Do you follow your mommy instincts? RSV (Respiratory Syncytial Virus)

February 17, 2017


RSV Changed the way I parent now and for the future

RSV (Respiratory Syncytial Virus) is a Virus that shouldn't be taken lightly, especially with newborns and young children. RSV is a highly dangerous respiratory infection that can go from 0-100 within days. More importantly, it can be a potentially deadly virus if not taken care of in time. Every child will catch the RSV Virus by the time of their 2nd birthday, but the younger they are, the worse it ends up being. RSV is primarily spread rapidly through child care centers, and preschools. When babies often contract it is when the virus is spread from children who have caught the virus, to parents, and to the next person or whoever has it that comes in contact with the baby. For most children and young babies, RSV will cause nothing more than a "common cold", but for the smaller percent of children like Andre and other newborns, it can lead to more serious life threatening problems such as Bronchiolitis, Pneumonia, Collapsed Lungs, Respiratory Failure, airway inflammation and even death. 

 

Trigger warning: This story is about our son when he got sick with the RSV Virus at 3 weeks old and was hospitalized at 6 weeks, about a little over a month ago (now 14 weeks). This is something that was extremely hard for my husband and I to go through- It was so devastating to see Andre in the state he was in and over the 3 weeks of struggles watching him get worse. I'm sharing our story because I would like for other parents and future parents to be informed of the dangers of RSV and to know what to look out for. It's important to always follow your own instincts no matter how many times you get turned away. In our case, I'm so glad we followed our instincts and continued to take Andre to the hospital and doctors office because if we didn't, who knows if Andre would still be with us. Don't allow others to belittle this Virus. It's not just a "cold", it's very serious and can be the matter of survival for a young baby. No matter how many times you get turned away from hospitals and pediatricians, at the end of the day, only YOU know what's best for your child. You are your child's voice, keep pushing to get help matter how many times others tell you otherwise.

This roller coaster all started when Andre was 3 weeks old. This will be a day that as a first time parent, I will never forget as it was the beginning of never ending pediatrician visits, multiple hospital visits, and seeing my son in the scariest state I could've ever imagined. As a first time parent, I was so adamant about not having others touch the baby and not having many people come over to the house and visit. I was that parent that people made fun of and call "Paranoid"... yes, paranoid. Before Andre came, I made everyone in my family get the whooping cough vaccine along with the flu shot if they had been planning on touching Andre. Of course, my family didn't hesitate and got the shots right away. I advised my husband to have his family do the same. Paranoid? No. Proactive? Yes. When Andre came it was so exciting, it was the best day of our lives. We had people visit the hospital, we had people visit at home, and we left the house occasionally. A lot of the times I would say "He's sleeping" but there's only so much you can do or say, right? When Andre came, I was on that "You can look, but you can't touch" motto. Around the holidays, (November when he was born) there was a lot going on, and unfortunately, it became hard to stick by my words. But now after going through what we went through it shouldn't have been hard and I should've been more firm on no one touching or holding Andre. I shouldn't have allowed people to hold him, I shouldn't have brought him out, and I should't have let him around young children who have been sick, or around others who have been sick or that have been around people who were sick.

 

Though we allowed people to hold the baby, I would always say "Don't forget to wash your hands" "Did you wash your hands" "You have to wash your  hands first"... People probably hated me, and I probably came off as the most annoying new mom on the planet, but I really didn't care. It didn't stop me from repeating the same question over and over again. It was almost like a broken record. The saddest part is that while I was looking out for Andre, I would get made fun of, looked at weird, and called paranoid for asking if people washed their hands or when others got too close for my liking. I never understood why... I was a first time mom, I have every right to ask these questions and to not want anyone to get too close. It's my baby, right? I would say to myself, "If you don't want others to wash their hands before holding your newborn, then be my guest, I guess! After Andre got sick, I later realized that while I was asking the questions "Did you wash your hands", the REAL questions I should've been asking was "Are you sick" "Do you have or had recently had a cold" "Are your kids sick" "Are people at your work sick" "Are children you're around sick?". The RSV Virus can live on surfaces for 6 hours, and on a persons hands and clothes for 30 minutes along with already being exposed to the virus... all it takes is a person to sneeze, breath, have a runny nose, and quickly touch something or someone who is carrying the virus. Just look how quickly this virus can spread from children to adults and from adults to children, it only takes less than 30 minutes!

