saline solution to absorb excess fluid as well.   The treatment includes very quick bursts of air  followed by slower bursts.  This goes back and forth for fifteen minutes.  They then deep suction (which he HATES) the secretions out.

The first treatment didn't go the best in the world.  He threw a fit the entire time.  Once it was over, he proceeded to throw a fit for the two hours following.  When they came in to do the second one, he was fit to be tied.  These treatments last fifteen minutes.  After the treatment, when they start the deep suction, he whimpered, and then went to sleep.  He was exhausted.  God love it.

Almost immediately, there was a difference in his breathing.  It wasn't as quick and not nearly as shallow.  The doctors felt good that this was beneficial in getting his lung reinflated.  So, their plan was to continue this at least through tonight.

As of right now, Wyatt is receiving these treatments every four hours.  They seem to really be helping him.  They are apparently very exhausting because he has been sleeping more. 

I apologize for not being as detail oriented in this blog as I have been in my others.  I have felt out of steam as of late.  I feel emotionally and physically exhausted.  I am scared of what the future holds.  I am frustrated and grateful at the same time.  Frustrated because they still don't know how to treat Wyatt and grateful that he is receiving such good treatment.  An oxymoron, I know.  I know that Wyatt is a very unusual case.  I understand that he is not textbook and going to such references do not apply to my baby.  I feel like the doctors are at a loss as much as I am.  Things that should work for other children, don't work for him.  Dr. Lovvorn came back from his vacation on Friday.  He told me that they are not ruling out the trach.  This is so disheartening.  I know that they will do whatever is possible to make my baby better, but at the same time, I don't want them to jump to make a decision just for the sake of a decision.  But at the same time, I know that Wyatt can't grow up here.  He has spent 3/4 of his short life in a hospital.  I hate it so much.  But, what do I do?  I do the best I can. 

I want to take this opportunity to thank so many people.  First, I want to thank you, my reader.  I know so many of you look forward to the updates to see how my baby is doing.  It means so very much to me that you remember Wyatt and our family in your prayers.  I know that there is much more going on in this world to worry about, but that you choose to think about us warms my heart.  Second, I am sorry that I haven't replied to every e-mail or Facebook post that I have received.  But, please know that I read each of them and appreciate each one of them.  I want to thank Jill Reynolds Williams, Jennifer Greathouse and Shelly Greathouse Crisp for the Edible Arrangement.  Not only was is it incredibly thoughtful, but it was delicious and beautiful!  You will never know how much it meant to me.  I want to thank everyone involved in the photography fund raiser for our family.  I never in my life thought that I would be in a position to need something like this.  I have always been independent financially and never thought I would have to rely on others for my family's financial needs.  However, I've come to a place where I know that Wyatt Paul is the very most important thing in this entire world to me.  And, with that, I will do whatever it takes to ensure that he is taken care of.  So, if that means that I have to receive help from my family and friends, then that is what it means.  But, please know, that it means more to me than I will ever in my life be able to express.  Lastly I want to thank Aaron Allison for coming to the hospital to pray with me.  It's incredible how God has put people into my life when I need them the most.  Aaron and Beth are in my life because I need them so very much spiritually.  It's so hard right now not to question God.  I know that we aren't suppose to, but it's so hard not to in times such as these.  That's why it means to much to me that Aaron and Beth are there to help me stay centered on God's plan.  Whether they know it or not, they bring a spiritual peace to me. 

As I close tonight, I want to apologize again for not being as well written as usual.  I just feel tired in so many ways that I cannot being to explain.  I need rest, not only physically, but emotionally and spiritually.  I just need to feel confident that my baby will be ok when reality is that I am not sure.  I just want to have solice knowing that he is going to be fine.  I'm not sure I have that right now.

Things I am thankful for.

Seven Layer Chocolate Cake from Noshville.

Friends who continue to lift me up when I need them the most.

A hot shower.

My mommy.