When it Rains, it Pours

In my last post, the three of us were settling in to a new routine in our sweet little home. Nehem had gotten to lay on his back and wear clothes, he was healing or so we thought and we were just starting to feel like normal people again after 11 days in the hospital. Remember when I said that this was only the beginning of Nehem’s journey? Well, stay tuned.

The night that we put Nehem on his back, we noticed a place on his incision where it looked like a scab had come off. We consulted his plastic surgeon and they just told us do a little wound care on it and it would be fine. About 2am that night/morning, we were laying Nehem down after a feeding and noticed some more skin break down. We weren’t comfortable with the way it looked, so again, we called plastics. The surgeon on call assured me it was just healing and as long as he wasn’t showing any signs of infection (he wasn’t) then it would heal and be fine. I wasn’t 100% satisfied with this answer, but I knew we had an appointment at the Spina Bifida clinic the following Monday where we would see all of our specialists, including Neurosurgery, and they would either confirm that I was a crazy first time mom or that his back wasn’t healing correctly. Hey Mamas, when you’re in doubt, trust your instinct.

We made it to Monday, and started out the morning with an MRI of Nehem’s brain to check his ventricle sizes, an ultrasound to check his kidneys & bladder, and we had our SB Clinic appointment that afternoon. Nehem was a perfect angel for his MRI (of course), but a little hangry when we got to his ultrasound.

As I previously mentioned, the SB Clinic is a way for us to see all of our specialists at Vanderbilt at one appointment. We basically sit in a room and the urologist, neurologist, orthopedic doctors, nutritionist, and any other person we may need to see come to us. It’s super convenient. We weren’t scheduled to see plastics for this appointment, as they are not usually involved in a case long-term, just long enough to assist with a back-closure. When our neurologist entered our room, he came in, felt Nehem’s head and explained to me that, per the MRI from that morning, Nehem’s ventricle sizes were no longer stable and a shunt would be necessary. As I explained in the last post, I know that shunts are life-saving, necessary, little devices but I was really hoping we’d make it a little longer without one. I do, however, trust our neurologist because he has literally been around since we got Nehem’s diagnosis and he has spent lots of time with Nehem from day one of his life.

After we discussed the shunt, our neurologist wanted to take a look at Nehem’s back to see how it was healing or lack thereof. He took one look and immediately had his phone out sending pictures to our plastic surgeon. That’s when I knew my Mama instinct was right. His back was, in fact, not healing properly and within minutes we had an appointment to see a resident plastic surgeon after our clinic appointment.

The next few hours were whirlwind of discussion of skin breakdown, lack of blood supply to the skin, and lots of other doctor terms I didn’t quite understand but all translated to the fact that Nehem’s back wasn’t healing like it should be. There was a risk of infection and meningitis because of his back being open, his back surgery would have to be redone, and an admission to Vanderbilt. So, what was supposed to be a simple day of doctor’s appointments turned into a no good, very bad, horrible day. Call me a Negative Nancy if you want, but it was not a good day for the ShPerry Clan.

The next day was another rollercoaster of emotions trying to find out if and when Nehem’s surgery would be. Neurology felt comfortable that we had 1-2 weeks before shunt placement became an absolute emergency, and they wanted to get the back fixed up before placing his shunt to reduce the risk of infection. We finally got confirmation that the surgery would be the following day, Wednesday 8/16.

Surgery day had arrived and my child who loves to eat couldn’t eat after midnight. His surgery wasn’t scheduled until 1pm. So you can imagine what our day was like. They finally came to take him to pre-op; they let me carry him down and rock him until the very last second, which we both enjoyed. They took him back to surgery and told us surgery would take around 3-4 hours. Shane and I took this as an opportunity to go get some non-hospital cafeteria food and get out of the hospital for a little while.

