The phrase ‘It’s a boy‘ may not have as much impact as it should when you already know the baby’s gender. But it doesn’t fail to hit you that you have a little man in your life now, someone who, in a few years, will share everything with you; from clothes to shoes, perfumes to watches, nothing would be off limits. The first time I laid eyes on him, I couldn’t help but wonder how much he looked like my now 20-month old daughter when she was born. Lying down in his cot as the nurse vacuumed the residual amniotic fluid from his lungs, he looked so peaceful, so perfect, his dark brown eyes darting around the room taking in the sights of a world alien to him. If I had any idea how long I would have to wait to get him into my arms, I would have picked him up right then. This is my son Muhammad’s story, his ordeal, and to capture the true essence of the moments, part of this story is narrated by him; if he could speak/write, this is what he would have said.
Sunday, September 2, 2012 – 12:20 AM
MUHAMMAD: And then there was light. After spending almost nine months in total darkness and an eerie red glow waxing and waning in intensity, I could never have envisioned light to be something so beautiful, so extraordinary. Then I laid eyes on her for the first time. Oh how beautiful she looked in those blue scrubs. She snipped off the umbilical cord, severing my physical connection to the only person I really felt connected to and handed me over to another lady. Turns out, these were just the doctor and the nurse, my first and second crush. The lady called ‘Mom’ was the real deal; my first true love. The moment I heard her voice, I knew she was the one carrying me for the last nine months; oh how I longed to get into her arms. There was another familiar voice in my ears which I now associate with ‘Papa’; having him stand close to me was comforting.
I was whisked away to be cleaned up, and was placed in a baby warmer where all the basic diagnostics were completed. I passed every one of them with flying colors save one. my glucose levels were very low, so low that the gluco-meter couldn’t detect the level and displayed LO instead. After another prick, my glucose levels finally graced us with their presence, a mere 22 mg/dl (normal neonates have about 60 to 150 mg/dl). A baby specialist came to check everything and said the glucose levels should become normal after I drank some of my mom’s milk. Only then was I taken over to my mom; oh how I remember the first time she wrapped me in her arms. After mom had fed me, the nurse took me back to the baby warmer for another prick; enough was enough so I cried, like REALLY cried my heart out. The glucose levels hadn’t improved so the baby doctor told papa that he was transferring me to the NICU, a special place for special babies.
Sunday, September 2, 2012 – 10:30 AM
YOUSUF: The neonatologist who took my son to the NICU last night had handed the case over to another specialist, the head doctor working in the NICU, Dr. Raza. After Dr. Raza had completed his rounds, he called the parents waiting anxiously outside into the NICU one by one. When my turn came, I went in with wobbly legs, waiting to hear the doctor’s verdict. This was the first time I was meeting Dr. Raza and wasn’t sure how good a doctor he really was; he was (is) the best.
“What is wrong with my son, Doctor?”, I asked.
Dr. Raza said, “He has what we call Hypoglycemia. We have started Muhammad on a steady glucose IV and have been increasing it in slow doses, but his hypoglycemia, his low sugar levels, are not coming up significantly. There’s only so much we can do with an IV as there are limitations to the dosage.”
With a frown, I asked, “Why is this happening?”.
He said, “Could be a number of reasons; may be genetic, may be metabolic; it’s too soon to say without running more tests”.
I’m an avid lover of mysteries and this was one I wasn’t enjoying. “When will he get better?”.
Dr. Raza thought for a moment, then replied, “About 3 in 1000 babies are hypoglycemic and in most cases, this hypoglycemia is transient, i.e. it goes away after a few weeks or months after the baby’s birth. In some rare cases, however, this becomes chronic. From what I can see so far, your baby seems to have the transient kind. He has no apparent symptoms and seems to have good reflexes.”
“What is your next course of action?”.
“We might need to put in a central line, a tube through his umbilical cord to give him the amount of glucose he needs.”
“Doctor, please keep me posted on his progress.”
“I will; don’t worry, everything will be fine. I have asked Dr. Qurat, an endocrinologist, for a consult later this evening to rule out some of the possibilities and suggest a possible course of action”.
I thanked the doctor, went in to take a look at my sleeping baby and left the NICU.
