Tag: tubes in ears

I dropped my basket, and it feels pretty good

A baby Clark update

In early December, I was feeling pretty great about life. I had finished the semester with A’s and survived the hardest months of my life. I had run the St. Jude 10K, celebrated Clark’s first birthday, and relaxed for a few days. At the end of that week, I took both Darcy and Clark to the doctor. Darcy had been diagnosed with an ear infection 2 weeks earlier and needed her follow-up appointment to ensure that the infection cleared.  I had also scheduled Clark’s hearing screen since he got new tubes in his ears. So, it should have gone 1)hearing screen 2) doctors appointment. It’s all in the same building, so whatever. Needless to say, we barely made it on time, and then had to pay our entire balance before we could see anyone, even though we were on a payment plan. Alrighty then, that sucked, moving on to the hearing screen! Clark failed. “After 3 failed screenings and previously failed ABR, it could be that he just has conductive hearing loss. It may be permanent and we need another ABR test to confirm because early intervention is necessary if he is in fact, deaf.”

Y’all. I started crying right then. I was just so upset that after multiple tests and two sets of tubes that Clark might actually be deaf to some degree. It just seemed too much. But we still had a full morning, so I went downstairs to his pediatrician’s office. Darcy’s ear infection had not cleared. 10 more days of antibiotics. I had some concerns about Clark’s chest wall and requested imaging. The doctor agreed that his chest deformity was not looking like the pectus excavatum we originally thought he had. So we went to x-ray and waited an hour for them to say the physician never put in the order. Waited 30 more minutes, and got the x-ray.

Holy shit. It was an effing nightmare. Clark has multiple fused vertebrae, fused ribs, and significant deformities. If you’ll remember…in the NICU after Clark was born we had a similar x-ray result followed by an MRI that was “normal.” I questioned it and the neonatologist at the time. He reiterated that the MRI was conclusive, that it was normal, and no follow-up was needed. If I ever see him again I will “accidentally” trip him, help him up, and stick a “Kick me” sign on his back because he is an idiot. We truly believed Clark had been healed. But he wasn’t. 

I won’t even try to tell you what kind of shape I was in because it was ugly. Ever since we had Clark’s 20-week ultrasound back in August of 2017, I’ve felt like I was holding this giant, heavy basket full of stuff. As time went on, and we got bad labs or missed developmental milestones, I would readjust the load and occasionally drop an item causing me to lament my ineptitude. On this day, though? I dropped the whole damn thing. I was so angry that everything I had prayed for and believed was wrong. What was the point of it all? Why believe, why trust in God when it doesn’t even make a difference? When it doesn’t change the one thing I would die to make better?

And that’s how I learned my hardest lesson I’ve learned so far. My faith was weak. It was dependent on the outcome. And when that outcome wasn’t what I wanted, my faith was crushed and my hope disappeared. Luckily, I had supportive friends and family members that dropped some truth bombs, “Our Lord is so much more than a being that is there to help life go right….when evil causes something terrible in our life, God promises ultimate good for those who love him and keep his commands. But this is not a promise for those without faith.”

And…I’m better. I am enjoying life more than I have in over a year because I’m not waiting for the other shoe to drop–it already did.  I am still apprehensive of the future, but for the first time since August 2017, I’ve stopped actively fighting this thing because it’s a fight that cannot be won. We have a genetics appointment scheduled for Clark at the end of this month, and the bigger, stronger part of me knows that the only way I can help Clark at all is to have all the information. And that requires stepping out into the really bright light, so that no thing is left in the dark. It may mean that we get a diagnosis that’s hard to accept, or  it could just raise new questions. Either way, I know it will be okay because Clark will be who he is meant to be.

On another note, Clark’s ABR testing was normal and he can hear, and I will straight up refuse another hearing screen because they are useless and upsetting. His neurosurgery appointment and ENT appointments have been uneventful and “good.” He’s getting stronger and making some really great progress with therapy. Darcy is sassy and funny and sweet and sour. School is hard, but I graduate in December and it is my motivation to keep on, keeping on. We are truly living our best lives these days. It may be a while between updates because life is busy. As always, we are thankful for your prayers as we continue on the journey towards a diagnosis. Love to all ❤️

 

 

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 ❤

 

Coffee, neurosurgery, and the ability to hear

My second go-round with craniosynostosis

I didn’t prepare much.

With Darcy’s surgery, I prepared for days in advance. I bought the snap up/zip up onesies, I packed multiple bags, I gathered snacks, etc. This time I just couldn’t because I knew better. I can prepare all I want, but ultimately it doesn’t relieve my anxiety. Knowing Jesus is in control, and that “it is what it is,” tends to outweigh the fact that I packed the perfect onesie and have quarters for the vending machines.

The Friday before surgery we had baby Clark’s pre-op blood work done. Within an hour, the ENT’s nurse called me and said that his hemoglobin levels were low-8.7 and his wbc were low-4.6. Basically this means that Clark is anemic, and going into surgery, it’s not great to be anemic because this surgery involves significant blood loss, blah blah. We went back to the lab for a redraw to confirm results, and his pediatrician told us the surgery would likely be cancelled.

Agh.

I was so disappointed, and I called the neurosurgeon to see what the plan was. Her nurse told me, “Yes, *Dr. Whosit wanted me to tell you…Clark is anemic.” I said, “Yeah that’s what I’ve heard. When should we reschedule the surgery.” Confused she replied, “The surgery is still on. Dr. Whosit says it’s perfectly safe to proceed! Now, when they place the tubes in his ears, if they find ANY pus or evidence of infection, the neurosurgery will be cancelled because of the risk of cross-contamination. Until then, the surgery is scheduled to proceed as planned.”

