What Matters Most

(I thought I would add this picture b/c she is sooo stinkin cute)

This week Madelyn became very ill. It all started on Sunday when she was a little congested. I kept her home from church in hopes of letting her rest. Everything seemed to be going so well but by the evening Madelyn had become very lethargic and started having trouble breathing. I took her over to the Galbraith’s home to see how Sheldon was faring (he was also very sick). Madelyn walked into their house and laid on the floor with her face in the carpet. She stayed like that until I picked her up. Alicia asked how she was doing and I told her that I thought Maddy was coming down with the same thing Sheldon has. I told Alicia that Madelyn was a little congested and she was having trouble breathing. Alicia looked baffled and said that Sheldon was not having trouble breathing. I didn’t think anything about it because I was sure that Madelyn had the exact same thing. Alicia gave Madelyn some cough syrup and I took her home to put her to bed.

That night she slept perfectly. Just after six in the morning I heard Madelyn crying in her room. I would normally just let her cry herself back to sleep but I thought that I should go and check on her. When I walked into her room Madelyn was standing in her crib, hanging on to the rail, and gasping for breath amidst a very nasty croup cough/cry. I immediately picked her up and tried to calm her. She was burning up. I called for Dan to come in and give her a blessing. After the blessing, Madelyn continued having trouble breathing. It was terrifying to see my little daughter gasping for breath. I ran her downstairs, threw on my coat, and took her outside to the cabstand. There was only one cab there. I told him that I had to go to the emergency room but that I didn’t have any cash. He told me that he couldn’t take me. I became so frustrated I got out of the cab and ran for the parking garage. Luckily I had grabbed my keys and wallet before I left the house. I got Maddy into the car and drove her to the emergency room. Meanwhile, Madelyn is still gasping for breath.

Once I got into the emergency room the nurse took Madelyn and began weighing her (they have to know the exact weight to calculate the amount of medication a infant can have). Maddy was relatively calm at this point but when the nurse took her it made her very upset and her gasping became more desperate and terrifying. The doctor rushed in and ordered epinephrine to be given to Madelyn. They also gave her a shot of steroids into her leg. After Madelyn’s airway was open they gave her a treatment of Albuterol and then humidified oxygen. After they had completely stabilized Madelyn they told me that they had to transfer Madelyn to the Children’s hospital. I asked them why. The doctor told me that he didn’t feel comfortable sending Madelyn home because “how bad she looked when she came in”. They called for an ambulance and transferred Madelyn to the other hospital.

At the Children’s Hospital emergency room, they brought Madelyn back into an exam room. They gave her Tylenol to help with her fever and then asked me why she had been sent here. I told them that although she didn’t look it now Madelyn was very, very sick this morning. They told me that they would watch her for a few hours and then she would most likely be sent home. After about an hour Madelyn began having a difficult time breathing again. Madelyn’s abdominal muscles began retracting, she became striderous, she was having nasal flaring, and she was becoming very restless (these symptoms are all very indicative of a compromised airway). I called for the nurse, who got the doctor, who gave Madelyn more epinephrine. After that the doctor told me that they were going to admit Madelyn. She told me that she was baffled as to why Madelyn required two doses of Epinephrine, “99% of all children with croup do not require a second dose.” (I heard this many times over the next few days.) Madelyn and I then waited for a room assignment. We were in the emergency room at the Children’s Hospital from 8:30am – 1:30pm.While we were waiting, Madelyn was sent for an x-ray. I couldn’t go in with her because I am pregnant so I sat outside and listened to her scream for her “momma” and cry. I was so sad.

At 3pm, in her hospital room Madelyn began having trouble breathing again. The doctor gave her another dose of epinephrine to open her airway. Later the doctors came in and told me that Madelyn’s x-ray revealed that she her trachea had become very narrow. The findings were very indicative of croup but they could still not understand why she was requiring so much epinephrine. Two hours later Madelyn had trouble breathing again, she was given another dose of epinephrine. Later that evening Madelyn began having trouble breathing again and they gave her more Epinephrine and another shot of steroids.