Monday, September 3, 2012 – 10:00 AM
MUHAMMAD: My sugar levels were nowhere near normal and I was Nil per os (NPO – no milk), taking my nutrition from the IV fluids only. My lips were parched and cracking, and I yearned to be in my mom’s arms. The people here were taking good care of me and I really felt fine. Why were they keeping me away from her?
Out of the corner of my eyes, I say papa coming in to see me. It made me feel safe seeing him here but only moments later, the nurse came and asked him to leave, saying that the doctors were coming in for rounds and that they were putting in a Central Line. He left the room with helplessness in his eyes; I could feel his love and sadness cross over to my side of the incubator but there was nothing else he could do. He walked away.
Papa had already consented to this procedure but little did he know how painful it would be. I cried loudly the first time the doctors inserted the central line. It took them a good half-an-hour or so and they shoved in a pacifier in my mouth to shut me up. A portable X-ray machine was brought in to see if the line was in properly; turns out it wasn’t. The re-positioning took another 45 minutes or so. It hurt so bad.
Monday, September 3, 2012 – 12:30 PM
YOUSUF: I had been waiting outside the NICU for a good 2 hours or so and there was still no news. They had told me the procedure would take about 30 minutes or so, so what was taking them so long?
Finally, the doctor called me in; seemed like they were done with the rounds.
Dr. Raza saw me and smiled, “Hi Yousuf. How are you doing?”
“I’m fine doctor. How is Muhammad now?”, I inquired.
“He’s doing better; the central line seems to be working and we will keep repeating his tests every hour or so till his glucose levels are stable. Dr. Qurat, the endocrinologist, visited yesterday and suggested a few tests for his insulin levels. Once we get those back, we will be in a better position to discuss treatment options. In the meantime, we are focusing on stabilizing his glucose levels.”
“Thank you so much doctor. Can I go see him now?”
“You can see him anytime you want. Take care.”
MUHAMMAD: Papa came to visit me again. Where was mom? I wanted to see her so badly.
YOUSUF: After my meeting with the doctor, I went straight to my wife’s ward. She was doing much better; the codeine (and all the antibiotics in her system) seemed to be working its magic.
“It’s been almost two days and I haven’t seen my son. Please take me to him.”, said my wife.
“Let’s wait for the doctor to come check you and I will take you there on a wheel chair; the NICU’s almost at the other end of the hospital.”
“She already came and did her check-up. Everything’s alright. Have they started giving him any milk? Can we go now?”
“No. He’s still NPO. His sugar levels are getting better though. Let me get you a wheel chair and we’ll be on our way.”
Monday, September 3, 2012 – 3:30 PM
MUHAMMAD: I couldn’t contain my joy. She was finally here to see me. I remembered her face from the first time I saw her; the most beautiful woman in the world. She asked the nurse if she could touch me and the nurse said yes. After a complicated hand-sanitizing routine, the nurse gave mom the go-ahead. She open one of the incubator windows and caressed my cheek. It is difficult to put into words how good that felt. The warmth of her hands gave me strength, and I wished I could escape my plastic prison and run straight into her arms. She cried, joy and sadness reflecting in her tears. She read a few verses from the Qura’an, said a silent prayer and hesitantly left me alone.
YOUSUF: They called me to the NICU later in the afternoon to tell me that Diazoxide, a drug required for Muhammad’s treatment, wasn’t available in the hospital and that I had to get it from another pharmacy outside.
I walked to the parking lot, sat in my car and drove to the nearest pharmacy. Turns out, this was a very rare drug and would only be available at a specific pharmacy, about an hour’s drive from where I was. While driving there, I had to go through a politically sensitive area of Karachi only to find that hundreds of protesters had blocked the entire road. I had to retrace my footsteps, or should I say tire tracks, and find an alternate route.
After reaching Kausar Medico, the pharmacy in question, I handed over the prescription to the receptionist.
After carefully inspecting the prescription, he said, “Let me check if this is available.”
Upon hearing those words, my heart sank into the abyss of negative thoughts. Several what-if scenarios played out in front of my eyes.
While I was praying, I heard the receptionist say, “We have this in stock. How many pills do you need?”
“Give me 15!”, the relief in my voice evident.
With the pills in hand, I left the over-crowded Kausar Medico; no wonder this place was so popular.
