The Wild Wild Wests

I write this to you from my phone as I sit in Paxton's hospital bed~again. We were readmitted today. I have nothing. No clothes, tooth brushes, phone chargers ( went and bought it all) because I didn't think we would be here right now and of course we live two hours away. Pax has a couple of things going on with him. One of which is transient synovitis hip(s). Google it because I haven't the strength to explain and the fluid had also retuned to his right lung. We found this out via our post op appointment today. Meanwhile last night we were in our local ER for his inability to bear weight on either leg. It was super scary as I thought he was throwing a clot. Long story short he just got another iv, what's that like 6 in two weeks. I am again snuggling with him in his bed and we are both heartbroken. We have infectious disease, ortho and cardio coming tomorrow. Rumor has it he is going to need that cath after all since the fluid has returned. Guess we will see on the f...

Oh hell yah!!!! *************************** We broke out peeps!!! I type this to you from my very own bed!!! We were discharged last evening. We didn't tell Daddy and walked into the house around 7:30 without him ever knowing. He was beyond surprised!  So surprised in fact, that he was chillin in his "man pants"  when we walked in so no pictures are able to posted of the Daddy/Pax reunion. ; D The older two boys were already down for the night which was good because it allowed us to get Pax acclimated. We gave him a shower/bath to keep his incision from being submerged, yet allowed us to wash all of that hospital off of him so much better than the brotha baths he got for two weeks. He stumbled around like a drunken soldier (he is still sooo weak) from room to room checking everything out and playing with his toys.  I hovered like the helicopter mom I so am not. I put him to sleep in his very own bed...

It's dusk here. I love this time of day. It is when the world starts to settle.  Calm makes its way in to take over from the chaos of the day. It is when the aroma of dinner begins to fill the house and freshly bathed littles in their jams start to mellow for the night.  I am looking out over the window of Paxtons hospital room, staring at the setting sun with longing; "fighterman" asleep behind me.   I am reminded of how much bigger life is than we can even imagine.  Just as the miracle of babies growing in our belly's is more than just a science, so too is the rising and falling of the sun each day.  Life is big, but there is ever so much more to it when you stop to take it all in. We are amidst life and death right this very moment. Babies on either side of us cling to life. As I stare out I am acutely aware of this.  As far away and lonely as I feel right now from life on the outside, I am also incredibly aware that...

Tonight I cried.  Tonight was one of these nights.  I am sad and I want home.  I want my boy to not be poked anymore. I want him to crawl into his own bed and smell the softness and comfort of home. I want to do the same in my bed.  Daddy came to visit today. He surprised us and it was wonderful because we were sad this morning.  The H word was mentioned about this weekend and no sooner was it brought up that it is snatched out from beneath us.  Paxton's CRP test (a blood protein test to look for infection) not only came back positive but doubled from 7.5 to 19.5 in a matter of 12 hours.  Not good. His body is fighting something somewhere, it's just a matter of finding out what and where.  Cardiologists came in today and went back and forth about why the drastic spike and what it could be from. They talked more testing and more sedation and my heart broke.  I want him home, where he belongs.  I want that normal I talked about, that I ha...

Paxton West status post Norwood, Glenn and Fon-freaking-tan!!! ************************* 8 days post op and nothing remains on this child, but IV access in his right arm.  All chest tubes pulled, pacing wires pulled and all art lines pulled.  Peg tube replaced for a mickey button today and all his meds are PO.  Meds being lasix, asprin, tylenol and clindamycin. It's close!  So close I can smell it.  Smell it as in my home, dinner in the oven, laundry wafting through the house, the nape of my older boys necks. The book that started it all is coming to a close.  Who's ready for the sequel.... Love and hugs~ j

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 ...

This here is how we spend our days....me smooshed at one end of the bed and him at the other.  To tired to write tonight, so I am going to go to my end .  See y'all on the flip side. Love and hugs~ j

Today is the first Pax and I are alone.  You know, the "dynamic duo". There is something incredibly deep and special about a mother and her son, but a mother and her sick son...oh' it is more powerful than you can imagine.  Today was a day of many, small, but celebrated milestones here in CVICU.  You can't really do big again after rocking out open heart surgery like you owned the joint.  So now the two of us who both feel so very, very far from home, who's hearts ache with the need to be reunited with the other halves of our whole, we cling to each other until we are back with the others.   Our party of five is down two crew members and we all feel it. I walked to the cafeteria this afternoon and really thought about this life. You know, hospital life.  I have lived it a lot over 2 1/2 years.  You walk outside after being inside for so long and it's like being reborn.  Something as simple as walking...

I have always said no sleep is a legit form of torture.  I would like to reiterate that.  It's only been 5 days, but 5 days in an ICU with a toddler is beyond a full time job.  Then there's Paxton who is "still attached to the umbilical cord" according to my husband.  This makes it twice the work. I can't even pee without him screaming for me. So I pee in the room with the door open and in walks the nurse.  Eh' what the frig ever. Who cares at this point. I just know that Pax and I need some serious shut eye. It's nearing 11:30 and we are both still up.  Mind you we get woken up throughout the night for whatever med he is due for, then come 5 a.m. on the money in comes xray.  I can barely keep my eyes open right now.  I can barely keep my eyes open all day actually. This last month is catching up with me. Scratch that, these past two years are catching up with me.  I went to shower and brush my teeth for the first time today at Ronald McDonal...

