The Children’s Hospital of Philadelphia (CHOP) is a world of its own. It is a state of the art children’s hospital and handles a lot of incredibly complex pediatric medical cases. If you have a sick child, especially one with a diagnosis that may present a challenge, CHOP is the place to be! Yet you don’t want to run into anyone you know at CHOP for the same exact reason! It is such an enigma. You tell anyone the word CHOP, means it’s got to be serious and something big.
We arrived at CHOP on the evening of June 28th, 2017. When transport brought Suvir into his bay at CHOP, an army of physicians and nurses was already waiting by his new bedside. We felt like rockstars in a weird way. We were huddled around by these medical professionals who were all very interested in knowing Suvir’s history. They made us feel very comfortable by trusting what we had to tell them. For the first time, Sunay and I felt like our voice and opinion mattered. They had a parent’s room ready for us to crash in for the night not too far from Suvir. Since they see families from all over the country and overseas, the main hospital building offers daily parent’s rooms that one can sign up for single overnight stays and then vacate those rooms the next morning. I glanced around at the NICU. It was wonderfully setup and extremely cozy. Each bay was spacious with room for one parent to sleep by the bedside overnight if they wanted to. A breast pump was always available at the bay so you could pump right next to your baby. We were far away from home but our basic needs for the first night were already taken care of.
We settled in and facetimed Rihaan. I missed him so much! I was so far away from him! I couldn’t bring him in the parents room but the NICU at CHOP welcomed siblings of all ages. Everything was happening so fast! Atleast now, Rihaan could visit his little bro at CHOP whenever that moment would come and the time would be right. I tried to hide the tears rolling down my face and said goodnight to him. Soon, the renowned ENT Dr Jacobs, who was the reason to transfer Suvir to CHOP, came over in the wee hours of the night and introduced himself to us. His presence and calmness was reassuring and we knew in our hearts we were in good hands.
Friday, June 30th, would be a very important day. Suvir was taken into the operating room, extubated, and Dr. Jacobs and his team performed a bronchoscopy and a microlaryngoscopy under anesthesia. He found that Suvir did NOT have vocal cord paralysis. Infact, Suvir’s vocal cords did have some movement but that movement was abnormal or inverse. In medical terms, Suvir had paradoxical vocal cords. Instead of the vocal cords opening up and allowing air to enter the trachea, Suvir’s vocal cords would from time to time do the opposite. They would be open and suddenly, wham! They would shut down! Leaving him gasping for air. In simpler terms, Suvir had “floppy” vocal cords. This explains why he would “desat” (lose oxygen) especially when he would cry or get agitated.
Suvir was intubated for a 5th time (in OR after his scope). He was one week old and was intubated 5 times!! The only upside to intubation is that you know your child will have a secure airway. That he will have oxygen and he will survive. One week old, still intubated and no end in sight for the simple act of breathing which is something we take for granted every single day. We were informed that some people go their entire lives and think that they have asthma, but in fact have mild vocal cord dysfunction. Dr. Jacobs said that if the vocal cords were to regenerate and heal themselves, as they can, they would come back realistically around 2-3 years of age. He wanted to focus on decreasing swelling in his throat and reassess him the following week. He wanted Suvir to grow and his airway to get bigger. Another week?! We would be here for another week? I kept hoping and praying that he would be out of here and everything would be back to normal.
Meanwhile, many more tests were performed including an EEG. I took the below picture of the EEG being performed. There was sticky gel all over Suvir’s scalp and a bundle of intertwined wires came off his skull! Every time I look at these wires, all jumbled together, I find it ironical that in a weird way they represent my life. All convoluted and twisted. The path to the end unknown with no light at the end of the tunnel!
Apart from the EEG, many needles went in and out of Suvir’s body to keep changing the IV port (veins collapse fast around an IV site in a small child). Every time he was pricked, it was as if I could feel the pain myself!
The weekend came around. Even at CHOP, weekend mentality is “a thing”. I decided to go home for a night to be with Rihaan and to refresh our clothes and food. I cried so much that I had to leave Suvir in the hospital so far away from home. My post-partum body was breaking and aching. I was pumping in the car on the ride to and from the hospital so I could spend more time with both my kids (especially Rihaan) instead of being stuck to the pump. I could have taken more care I should have, but I couldn’t see anything beyond my children at that time. I hadn’t comprehended what being a mom of 2 was like and I thought I was already picking my one child over the other. I was worried before delivery how Rihaan would do without his mom and dad for 2 nights and here it had been 8 days and nights. I was supposed to focus on Rihaan more as per the advice I had mentioned about in an earlier post. Instead, I didn’t have much focus on him at all. But Rihaan was and is a trooper. He was extremely mature for his age and still is! But even he would have his weakest moments when we would come home for a half a day or one night and then leave again. He would cry so much! He would scream, yell and beg us not to go. He would realize at that time how much he had missed us while we were gone. He was so confused why suddenly we had disappeared from his life. We had to drive away watching him like that. Sunay and I both broke down each and every time and asked what kind of test is God was putting us through?! We cried when we left Suvir at the hospital and we cried when we left Rihaan back home!