After reaching the hospital, I handed over the pills to the doctor on-call and he sent them straight to the pharmacy for making a liquid suspension.
Tuesday, September 4, 2012 – 2:30 AM
YOUSUF: It was yet another restless night, with sleep nowhere in sight. I picked up my phone, and with butterfies in my stomach, called the NICU for the latest 2-hourly glucose test result, a Reflo, as Muhammad’s nurses called it. Thankfully, his results were getting more and more promising, with very few low readings. I thanked the lord for his intervention and went back to bed. I had the same late-nightly routine throughout Muhammad’s stay there, calling the NICU three, even four times. The on-call doctors and nurses were phenomenal and patiently answered all my queries.
Tuesday, September 4, 2012 – 10:30 AM
YOUSUF: As I walked into the NICU counselling room, Dr. Raza greeted me and said, “Muhammad’s reflos have been stable throughout the night. Dr. Qurat visited him yesterday and after reviewing the tests done so far, suggested it is most likely hyperinsulinemia. His pancreas is producing much more insulin than normal so he gets low on glucose. This is one of the best outcomes we could have hoped for as this is very much treatable with a drug called Diazoxide. There are a few side effects of this drug but we can control them using other drugs if need be. The main one is water retention in the body.”
“I have already gotten Diazoxide from Kausar Medico and handed it over to your staff for making a suspension. What if the drug doesn’t work?”
“Then we go ahead with a surgical procedure called a pancreatectomy. We remove part of the pancreas so that the insulin levels in the body return to normal. But you don’t need to worry about that just yet. Lets pray that the drug works so that it doesn’t come down to surgery.”
“So when do you plan to start him on the medication?”
“Yes. We have started giving it to him from today. Since his reflos are stable, we are also tapering down his glucose dosage gradually to see if he can produce it on his own with support from Diazoxide. We have also started him on infant formula for the time being through a feeding tube. Can you arrange for the mother to express her milk and send it to us? We’d prefer Muhammad taking his mother’s milk rather than the feed he’s currently on.”
“Yes, I can get that done. Thank you doctor.”
The rest of the day his glucose remained stable, and there were no low readings going forward. I kept going back and forth from my wife’s room to the NICU, getting as much milk I could to him as possible. They tapered down the glucose and eventually got rid of the horrid central line, a real positive sign for us. He was back on IV glucose. My wife was discharged in the evening.
MUHAMMAD: Getting rid of the central line was a true blessing and I was finally rid of the constant discomfort. This was not the only discomfort though. I was pricked in the heel for a glucose test every couple of hours. Moreover, the doctors had poked all veins in my body to find a suitable place for inserting a cannula; my arms, my legs. I had heard that if they didn’t find a suitable place on my limbs, my scalp would be next. I prayed my predicament would end soon. Ouch!
Papa and mom came to see me and that was some consolation. I was blissfully asleep throughout their visit.
Wednesday, September 5, 2012 – 10:30 AM
YOUSUF: The morning consultation went well; the central line was out and that made me happy. Luckily, my wife and I were in for some good news. Muhammad’s glucose levels had finally stabilized. The would finally wean him off the IV and move him to the step-down unit with my wife by 5:00 pm if things went well.
MUHAMMAD: Things were looking up. I heard the nurses talking, saying that they were moving me in with my mom. That was music to my ears; I’d finally be in mom’s arms. Papa was an OK guy too; I’m sure I’d warm up to him in time.
Wednesday, September 5, 2012 – 3:30 PM
YOUSUF: The call we were all waiting for finally came in. Muhammad was being shifted down, and there was no IV attached. Apparently, the drug seemed to be working fine. I was asked to bring my wife to the NICU where we were to accompany our son to the step-down unit.
My wife had already packed her stuff so all we had to do was grab her bag and head down to the car. We reached the hospital around 4:30 pm and moved Muhammad to the step-down unit. Our son was finally with us. A couple of days more and we’d be taking him home.
Tears of joy streamed down my wife’s face as she held, really held Muhammad for the second time ever. The nurses came in and taught her how to feed our son using the feeding tube. Since the step-down was a female-only zone, I had to leave right away. I made sure my wife and son were comfortable and left for home.
