It’s been a while now

The exhausting chronicles of the poop show we call our lives

Hey all. I’ve been kind of absent lately because my life is a massive poop show. For real, y’all. Lots of poop. I digress.

Okay, so it started at the beginning of July when I decided for sure I was going back to grad school to finish my MSN for Family Nurse Practitioner. Since I am returning to that god-forsaken program, and I only have three semesters left, I cannot work 5 days a week nursing the preschool children of EBR Parish. Sooo that means I had to quit my beloved school nurse job, which was just tragical–Side note: if things can be magical they can be tragical–Now because I loved my job so much, I told them I would stay on for a few weeks to set up the preschool for the start of the school year. It helped them out and until my semester started, I was free to help. School prep starts at the end of July and of course Clark gets sick and can’t go to daycare. It’s the usual–fever, snot everywhere, basic cold symptoms, etc. He can’t go to daycare, and Ben couldn’t take off work, so I have to miss some of those days. The other days he just had to suck it up and come to the school with me. Instead of healing, he gets worse, so I miss work again. Turns out he has an ear infection. Mom/Nurse of the year, y’all. He gets put on a 10 day course of antibiotics. When he goes back to get his ears rechecked, the infection is still there, because of course it is. He gets a new 10 day course of antibiotics.  He gets better only to be immediately followed by a new fever. After 20 days of antibiotics he ought not have a single damn bacteria anywhere, so we go BACK to the doctor. Oh, its just a virus and after 4 days of sporadic fever he gets better…again. So basically, I struggled to finish my commitment to my job. I felt like such a jerk calling in on my last two weeks but what can you do? Anyway, I start the Fall semester and my clinical rotations. Then Clark gets another virus consisting of constant diarrhea and his worst diaper rash ever. It was seriously worse than some chemo diaper rashes I saw when I worked at the Jude. I pulled out all of my nurse tricks and that rash just got worse. He screamed when anyone touched him or if his bottom touched anything–so I had to miss several days of studying, and even worse, my scheduled clinical days. At this point in the second week of the semester, I was already feeling WAY behind in school work AND clinical hours. Finally his stomach calmed down. His rash got better. Then, I-kid-you-the-eff-not, he gets the cold symptoms AGAIN. WTF?!! This has been six weeks of hell at this point. I just know he has an ear infection, because he’s fussy as hell and his ears aren’t draining like they should be (he has tubes). So I skip the pediatrician and go see his ENT this past Monday. Yep. His tubes are nonfunctional and his eardrums are bulging with trapped fluid. Homeboy needs new tubes AND his adenoids removed. Le sigh.

Y’all. I haven’t even wanted to update my blog because I swear these past 6ish weeks, I have struggled. STRUGGLED. I have not been living in “the joy!” I have been consumed by stress and anxiety and just plain exhaustion. Clark is still not sleeping through the night, the kids’ daycare has been sporadically closed for holidays, and any days I should have “off” for studying, I haven’t had.

Now all you women who love to say “Oh but you’ll miss these days!” Don’t. Just don’t. Don’t be annoying and tell me how much I’ll miss having sick kids that need more surgery with money we don’t have on energy I lost a long time ago. Oh yeah, ENERGY. I now have hypothyroidism! Hahaha! Life literally killed my thyroid gland. Well, that and genetics. That little pearl of a diagnosis also happened during the 6 week period where our pets heads’ were falling off.

Y’all. I’m tired. I’m hanging in there, but I’m tired. And, I’m not looking for sympathy. I’m not looking for anything other than to tell any readers out there that life can be hard sometimes. And not, “There’s a greater meaning to this struggle” kind of hard. More the “What fresh hell is this?!” kind of hard. So, even if you saw my cute beach pictures with my kids, know that Clark has woken up twice a night for about 2 months now, and no one gets sleep. Know that I was that crazy mama at the Crab Trap very publicly spanking my kid for trying to run into traffic. Know that I’ve gained like 15 pounds in 2 months because of my totally useless thyroid gland. Know that I occasionally want to drop out of school, leave a “Dear John” note for my husband, skip this joint altogether, and head to Aruba: Vacation for one, please. I’ve doubted that God has good things for us, and I’ve felt like Job.

It’s okay to say it sucks. You don’t have to use qualifiers, or say the strong-person things. You can say, “This sucks.” And I’ll nod and offer you a hug and a stiff drink to better enjoy your pity party. You’re entitled to it because you know that eventually it will get better. That’s why we hold on to little nuggets of hope here and there. Still sucks, though. Anyway, may your storms be brief, your blessings many, and may you be kind always. You never know when someone is struggling to stay upright much less survive Baton Rouge traffic with a shred of her religion intact. Love to all ❤

 

“Surgery? What?! I can’t hear you.”-Clark

Or at least that’s what he WOULD say

When Clark was born, he failed his initial hearing screen. He was a c-section baby, and a lot of times these babies retain fluid in their ears and even lungs because well…they don’t get squeezed in the same way they would if they were born via vaginal delivery. So, failing his hearing screening wasn’t all that impressive and we made an appointment for a re-check at one month old. He failed this hearing screening also. They performed another test and they were able to determine that one ear failed because of fluid but they couldn’t say for sure if the other ear was failing because of fluid. I didn’t know why he failed, but I KNEW he couldn’t hear me. He doesn’t respond to sounds. I can clap my hands and his eyes don’t even flinch toward the noise. Now, I had to worry if my child was deaf. They told me we could either repeat the hearing screen in 2 weeks or request an ABR to diagnose.

