Tuesday, August 10, 2010

Day+ 47

So, being off the vent doesn't mean the rides over. The last 24 hours have been insane, but I'm happy to report he is moving forward. Baby steps, right?

After the extubation, he writhed and flailed and was just gasping for air ...all night. Once he was off, there was an hour of rest time and then dialysis for 5 hours. We were supposed to be able to hold him afterwards but no luck. He was keeping his stats up, but his lung sound quality was decreasing and by 10pm the attending came in to tell us that the 9 o'clock x-ray showed his right lung was collapsing. Brian went home around 11pm and the nurse and I pulled an all nighter with Daylon. He was comfortable in 20 minute spurts once extra meds were given, but mostly he squirmed and gasped. Honestly, this is a whole, new nightmare. Although it is a step forward, it's so hard to see him have such a hard time. Withdrawl is kicking in and he's uncomfortable and sick, not to mention, his brain is having to reteach his lungs how to breathe since they've been on a sabbatical for 6 weeks. I'm so nervous about his back tearing and breaking down worse. He's just so wiggly, I think some damage is inevitable. He kept having these hour long fits last night where he was going crazy (I mean, pin him to the bed crazy) and he knocked the ENTIRE g-tube out of his stomach! The hole was ripped open and is now unrealistically gaping. The nurse deflated the balloon, put it back in and inflated it up again, while I tried to keep him down. Within minutes, it was happening all over again. Eventually, the doctor brought in some gel-foam and we clogged the hole with it. He's scheduled for surgery on Thursday morning to have the entire thing replaced. The good news is, he is absolutely, no doubt, using his right side! Anyway, his left lung was also looking like it would collapse, but in a sudden turn of events, by his 7am x-ray, his lungs were improving. Yay! He also peed last night 250cc! For those of you who don't regularly measure how much you void, that's HUGE! Today they were also able to pull off an additional 500 with dialysis, so we hope to see the incredible shrinking baby soon!

I love being able to see his little teethers. The vent went in and he had eight. The vent came out and he has ten! His eye teeth are coming in! It's so funny, how with the all the other things going on, I plain forgot that he his only 13 months and little things like teeth popping up, are still happening!

His eyes did open for a bit last night, but he just stared at the ceiling smacking, well, nothing. The nurse said he's probably hallucinating. Lovely. They might start him on Meth-somethingorother and Ativan tomorrow to help him come off the meds. His evening nurse said it's like a prescription heroin and Ativan (he's already on) is a strong med in the Valium family. Apparently the two together work for longer periods, to help him not go through fewer ups and downs and they're less powerful than his other meds so that helps get him off as well. Thankfully, the doctors had mercy on him and ordered an extra one time dose of meds so he can sleep now.

The only real thing that concerns me, is that he hasn't made a peep. He hasn't cried, moaned, yelled, sighed, nothing. That's weird. The only nose coming from him is his lawnmower breathing and the occasional cough. Is this normal? The nurse don't seem to know and the only doctor to give me a straight answer chalked it up to a neuro thing. His voice is pretty deep from having JEB, especially for a baby, so I'm kind of wondering if maybe he's blistered his larnyx or something. Any ideas, guys?

I still can't wait to hold Daylon. Maybe tomorrow. Ben, one of our favorite nurses here, was telling us that with kids his age, there's typically a three strikes rule. The kids got an organ failure, no worries, you can turn around from that. Oh? A second organ is failing? There's still hope. Typically by the time the third organ fails, it's not looking so good. He counted out the problems over the last couple weeks: "-respiratory failure -kidney failure -liver failure -brain hemorrhage and then they added, oh and his heart may go out? Things didn't look good, but look at him now!".

I've been constantly amazed at Daylon's desire to fight for his life for over a year now. I never thought I could be in awe of someone so young. He teaches me everyday, to count my blessings. There's nothing like a child to put things in perspective for you. There's was a turning point in my life when I became a mother and learned that tending to these little people, with such big spirits, would teach me more about myself and life, than I had learned in last 20-something years. Little children are the link between heaven and earth.

Thank you all for loving and caring about Daylon and our family so much. Everyday we are touched by your words of encouragement and faith. We are being lifted up in our trials by all of you. Thank you.

PS- Changing subjects wildly--- I forgot to tell you guys! Bella's dad asked for a pee-pee dance to be done for her and Daylon peed. So, maybe if we all have happy running water thoughts for Daylon, Bella will pee! ...yes, we are going insane locked up in these 12x10 rooms. You have to have a good sense of humor about things to prevent the madness from setting in! :)


Sara said...