 

When Andre got sick with the RSV Virus, it came as a shock. How did Andre get so sick so fast? Yes, we take him out, but everyone takes their baby out. Andre was born healthy, I had a healthy pregnancy, he wasn't a preemie, and he had no immunity issues. When he first started showing signs he was 3 weeks old. He became quickly congested and his breathing sounded off.  It wasn't wheezing just yet, but you can tell it was the beginning of the wheezing and more like a grunting sound. The morning after we started seeing Andre getting sick, we brought him to his pediatrician (this was the only time our specific pediatrician had seen Andre during this time) Because his sickness was just starting, it was hard to even tell what it was, maybe it was just a cold. Before our appointment, I had recorded videos of Andre's breathing so he could hear the congestion and grunting. Our pediatrician didn't think there was anything going on (like I said, it was the beginning) He advised us to run the humidifier because babies easily get congested, and to use saline drops and he should be just fine... if it gets worse and he starts to run a fever and wheezing then of course, don't hesitate to come back. Andre never ran a fever- we did the saline drops, and humidifier, it didn't seem to be getting any better. That night after our first pediatrician appointment while Andre was sleeping we had noticed that he'd be choking on his phlegm, uncomfortable, and would occasionally stop breathing. It was a scary night, and unfortunately, this continued for the next couple of days. We continued to do as our pediatrician had said- saline, humidifier, saline, humidifier... this wasn't helping, I knew that there was something more serious going on.

After a couple of long days and nights of Andre just getting worse, being out of it, and still choking in his sleep, it came to a night where I thought he was really bad. Andre had been starting to noticeably wheeze, and I continued to catch him when he would stop breathing. It was scary, it made nights hard, it made me paranoid, and it made it so hard to sleep during this time. We rushed Andre to the hospital for the first time over this course. We took Andre to Saddleback Memorial (where we delivered) and it was so scary being there... WHAT is wrong with my baby! I had looked up Andres symptoms prior to showing up to the hospital.. I know, thanks Dr. Google! Something called RSV came up, I had never heard of it before and I remember asking our friend who is a doctor about it because I thought maybe this is what he had. When we got to the hospital, they took Andre in right away! (THANK GOD! I was already scared as it is) When they took Andre to the back, they check his vitals, they checked his oxygen which was perfect, they checked his temperature which was perfect, and they weighed him. The nurse had said "Well you have a handsome and healthy boy here, what brings you in?" I had let him know that Andre had been wheezing, grunting, extremely congested, and he has occasionally stopped breathing. I can tell he was a little confused because everything just seemed fine, he was having the right amount of diapers, no temperature, and perfect oxygen. The nurse brought us to the back and let us know the doctor on staff will be coming in soon. When the doctor came in, I remember him saying " Well Andre looks great, whats going on?" We told him what had been going on and the doctor said because he doesn't have a fever and his oxygen levels are great then it's probably just a cold and it should get better with saline, humidifier, and aspiration. With newborns, there's not much you can do, and you don't want to give medicine. I mentioned to the doctor "Could it be RSV?" and he said that it is RSV season and they'll go ahead and test him for it, but he seems like he's doing okay. At that part of the night, Andre was asleep and wasn't wheezing (ironically, right?) The doctor tested Andre for the RSV Virus and it came back positive... I remember thinking I knew something was up! The doctor didn't explain anything to us about the virus, he pretty much just told us to use the humidifier, saline, and aspirate as much as possible- you know, the usual run down. They discharged us, and told us that if he continues to get worse, then to come back (currently rolling my eyes SO FAR behind my head right now!)

A couple of days went by, and Andre wasn't getting any better-if anything, he was getting worse. At this point, Andre started wheezing consistently but it would happen primarily when he was sleeping. Andre was still extremely congested, and still occasionally choking in his sleep. I called the doctors office in the afternoon and there were no appointments available, but because we were concerned, we went in for an "after hours" appointment. Though the after hours appointment was more expensive, we knew we had to get in right away. When we got to the after hours appointment, it was around 7:00 PM. We checked in and the nurse on staff welcomed us by asking us what was going on witch our little one. We did the usual run down- check in, explain, oxygen, weight, and temperature... Funny enough, this is when Andre peed on my for the first time... It was a lot of pee, my v-neck was soaking wet. It was cute and hilarious and brought a little bit of light during a stressful day. When we settled into the room, the nurse let us know that Andre was their first RSV patient of the season, and the season was just starting. Andre's temperature was perfect, and so was his oxygen levels which is great, but why is he still so sick? When the doctor came in and she checked him out, she let us know that Andre still definitely had the RSV Virus. We told her that he's so congested, having trouble breathing, choking, and wheezing. She told us that this sounds about right and it seems like Andre is at his peak, and that the virus should be getting better. She said because he doesn't have a temperature and his oxygen levels are great that there's nothing much we can really do because Andre was barely 4 weeks old. This was the first time RSV was explained to us somewhat briefly... at least a little more information than we have ever gotten previous to this appointment. The pediatrician let us know that RSV is like a roller coaster, especially in someone so young like Andre. If Andre is it his peak, it should be a matter of days before we start to see him getting better, but if he's not at his peak, he's going to continue to get worse and we should be looking out for if he becomes more congested, continues to wheeze, starts contracting, and starts to have a temperature over 100.4. We left that appointment feeling good, we knew Andre wasn't doing any better, but we felt good at the thought that maybe this was the peak of the RSV Virus and he should hopefully be getting better soon. There was possible light at the end of this dark tunnel (yay!)