I know what you’re thinking. “How can those parents leave the hospital while their baby is in surgery?” On the day of Nehem’s initial back closure surgery, the anesthesiologist gave Shane the best advice we’ve gotten to date: DON’T SIT IN THE SURGERY WAITING ROOM. THERE’S NOTHING YOU CAN DO OUT THERE AND YOU’LL DRIVE YOURSELF CRAZY. We can leave our phone number and they will call us from the operating room and keep us updated. It’s fabulous. So that’s what we did. Time goes by much faster that way.

Anyway, Nehem’s surgery went well. They basically just had to do a revision of their initial skin closure. They stitched it up a little differently and we were all very encouraged and happy with how it looked. They taught me how to do wound care on it and sent us home on Saturday. I decided that I didn’t want to leave the greater Nashville area just in case his back started doing something weird again, and instead of calling and explaining what it looked like, and not being satisfied with their answer, I would just show up to the ER.

The next day, Sunday, if you’re keeping up, when I went to do wound care, there was a hole in Nehem’s back where a few stitches had popped out. Shane had gone back to Huntsville to be at church so my father-in-law got Nehem and me to the ER at Vanderbilt. I talked to the plastic surgeon on call while we were on our way and she let me send a picture, hoping to save me a trip. She responded with “see you when you get here!” so I knew it wasn’t good. Luckily, she knew our case and they were confident that they could just stitch him back up and send us on our way. Perfect.

The next day, I went to check out the places she had stitched up and there were two more different places popped open. Back to the ER we went, more stitches we received, and we were sent on our way again. By the way, ER copays are no joke. I knew the stitches popping were from Nehem’s wiggling so I kept him all wrapped up in a blanket whenever possible to minimize the wiggles.

We were good for a day—all stitches stayed intact and we all were happy…until the following day…two of the same places popped open. Ridiculous, right?! We called plastics and asked if we could just come to the clinic to avoid the dang ER copay. They agreed and gave us an appointment and when the plastic surgeon checked him out, they didn’t feel that it was going to do much good to continue stitching him up just to wiggle and pop them back open. There was still no sign of infection, the neurosurgeon came and checked it out to ensure we were good for shunt placement, and we were sent on our way to continue wound care. So, if you’re keeping up, we are on day 29 of Nehem’s life and 24ish of those 29 have been spent in a hospital room or an ER. So that’s fun for all of us…

Yesterday Nehem had his shunt placement. As I explained in the last post (I think I explained it…), the shunt starts in Nehem’s brain and has a tube that goes down into his abdomen to drain the excess fluid from his brain. Our neurosurgeon is the bomb.com and we have full confidence in him. He told us the surgery was successful and that he was happy with the results. He also emphasized how tough Nehem is. We couldn’t agree more. It was cool, however, for a guy who sees kids like mine all the time to talk about how tough Nehem is. Because he’s so right. Our kid is the strongest, calmest, coolest, most amazing kid I’ve ever laid my eyes on.

So there was some not-so-good-news in this post. We know with the journey that we’re on, we’re gonna have some not-so-good-days. I said in my very first blog post that God never promised us easy. It’s been really cool, though, to see how God is working other things out in our life. While Nehem and his stuff consumes most of our time right now, we’ve been blessed two-fold in other areas. So even on the no good, very bad, horrible days, God is near. He’s evident. He’s present. For that, I am so thankful.

We have people all over the place praying for our sweet Nehem. He’s basically a celebrity. It’s amazing. So how specifically can you pray for us?

1.     Please pray that when we are discharged from the hospital tomorrow (hopefully), we will not be admitted for a very long time.

2.     Please pray for healing for Nehem’s back. I am so ready to have these stitches and open wounds a thing of the past. I want to be able to put my boy in his MamaRoo and let him move his little arms around and GIVE HIM A REAL DANG BATH. Good thing he still smells so sweet.

3.     Pray for Shane and me. We are exhausted. In every sense of the word. Shane has been traveling back and forth between Nashville and Madison to be at church, take care of things at home, cut the grass, etc. Then he gets back to Nashville to take care of us.

4.     Pray that we can go home and stay home. We need a little bit of normalcy in our life so bad.

5.     As always, please pray that God is able to use our journey to encourage others and that God gets the glory for every good day, every bad day, and every day in between.