Admitted for a Virus: Discharged with a Surgery
My heart sunk into my stomach as I saw my 5 month old son get taken away from me to go into the operation room. My 5 month old son was about to undergo Laryngoplasty surgery and I had to wait in a waiting room while it happened. I was not able to breathe until the doctor came out to tell us that the surgery was a complete success!
October 19, 2018.
My son was sick for a couple of days, he had fevers and cold like symptoms. He was not sleeping at night and in turn dad and I were not sleeping either. Rodrigo Jr. is a great sleeper, wakes up once to eat and continues sleeping, so to us this was very unusual.
Both dad and I were afraid to take him to the hospital because we knew that going to the hospital meant our son would get admitted since he had other health issues. Finally, after three days of zero sleep we decided that it was best to take him to the hospital. He was starting to look extremely tired and extremely fussy all at the same time.
Maybe you think we were being negligent for not taking him sooner. But we were still keeping a very close eye on him at home; giving him medications as well as keeping him comfortable. His Pediatrician also assessed him and concluded that he had a virus and it “should” go away soon. When all our options were exhausted and our son was still miserable we had to make the decision to take him not knowing the outcome.
Rhinovirus was the result of the respiratory panel that was done on Rodrigo Jr. What does that mean? He had a virus; that to the adult it manifests as a cold, but to babies with Down Syndrome it can cause respiratory distress. Rodrigo’s oxygen level was very low and had to be put on supplemental oxygen.
Needless to say, we got admitted to continue monitoring his oxygen levels and to continue managing his low grade fevers.
It was not easy for us to figure out what would happen with our girls at home while our son was admitted. I called off of work and had to find coverage for the next day and maybe longer depending on his stay. Rodrigo Sr., would have to find coverage at his job as well, to make sure he stayed at home with the girls while I was at the hospital.
These were the daily tasks that had to be taken care of while Rodrigo Jr. stayed in the hospital anytime he was admitted. For stays that at times seemed endless, it was not easy.
October 26, 2018.
Oxygen Level is Low
Rodrigo Jr. was getting weaned off of the supplemental oxygen during our stay but his oxygen level would drop every time the nurse took it off. He needed 1 liter of oxygen in order to keep his oxygen level at 93%. Our stay was elongated because of this.
I got to the point where I would argue with the doctors that my son probably never had his oxygen at 100% because I would never check it at home and his doctor would never check it at the office. They continued doing tests and continued “trying” to decrease his oxygen but nothing would come back with results as to why his oxygen level was too low.
Background info: At birth Rodrigo Jr. was born with a small hole in his heart that would “eventually” close up on its own. There was no follow-up done and we all assumed that it was “closed.”
Side note: This is where working in the medical field comes in handy.
While I was at work I remembered about the hole in his heart that “should have” closed. What if it was still open? What if this is why he was not able to have normal oxygen level? (The heart plays a huge role in maintaining the body oxygenated) I immediately got on the phone with dad so he can tell the doctors about this thought.
After dad mentioned this to the doctor, an echocardiogram was done on our baby. Indeed, this was ONE of the reasons why Rodrigo Jr’s. oxygen level was too low. The results of the echocardiogram were: Rodrigo had a hole in his heart that should have closed but instead got BIGGER! What?
The following day the cardiologist came to visit us in the hospital. I had Rodrigo Sr. on speaker over the phone. She stated that the small hole in Rodrigo’s heart got larger and it actually caused a lot of stress on his heart that made his heart walls grow. Combined with the virus, this made it very difficult for him to breathe without oxygen and he would need SURGERY.
The Next Steps
October 26, 2018., we were discharged with supplemental oxygen. We were also discharged with strict infection control and follow-up appointments with the Pediatrician, Cardiologist and Ear, Nose and Throat specialist. Although this was the happiest I had been that week, I was also very sad.
Rodrigo Jr., had a pre-existing condition of Laryngomalacia. That meant that his larynx (voice box) was weak, causing him to have difficulty breathing. Possible reason number TWO for his low oxygen level. His ENT had scheduled him for surgery prior to his admission to the hospital for this virus.
Now that the heart condition had worsen, what was priority, his heart? Or his larynx? If his heart was not better he would need to undergo more evaluations. We saw the cardiologist two weeks after his discharge and his heart was not doing better but the doctor had concluded that the respiratory distress of his weak larynx was causing the heart to work extra hard.
In conclusion, the surgery for his larynx would take priority. Once that issue was resolved we would see the relief on the heart and on him.
November 19, 2018.
We woke up at 4 in the morning to get ready to head out to the hospital. Our daughters were with my mom and my sister. I could not feed Rodrigo Jr., anymore, he had to be NPO (nothing by mouth) prior to surgery. His surgery was schedule at 7am and we needed to be there a couple of hours before.
Honestly I was numb that day, I was not sure how to feel. I knew I was not happy or ecstatic but I was also not mad or sad. All I wanted to do was hold him and kiss him and not let him go. The doctor came and said that he would prefer to do surgery on our son without intubation; That made me happy. He went on to say that if things got difficult they would have no choice but to put a breathing tube down his throat; That made me sad. He concluded by stating that he has done many procedures like this and the success rate was very high; That made me hopeful.
Time to Wait & Pray
Rodrigo Sr., his sister Fany and I sat in the waiting area just looking out into space. I was not sure what was going through their head but I knew that I was feeling devastated. All I saw was families waiting for their loved ones to be done with surgery. I could only wait and pray that my baby was doing well in the hands of the doctors.
The receptionist came to tell us that the surgery was over and the doctor would like to speak to us. What? It has only been thirty minutes! Is it really over? Many questions came to mind as she walked us to another room for privacy.
“The surgery was better than expected, no need for a breathing tube, Rodrigo did amazing!”
As the doctor walked out the room I thanked God for blessing us with great news. I could finally take a deep breath and I hugged Rodrigo Sr., and started crying! All my worries seem to have vanished. Of course our baby was not happy he was fussy and crying a bit but with medication he was able to sleep without discomfort.
The doctor explained to us that his larynx was narrower than what he imagined. So chances of him needing supplemental oxygen were slim to none after surgery.
Since surgery went better than expected we were also discharged earlier than expected. He still needed to be under strict infection control and his oxygen was decreased from 1 liter to 0.2 liters. His surgeon advised us to decrease it even more until he did not need it.
November 25, 2018.
Thanksgiving Day came and we had a lot to be thankful for. Our son underwent surgery and he recovered fast and without issues.
His Atrial Septal Defect
Rodrigo Jr. still has a hole in his heart, that after surgery, showed no changes. The good news about that was that his heart had not gotten worst. We continue to see his cardiologist and all he needs is monitoring.
The initial scare was open heart surgery and thanks be to God he will not be needing that. He can live with this hole for many years and because of its size he will require intervention but when he is older.
Our son is no longer on supplemental oxygen he is able to breathe on room air and his oxygen runs between 92-94%. Before surgery he had stridor (whistling) as he took breaths in and now that is gone. He also had intercostal retractions, which meant the skin on his ribs would sink in while he was breathing, as if he was struggling to take breaths and those are gone as well.
We are extremely thankful! Our son is healthy and his surgery made a lot of improvements in his health. We continue be grateful for our blessings and look forward to our future with him.
We know all is not easy and we have proven to ourselves as parents to overcome many obstacles. We are stronger because our son has shown us strength beyond measure.
He has made us better parents and better individuals. At 5 months he had surgery, and at 9 months today, he is able to smile at us, as if he is thanking us for taking care of him.
Above all, thank you God!