MUHAMMAD: I was with the love of my life. Life couldn’t get any better, now that papa was out of the way.
Wednesday, September 5, 2012 – 8:30 PM
YOUSUF: I was in constant contact with my wife and his initial reflos were within the normal range. Things took a sharp turn around 8:30 PM when his reflos started deteriorating. The nurses told my wife not to worry. At times when a baby was taken off IV support, it took his body some time to adjust to the new routine.
No matter how hard I tried, I couldn’t go to sleep; I couldn’t go to the hospital either as the visiting hours were over. At around 11:00 PM, the doctor restarted his IV fluids so as to normalize his falling sugars, but to no avail. My wife finally called me around 3:30 AM and said that they were moving Muhammad back to the NICU.
Thursday, September 6, 2012 – 3:30 AM
MUHAMMAD: I was not well; not by a long shot. Papa came rushing to the step-down unit and helped mom pack up her stuff. I was put in an incubator and taken straight back to the NICU, with my IV fluids in tow. The constant beep-beep of my stats monitor was back; at least something was familiar here in this otherwise alien place.
YOUSUF: We waited outside the NICU for quite a while before finally heading out. My wife wasn’t completely well and needed her rest, so I decided to take her home. I was on the phone talking to the on-call doctors about Muhammad’s condition throughout the night.
Thursday, September 6, 2012 – 11:30 AM
MUHAMMAD: The doctors spent the whole day stabilizing my glucose levels; I missed the warmth of mom’s warm embrace. Papa came in for the doctor’s consult and after he was done, came in to see me. I was starting to like this guy.
YOUSUF: The discussion with the doctor couldn’t have been more positive.
Dr. Raza said, “Yousuf, you don’t need to worry about Muhammad. These things happen and are not uncommon. Insha Allah he’ll be out of here within a couple of days.”
“Thank you so much doctor. For a while there, we were really worried.”
“Don’t be; the medication is working and that’s a great sign.”
Sunday, September 9, 2012 – 12:00 PM
YOUSUF: Muhammad had been doing well. I had been bringing my wife in to feed our son every day for the past few days; his glucose levels were better and I was hoping for some positive news. The news came as I was waiting for my one-to-one consultation with the doctor; I overheard two nurses talking:
“Have you started the discharge procedure for Muhammad, baby boy of Yousuf?”, the first one said.
“I will once I get the doctor’s go-ahead.”, the other replied.
Now that was some real good news and I went to the consulting room with a smile. The doctor told me the exact same thing. They had taken Muhammad off the IV 24 hours earlier and his reflos were well within the normal range. They were discharging him into our care with his Diazoxide medication, that could be easily administered at home.
Sunday, September 9, 2012 – 5:28 PM
MUHAMMAD: I was finally going someplace called home. Apparently, that is where I was supposed to live with Mom and Papa. Turns out, I had an almost two-year-old sister too. Papa took out his camera and videoed the entire thing on his camera. My sister’s reaction was somewhere between shocked and amused. I could see a potential sibling rivalry culminating. Along with my sister was everyone else, people I did not know existed, people I would later learn to love/hate as my extended family. Amidst laughter and smiles, we drove towards home.
Sunday, September 9, 2012 – 9:00 PM
MUHAMMAD: For the first time in 9 days, I finally felt happy. Unfortunately though, papa had to prick me every six hours to monitor my glucose levels; I know it was for my own good. I could feel his hands shaking and his body cringing every time he pricked my tiny heels.
Monday, September 10, 2012 – 11:00 AM
YOUSUF: Today was my first day back to the office. I had taken a seven-day emergency leave to attend to Muhammad. As I was going through the seven-day back-log of emails, requests and approvals, I heard my phone ring. It was my wife:
“Assalamoalaikum! How are you?”, my wife said.
“Waalaikumussalam, I’m good. How’s Muhammad doing?”, I asked.
“Well, that is why I called you. He seems to be running a slight fever. Even though it’s not too high, it still bothers me.”
“Let me call the NICU and I’ll get back to you.”
“OK”, she said as she disconnected the phone.
I called the NICU and explained the situation. They asked me to treat it with Paracetamol and I passed on the same message to my wife. The fever persisted on Tuesday too.