Monday, July 3rd 2017, was a big day! Suvir had been prepped with steriods over the weekend to attempt an extubation. Dr Munson, the chief of neonatology at CHOP, wanted to see how Suvir would do. Extubation is always the hardest. As resilient as children are, the first 24/48 hours after extubation takes a serious toll on their body. Failing to extubate is defined as the inability to sustain spontaneous breathing after the removal of the artificial airway. You know, that thing I told you we all take for granted?
Suvir was extubated and thankfully, he sustained! This was a HUGE step forward! Dr Munson even had the nurses take out his nasogastric (NG) tube temporarily so I could finally see my baby without anything on his face! This was the first time after birth I saw his face! No tape on his face either! Just my Suvir! For the first time in 10 days I smiled!
Sunay had yet to hold him. Finally, he held Suvir after 10 days!! Sunay’s birthday is on July 4th and he was ecstatic for this wonderful pre birthday gift…to be finally able to hold his son! Amazing how happy you become when your expectations have been set so low that holding your child suddenly means the world to us!
However, Suvir continued to have stridor and made the loudest little squeaks, almost like a little hiccup, each time he took a breath. As caution, a little CPAP mask was put on his face. I didn’t know which was worse for Suvir…a tube down his throat or that ugly thing on his nose! It was no surprise he hated that thing so much he threw a big fit!
So, the ugly nose mask was swapped out for a nasal cannula. He was so fiesty, he would pull our everything from his face and hands, so they had to double tape everything. He still looked angry but he knew that this was the best we could do for him at the moment! HAHA..he looked like a little angry doll!
Suvir was doing fabulous! Dr. Munson and team were impressed. He was tolerating my milk well and we were already working with a feeding therapist to introduce our little guy to the bottle and help him practice his suck..swallow..breathe! It was Wednesday, July 5th and Suvir was doing super on 1/4 Liter oxygen (the lowest oxygen setting you can have..its like practically being on room air). We were told that on this setting, our little guy could go home with nothing more than an oxygen tank! All he had to do was show us that he could tolerate incremental amount of bottle feeding without aspirating the feed.
We were at the hospital every single day. I spent every waking moment by his cribside! The only ones I spent to myself were the ones I woke up for to pump in the middle of the night in those parent rooms. Sleeping on those beds (sofabeds) was now taking a toll on our backs, especially mine! The constant sound of NICU alarms was always going off in my head even at home. All this time, we would have no time eating, taking shower, or talking to anyone else. We had no idea what was going on in the real world. This had become our world. We were consumed by it!
On Friday night we went home and decided to bring Rihaan the next day, to meet his brother. We would take Rihaan to a museum in Phill and introduce the two boys to each other and come back home for the night. But I found out that Suvir did not have a good night. He had thrown up a few times. So we improvised. Sunay, my dad and Rihaan when to the touch and feel museum after dropping my mom, myself and my breast milk at CHOP. I go in an found out that Suvir had a serious decline in his respiration. He was retracting (pulling air in the chest at the ribs, breastbone, collarbone), flaring nostrils (widening nostrils to get in as much air as possible) and dropping oxygen levels consistently below 90%. He was panicking and unable to remain calm. I could see a fear of some sort in his eyes when he would throw up! It was like he was looking at me asking for help. I feared he was aspirating because he was throwing up left and right. If I held him upright he would be fine, the moment he was laid down he would vomit. There was no way we could leave him and go back home. I called Sunay and he cut short his trip to the museum with Rihaan. We didn’t want Rihaan to meet his brother like this, so my parents and Rihaan went home. Robbed of getting the two boys together once again! Life.. at its cruelest! Sunay and I didn’t have any change of clothes since we were not planning on staying the night. Now we also had no car to get back home.
But that was the least of our concerns. I held Suvir non stop for 12 hours straight (with pumping and meal breaks in between when Sunay would hold him. His irritability had increased suddenly! There were tremendous bursts of crying that went on and on. Different things were tried all through the weekend. Different oxygen and flow settings! Nothing worked! Suvir was even on Heliox at one point (a combination of helium and oxygen that comes in giant tanks). He couldn’t go home on that! My heart sank!
The next day, our friends were kind enough to get our luggage and car from home and drop it off to the hospital. It was such a huge help!
The neonatologists who were on for the weekend were baffled just as much as we were at this sudden turn of events! No one had any answers, I wanted Dr. Munson back!
Monday came back and so did Dr. Munson. By this time is was the third day of us holding him non stop. Dr. Munson, explained to us that we wanted to go home but this was not practical life. We couldn’t hold him 24-7 just to keep him from vomiting and crying. I knew in that moment that all the progress we had made over the course of that week was in vain! He broke the news which I feared! Suvir needed to be intubated again. 6th time! Suvir has failed his extubation trial and we were back to the drawing board.
We were no where close to going home…
suvirstory.com 