Tuesday, March 27, 2012

Getting Stabilized..

I feel like Clay is now the most stable he's been since this reherniation--thank God! I called our nurse this morning & he is on 38% oxygen (down from 100% yesterday) and his blood gases are better--they've even been able to come down a little on his high ventilator settings.

...But not without a cost. All of this is a pretty big setback for us... Even though the ECHO ultrasounds on his heart show no signs of Pulmonary Hypertension (PH), docs say clinically he's acting like a PH baby...his blood gases are poorly oxygenized & he was requiring more O2 from the ventilator.. So they put him back on inhaled Nitric Oxide. My heart dropped when I seen that machine rolling back in--it's another one from ECMO days. The NO relaxes his blood vessels to promote better blood flow & better oxygenation. Once they hooked it up, Clay responded almost instantly...his oxygen saturation levels went up, so his O2 was able to be weaned on the ventilator. The next blood gas test also showed quite a bit of improvement.
...So that means we are dealing with PH again. Hopefully it will just disappear after his hernia is fixed & his body isn't under as much stress. Pray that it will!
...Today, the docs plan to try giving him Sildenafil (Viagra) orally..which is kind of iffy, considering his stomach is in his chest. But hopefully his body will respond well with it, and the docs can wean on his Nitric Oxide. The pediatric surgeons will feel more comfortable operating on him if we can get him lower on the NO (or off all together).
...The urinary cultures & respiratory cultures are clear so far (have to wait 48 hours to be conclusive), and the analysis of his urine showed his white blood cell count at 15, whereas it was 120 on Friday. So that's a good sign! Pray infections are gone & stay gone!
...He his still completely paralyzed, so his little body is puffy. But he's been peeing really well, and I think he looked less puffy last night than yesterday morning, so that's good. 

Please continue to pray for a stable, infection-free baby...for strong lungs & strong heart. We need to get this hernia repaired so we can get on the mend & get our Claybug back!

Thank you all for your thoughts & prayers..you all have no idea how much it means to us. Our prayers ARE being heard & we WILL get us through this...

Much love to you all!

Sunday, March 25, 2012

Reherniation :(

What a horrible turn of events since my post on Thursday night. It has all happened so fast, my head is still spinning. Honestly, all I want to do is crawl in a hole & not come out until my baby is back!

We got the phone call late Friday night--our doctor said they did an Xray and Clay had reherniated. Meaning the patch on his diaphragm from the initial repair surgery (done at 2 days old) didn't hold up and his bowels slipped back up into his chest. That definitely explained Clay's uncomfortableness earlier in the day. Me and Eric knew something was not right. But an Xray had been taken earlier and the docs said everything was normal. So they did a septic work-up to check him for infection. They said his white blood cell count was high in his urine & it looked like he had some bacteria growing, so they told us it was probably a UTI causing his distress. They started him on anti-biotics, gentamicin & vancomycin. As the night went on, Clay kept getting more stressed & more stressed, so they did another Xray & that's when we learned he had reherniated.

It is something I definitely knew was likely--it's very common for CDHers to reherniate. But I hoped it wouldn't happen to Clay.

But it has...and we are not having an easy time with it.

When me & Eric got to the hospital early Saturday morning, Clay was working so hard, his heart rate was up to 200, he looked so sick. He was getting doses of morphine & a sedative to try to ease his pain. They were giving him bolus fluids because his urine output was little to none. They put down a repogle into his stomach to try to decompress the bowel that is in his chest, to relieve pressure on his lungs & heart. Also, an ECHO was ordered to check on Clay's heart, to make sure it's not under stress and that his pulmonary hypertension is still gone. The results from the ECHO aren't conclusive, but they think everything still looks good--which is such an awesome thing!--especially with how much stress Clay was under.

Me and Eric couldn't stay back there with him long...it was too much for us to see him so uncomfortable. I felt like him hearing my voice & my petting & touching him was too stimulating for him, and I knew the nurses needed their space to do work, so we left and went home. And I am glad we did, as the rest of the evening was really busy with Clay. And with all of our primary nurses there, we knew he was going to get the absolute best care. 

After we left, the pediatric surgeon put in a subclavian central line (a more permanent IV). And to do that procedure, they had to give Clay a paralytic, vecuronium, to knock him out. The drug really really knocked him out, but it made him comfortable & made his breathing much easier, so the docs decided to keep giving him PRN doses. Last night they switched the dose to an IV continuous drip, to keep him really snowed. Unfortunately, this is how Clay will have to be until surgery--and probably for a while afterward. It's one of the same drugs he was on while on ECMO.

