Tougher than Nails

IT’S NOT FAIR!!!! NOT FAIR! NOT FAIR! NOT FAIR!

Yes, even at age 27, I still want to throw an all-out-over-the-top-two-year-old-toddler-with-an-attitude tantrum.

But, whether I like it or not, life is simply not fair. Example: Abby got RSV at 7 months old and had to return to the hospital less than 5 months after we left.

You would think that, with everything we’ve been through, and how hard we’ve worked, we could relax a little. And with how well Abigail has been doing, we had hoped that we were ‘out of the woods’ with some of the bigger threats. I saw the time and trauma of the NICU as us sort of ‘paying our dues.’ But there is apparently no rest for the weary.

I don’t want to be over dramatic. I don’t want to make a mountain out of a mole hill. But in all seriousness, these past 2 weeks have been the hardest we’ve endured since we brought Abigail home from the NICU. And this one night in the ER and the PEDS unit ended up being more traumatic than 80% of our entire 3 month stay in the NICU last summer. As far as RSV cases go, Abigail really didn’t have it too bad. I know of some infants that are in the hospital for weeks and can barely breathe because of it. We never got close to that. That being said, it wasn’t a cake walk, either.

Abigail wheezes when she eats. This is normal. It goes away 10 minutes (or less) after she is done eating. It’s been this way for months. No biggie. But after we got home from our NorCal trip and started back in our routines, the wheezing was lasting a tad longer. But it was stopping, so I wasn’t really worried… until the day it didn’t stop. She wheezed all afternoon. My mother noticed it, and said something to Anthony. Then, Anthony told me about it, and that he’d noticed she’d been coughing a little. That same evening we went from “kind of wheezing” and “coughing a little” to her wheezing like an old man with emphysema and hacking-up-a-lung coughing. But, she still slept through the night, was still eating, had no fever or runny nose, or any other symptoms for that matter. As you all know from my last post, from there we saw Dr. S and were confirmed to have RSV.

Dr. S was hopeful that it would be a mild case because she’d had 2 of her 5 vaccination shots against RSV. It wasn’t much, but it was something. He told us that, at the stage we brought it to him, there was nothing he could do. No meds, no treatments, no help other than Children’s Tylenol and rest. Keep an eye on her and keep in touch with him. He told us that if her breathing became labored (which he described at 60+ breaths per minute) or if she became lethargic (and he reminded me the difference between lethargic and simply tired) to call him immediately. That was on a Wednesday night.

Thursday went as planned. Anthony and I went to work, my mother and father came to watch her for the afternoon, and all was as well as it could be. Around 6pm, Anthony was holding her and he called me over. He asked me if I thought how she was breathing was “labored.” Admittedly, she was breathing pretty fast. I said I didn’t know, so let’s count. We started a timer and started counting. I didn’t even get to 30 seconds and she had already taken 38 breaths… I didn’t wait to see how many she’d take in 60. I dialed Dr. S.

This is the point where things went downhill. Dr. S. was in his office. But his on-call staff didn’t check to see if that was the case. And I (still being “new”) didn’t think to ask. They told me, hey – it is after hours, you get the on-call Dr. So some man who was rather short with me and sounded annoyed at my call told me to go to the ER to get her checked out.

A) I was apprehensive because while I did think she needed to be seen, I didn’t think the ER was the answer. B) Dr. Saul HATES it when his patients get sent to the ER. He especially hates doctors who diagnose major issues over the phone. He super especially hates when doctors send HIS patients to the ER without even trying to reach him first. I tried Dr. Saul again, this time on his cell. I left a message asking for guidance. An hour passed and we didn’t hear from him. We felt like we had no choice but to go in. Better safe than sorry.

We were seen quickly. Chest X-rays were taken and a very nice ER doctor came to look at her. He sympathized with her pain – she was now VERY uncomfortable with everything and probably a little scared. But even then, she did better than the 5-year-old with the ear infection on the next bed. That kid was screaming like she was being tortured. Poor thing. Anywho – ER means they have to cover their…bases. Yea, that’s a nice word. So that meant the whole work up – including a blood draw. And the poor fellow they sent in to do it had little to no experience with infants…and it showed. Anthony had to hold her down, while I had to make sure she didn’t bend her elbow with a needle in it. She was scared, and in pain, and the two people she wanted to make it better (us) had no choice but to make it worse for her… torture for all three of us. (This is where I shout out to OUR nurses who never made me do anything like that!) Luckily it only took one try to get what he needed and he ran out of there like there was a fire-breathing dragon chasing him.