I chose the ABR testing. ABR stands for auditory brainstem response. It tests the actual acoustic nerve. So, basically, it can tell what’s wrong and how bad it is as opposed to the hearing screen, which can only say pass or fail with no information as to why he failed. I called and made an appointment for the ABR. Now, this was about the time that I wanted my child’s cranio diagnosed, so I had an appointment with his pediatrician the day after his second failed hearing screen. At that appointment, my doctor diagnosed Clark with an ear infection which probably didn’t help him with his hearing screen the day before. We started antibiotics and proceeded with our craniosynostosis diagnostics.

A week ago, we had his ABR screening. It was super stressful. Of course, I was worried Clark may be deaf, but it’s also kind of a tricky test. Clark had to be asleep for the whole thing which takes over an hour. I had to keep him up all morning and kind of starve him. That way, when we arrived at the facility, I could nurse him to sleep. My generally sleepy baby did NOT want to sleep because real life is a real beyotch sometimes. It took the first hour of our appointment for him to even go to sleep. Then it took an additional hour for the test to be performed. I was so scared he was going to wake up and ruin the test, and every time he stirred my heart would start pounding and I would internally scream, “NO!” Thankfully, once he finally fell asleep, he did not wake up. The audiologist explained the ABR test results immediately—cue the praise hands! The test determined that Clark had moderate/severe hearing loss, BUT that his bone conduction test was normal. This is super important because it tell us that his dysfunction is conductive and NOT sensorineural. For nonmedical people, this means his ears/hearing are probably fine, but they’re plugged with fluid resulting in hearing loss. Still. It hasn’t gone away like it should. It needs to go away for him to be able to hear. Tubes could help with this.

I knew that to “qualify” for tubes, they (ENTs) want children to have had multiple ear infections and be at least 3 months old, but I made an appointment with an ENT and prayed she would put tubes in his ears even though he is only 2 months old and has only had one ear infection. I hoped that they could just put the tubes in his ears when he goes under anesthesia for his cranio. I met with the ENT and she reviewed his history and said,”He failed 2 screenings and the ABR, has had an ear infection, can’t hear, and is going under anesthesia in 2 weeks, anyway?” I said, “Yes.” She said, “Let’s do tubes. If I can’t fit tubes in his tiny ears, I’ll make a small hole and suction the fluid out anyway.” I said, “Thank. You,” and I asked her to run away with me. Just kidding, but after a lot of disappointing appointments, this one was really great.

All that to say that Clark will also be getting tubes on the day of his surgery! I’m so relieved. There has been very little that I can do to help my son. Mostly, I’ve had to take the watch and wait approach, and I’m thankful we won’t have to do that anymore with this fluid in his ears.

Clark’s big surgery will be on Monday February 19th. I am ready to have it over with, but also dreading the recovery period. Darcy’s recovery was brutal. She cried for over 36 hours about 5 days after her surgery due to a pain crisis. For months, I would start having anxiety attacks when she started crying for any slightly extended length of time. Her craniosynostosis was more severe and the surgery was much more invasive than Clark’s will be. Her surgery required the top half of her skull to be removed, cut into pieces, and then put back together with resorbable plates and screws. Yes. Brutal. She had an incision from one ear to the other. His is endoscopic, which will require two smaller incisions on either side of his problematic, fused suture. Through these incisions, they will remove the portion of his skull that includes that fused sagittal suture and remove strips of skull bone on the sides of his skull as well. So, I don’t imagine he’ll feel awesome–it IS neurosurgery, after all. But he shouldn’t have quite as much pain as Darcy did. Within a week or 2, he will be fitted for a helmet to wear for the better part of a year. It will help to shape his skull as he continues to grow. *Bonus* It will also protect him from Darcy. He is not expected to stay in the hospital more than a couple of days. Hopefully, we will be able to go home quickly and start the road to recovery.

So that’s what’s been up.

Specific prayer requests include:

1. The surgery will go smoothly and as planned

2. Blood loss will be minimal, and he will not require blood transfusion(s)

3. His pain is well-controlled

4. We quickly leave the hospital, complication and infection-free

5. The tubes will solve Clark’s hearing problems

If you are still reading, thank you for being a part of Clark’s cheerleading squad. It has been quite the journey and this surgery is just another stop. I hope that Clark’s story will bring all the glory to our Jesus. He has been faithful to answer our prayer requests and has blessed us immeasurably with this little boy. We are thankful for your support, love, and prayers. Love to all.