Wednesday, September 12, 2012 – 10:30 AM
MUHAMMAD: I was still running a very low fever which seemed to subside for 4-5 hours following each dose of Paracetamol. I had also developed some flu-like symptoms so my parents took me to the family doctor. He checked me out and gave me a clean bill of health, saying that my lungs seemed a little congested because of the flu.
He said, “Don’t worry. If his fever goes beyond 100 degree centigrade, come back. Otherwise, you can continue giving him Paracetamol.”
We thanked him and papa drove us home before going back to his office.
Thursday, September 13, 2012 – 10:30 AM
YOUSUF: The fever, even though quite low, wasn’t gone altogether. Moreover, Muhammad seemed to have vomited a bright yellow fluid unlike anything we had seen before. I was in the office when my wife reported this to me.
“How much did he vomit?”, I asked.
“The first time it was about a teaspoonful and the next time around, it was about a half of the previous.”, she replied.
I called the NICU again and they told me not to worry as the quantity of the vomit was insignificant.
When I reached home that evening, he had vomited again; same color but a slightly larger quantity. I took him to a child specialist. He said that my son’s lungs were filled up and he may require IV antibiotics to clear up his infection. He also added that this should be done only if the fever goes beyond a 100 degrees or if the baby isn’t feeding properly.
Still not satisfied and more worried than ever, we took him to another child specialist. He repeated the exact same thing the other doctor had, so somewhat placated, we took him home.
Friday, September 14, 2012 – 10:00 AM
MUHAMMAD: I had a restless sleep. Mom noticed I was having slight difficulty breathing and hadn’t taken any feed since 5:00 AM. There was, however, no sign of fever. She told this to papa and we were immediately on our way to another doctor.
This child specialist advised papa to take me straight to the ER and start the antibiotics. They left the hospital and took me to where I was born.
Papa said, “Dr. Raza has his clinic hours today. Maybe he will take a look at Muhammad. I’d prefer to get his opinion before starting him on anything.”
Mom replied, “I agree. I just hope we can find him. He did drink some milk so I think he’s a little better.”
“Yes. Physically, I can’t see anything wrong either. Even if we have to get him the IV antibiotics, I would rather that he have them at Dr. Raza’s hospital.”
YOUSUF: We reached the hospital and were in the waiting area. Dr. Raza wasn’t present at the clinic so we asked one of his other colleagues to take a look. We were waiting for our turn in the adjacent area and Muhammad started crying. My wife, thinking he was hungry, took him to the feeding room. When she came out, I noticed that he had turned pale. Thankfully, the doctor called us in for Muhammad’s examination.
“I think he is getting low on oxygen; we need to rush him to the ER immediately.”, the doctor said.
I took my son in my arms and starting running towards the ER, my wife and daughter in tow. Once in the ER, the nurse immediately took Muhammad him and put him down. He was crying a lot so I told the nurse to change his diaper; he always cries when he wants a diaper change.
The doctors plugged him to a monitoring device and took some blood samples for labs. His oxygen levels were low and his heartbeat was a bit slow, but the doctors seemed OK with it all. Suddenly, Muhammad turned blue and the monitor started beeping erratically. The doctor pulled out all the leads/electrodes and rushed him to a cordoned off area.
I couldn’t believe what was happening in front of me. My wife had a shell-shocked look on her face and we instantly started praying for Muhammad’s safety.
“He’s in apnea and seizing; bring in the crash cart now!”, one of the doctors screamed.
I had watched too many medical shows and read too many Robin Cook books to understand what was happening.
“O2 stats dropping; pulse is faint. I’m starting CPR.”, another voice from the room.
The nursed pushed the cart into the room. I covertly pulled the curtain aside watched the horror unfold.
“Give me the paddles.”, then after a brief wait, “Charging….. Clear…. Still no pulse….. Charging…. Clear….”
Electricity shot through Muhammad’s tiny body. I couldn’t get a clear view as he was surrounded by doctors and nurses.
“Give me some epinephrine.” Apparently, this wasn’t enough so she asked for another injection, followed by another.
“I have a pulse.”, said one of them, “Get me an ambu bag; we need to intubate him.”
Even though I couldn’t see Muhammad, I had a clear view of his monitor. His stats started improving as soon as they got him intubated; they were making him breathe as he couldn’t do it on his own.