Well, because the vecuronium does paralyze him, we've had to deal with those side affects. He's had to be put back on milrinone (another drug from the ECMO days)--to help his blood perfusion & circulation. He also had to get a couple of blood transfusions today. He's had to have a catheter put in to help him urinate (which he is doing well now). He had a few spells this morning where his oxygen saturation levels were dropping, so they went way up on his ventilator settings. They also decided to change his trach from a 4.0 uncuffed to a 4.0 cuffed, with hopes that he would get better pressures from the ventilator. That didn't really help, so they went up to a 4.5 cuffed, then to a 5.0 pediatric-sized cuffed trach. It looks huge, but since Clay is so drugged up, he doesn't mind it now (I have a feeling he will have something to say about it once he wakes up, though!). He is puffy & swollen & I feel like we've been thrown right back into those first few horrific, terrifying days of Clay's life. Except I almost think it's harder this time around. We've gotten so used to our playful, content baby. Now, we have a sick sick sick little guy. And it scares me to death. 

And it makes me so angry! I HATE stupid CDH! I hate that my sweet baby has to go through this! It is not fair. It's not fair to the hundreds & thousands other babies that have to go through it either--half of them don't make it. It is just such a devastating thing to have--something that will never truly 'go away'. We will always have 'reherniation' in the back of our minds. Because of CDH, Clay is still ventilator dependent. He has horrible oral aversion & has yet to take food by mouth. It just sucks!

I've read a few other CDH families accounts of reherniation, and it seems like Clay is having a harder time than most. We were talking with one of our nurses about how panic-y and frantic Clay gets any time his breathing is compromised (I don't blame him!)--and it just seems to be his personality. My baby gets scared...And I can't make it better :( I wish so bad I could! I wish so bad it was me. not him.

But let me tell you, I am SO SO SO thankful for our wonderful nurses. "Team Clay" is gonna fix my baby up. It is such a relief to know that while me & Eric aren't there, they are advocating for him. They have been with him through this entire time & really know him and love him. They call to check on him when they aren't working & have become such good friends to us, it just makes my heart so full! I can't even begin to thank them enough. How do you thank these people?! The nurses, the neonatologists, the pediatric surgeons...the ones who help save your baby's life?! I know for sure they're all getting invitations to his birthday parties!

Anyways, we don't really know when the surgery to repair his diaphragm will happen--hopefully sooner rather than later. I hate the thoughts of Clay being so drugged up & paralyzed until then, but I know it is necessary.  The big thing is making sure Clay is stable enough for surgery--and that all of the infection from the UTI is gone. The antibiotics will run for 7 days, but hopefully we can get him cleared up & into surgery before then. We also talked about doing a g-tube while he is in the OR. A g-tube is a feeding tube that goes directly into his stomach, so he won't have to deal with the feeding tube going down his nose. His oral aversion is so bad, I think it's a good idea.

Please please please say lots of prayers for my Claybug. He needs all the prayers & strength you all can send him. It's going to be a long road of recovery too, I'm afraid. But we'll take it one day at a time, knowing God is with us & the love and prayers and support of so many people. And we'll get through this!

Lots of love to you all!

Thursday, March 22, 2012

5 months.

And, we're coming up on 5 MONTHS! Our little Clayton Cash will be five months old on Saturday. If you were to tell me at the beginning of this roller coaster ride that we'd be in the NICU for 5+ months, I woulda said there's no way I'd survive..we'd be absolutely miserable. Even though it's not an ideal situation, spending most of my time in the hospital is really not as bad as you would think...

A day in the life:
- Momma gets to the hospital around noon, baby is asleep. Momma steals sugars from baby's sweet spot (below his little ear lobe :)). Baby wakes up and smiles at Momma. Momma's heart melts.
- Baby coughs, Momma suctions trach. Baby rubs his eyes, rubs his nose & tries to pull out his feeding tube. Momma distracts with a game of patty-cake. Baby grins. Momma's heart melts. 

- Momma gets Baby up out of bed & they sit in their comfy chair. Baby checks on his neighbors & Nurses. Nurses swoon over Baby's big bright eyes. Baby smiles at Nurses. Nurses heart melts.
- Momma snuggles Baby close (too close), and Baby's trach gags him. Baby retches & turns purple, Momma tries to distract Baby from puking (it works). Gagging makes Baby hot & sweaty. Momma takes Baby's clothes off & tries to snuggle again. Baby is too hot & sweaty to snuggle, so Momma puts Baby in his Boppy. Baby gets sleepy & makes his sweet little 'sleepy face', Momma's heart melts.

- Baby takes a cat-nap, while Momma plays Scramble with Friends (love that game!!) Baby wakes up & watches his mobile. Momma plays the 'kissy face' game: Baby's stuffed animals give Baby kisses all over his face. Baby grins his big open-mouth grin. Momma laughs. Baby coughs. Momma suctions. Baby gets tired of playing, Momma rubs Baby's head and sings his favorite song. Baby naps.

- Baby gets an afternoon bath. Momma and Nurse double-team Baby's stinky neck. (Baby's trach ties get funky!) Baby is such a good boy and makes bath time easy. Baby smells like baby lotion & gets a fresh outfit and looks like such a big boy! Momma's heart melts.