Madelyn had a very difficult time sleeping that night. She was crawling all over the crib (in her sleep) and breathing very heavily. Her heart rate was close to 200 (an effect of the epinephrine). She was also frightened when the nurses and aides came in to check her vitals. She would call for me. I would crawl into the crib with her and she would cling to me until they left. I then had to soothe her back to sleep and anxiously wait for the next time she would call for me.

Around six in the morning Madelyn began having trouble breathing. She began coughing, gagging, gasping, and sucking in each breath. I crawled into her crib and held her (her back was on my chest). I called for the nurse (who never came) and began rubbing Madelyn’s chest. I told her that she had to breathe, I told her this over and over again. I tried to calm her. She was sweating profusely. Her heart was pounding in her chest, I could feel it with my hand. I continued to rub her and soothe her whilst I silently cursed the very slow nurse. After what seemed like 10 minutes, Madelyn’s eyes rolled back into her head and her body went completely limp. She had passed out. Her breathing went back to normal and she slept for nearly 15 minutes. (Every time Madelyn received the epinephrine she would immediately fall asleep but she only passed out twice during an attack, this was one of those times. The other time was on Monday but I cannot remember the specifics.) An hour later the doctor and new nurse came in. (The shift had changed, I guess that is why the other nurse never came in. I would have just left and got someone but I was too afraid to leave Madelyn.) I told them everything that had happened and they told me that they were going to put her on continuous steroids and that she would need to stay at least until tomorrow night.

Since she needed steroids she had to get an IV. They called her into the procedure room and laid her on a table. They wrapped her entire body in blankets to keep her still during the procedure and had me talk to her to keep her calm. She began crying and saying “all done” (something that she says when she no longer wants to do something). It was hard to watch.

Madelyn required epinephrine 4 more times throughout the day to keep her airway open. (This is one of those “And my father dwelt in a tent” sentences. The sentence itself is so short and yet it says so much.)

Later, the doctor came in and told me that Madelyn would have to be switched to the ICU. They originally thought that Madelyn should go to the intermediate care unit. However, after further consultation they thought that she should go somewhere where they were better equipped to take care of someone with her symptoms. They did not, however, want to transfer her until the Ear, Nose and Throat (ORL) doctors came to evaluate her. ORL was set to come in the afternoon but did not come until 9pm that evening. The regular doctors had previously explained to us that Madelyn’s x-ray, although nearly consistent with croup, had shown an asymmetry on her trachea that was not consistent with croup. They suggested that since Madelyn already has two hemangiomas on her body (one on her face and one on her buttocks) that she might have one in her throat. They were concerned that this is why Madelyn was requiring so much epinephrine.

At 9pm, the ORL doctors came in and explained to us that they were going to take Madelyn in for surgery in the morning. They wanted to place her under general anesthesia and put a small camera through her mouth and feed it into her trachea and the very top of her lungs. They wanted to make sure that this asymmetry wasn’t a hemangioma, tumor, mucus plug, etc, etc, etc…

Needless to day, I did not sleep very well that night (well, I didn’t sleep very well any night). At 2:30am the nurse woke Maddy up to give her some steroids. Madelyn was so thirsty and I had to get her some apple juice. The doctors wanted her to fast for surgery after 3am so I tried to get her to drink a lot. I woke up at 4 am and vomited. Then I vomited at 6 am. Then again at 8am. Madelyn woke up at 7 and began begging for a “baba” (i.e., bottle). It was so sad to hear her hoarse little voice asking for something that I could not give her. She begged until she went in for surgery. At 9am they sent us down to the OR. I threw up again.

Madelyn was so sweaty and lethargic. I held her and waited for her to leave to the operating room. The doctor came in and told us all of the risks of the surgery. After Dan and I heard all of the horrible things that could happen to her (including death {very, very unlikely but hearing it somehow made the possibility very real to us}) Dan looked at me and asked me if we really wanted to do this. I said yes.