“He’s stable. Let’s start him on Cefotaxime, Amikacin and Morphine, and prepare to move him to the NICU.”
My whole body was shaking as I went to my wife and told her not to worry. My own words felt empty, hollow, and she could sense that in the way I delivered them. I just had to console her, knowing that Muhammad wasn’t still out of the woods, not unless he started breathing on his own.
As we were waiting for the incubator to transport Muhammad to the NICU, all the doctors and nurses, save two, left the room. We were allowed to take a look at our son, who was still pale, but better than before. I left my wife with him and walked to one of the nurses.
“How long was it before you were able to revive him?”, I asked.
“About 7 minutes”, she replied.
From what limited medical knowledge I had, I knew that prolonged oxygen deprivation could cause brain damage, and that 7 minutes was too long a duration. It only added to my agony, but I knew deep down that worrying about the future or what may or may not happen was useless. After all, statistics and averages were only man-made numbers, and that it was Allah who allowed people to beat the odds every day; I stopped thinking about it and drew my strength from my faith.
Th incubator finally arrived and Muhammad’s ambu bag was replaced by a mechanical ventilator. His stats starting dropping as soon as they moved him to the ventilator. Turns out, the oxygen in the ventilator tubes wasn’t flowing properly, so after a few adjustments, the nurse was finally able to transfer Muhammad to the incubator.
The walk to the NICU was the longest of my life; I had my eyes glued to the monitor the whole time. Every time the stats on the monitor dropped a little, so did my heart. I just prayed that he’d reach the NICU in a stable condition. After what seemed like ages, we finally reached the NICU. We were asked to wait outside while they set Muhammad up.
We had to wait for almost an hour before we were allowed to see Muhammad. The color on his skin seemed to be back. I could see tubes from the ventilator running to his mouth and three different IVs plugged into a cannula placed on his foot. My heart went out for him as there was nothing more I could do for him, besides praying. It was late in the evening when I took my wife back home so she could (try to) rest.
We kept calling the NICU several times throughout the night, each time with a heart as heavy as lead, prepared for the worst. His sugars were still going up and down but the doctor’s first concern was to diagnose what was wrong with Muhammad. One of the nurses called me early the next morning and asked me to bring the bottle of Diazoxide with me.
Saturday, September 15, 2012 – 10:30 AM
YOUSUF: When I reached the hospital, the consulting physician, Dr. Mehboob, had already left after completing his rounds. There were three other parents waiting for their consultation with the doctor but we were told to wait for him to come back.
We went in to take a look at Muhammad. He was sound asleep, maybe because of all the morphine that was being pumped into his tiny body. His chest moved mechanically up and down, his ventilator keeping him on a steady oxygen supply. His stats had been stable for almost 16 hours now and that was a positive sign. The thing that I was really worried about was the extent of neurological damage, if any, and how he would respond once he was awake. Would his reflexes be OK? Would he be normal? I had no answers to these questions; faith was all I could hold on to. I handed over the Diazoxide to the NICU staff and left.
We waited outside the NICU for hours but the doctor never bothered to show up. I had a bad feeling about this new doctor and I wished Dr. Raza were here in his stead. The other parents waiting for the doctor got really angry and demanded to see him.
“Unfortunately, the doctor has already left for the day”, said the receptionist in the NICU.
“We have been waiting for hours. He should have at least notified us that he wasn’t coming today. Such a waste of time. Now who should we talk to about our child’s condition?”, asked one of the angrier parents.
“His assistant, Dr. Abbas will update you. We will be calling you in one by one.” With that, the receptionist went back into the NICU.
Dr. Abbas finally called us in for the consultation.
“We have done an X-ray of his chest and it seems like he has severe septicemia”, he informed us.
“But doctor, how could this have happened? He was fine when you sent him home a few days back.”; I needed answers.
“Well, there are several reasons for this complication. We need to run more tests but seems like he has a severe case of pneumonia.”
“Is it possible that this was due to the Diazoxide you were giving him?”
“It could be, but there is no way to know.”
“When can we expect to see signs of recovery? He was not breathing for 7 minutes. What impact would that have on his brain?”