 

A couple of days went by and still with the suggestions of saline, humidifier, and aspirations, Andre wasn't getting any better and it was as if the Virus had plateaued. Along with Andre still being sick, it was about to be a hard weekend. My husband had been going out of town for his work holiday Christmas party in San Francisco. I was so nervous because I was going to be alone with the baby for the first time, not to mention that our baby was still extremely sick. I knew that the nights were going to get hard for me because I wasn't sleeping as it was (even with my husband we would usually take turns sleeping because of Andre choking on his phlegm so much) The weekend my husband had left, I stayed with my parents who live down the street from us (SO thankful for them!) They helped me throughout the weekend, and it made taking care of a sick baby a little bit easier and a little less worrisome. Andre was still choking in his sleep and having trouble breathing, I had called my husband a couple of times letting him know I was worried and he should come home early- that I thought something was really wrong and I may need to take him to the hospital. This whole sickness made me constantly worried, filled with anxiety, and paranoid about every little thing I heard from this little one. While staying with my parents and them seeing for themselves what was going on with him, they could definitely tell something was up, but because we've been sent home so many times and was told it will get better, I guess the virus just has to run it's course. I didn't end up going to the hospital that weekend, I just sat there and watched Andre like a hawk. I watched every breath and every movement... like I said, paranoia, anxiety, and worry. I think every mom would be.

It was Sunday, and my husband Arash was home from San Francisco, we were so excited that he was finally home. Two days felt like a week! Andre was still about the same, and over the next couple of days he seemed to have gotten a little bit better. He was still congested, wheezing (a little) and still occasionally choking in his sleep, but maybe we were just getting used to it. During that week, we had plans to go visit our friends in Palm Springs, we go there often, and we were also planning on heading up to Big Bear for the weekend as long as Andre seemed better which at that point, he did! It was great, Andre's congestion had settled down a little bit and just didn't seem as phlegmy! Our friend who we were going to visit is a Doctor. It made us feel comfortable that we were seeing him because we knew that Andre could get checked out and we can maybe get an idea on his progress. When we got to Palm Springs, our friend checked him out and we heard what they usually tell us. Andre seemed fine, though he was diagnosed with the RSV Virus, he had no temperature, was breathing fine, and only had congestion. It gave us a little bit of hope that Andre got checked out and maybe the last appointment was his peak, maybe he really was getting better. After we established that Andre seemed fine, and just to continue with the humidifier, saline, and aspirations, we decided that it was okay to head up to Big Bear for the weekend. The weekend was great, we stayed in the cabin most of the time (aside from heading out to dinner) and stayed cozy with the heater blasting. It was a nice family get away with our friends after a stressful past two weeks. 

When we got home from Big Bear, everything still seemed just fine. Andre was still congested, but nothing more than he was previously. My family arrived to town from Dubai when we returned from Big Bear. I was so excited they were all here, it was going to be our first Christmas together in YEARS! This vacation meant the world to me, but unfortunately, it was short lived. When my family saw Andre for the first time, they were so excited, we all were! It was like your parents and siblings seeing your baby. My uncle held him, and automatically can tell something didn't seem right. They all knew Andre was sick, but my uncle could feel vibration sounds through his back, almost as if whatever he had was in his lungs. Suddenly, Andre turned for the worse... for us, at least! Andre started going down hill again, and I knew that maybe that wasn't it's peak and it wasn't getting better, maybe since he is so young it takes longer than it does with children who are a little bit older (which is very true) I had pumped a bottle of breast milk and left it for my husband so he could feed Andre and I could have some time with my family. When I got home, I noticed Andre was starting to have deeper contractions, enough where it would be alarming and Andre was starting to sleep a lot more... he just seemed so "out of it". I wanted to go to the hospital as soon as I saw him for some time, and the way he looked, but my husband thought it was fine. I pushed and pushed, I just felt like something was up. We decided to take Andre to the hospital, which would be now the second time. I was so desperate to get him somewhere, that we ended up just taking him to Hoag in Irvine (that was a HUGE mistake) I swear if I could sue them, I would! They are part of the reason why Andre barely made it to the hospital when we were finally admitted (Read more) We packed up the baby bag, and headed down to Hoag. My husband had even mentioned "Should we take him to Saddlback?" But Saddleback was about a 20 minute drive vs a 5 minute drive, I really just needed my boy to be seen asap! When we got to Hoag, they took Andre to the back right away. They checked his oxygen and again, it was fine. They checked his temperature, and again it was fine. The nurse on staff asked us what was going on and I told him that Andre was diagnosed with the RSV Virus about a week ago, and we were told he would get better, but hes getting worse. I told him that his retractions are so bad you can see his ribs, hes so congested, it looks like he can't breath, and he's been choking on his phlegm. We got to the back and met the doctor, she seemed young and my husband didn't care for her right off the bat. Which is weird, because my husband typically likes everyone. The doctor did a simple test to check for RSV, and said he no longer had the virus and that he may have just caught a different virus that is causing this to happen. Though his retractions and wheezing were so bad, she didn't see it as anything alarming (it was so weird how they continued to bursh everything off). They did an x-ray to be sure to make sure it wan't Pneumonia, and thank god it wasn't. As we were about to get discharged, the doctor let us know that if he were to get worse, don't hesitate to come back. I mean... how much worse can he get? Shouldn't you just be admitting him? The baby can barely breath here! Funny enough, no wonder my husband had a bad vibe, the nurse tried giving our 4 week old Codeine