I haven't written because I haven't been able to because I have this amazing little boy who is doing so awesome and needs his Mommy every minute of the day. ********************** I am all and by all I mean,  ALL,  he wants. Which is the most, and by most, I mean,  MOST ,   wonderful feeling there is in the entire freaking world!  He has called out my name approximately 3,678 times since he has come out of anesthesia and it is music to my ears, absolutely the most beautiful sound ever. I am not sure everyone around us thinks so, but oh' is it ever. the fist time i got to hold my boy post op ******************** Paxton's surgery could not have gone any better. He has now rocked the Norwood, The Glenn and The Fontan.  All 3 are behind us. History.  He did it!   I remember sitting at the table 31 weeks pregnant watching the doctor draw diagr...

Paxton is out of surgery and recovering. He is heavily sedated as of now, but all went well and doctors are happy with the repair. God is good! Prayers were answered. Today is a damn good, beautiful day. I will update more later. Thank you all for walking this journey beside us ! Update 8:10 am. Just got call they have made the first incision and are working through scar tissue now. He is stable and doing awesome. 7:20 am They have taken Paxton back to the OR. I will update when I know more. Please pray for my boy. ~j

Paxton is on the books for 7 a.m.surgery tomorrow morning. I will update you all as news arises. Thank you for the prayers and gentle reminders that God is in control here. We are now shacked up in our old stomping grounds; Ronald McDonald House! Today we caught up on naps and cuddle time. I am going to check out early tonight, well early for me anyway, say hello to my li-le friend ny-quil and try to rest because I am guessing if all goes as planned tomorrow there will be little time for it in the coming days. Again, I am humbled by each and every one of you near and far for your kindness and love. I will rest my head tonight enveloped in a peace only all of you (ok and ny-quil ;) can provide. My baby boy is wrapped in prayer and support so thick it gives me goosebumps. For that, I thank you all. I know that life goes on outside this hospital so all of you taking the time to reach out to us in the midst of your busy lives to lift us up, to send messages and meals and offer to do anyth...

No sooner are we admitted and in a gown than we are released. Paxton's surgeon was in emergency surgery with a Norwood baby all night and did not feel comfortable operating on Paxton. For that I am grateful. While I felt deflated for having to wait another day I knew it was for good reason. Patience is one of the many traits I have become quite accustomed to since having Paxton. Endless hours in the hospital will teach you that whether you like it or not. So we wait another day. My heart goes out to the family that was up all night with their newborn baby in emergency surgery and my heart thanks our amazing surgeon yet again for being ever so cautious with my sons life. Please continue with the prayers for Paxton! Tomorrow we make that last jump! Tomorrow, God willing, is his turn. Tomorrow starts a new chapter. I am told we are first on the list just as we were today. I will keep you updated as we hear anything. love and hugs ~j

We are holed up in a hotel here in St. Pete. Daddy and Pax are sound asleep and I am not, shocking I know. At this point I am just ready to do this. To "get er' done" as they say. I want it to be tomorrow night at this time. Then again I wanted it to be tonight a mere six days ago and here we are in the blink of an eye. In spite of pre op we had an amazing day together. The older two boys were absolute gems upon leaving this morning and there could not have been a better gift for Mommy. Paxton endured all of his tests today like the trooper he has alwayS been. We are primed and ready for surgery first thing tomorrow. He is first on the list at 7 am. We are told it is expected that it will take around 5 hours to complete. 5 long, hellacious hours of waiting and praying. How can time go so quickly one moment and so utterly slow the next... this I will never understand. What I learned again today, more than ever, is just how much Paxton touches people. There ar...

This is the favorite picture of my boy...its speaks to me. It reperesents.  Each one of those pilings behind him in the picture is a procedure he had to overcome in his young little life. Be it one of the many thousands of needle pokes all over his body, the surgeries for feeding tubes, the sedated echos, the open heart surgeries, the hospitalizations for uti's or hand mouth foot viruses. The list my friends, goes on, but my hero fought and jumped from piling to piling with a fight I have never seen.  Today we are teetering on one last big piling.  We are about to make one last big jump for awhile. I come to you near and far this morning asking you to begin the prayers for my boy. I am literally shaking from head to toe as I type this.  I am going to be handing my son over in less than 48 hours for open heart surgery again and I am scared to the very core of my being.  The hot tears will not stop flowing. Wherever you are the moment you read this please, I beg ...

I don't talk on the phone. Ever. I hate it. Despise it. You are pretty awesome/important/something earth shattering better be happening if you hear my voice on the other end of that line. I don't know why people call me, ever.  If you need me, your very best bet is to text me first saying hey dude-emergency, answer your stupid phone and guess what... I would, because I would get the text long before I ever even so much as looked at my voicemail list let alone listened.  I would even go so far as to say I might get a letter in snail mail before I heard a message on my voicemail. Don't judge it's my thing ok. You have yours and I have mine.  Which leads me to today.  I like to think I am semi smart at times and apparently what little brain I do have in there caught up with the rest of me and thought hey...your son is having open heart surgery next week maybe you should check your voicemails to see if any of the oh...I don't know... nurses, hospitals or doctors may ha...