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!