 (by accident)... P.S. Don't go to Hoag Irvine for baby emergencies!

 

The next day, I went to my parents house for a little because everyone was jet lagged, we all just hung out. I had told them that we were at the hospital all night because of Andre. That his retractions were really bad, and he just seemed so out of it. They were shocked that they just sent us home! I really don't think Hoag Irvine is the place to take children to. I don't remember If I brought the baby with me or not, but I just remember at some point I had went  home and saw that Andre's hands were so pale white and extremely clammy... it was so weird, I had never seen his hands look or feel like this before. Even his lips looked somewhat discolored. I again, wanted to take him in, but at this point, I literally thought I was CRAZY! They all probably thought I was crazy too. It's like, you want to look out for your child and get to the bottom of this and keep telling people that something is wrong while you just keep getting turned away. It was sad that I felt like I couldn't fight for my baby, almost like it was pointless because I automatically thought we'd just be sent home anyways! We didn't do anything about the clammy hands aside from just monitor him throughout the night, luckily, he got better. The following day, I went to lunch with my family and brought Andre with me, we went to Stonefire Grill. I was talking to my family on how I was concerned. That I had come home last night and his hands were so pale and clammy, almost as if they were wet. Along with that, his face was starting to break out really bad, I knew it was eczema because I have eczema. I was debating on going to the doctor for the clammy hands and skin because I had just discussed it with my husband the night before. I didn't want him to think I was crazy or a hypochondriac especially because every time we've gone to the doctor for this virus, we've just been sent home and been told "It will get better".  During lunch, I told them that I definitely want to take him in. His pale clammy hands, congestion, wheezing, and now retractions and face were too alarming. I knew that if I didn't take him, I'd be paranoid and probably wouldn't be able to stop thinking about taking him in.

 

After lunch, I had let my husband know that I was taking Andre to the doctor. I don't know why I didn't want to tell him from the beginning. I think because we've been turned away so many times already, I felt like I was making people think that I was maybe over reacting. I headed over to the pediatricians office with my mom and aunt who was in town. When we got to the office and checked in, they asked what was going on. I told them that he had the RSV Virus, but when he was tested at Hoag he all of the sudden tested negative on the test he did. I told them that Andre's retractions were really bad, he's not quite himself, congested, wheezing, and I can feel some vibrations when he breathes... I told them I could tell that he's struggling. We dressed him down to his diaper, took his weight and checked his temperature. His temperature were perfect per usual, and we awaited the doctor to come in and see him (we've never seen this doctor before and will never see her again) When the doctor came in she seemed so bright and cheery- it was almost Christmas weekend, it was Thursday. She came in and checked out Andre, she used her stethoscope to listen to his lungs and said that everything sounded clear, his temperature was fine, and she didn't really think anything of his retractions. I mentioned his cold, sweaty, clammy, pale hands which she let me know was "normal" for some newborns. It was SO weird, can these people not see that there is something seriously wrong here?! I was so confused, it almost leaves you at loss for words being turned away so many times. You almost feel useless, and it's sad. It was almost as if this doctor didn't take her time or do a thorough check, I know it's almost Christmas and she was so nice, but my baby looks like he's barely functioning here, and a baby should never look like they're struggling to breath! She told us to continue to use the saline, humidifier, keep the house warm and continue to aspirate. As for his face, she gave us samples of Aveeno Baby Eczema, it should get better (it never did, we had to see a dermatologist) After that appointment, I knew I never wanted to see this pediatrician again. Maybe I'm being harsh because I was such a worried mom at the moment, but I just felt so rushed. All of the signs were there, and I really just felt like she literally didn't care about the well being of my baby. I took Andre home, and I continued to watch him like a hawk, where he really began to decline...