Wonderful news! Still keeping all of you in our prayers. Stay strong..Daylons an amazing kiddo! I don't know him and I'm inspired!

Anonymous said...

Keep going Daylon! Let the healing continue. The body is amazing at solving problems and putting itself back in shape. Show us what you have got!

Christina said...

Way to go Daylon!! Im checking your blog religiously for updates and praying like mad. Im glad to hear things are improving :)

Oh and Im going to guess that drug is Methadone and its used to wean ppl off heroin etc. It IS addictive but Im sure its the lesser of two evils at this point. I hope that combo of drugs brings him some relief :)

Anonymous said...

I am praying for Daylon as I pray for Bella. These babies have been more than most of us will go through in a lifetime. They are truly strong little ones. You all are in my thoughts and prayers daily. God is watching over Daylon and Bella.

Bella's Grandma Carolyn

Pati @ A Crafty Escape said...

We pray for Daylon daily, and will continue to do so. Stay strong, you are one amazing Mama. Hugs.

Bella's Blessings said...

Send the PEE PEE our way! LOL. Thanks for the nod! Yeah, I have this feeling that we're back on the trail, but not out of the woods. How many times have we gotten lost this past month??? :P Thank GOD that God has the map, and can see the path clear as day from his elevation. Cheers to keeping on... one step at a time. Love you guys! Tim

Anonymous said...

Oh what joy to see Daylon's face-Good Job little Buddy!!!Thinking and praying for you daily. Sending all my love and prayers to you!

Anonymous said...

Thinking of you and keeping track of the Blog daily. Prayers and love to you all! The Zalanka's and Grandma Bernice :-)

Linda said...

I don't know how you do it! It must be so hard to watch your baby going through what Daylon is going through right now. You are amazing. You are truly blessed, I hope you know that!!
Extra prayers that coming off the meds. will not be too hard for Daylon.
Love you guys. Keep the FAITH. Love Leah's Nana

Patrice said...

I'm so sorry this is yet another rough patch. But I truly do believe that it still is just a patch and Daylon has the spirit and will to survive this and come out healed and stronger on the other side.

More practical stuff:
- Ativan was our godsend for calming Jonah in those first couple months when he was in so much pain. I hope it works well for you guys.
- Hopefully the no noises thing is just from some inflammation from having that tube in there and will subside in the next few days. I know nothing about it except that there have been two times Jonah's trachea has become inflamed (sp?) and he didn't really have a voice both times. I'm hoping within a few days that you'll hear his sweet baby noises again. Praying that it's something that minor. (And the different docs drove me crazy with they "yeah, this is normal" and the next one saying "um, i'm not sure." BE ON THE SAME PAGE, PEOPLE! :)

Love you guys! ((HUGS))

Anonymous said...

I believe God sends these special children to amazing parents who will care for them, cheer for them, and champion them in their trials. My prayers are with Daylon and Bella and their families. May God watch over and bless you and your little angels.

Angelique said...

Too funny about the teeth. I TOTALLY forgot about that too! I wonder how many new teeth Bella will have? BTW - Ali is making it a contest to see who will get out of the hospital first. She thinks Bella is gonna win. LOL! How do these kids get so competitive?! I told Bella yesterday that Daylon was beating her. So, hopefully she is as competitive as her sister. A little healthy competition never hurt, right?

Grammy Staffy said...

Our whole ward is praying for Daylan and for you. Dee keeps us informed. We are sending best wishes and love along with our prayers.

Anonymous said...

Praying for Daylon and sending you all a humble THANK YOU from our EB family to yours.

Our son, Ryan, is 3 and has JEB. He has had multiple procedures for resection of granuloma tissue above his larynx. His voice is most always raspy, and he has extraordinarily inflammed vocal cords. The one time that he was intubated (for a 10 minute procedure), his hoarseness progressed to the point of a laryngitic-type voice. So, I can only imagine that spending any amount of time intubated would cause that same effect. Hopefully Daylon's voice will come back in due time-it took Ryan a good week to start talking with his 'normal' voice again.

Sending love and big hugs,

The Summers Family, MA


The withdraws sound horrible for a mother to watch. I pray things get better soon and for his lung to keep improving. But we all are SO proud of Daylon coming this far!!! I hope you will be able to hear something from him soon!