A Respiratory Therapist came in to give her a breathing treatment. And it was one of those moments when that golden light shines over things and that heavenly music plays out of no where. Almost instantly, she was better. Better breathing, higher comfort level, even a smile! And she wanted to eat, which was a great sign. AND Dr. Saul called! He was mad that his staff didn’t try to get a hold of him. He was sad that he wasn’t able to catch us before heading into the ER. He said that the X-Ray and breathing treatment were things he would have done, so he was pleased. He didn’t think the blood draw was needed, and he told us there should be no reason to hold us over night. He told us to tell the on-call Dr. to prescribe us a take-home breathing treatment and send us on our merry way. If only it was that easy…

So the ER Nurse, Darcy (who was very nice) tells us that the on call Dr. (Another Dr. S! Oye!) wanted to admit us for overnight observation and that she needed to put an IV line in Abigail before heading up to the PEDS Unit. We said that we wanted to talk to the doctor. Well, he was an on-call guy. The same one who was short with me over the phone. So he wasn’t actually present. He was making these plans without ever seeing Abby. So we told the nurse what our pediatrician had told us, and that we wanted to go home. To get it all cleared up, it would mean that on-call guy needed to actually come in. Well, he wasn’t happy about that. Over an hour later, he shows up, gives me a hard time about putting up a fight, and FINALLY takes a look at Abby.

She was doing better. He admitted that. But in this world of covering one’s ass, he still didn’t want to release her. He started asking me all sorts of questions, ones he clearly expected me not to know the answer to. (I think he was trying to make me feel dumb.) But of course I know what she’s been vaccinated with! In fact, Mr. Know-it-all, here is her vaccination card. Oh, you would like to know more specifics about her birth and our stay in the NICU? Great! Here is a copy of her patient summary written by her Neonatologist. Yes, I carry it with me EVERYWHERE. He actually said, “Oh. Wow. So you did come prepared.” Obviously, this guy would never be our doctor.

He walked away for a while to “consult” with someone. Half an hour later, he comes back and says something to the effect that, even though she is improved and will probably be ok, we must remember that she is a high risk baby. As Dr. S #1 couldn’t be reached
(at 11pm… duh) he had no jurisdiction on this particular call. On-call guy finally convinced me by reminding me that staying overnight and being “all good” was better than going home, not being all good, and having to call 9-1-1 at 3am. For the first time that night, I didn’t have a rebuttal. Better to be safe than sorry. So we stayed.

Ok. Up to PEDS we go for the IV and more breathing treatments. Oh, wait. For whatever strange reason, the ER nurse has to put in the IV. Um…. but she has no specialization in children, let alone infants. Oh, but that’s ok… if she doesn’t get it right, they can re-do it upstairs. Are these people nuts????? Yes, apparently they are. She tried to put the IV in her foot so that Abby couldn’t pull it out. Even though her veins are WAY better in her hands. And again, we had to hold her down. She screamed bloody murder… because the ER nurse had to wiggle the needle around in her vain to get it to flush. I was in tears. But at least it worked.

Anthony got her to calm down, and we were wheeled up to PEDS. We had a great Nurse named Elsa. She was sweet and helpful. And she thought Abby was adorable. For whatever reason, that always seems to help the situation. But it brought back so many memories. She was hooked back up to a heart rate and oxygen monitor that beeped pretty much every time she moved her foot. And the “bed” she was in was actually a cage.

My parents met us there for support and we got settled in. Another RT came in to give her another treatment, and Elsa was getting the steroid ready to give through her IV. Here was where the meltdown came in. Not Abby – Me. See, Elsa connected the meds to the IV and tried to push them through. But it wouldn’t go. It was clogged. She tried to wiggle it a little to clear it, and Abby screamed. She tried again to push it through and she screamed even louder. Elsa tried and tried and it just ended up hurting her more and more. She was screaming and crying, and I was sobbing. Finally it was just too much.

STOP! JUST STOP! LET GO OF HER!

Elsa knew better than to question me. She put Abby’s foot down without hesitation. I scooped Abby up in my arms and rocked her back and forth while she cried. She clung to me and wouldn’t let go. Through my tears, I looked at Elsa and asked her what we do now? This was obviously not going to work and I wasn’t going to allow anyone to try that again. She said the only solution would be to take that IV out and put another one in somewhere else. I felt defeated. She shook her head and apologized. She said she had no idea why the ER would insist on trying the IV downstairs when they had experts up here. She looked truly sympathetic. I told her re-doing the IV would be fine in a little while. Give us time. She said she would return in a few minutes.