 

The nightmare begins

It was the following day after the appointment we had with the rushy pediatrician. Today would be a day that my husband and I will never forget. It'll bea hardest thing we've had to experience as new parents thus far. It was Friday December 23rd, 2016. We woke up in the morning and it was as if Andre had turned for his worse, he seemed so out of it, wasn't eating well, and had zero interest being at the breast, which is something he loves. Andre stayed asleep majority of the morning, and his retractions were not too bad but it wasn't like they weren't noticeable either. That morning we probably only had one wet diaper, where we usually would have 2 or 3 by then. Because Andre had been so sick over the last 3 weeks, Arash and I had absolutely no time to get any of our Christmas shopping done. Our tree was empty. I decided to leave the house and go Christmas shopping with my family for the day. I left my husband with a days worth of frozen breast milk because I didn't know how long I was going to be out for. Since Andre wasn't eating well from yesterday, I let me husband know that the doctor said we can give Andre Pedialyte to at least keep him hydrated and maybe it'll make him want to have some milk. Though Andre didn't seem like he was doing very well, I had to leave the house. I left the house in the afternoon, I believe around 12 or 1:00 PM, my family and I went to South Coast Plaza, lunch, and the Tustin Market Place. I kept contact with my husband throughout the day so I could check on Andre, and it seemed as if he was the same and wasn't doing any better. He had probably one wet diaper, and had been sleeping since I had left, which wasn't good at all. It was around 5:00 PM and I had left my family at Ulta to meet my father at Jarred's so that we can get my mothers Christmas present for her. It was special, we were revamping her wedding ring! We got her ring, and it was absolutely beautiful, we couldn't wait to give it to her on Christmas! After I left Jarred's, I went home right away so I can check on Arash and Andre. I was going to go out to dinner with my cousins and our friend Sophia, but I'm so glad I didn't because that could've been a matter of life or death for Andre.

 

When I got home after my long day of Christmas shopping, I looked at Andre and he was kind of just laying there and almost looked lifeless... he was beyond lethargic. I asked my husband how many times he ate today, I don't remember what he said but it was almost nothing. He only had 3 wet diapers, and had been sleeping like this almost all day. When I went to check him, his hands were pale white, he looked like he was barely breathing, and his retractions were the worse I have seen during this process. Andre was so floppy and lifeless, at that point, I didn't even know what to do anymore. I had told my husband I want to take him in, but we've been turned away so many times we almost thought that we were the crazy ones. How is it that we're seeing that there's something seriously wrong with our son, but no one else does? I brought Andre upstairs to try to feed him, and he wasn't budging, he had zero interest in eating, and just wanting to sit there and sleep. His eyes were closed almost the whole time that I was upstairs. I got on my phone while my husband was in the shower and looked up RSV for the millionth time. I did some more digging and was able to find extensive information on it. I found out that a baby should have 50-60 breaths per minute, when I started my timer and counted Andre's breaths per minute, he was at 40. I knew there was something wrong with him and that it wasn't good. My husband got out of the shower and we were debating whether to take him in or not, we thought "well we're just going to get turned away again" "they're going to tell us he'll get better" and "maybe this is just the peak and he'll be better tomorrow"... we were so unsure on what we should've been doing, we went back and fourth on trying to make a decision for about 30 minutes. I decided I wasn't going to take Andre to the hospital, I was so tired of being told that there was nothing wrong, I felt like a paranoid over protective mom. I remember thinking "these doctors probably think I'm stupid!"

 