“Each case is different. Generally, we see a healthy change in the lungs after 48 to 56 hours of antibiotic therapy. As for the brain, we can only wait and monitor him.”
“What about his low glucose levels?”
“His glucose levels are fluctuating. They’re either too high or two low. We give him insulin when his levels go high and Diazoxide when they go low. You should arrange some more Diazoxide as the bottle you have given us will run out within a couple of days.”
With a thank you, I left the NICU. I called Kausar Medico to find the elusive Diazoxide, which proved to be quite a challenge. The only pharmacy in Karachi having that medicine was all out, and the staff there had no idea when the next batch was arriving. After hearing my plea, a kind soul told me to check back in a couple of days; he said he would keep some for me.
Panic mode was now in effect. I immediately called the endocrynologist, Dr. Qurat and asked her if there were any alternatives to Diazoxide. There were none. She graciously arranged 4 pills that would suffice for another 5 days, buying me more time to get my hands on Muhammad’s life-saving medication.
My family came to visit Muhammad a couple of hours later but were not allowed to go in. They could, however, look at him through a glass partition. My mother longed to hold her youngest grandson in her arms; her anguish and worry evident on her face. I led them all home as it was getting very late.
I spent the whole night calling the NICU for updates. Muhammad was strong, a fighter, and was bravely holding his front.
Sunday, September 16, 2012 – 11:30 AM
YOUSUF: Today was a great day for good news. When we went into the NICU, the doctor was waiting for us.
“His lungs have started clearing up and he is partially breathing on his own now. We have started to taper down the ventilator and would extubate him by tonight or tomorrow.”, Dr. Mehboob said. ”We will also be starting him on milk via a feeding tube so it would be great if you could express some for him every few hours.”
We were almost jumping with joy when we heard this. After a quick visit to Muhammad’s incubator, we left for home; my wife had some work to do. I kept running back and forth to the hospital several times a day for the next five days, busy playing the milk man; it was the best job in the world.
Monday, September 17, 2012 – 10:00 AM
YOUSUF: Dr. Mehboob seemed to be in a good mood. “We’re taking him off the ventilator today”, he said. “He will be on supportive oxygen for a few days but even that will be taken off if he’s stable.”
“This is great news, doctor.”, I said.
“His sugars have been consistently high so we have decreased his Diazoxide dosage too. We are also starting him on Lasix to control the water retention side effects of Diazoxide. Overall, the condition of the baby is stable.”
“What about his reflexes, doctor?”
“Oh he cries a lot. That’s a great sign. His sucking reflexes are also great. He’s active overall, looks around; things couldn’t be better.”
“That’s a relief. Thank you Dr. Mehboob.”
MUHAMMAD: After days of sleep, I finally opened my eyes. The surroundings were no more alien and I was not glad to be back here. I cried.
Tuesday, September 18, 2012 – 11:30 AM
YOUSUF: After waiting for about two hours for Dr. Mehboob to complete his rounds, I was finally called in for the consultation.
“Mr. Yousuf. We called in a cardiologist for to check if everything was fine with Muhammad’s heart. The cardiologist heard an unexplained murmur so we got an echo done. Muhammad has what we call a Patent ductus arteriosus or PDA. This is an opening in one of the veins leading to the heart and it closes naturally after the baby’s born. In Muhammad’s case, it has failed to do so.”
I could feel the ground shifting beneath my feet. “Is it dangerous? Can you fix this with medication?”
“Yes! We will try to rectify it using medication after doing a follow-up echo tomorrow but we may have to operate if this doesn’t work.”
I couldn’t bear the thought of having my son go through a surgery. I left, hoping that the follow-up echo would be clean.
“On the bright side, your son is almost off of Diazoxide and I’m sure he won’t be needing any more of it. If he keeps on improving at this rate, he’ll be with you at home in no time.”
I left the hospital with Muhammad’s pending echo on my mind.
MUHAMMAD: I felt better than I had in days. Even though my breathing was still a bit restricted, it was much better than when papa had taken me to the ER. If only they would get rid of the annoying oxygen tube; I longed to snuggle back into mama’s arms.