- Momma has to leave the nursery for shift change, so Momma pumps (yes, Momma's still acting like an ol' Jersey) & plays more Scramble with Friends.
- Momma comes back from the shift change with a new toy for Baby: a Kick 'n Play Piano. Momma & Nurse get Baby (& all of his accessories) situated in the floor. Baby coughs. Momma suctions. Baby stares at all his new friends above his head. Baby kicks & kicks his piano, making all kind of music. Baby smiles at Momma and kicks some more. Momma's heart melts. 
Baby says: Momma, this is so fun! :)

- Momma gets Baby back into crib. Baby looks at the sweet baby in the mirror and grins. Momma steals more sugars. Momma prays the same prayer always prayed with Baby. Momma steals more sugars. Baby grins. Momma's heart melts.

...and that's about how our day went! :)
(With lots of more coughs & suctions, poops & pees, tangling & untangling tubes and cords, and melting hearts in between!)

Now, today was a really really good day with Mr. Clay. Some days are not so happy & smiley.
 ..Like this past Monday.

As I mentioned in my previous blog post, our plan was to slowly wean on Clay's ventilator settings. And we were making good progress. In a little over a weeks time, Clay's pressure control was down from 16 to 12, his pressure support down from 16 to 11. He was requiring 21-26% oxygen. All good things!

 But, Monday evening, Clay decided he had enough of all the weaning nonsense--he got mad. And madder & madder & madder. He was air hungry and frantic. We changed trachs, gave extra oxygen, got x-rays, ambu-ed him, changed trachs again, tried every way in the world to console him. But nothing helped.
 Finally, we went back up on his settings and he recovered.

It is the worst feeling in the world to see my baby struggling to breathe like that! Believe me, even though it was somewhat of a 'set back', I would much rather be in the hospital with a happy baby than pushing him to his limit like that. My mom & dad were there to witness his fit and I think it put a few more gray hairs on their heads (ha!). And he scared his nurses too!

So, we're still kind of unsure where we'll go from here. We will probably have to try a different kind of trach--a cuffed trach--with hopes that it will create a better seal in his airway.  That way, he doesn't leak air around his trach & lose pressures that way. Keep your fingers crossed that this is what will do the trick!

And please continue to send your prayers & good vibes to our lil' man--that he'll be STRONG, HEALTHY & HAPPY :)

And in other news: I'm super pumped about seeing The Hunger Games movie tomorrow! You all should read the 3-book series by Suzanne Collins..It's awesome!

Peace & Love & Sweet Dreams to you all!

Sunday, March 11, 2012

20 weeks & counting.

Well, sorry it’s been a while since my last update—we haven't had a lot to report.  We are still in the hospital! We had another home vent trial last Wednesday, and the thing still can’t sense Clay’s self-initiated breaths, so we still can’t get home.  But Clay’s pulmonologist was happy with how his lungs sounded—even stronger than last week.  So, he recommended trying to wean his settings on the hospital vent and get him closer to coming off the ventilator all together.  They’re doing the weaning slowly, so hopefully he won’t notice the changes too much.  And in the meantime, we’ll do home vent trials every week or so, just to see if it will work for him. Y’all keep praying for him—for a strong diaphragm & strong lungs! I KNOW the boy’s got a strong will ;)

Thinking back a couple of months, to when we originally thought we were going home—and how much me & Eric have learned, and how much Clay has grown & gotten better—really makes me realize there’s a reason we are still in the hospital.  I know we’ll get home when everyone is good ‘n ready.  This springtime weather is sure making me homesick, though.  I’ve taken a day or two ‘off’ lately to come home and enjoy it.

Like today—I couldn’t miss my Grandpa’s 75th birthday dinner—so after spending some time with Clay this morning, I came home to the hills this afternoon.  I had my radio blaring, listening to the second half of the Cats game on my way home. Dang, what a bummer game!  But, I’ll gladly take a loss now and a NCAA championship title in a few weeks ;) With my windows down & the sun shining bright, my spirits were still high. And I got to spend some time with my family—who I’ve barely seen the past few months.

A ‘normal’ Sunday at my Grandma & Grandpa’s did my heart good. I got to eat some of Grandma’s awesome cookin’: bbq ribs, soup beans, turnips & greens (SO much better than the JUNK I eat while I’m in Lexington).  I took a walk and got muddy, I passed baseball in the front yard with Eric (in my barefeet!), I stink like a dog...and boy, does it feels good! :) The whole day, I was just imagining a little silly boy named Clay right beside me.  I cannot wait til he can join us! He is going to have so much fun out here in the country...he don't know what he's missin'!

Even though 20 weeks sounds like a long time to be in the hospital, it has went by quick.  And in the grand scheme of things, these few months won’t be nothing.  The love & support & prayers we've felt through it all continues to amaze me & makes it that much easier for us all.

Clay says Hi! :)

--Lots of Peace & Love to you all!