My husband and I agreed on calling our pediatrician after hours line to see if maybe they can give us some light in this dark tunnel. I'm so glad that we decided to make that phone call and not just let it be. Calling that after hours line is what initially probably saved my sons life. When we got on the phone they connected us with the doctor who was on after hours service, her name was Dr. Barbara Petty and I will FOREVER be beyond thankful for her. I don't know this pediatrician, but I've told myself that one day I'll make an appointment with her just to thank her. She got on the phone and was so kind and soft spoken, she seemed so concerned and you can tell that she probably has the most incredible bed side manner. She was giving us the most information we have heard thus far. She asked us what was going on and we told her that Andre was diagnosed with RSV at 3 weeks and its progressively gotten worse. His retractions are extremely deep, he's been lifeless all day, not eating, has only had 3 wet diapers, and wheezing and something that sounds like a barking sound, struggling to breath, and his breaths per minute are at 40 the last time I checked. When she was son the phone she asked if he had a fever and I said no, I let her know that I was just at the doctor and they said everything was fine and at the hospital the day prior they sent us home and told us Andre no longer had the virus but maybe something else. While she was on the phone with us, she understood why we were so worried and concerned, we let her know that we don't know what to do at this point, we've done everything that everyone has suggested and we're tired of being sent away. Luckily, while on the phone with Dr. Petty, she was able to listen to Andre, she was able to hear the way he sounded and listen to how much he was struggling. Dr. Petty told us by what we're saying it sounds like Andre still has RSV, and by what she's hearing from him over the phone it sounds like he might even have Croup. Dr. Petty told us that we need to get to the hospital right away for him to be looked at. We let the doctor know that we've already gone to Hoag Irvine, and Saddleback Memorial, when at that point she told us that we should be taking him to CHOC Children's in Mission Viejo- they specialize in children. When we got off the phone with her we couldn't thank her enough. That phone call will forever mean the world to me. We got Andre's diaper back together, through on some clothes, and quickly left the house.

 

I remember it was raining that night. We quickly rushed out of the house and jumped on the 5 south to head down to CHOC in Mission Viejo, CA. Every time I looked over at Andre in his car seat, he looked like he wasn't breathing. The drive going to hospital was already bad enough that we were rushing in the rain, but also that I had to take him out of the car seat so he could breath. Every time he would be squished into the chair you could tell he was struggling. Worried that he wasn't breathing, I took him out of his car seat and held him tight to my chest for the ride. When we finally made it to the hospital, my husband dropped us off at the front and we went in while he went to park the car. I got into the emergency waiting room and it was packed. I was so worried that we weren't going to be seen right away due to how many people they had in the waiting room. The receptionist took my name and Andre's information and asked why we were coming in, I told her Andre has RSV and isn't breathing well, he also might have croup. She told us to sit and it should be a couple of minutes for our name to be called. We sat in an isolated corner, my husband came in and within 10 minutes our name was finally called- it felt like a lifetime.

Excuse me while I breath heavily here, it's so hard to relive this and reflect back on it. I can almost picture it in my head like a movie on rewind (crying right now) Andre's name was called and we were brought into a room, I remember it being so busy back there, there were doctors and nurses everywhere. The nurse asked us what brought us in tonight, we told him that Andre was diagnosed with RSV when he was 3 weeks and it just never got any better. We told him that he's been struggling to breath, he's retracting really bad, has white clammy hands, has had almost no wet diapers, isn't eating, and had 40 breaths per minute when we were home. I told him that when we were on an after hours line, the doctor told us she thinks it may be croup. We told him that we went to Hoag the other night, and they said he tested negative for the virus and that it was probably something else and sent us on our way out. They had me dress Andre down to the diaper, to check his weight and do a work up on him. They checked his temperature, his breathing, and hooked him up to check his oxygen. He said Andre's retractions were bad and it wasn't good that he's not eating or having wet diapers. When he checked Andre's oxygen, it was at 70.... that right, 70... he called the doctor in right away, and all of the sudden it was panic mode. Having a newborn with oxygen at 70 IS panic mode. It was by far the scariest moment of my life. The doctor came in looked at Andre and just kept saying everything is going to be okay, we're going to take care of him "What was he even talking about..." he just kept saying everything would be okay. You could see the worry in his face, that this was an emergency situation. The doctor had nurses quickly to get a room ready and set up because they were taking him back. They needed to work on Andre as soon as possible. In that moment, the doctor even told us we barely made it in because his oxygen is so low.