Wednesday, September 19, 2012 – 11:30 AM
YOUSUF: ”I have some great news for you. We haven’t given Muhammad any Diazoxide in the last 16 hours and he’s maintaining good sugar levels on his own. We are moving him to the step-down unit; please ask your wife to join him. He should be out of here within a couple of days, three at the most”, Dr. Mehboob said as I took my seat in front of him.
“But what about the heart condition you mentioned yesterday? Have you done a follow-up echo?”, I inquired.
“Dr. Babar, our cardiologist, will be doing the echo sometime this evening. We will keep you posted on the results. The PDA doesn’t seem to be a major issue, at least not yet; we just need to make sure it is closing steadily.”
“Please do. I will go get my wife. When will he start feeding directly?”
“He will still be feeding from the tube and only when we have the echo results will I get him to direct feeding.”
“Thank you for everything, doctor.”
Wednesday, September 19, 2012 – 05:00 PM
MUHAMMAD: As I peered out through the incubator window, I could see things passing by; the only constants were Mom and Papa walking in stride with the nurse pushing me to the step-down unit.
I was starting to fall in love with Papa; he was there to support me every step of the way. He made sure mom and I were tucked in properly before leaving us in the step down unit. I wish he could have stayed with us.
Thursday, September 20, 2012 – 11:30 AM
YOUSUF: Dr. Mehboob turned out as incompetent as I had pegged him to be. He breezed into a consultation without first studying the chart.
I asked him, “Has the repeat echo been done, doctor?”.
He said, “No. We will notify you when it is done.”
One of his interns pointed to the chart in the doctor’s hand and said, “Sir, it’s already been done. See? Right there.”
“Oh. My apologies. And why is the baby still being fed through a tube? You should have started to feed him directly.”, the doctor said.
“Because that’s what you told us to do at our last consultation”, I chimed in.
“Oh yes, yes. Sorry for that. You can start feeding him now.”
With that, his posse turned towards the door and left the step-down unit.
What an incompetent jerk!
Friday, September 21, 2012 – 11:30 AM
YOUSUF: Yesterday, one of the interns had notified my wife about a followup echo. I left home and headed to the hospital. As I parked my car, my mobile phone rang; it was my wife. She told me to hurry up to the step-down units as the doctors were about to do an echo.
I ran to the step-down and found a trolley with what looked like an ultrasound machine, but more complex. Dr. Babar, the cardiologist, introduced himself and started on the echo. My wife and I could only stare at the screen as they tried to make sense of the images being displayed on the monitor.
After ten minutes, which actually felt like a stressful day, Dr. Babar turned to me and said, “I have some good news. Muhammad’s PDA issue is almost resolved. Seems like we won’t have to intervene as it is healing naturally. There is, however, one small problem. The left side of his heart is beating a little slower than his right side. We call this Cardiomyopathy. We believe this will also resolve itself within a few months but we need to monitor it nevertheless.”
Out of the frying pan and into the fire, I was hoping for more bad news. “So when can we take him home, Doctor?”
“Actually, I’m discharging him right now. Keep monitoring him though. If he doesn’t feed for more than 6 hours, has difficulty breathing or seems agitated and restless, please call me on my phone”. With that, he handed me his visiting card. ”I’m starting him on some medication for his heart. Hopefully, we’ll see an improvement in the followup echo.”
“I hope so too, doctor. Thank you.”
After the doctor left, I went out to expedite the discharge process.
MUHAMMAD: I was getting sick of this place and the discharge orders couldn’t have come in at a better time. I would have run away a long time ago if I had control of my legs. At least now, I’d be reunited with my family.
I was given a second chance at life and I intended to utilize it to the fullest.
Muhammad’s condition is much better now. His heart seems to be getting stronger and there is no recurrence of the hypoglycemia. His next echo is scheduled for February 2013. He is doing good, Alhamdolillah.
I love it when I get home and he bestows me with that special smile. We spend hours talking gibberish to each other, and it seems like just moments. His sister loves him as much as we do, maybe even more, showering him with random kisses and caressing his hair. I pray to Allah to give both my kids the best of physical and mental health (Aameen).
I’d like to end this with a note to my son.
Muhammad! The only purpose of writing all this down was to help you realize that life is precious, and no matter how hard the tides of time may throw you onto the rocks, you have to get back up and keep on going. Your mother, sister and I love you so much.