I had planned on being there when she went under the anesthesia but at the last second they asked if I was pregnant. I told them that I was. The anesthesiologist told me that I could not go with her. Dan went instead. I got out of her crib and Dan got in. He tried to sooth her but she began crying for “momma” over and over again. I walked them down to the operating room and was turned away. I heard my little baby calling for me and it broke my heart. I went back into the recovery room and waited for Dan. I broke down. I began crying in a desperate, pathetic sort of way. I knew that the surgery was not very risky but I could not get the words “tracheostomy, breathing tube, and death” out of my mind. What had I done to my baby? How could I send her off to something like that?

A few minutes later, Dan walked in. The nurse led us to the waiting room and I continued to cry like a baby. Nurses would walk by and ask if anything had happened during the surgery, I told them no, that I was just being a baby. Dan told me that watching Madelyn go under the anesthetic was the hardest thing that he ever had to do. He told me that Madelyn was crying for me over and over again. The last thing that she muttered from under the mask was “momma”. He thought to himself “what if this was the last time I ever saw my daughter?” He said that is was so sad.

A half-an-hour later they came and told us that the surgery was over and that the doctors would be coming to explain everything to us in a few minutes. The surgeon came and said that everything went well and that there was nothing in her trachea. What a relief! He said that she must just have a very bad case of croup.

We were able to go back a few minutes later to see Madelyn. She was lying on a nurse’s chest. When she saw me she called for me. Her voice was so hoarse, so frail. I picked her up, I have never felt her so lethargic, and placed her against my chest. Then she wanted Dan to hold her. After a few minutes I crawled into her crib and Dan placed her on my arm. She fell asleep and we were wheeled back up to our room. When we got there, I threw up. I was so sick. My entire body was racked with the pain of nausea. I am pretty sure that this feeling was compounded by the stress of the surgery. I have never felt worse. Dan told me to go and take a shower. Which I did, it was a great relief. When I came back Madelyn was calling for me. I got into bed with her and we both fell asleep for about 2 hours. When I woke up I was extremely nauseous. I threw up again.

The rest of the day was very uneventful in terms of her breathing. Madelyn was completely lethargic, laid in her crib watching cartoons, and drifted in and out of sleep. I had noticed that they had switched her IV from her hand to her foot. I threw up two more times that afternoon.

That night was very uneventful. I had the best nurse who told the nursing assistant not to take Madelyn’s blood pressure and temperature every four hours (a routine that had been in place since we got there). Because of this, Madelyn was able to sleep uninterrupted (every time a nurse or assistant would wake her she would be terrified). She did wake up several times because she had developed a rather congested cough the day before. But other than that she did very well.

I was extremely nauseous all night long (and the following day). I had to eat every few hours to settle my stomach. The next morning they told me that unless Madelyn had trouble breathing during the day she would be able to go home that afternoon. By 4pm, we were discharged.

She is doing much better. She couldn’t walk very well when she first came home. She fell several times, as she had to train her muscles to work the same way that they did before. She was shaky and unsteady Thursday evening. Yesterday and today has been so much better. She is back to her silly little self. It is so good to see happy and playing again.

She still has a very congested cough, she is on antibiotics and Prilosec, and she won’t eat. Yesterday she ate a few kidney beans and cheese, but she threw them up sometime last night while she was sleeping. I went in to get her this morning and she was lying in a puddle of vomit (with undigested beans and cheese). I am sure that this will get better with time. She has been through a lot and as long as she is drinking the doctors say that she will be fine. They have reassured me that her appetite will come back.

I cannot tell you what it was like to see my baby not move for 4 days - To see her sweating profusely and extremely lethargic - To see her not being able to breathe - To hold her frail little body while it fought off this virus. It was a defining couple of days as a mother. I am so grateful for technology, for medicine. It helped my little baby survive these last few days. I am crying even now as I write this. I am usually very strong, I have very good coping skills, but this was so hard. Too hard. I have cried several times since I have come home. I am overwhelmed with stress. I am so tired. Most of all I am overwhelmed with gratitude. My baby is safe, my baby is home.