They rushed Andre to the back into a small room, there were about 7 nurses and 1 doctor prepped and quickly ready to work on our little boy. The room was intimidating, there were people everywhere, even the nurses looked scared and confused. The look on their faces were as if they didn't know what was going on or what to do. You could see nurses whispering in the hallway and looking back at our room. Andre was in really bad shape, I couldn't keep it together, I felt like I was hyperventilating, dizzy, about to pass out, and couldn't stop crying. My son looked so hopeless on that table get poked and worked on, screaming his eyes out in pain and getting hooked up to so many machines, he was just a baby, how did this happen so fast? The poked Andre with an IV, a heart monitor, and oxygen. It was a struggle to get him on the machines, his heart rate at some points was even in the 200's, there were machines that were beeping so loud, he was so stressed and wasn't getting any air to breath. There were hands everywhere, you can barely even tell what was going on and what they were doing. It's incredible how quickly things change, and how fast a team can work to get a baby stable. A man came in to check Andre's heart thank god it was okay, another man came in to do an x-ray to check for fluid, thank god it wasn't Pneumonia. A little later once Andre was a little more stable and hooked onto oxygen, another nurse came in to do an extensive virus test and guess what.... he tested positive for the RSV Virus, go figure. Along with RSV, he was diagnosed with Bronchiolitis, Rhino Virus, and Respiratory Failure. Andre was finally in a relaxing state hooked up to the monitors, oxygen, IV fluids, and tons of steroids. When the doctor came in to let us know what was going on, he said that because Andre is so young he needs help breathing send help to fight off this virus. He told us that for children who are older, they already have an immunity system which Andre doesn't- he's only 6 weeks old. The doctor let us know that shortly they were going to take us up to the pediatrics ICU to help stabilize Andre and so that they can keep a close 24/7 watch on him. Andre was finally asleep, I sat in the bed with him and he had a mask over his face to give him oxygen. For the first time in weeks, he was finally breathing normal again... though it was aided, it was such a nice sight to see. The nurse clicked the wheels to our bed, and took us up to the ICU. When we got into the room, 3 nurses immediately came in to help care for our baby boy. The room was intimidating, Andre had to be put into an isolation unit which had 2 sets of doors. Those who were to enter the room had to cover up from head to toe in a yellow protection poncho, shoe covers, gloves, and a mask- we didn't even know what these nurses looked like (laughing over here) The nurses hooked Andre up to oxygen again, and were monitoring his machines from the outside. They would occasionally come in to check up on him, give him breathing treatments, and do suctioning to clear him out.

It was Christmas Eve, and we were still here. This would be our first Christmas as a family. It was sad being in the ICU and seeing our son struggle in the state that he was in. But we knew Andre was in the BEST place he could be in and getting the best care. My husband and I would have times that we would be crying, but be so thankful that we made it in the hospital in time. The nurses came in the room throughout the day to continue to check in on Andre's oxygen levels and heart rate. He was stable with the machines. They continued to do suctioning which even clogged up their tubes he was congested so bad. The day went on and on and on, my husband got us lunch and dinners from the cafeteria and luckily the food was great. They days were long in the hospital and unfortunately we didn't know when we'd be going home. Christmas Eve was special at CHOC, they do a great job at making the holiday special for kids since they aren't able to be home. They have dog that comes in "Piper" who walks around and check in on all of the children. Unfortunately Piper wasn't allowed to come into our room because we were in an isolation unit, but we saw her from the outside and got a photo of her and Santa for keepsake! Christmas day rolled by, it was now Sunday December 25th. It was our first Christmas together, and it was so special. We woke up in the morning and there was a bag full of presents for Andre. The tag read "To: Andre From: Santa" it was the most kind thing I've ever seen. Though we were in the ICU, CHOC did an incredible job at making a not so normal Christmas feel normal. We were so thankful for CHOC and all of the wonderful donated presents from incredible people. Andre got so many toys for Christmas, because of these kind people, this became a Christmas we will never forget and forever be SO thankful for. It still brings tears to my eyes every  time I think about our experience at CHOC Children's. As the day went by, we had family member come down to the lobby to give us some Christmas presents and to bring us some home made food, it was so nice to feel like we were at home after such a stressful couple of days... there was finally a bit or normality. When the nurses came in, they told us that Andre was doing better and we can start the process of weaning the oxygen, slowly. Though they were weaning, they let us know that they were still monitoring everything from the outside just in case Andre needed to be put back on more of the oxygen. It was a big deal, Andre tolerated the bit of weaning, his oxygen at the level was stable, his heart was stable, and his retractions were better. It was so nice to see improvements on our little guy!

It was the following day, and because Andre did great over night, they ended up weaning him a little bit more which he tolerated well. GREAT NEWS! We were leaving the ICU, and heading over to the regular pediatrics floor. I was nervous, but I was also so excited. I was nervous because he had been under such great care in the ICU and was being so closely monitored by multiple nurses. I was excited because maybe it meant that we were a step closer to going home and it meant Andre was clearly improving! We headed to the other floor, and luckily it wasn't busy and we were able to have our nurse specifically to our room. It was great, and I was hopeful it would stay that way! That meant all eyes would be on Andre. Andre did well through out the day on the new pediatrics floor, we had a couple of nurses come in and make their rounds and had a couple of nurse changes too after their shifts. They would come in do breathing treatments and suctioning. Slowly as the days went by, fewer and fewer suctioning was needed, it was great! The following day we weaned a little more, Andre had done great throughout the night! We were almost at room oxygen, if all went well doing the day, they were going to take him completely off of oxygen to see if he could tolerate and if all went well, we'd be able to go home within 1-2 days. It was a great sign! Later on during the day the new doctor came in to give us a run down on what was going on. He let us know about the virus' Andre had and gave us so much information on it. He asked if Andre attends a day care, we said no. He later explained that this virus usually comes from day cares, preschools, and school aged children and then it's quickly passed on to others once they come in contact with the unaffected child. He let us know that this virus is a roller coaster, it gets bad then gets better, it gets bad and it gets better. There's really no way of telling you when the virus will expel from the baby's body, especially because Andre is so young .The doctor told us because he's so young, the virus can last in his system for all the way up to a month! It was shocking to hear that. We asked the doctor ways we can keep him protected from others, and ways we could prevent him from getting more sick. My husband and I came up with a plan that we weren't going to allow others to come to our home for a couple of weeks, we'rent going to bring him out anywhere, along with not allowing others to touch or hold him. Our plan was solid, and I'm so glad we were on the same page- I just wish we were doing that from the beginning.