Then, THE BEST THING she could have done, she did. She came back about 5 minutes later to say that she got an expert to re-do the IV. Sonia, one of Abby’s Primary NICU nurses was there that night and she was going to do the IV. Hallelujah!!!!!

Abby had calmed down, and I took her into a procedure room where Sonia was (covered from head to toe in her very own moon suit because we didn’t want her bringing RSV into the NICU!!!) and we got ready to re-do. She looked at both her hands, picked a vein, and was in and done in under 10 seconds. Abby cried, but she didn’t scream. And once it was placed and her hand was boarded (so she couldn’t pull it out) she was fine. It was like it never happened. And the meds flowed through it without any problems. Oh, my Lord, THANK YOU for NICU Nurses!!!

From there it was rather uneventful, thank goodness. Abby slept in between treatments and meds. The best part was that her day nurse was a PEDS/NICU nurse that we knew! She had helped with Abby while we were in the NICU, and it made me feel so much better. Around noon a new doctor came to see us – sent to us by our very own Dr. S! This new doctor was actually a THIRD Dr. S. Hahaha. He was great. Reminded me of our Dr. S. He was very pleased with her progress. And he did exactly what Dr. S wanted done in the first place – he prescribed us home breathing treatments and liquid steroids, and sent us home.

We spent the weekend resting and giving her the breathing treatments. We were back on lock down. And she was starting to get better, bit by bit. Abby did lose some weight, as she wasn’t eating much. But we’ll gain that back. And we couldn’t do any tummy time for 2 weeks, which seems to be our biggest set back at the moment, but in time we’ll get back on track with that, too. She did get an ear infection about 6 days in, which is common. Dr. S says even more common when put on the steroids, which is why he didn’t want us to get the IV in the first place, but with antibiotics, we got rid of that problem, too.

Abigail seems to have created a domino effect, tho. She got sick, then my mom got Strep throat. Shortly after, my Dad got a virus, and Anthony got a cold. So most of the week she was watched by her Great Grandma, and my friend Janelle (thank goodness for close friends and family living near by!) But everyone seems to be doing much better now.

As of this past Monday, Dr. S declared we were back up to about 90% better. We should be 100% by the end of the weekend. And we can put this all behind us. We will continue on with the vaccines because we can’t guarantee that she won’t get RSV again… boo! So we still have to be super careful until March. But this too shall pass. So even though I wanted to throw a huge tantrum about all of it, I didn’t. I figure if she can handle all she did and be the happy, smiling, adorable little girl that I put to bed this evening, then I can handle it, too.  As her God Mother, Miranda, so wonderfully put it, she is simply tougher than nails.

-Jen

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2 thoughts on “Tougher than Nails

  1. Julie Mazer says:

    Okay, first of all you and Anthony are super parents and handled that all like the champs you are. I am, however, furious with the incompetence that exists in the medical profession. I grew up thinking all doctors knew exactly what they were doing and the assiistants must too. It was when my mom almost lost her leg(severe vascular disease) that I saw the vast difference in medical professionals. The butcher of a surgeon at Merced, Ca. said the leg had to come off. When I asked the odds of saving it, her literally impatiently said, “I don’t know. Look I’ve saved as many legs as I have legs in the garbage can.” Fortunately contacts I’d made at Universal hooked up up with one of the best vascular surgeons in the country, Dr. Moore at UCLA. This world famous surgeon has none of the arrogance of the idiot in Merced but was one of the most gentlemanly doctors I’d ever met. To make a long story short, although the jerk in Merced insisted UCLA would only “by her leg a couple more months”, my mom’s leg stayed viable until the day she died of pnemonia—-eight years later than that “two month” only period predicted by that horrible human being who called himself a doctor. The point is, Jen, you obviously could tell who knew what they were doing with Abby and who didn’t, and took action to save her from incompetence. Though one would hope everyone in the medical profession was as skillled as the next, it’s really no different than any other field. So many people just blindly accept what happens to them in a hospital situation, but you too were tough as nails and took a stand. Way to go, Jen, great job Anthony. As for Abby, she’s just a wonder and nothing is going to keep her down long. Keep up the fabulous work, lovely family!

  2. nancy says:

    When I worked in the ER only a very few could start IVs on babies. Its one thing when time is of the essence but any other time if you do not see a vein that you are confident about hitting get someone who is. While Miss Abby was battling RSV a one year old boy I know who was born a week late spent a whole week in the hospital battling it. He’s doing fine now and is home but it was amazing how this big bubba boy had more issues with RSV then tiny precious Abby.

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