Mavis (aka “mom”) came to Baton Rouge Sunday afternoon for support, and to take care of Darcy the night(s) we spent in the hospital. We ate Mexican and tried not to think much about the following day.

We woke up the morning of the surgery, ate chocolate croissants because they are delicious (thank you Trader Joes), drank all the coffee, played with Darcy, and took her to school as usual. We then turned around and headed to the hospital. Now, the surgery took place at the hospital I used to work in. I still work for that health system because the school nurse program is a subsidiary of their children’s hospital. Anyway, it was comforting to have the surgery take place there because it feels like home in that hospital. The people are great there, it’s a great hospital, and there is a CC’s located inside the hospital, so obviously that’s perfect. For non-Louisianans, CC’s is Louisiana’s Starbucks.

We got there, checked in, immediately finished up registration stuff, and then proceeded to Clark’s pre-op room. I’m pretty certain it was the same pre-op room Darcy was in. We changed him into his gown, new blood work was drawn to check his hemoglobin levels, and we played with the happiest baby we know. We met with his ENT, the neurosurgeon, and anesthesiologist for last minute surgical conversations and final consent forms. Signing the consent form sucked because I had to discuss possible outcomes for the surgery which included: hemorrhage, stroke, and death. Then I signed the consent form anyway, and we wheeled my little one down the hallway to the sterile hallway. They stopped the crib and told us this was the stopping point. I bent down, laid my hands on him and prayed that Jesus would protect him. Then I kissed his cheek and watched him roll away.

Within about 10 minutes, the ENT came out and said she was finished. She said she placed the tiniest tubes she had ever used. There was fluid behind each eardrum, but more significant was that one ear canal was completely plugged with vernix. Vernix is the cheesy looking stuff on babies’ skin when they are born. Somehow his ear canal got plugged up with it! There was no pus, so the neurosurgery could proceed.

Being flu season, there are signs EVERYWHERE throughout the hospital saying to go home if you have any symptoms of being sick. People, however, are inconsiderate idiots. There was a man in the waiting room coughing every 2 minutes. Without covering his mouth. It was that rattling, disgusting cough and I went to the desk to request a mask to throw in his face, but they were “out.” I couldn’t just sit there and get tuberculosis, so I went up to my old unit to see my old coworkers most of whom had been sending me encouraging texts already because they are so wonderful. When I get up there, they give me the sweetest card, a gift card to CC’s, and this walking dog toy that Darcy is completely obsessed with. I nearly cried. There really is no friendship like nursing friendships. I mean how many people will willingly help you place a flexiseal before going to lunch? Google that if you dare. Anyway, God really does place people in your life for specific reasons. I love them all.
An hour or so passed and I got a phone call from the OR. The surgeon was coming out to speak with me, and I needed to go sit in the conference room. Wow. It seemed too soon for them to be finished, and that was scary. Had there been a complication?
Both neurosurgeons walked in with big smiles and said that they were finished, it went perfectly, and the little booger was headed to the PACU! Clark required a big blood transfusion and FFP (fresh frozen plasma), but he was doing well and should be extubated (breathing tube removed) shortly.

Within 30 minutes we got to see little man in the PACU. He was so precious and sweet and perfect. He had the tiniest nasal cannula delivering oxygen to his little nostrils. One of my nurse friends came to the PACU to see me and it was so good to hug her neck! They transferred him to the PICU, and we went up to see him. Now that he was uncovered, I could see that he had 2 IVs, an art line, and a foley.

He was still requiring some oxygen but only 2L. I tried to nurse him, but he was completely gorked from anesthesia and too sleepy. A few hours later, he did nurse and it was good to hold him. I occupied myself with discovering Apple Music which is a BRAND NEW THING in my world 😲
My old coworkers, friends, and family can tell you that I am not tech savvy. At all. I still have an iPod nano. No music has been downloaded onto that bad boy since 2012. I listen to burned cd’s from high school and college on car trips. I had an Iphone4s forever. Like with the old-style charger that no one had when I was working 12-hour shifts. It was a dinosaur and I couldn’t even download the iPhone updates. So, now I have a semi-current iPhone and just discovered that for $4.99 a month, you can have unlimited downloads. What?! So yeah, I spent the next few hours downloading music while baby Clark slept, and Ben worked on homework.

The night came. And we had one very *awesome* recliner to share. I was exhausted, but every time I almost fell asleep, Ben would move or sigh or do something else equally aggravating. Finally, I told him if he moved again, I might kill him. So, he got up and went to the rocking chair that sounded like a cat getting its tail chopped off whenever the chair was rocked/moved even a fraction of an inch. Yeah. Not happening. I made Ben come back to the recliner, and he and I lay opposite of one another. Like my feet in his face vice versa. We fit much better than way and got some sleep. I woke up at one point because Clark was stirring, and his heart rate kept jumping to 130+. I nursed him, changed his diaper, and requested pain medication. He calmed down and slept well.

The next morning, the surgeons rounded and said that if Clark’s pain was controlled and he ate, pooped, and peed then he could go home! She asked us to pick him up and handle him well to see if pain was going to be an issue. We gave him some Tylenol, and he was just fine! Cooing and eating and playing. Better still, he could HEAR!

We left early afternoon, went home, and napped.
Two days later, and Clark is doing so well. He gets a little restless, but with medicine, snuggles, and lots of kisses, he is just fine. He will have his first helmet appointment tomorrow afternoon. They’ll measure his head and get him all fitted for his new accessory. He should have it within the next week or two. It’s been night and day from Darcy’s surgery, and I couldn’t be more grateful. Clark has had minimal pain, a short hospital stay, and wonderful care. My family and friends have been more than supportive, and I cannot thank them enough. 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.

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