Later on during the day, my family met me in the lobby so that they can get an update on Andre. This was the first time I was seeing my family from before going to the hospital. They were all so happy with the improvements, it was so nice to give good news and let them know what had been going on. My family wanted to take me out of the hospital for a little while, so I can get a bit of a break. I went and checked on Arash and he said it was fine if I went for a couple of hours. I had milk pumped and prepared in case Andre had gotten hungry. I left with my family, and we went to the Mission Viejo mall- It was right across the street, so I wasn't too far away in case anything were to happen. I was out for about an hour until I decided to go back to the hospital. It was nice being out, but it was also nerve wrecking not being close to my boy and not knowing what was going on. I got to the hospital and brought PF Changs in hand- it was DELICIOUS. Just what we needed, we were starving! Andre was still doing great and had life back to him. Ironically enough, that night, Andre even smiled for the first time! It was so special and it was the sweetest smile I've ever seen... I'll never forget it!  He was stable and at night they were going to wean him to 0 oxygen, he would continue to only breath the air we breath. I was so nervous, this was going to be the decision factor on if we're able to go home tomorrow or not. If he does well throughout the night and his oxygen doesn't drop below 90, we're going to be in great shape. Our fingers were crossed, we were so hopeful. The night went by and our little champion did amazing. He was breathing normal room oxygen, and was doing amazing! This meant we were likely to go home today! The nurse came in to let us know there were not flukes throughout the night and they were going to slowly come in to start to discharge us. This was so exciting! I was so nervous, but was so excited at the same time. I was excited we were going home, but I was so paranoid of him not being 100% and Andre all of the sudden not doing well when we get home. I was a little paranoid, but the nurses and doctors knew best, I had to learn to trust their decision since they're the professionals. Not me. Actually, I take that back... I probably could be a professional after all of this!

 

It was now Tuesday December 27th.... The discharge nurse came in and it was time to start packing our bags, we were ready to go home. Andre looked great and was doing well. The nurses came in and asked us if we had any questions. We took home lots of paper work and stuff to read up on. They let us know that if Andre starts to decline, we're supposed to come back right away. Hopefully he would just stay in good condition. The hospital was great, they had an incredible staff and we were treated so well! When we left, they gave us a few extra pacifiers, a bunch of swaddles, and nice blanket with bears on it, and a pack of diapers, it was nice to have stuff to go home with in case we were out of stuff at home! We said our goodbyes, and got escorted down to our car- it was finally time to go home, and we were so happy and thankful to do so. I can never thank the staff at CHOC enough for taking care of Andre the way that they did. They made us feel like we were at home, even though we weren't. Everyone was so comforting and understanding, we now know that if we ever have another emergency, which hopefully not, we'll definitely be returning to this hospital. I want to thank you all for reading this incredibly long story, and I hope that I went well enough into details to where it would be helpful in case any of your little ones ever contract this virus. I hope that no one ever has to go through what we went through, and that they never get turned away like we did. Going through this experience has changed me... I'm always so paranoid and nervous about Andre, I even get anxiety at the thought of people being able to touch them again. I feel like for what we went through, it makes sense that I would feel this way. I constantly am trying to protect him, and am always so nervous of him getting sick like that again. I'm trying to forget about it and just know that he's better now, but it's so hard not to think about. No matter what, always fight for your child. You are your child's voice, and only YOU know whats best for them!

Thank you for reading!

Xo

Pardon my Baby

 

RSV SIGNS TO LOOK OUT FOR:

Retractions

Congestion

Difficult or fast breathing

Congestion

Wheezing

Grunting

High Fever

Nasal discharge that is thick white, grey, yellow, or green

Little to no wet diapers

High temperature

Extreme tiredness (Not waking up)

Not having interest in eating

Cough

 

If you have one or more than these signs, and are thinking that your baby may have this virus, go to your pediatrician and ask to be tested right away.

 

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© 2017 PARDON MY BABY  |  ALEXANDRIA SALAHSHOUR