Thursday, March 22, 2012

Stream Of Consciousness

It's a stream of consciousness kind of night because I am not going to lie, today was tough.  Pax and I got roughly two hours sleep last night and that compiled with the lack of sleep in the last week altogether sort of sent us both over the edge today. There came a point where my head was so foggy I thought for sure I was getting the flu. That has since passed, thank God, but it never ceases to amaze me how the body begins to shut down when it hasn't had enough rest.  I kept reminding myself over and over how much worse it could be and I let myself cry when I needed to.  I missed field trips and baseball games today. I am homesick for my boys and it hurts my heart. I have these amazing people stepping in to do these wonderful things with my babes, but I am sad and jealous that I cannot be there.  That is the truth and I think any mother would agree that you can be grateful and jealous all at the same time. Half of my heart is here and the other half is 2 hours away from me.  It feels like it's been so much longer than it has.




















































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The update on Paxton is this:

























The diuretics have worked to dry up his lungs and stop more fluid from forming. He is not "dumping" anything out of his piggytail anymore which is also awesome news. He got his left piggytail pulled yesterday and only the right remains as well as pacing wires and RA line.  We have weaned him off of the "strong"(etecrin) diuretic and started him on Lasix.  We will monitor through the weekend to see if he can maintain on his own with just the Lasix. IF he can then we will be able to forgo the heart cath and think about going home.  The collaterals are still present, but do not seem to be presenting any problems at this point considering he is drying up on his own with meds.  So we will leave them alone and I can monitor any changes from him in regards to those from home.  We will however, hopefully Monday, have his g tube replaced for a mickey button. Super stoked about that given that we have had the g tube hanging for far to long now.  As far as meds at this point. He is on lasix q 8 and he has to be on q 12 to leave.  The fewer doses of lasix the better because the more diuretics the more you flush out everything, including the good stuff like potassium and magnesium (which is what he has had replaced oh' so frequently that last 3 or 4 days). So we are safe on q12 not so safe on q8 and I don't need him bottoming out on those unbeknownst to me at home. He takes asprin daily and tylenol as needed. We did start him on Clindamycin today because there was some purulence at the left piggytail site. So we got antibiotics started to cover all our bases.  His blood pressure is still a little high so we may go home continuing on Enalapril for a bit until his body adjusts to his new circulation.  Other than that he looks AMAZING. He's pink, sassy and stubborn as ever.  He even got called a pretty princess by a nurse in the hallway when he was on his daily walk around the unit to build up his strength ( he was in head to toe blue just fyi) and when she realized he was not in fact a girl, she was so apologetic saying he was just so "pretty" she assumed he was a girl. He is pretty damn pretty, I give him that. Like perfectly pretty and everyone here is in love with him.

























Even when he screams "YOU STOP IT!" while pointing directly at the nurses trying to work on him, because he always adds a "pwease" to the end of it and we all melt to puddles.  Kid so knows what he's doing.  

I feel like home is close and it's like dangling a McDonald's diet coke in front of me at 7 a.m. , but not letting me touch it.  I want us to be home, reunited with our boys, so badly. Pax wants to be home and it shows.  Speaking of Pax, you all should have seen his face the first time we took his gown off and he saw all that was beneath it.  It was total shock when he looked down and saw his chest and belly. Broke my heart actually.  I told him Pax you have some boo boo's but they will be all better soon.  He now keeps them covered and protects them like a Mama bear with her cub.

I stared at him tonight with the knowledge that this 2 1/2 year long leg of our journey is coming to a close.  It's bittersweet.  I walked to the cafeteria tonight knowing that we won't, God willing, have nearly as many hospital visits anymore and life will resume to sorta normal.  He will still have a feeding tube and take meds, but we have nothing hanging over our heads for hopefully a long while.  He can feel better and get a stronger so he can keep up a bit more with his brothers and his friends. He won't spend his days cyanotic and panting anymore. He will never be a child with a healthy, whole heart, but he will feel better than he ever has and I have tears in my eyes for him that finally, finally he can be a "typical" almost 3 year old.  Whatever will I have to blog about now... Oh' don't y'all worry I will find plenty.  I am quietly watching the conclusion unfold before my eyes and it is breathtaking. Just as this entire journey has been.  

























Tomorrow morning is a good, good morning and there will be even better mornings to come shortly after that.  Oh' if I close my eyes I can smell home now.  Guess who's gonna blow through that door and light a candle and start a load of laundry with "our laundry smell" and wrap those boys in my arms and smother them in the kisses I have been aching to give them through every picture sent my way.  Home sweet home~ we are coming!!!!!



Love and hugs~
j


ps I want to mention that I have received so many emails, facebook messages, blog comments and messages about us through friends that they have shared with me.  I can't thank you all enough for your kind words.  I write because not only does it help me to deal and heal, but I want his story to help others on this journey. I also hope that it helps those who aren't as well. I hope that those of us going through it and seeing things from a side of life that is so fragile you spend far to many moments holding your breath waiting for the bottom to fall out. Well, I hope we are able to show those who don't have to, that life is an insanely precious gift.  The endless comments and letters I have received, and I read each and every one of them, bring such happiness to my heart. They make me want to sit down and share more because I see that this is opening eyes and hearts to a side of life that can change a person if you allow it. I want everyone to know this side of life.  So thank you for taking time to share with me that my therapy is helping you.  I am just lil' ole' me telling a big, big story for the most amazing little boy! I am his voice. This is Paxtons story, I am just his vessel and what an honor that is.  Dear friends, I rest my insanely tired head tonight so full of emotion, motivation and love because all of you stood by us, some I know, so many that I don't know, and rallied around our family.  You prayed and uplifted and while it may seem little to you, its huge to me.  So, thank you.  For reminding me what I should do with this story we have been living.... I can do it now and I know with all of you behind me that I will.  For Paxton and for those just beginning.  

1 comment:

Anonymous said...

Been stalking you guys loads, so glad all is heading in the right direction to going home veryVERY soon!!
Pax has done amazing!!! Hope my little man does just as well when he has his fontan. Seriously pax has rocked it!!! But I know you know this.

Will carry on praying n stalking you guys, can't wait to read the post that he has been discharged.!!

Lots of love n prayers
Elis cx

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