For all you "Lost" fans--Seth has dubbed the following "The Incident." WARNING: This post is extremely long. Skim as you desire. Or read Seth's (boy) version in the post to follow.
FYI, look for links throughout for explanation on some of the more "technical" aspects of the story.At 8:30 Sunday night I took Benjamin to the hospital. At 11:30 Tuesday morning we got out of the hospital and began to re-think life. To an even greater depth we have realized that Benjamin has some significant challenges, but that doing what we must to deal with those challenges is a small price to pay for our precious little guy.
But I'll return to the beginning of this story.
Last Friday morning the kids and I packed up the van and made the three hour trek to Seth's sister's house in the Nashville area to spend a few days with them while Seth worked to finish the first defense draft of his dissertation for his September 2
nd deadline. We planned to return to Louisville the afternoon of the 2
nd to celebrate this huge milestone with Seth.
All day Sunday
Benj seemed to be coughing more than normal. By evening I was growing more concerned as the dry, tight cough became almost continuous. After dinner we went to a nearby playground and his coughing seemed to get better. However, when we returned home he began to cough again and complain that he was "doing hard breathing," his phrase for needing a
nebulizer treatment. His complaining quickly became very agitated crying. He told me several times, "I can't breathe!" His mounting hysteria, alternating with moments of sudden sleepiness where his eyelids would suddenly become "heavy" and his body would go semi-limp, scared me. I prepared a breathing treatment for him as fast as I could. As soon as I started the
nebulizer I called the pediatrician on-call with our group. He recommended that I take him to an urgent care so they could make sure his oxygen levels were
ok. Meanwhile, Benjamin continued to cough through the treatment with no change in the sound or intensity. After the treatment was over he quickly became very upset again, even to the point of throwing himself on the ground, writhing as though in great pain. A minute later he lay limp and listless on the floor as I tried to finish putting his pj's on. I picked him up and laid him on my bed where he fell asleep so immediately it almost seemed as though he had passed out. I told my sister-in-law I was going to have to take him to the emergency room.
I left Talia watching Charlie & Lola with her cousins, explaining to her that Mama had to take Benjamin to the doctor and that Uncle Phil would put her to bed. She was unconcerned with this unusual procedure and gave me a hurried kiss without comment. We packed Benjamin and Leila (who would soon need to nurse) up in the van and I followed my sister-in-law to the local hospital emergency room.
Soon after we arrived Benjamin was evaluated in triage and taken to a bed separated from the other emergencies of the night by a few curtains. He was almost immediately placed on oxygen while various doctors and nurses evaluated the situation. Over the next few hours Benjamin's oxygen levels were monitored while his chest was x-
rayed for pneumonia and his blood was drawn for labs. He was given a steroid shot, some antibiotics for ear infection, and an hour-long breathing treatment during which he fell asleep. Around 11:00pm we thought things were going fairly well and expected that we might return home before midnight. My cell phone was not getting reception in the basement-level room so I stepped out to call Seth and tell him things were going fine. After a long period of waiting (for what we thought might be the x-ray results) the doctor came back in and announced that Benjamin's oxygen levels were not as high as he would like to see. He called in a pediatrician to evaluate. Some time later the pediatrician came in and after some questioning and examination started an IV and
nasal cannula and told me that he wanted to admit Benjamin overnight--he was still working too hard to breathe. At this point he was considering transferring
Benj to Vanderbilt Children's Hospital, but ultimately decided he could remain at the current hospital for the time being.
Around 12:30am Vicki went home while I prepared to spend the night with Benjamin. We were moved to a room on the pediatric floor a little after 1:00am where Benjamin was given another breathing treatment. Throughout the various procedures, starting with the oxygen tube and IV in the ER, Benjamin was very upset. At least twice he cried hard for over an hour, saying "no, no, no" over and over. Finally, after we were in our room for over an hour, Benjamin was able to calm down and go back to sleep. The nurse helped me set up the cot for me to sleep on and I laid down, exhausted and ready to sleep. Just a few minutes later she returned to the room saying that Benjamin's oxygen saturation was below 94% and, following the doctor's orders, they were going to need to transfer him to Vanderbilt. She told me she was going to call an ambulance and start the paperwork for the transfer.
Two
EMTs soon arrived to take
Benj, via stretcher, to the ambulance. I was told I would not be able to ride with him as I still had Leila with me. When they picked him up to carry him to the stretcher waiting in the hall, he started screaming and reaching for me. I held him and for the first time the tears welled up in my eyes. I assured him I would follow right behind the ambulance and I would be there when he got to the other hospital. As one EMT gave me directions in case I lost the ambulance the other got down next to Benjamin and began to soothe him. He asked the nurse for a tissue and dried
Benj's tears. He told him that he had a little boy who was his age. By the time we were ready to walk down the hall
Benj was totally calm and even managed to tell the nurse "bye" and "thank you." One of the
EMTs carried Leila's carrier so I could hold
Benj's hand and get him situated in the ambulance. The male EMT rode in the back with
Benj and pointed out several times during the trip that I was driving right behind them.
En route to Vanderbilt around 3:00am (4:00 in Louisville) I was finally able to contact Seth. (My cell phone had no reception the entire time we were in the first hospital, aside from walking outside. Vicki had called him when she left the ER earlier in the night.) I woke him up, but I knew that he needed to hear from me. He was worried by the earlier news that they were keeping us overnight, and even more so when he heard that we were being transferred to a hospital in Nashville (30 minutes away) and that
Benj was in an ambulance. At that point I still wasn't sure how bad things were and encouraged him to at least sleep the rest of the night before making a decision about whether or not to come down.
We arrived at Vanderbilt without incident. I was a bit worried about how, exactly, to go about following an ambulance, but we drove "only" about 80mph and with no siren so I didn't feel too much like an ambulance chaser. Of course I had to park in the parking structure and so expected to have to find
Benj when I got to the ER, but as I stepped out of the elevator I saw the driver of the ambulance waiting for me in the bay. They wanted Benjamin to be able to see me as soon as he came out. The EMT told me he had been totally calm throughout the entire ride, amazingly enough.
There was a team waiting for us in the ER. They immediately transferred him to a hospital crib and began to hook up all his monitoring equipment. When the attending doctor listened to his lungs he told me it sounded like pneumonia. I told him the chest x-ray had come back clear, which he found hard to believe. They started Benjamin on a "4-hour continuous" (breathing treatment). After the initial questions, evaluation, and treatment measures were complete our nurse was very helpful in explaining the concerns they had about Benjamin's condition. First of all his heart rate was very rapid (in the 150's-170's). This was partly due to the
meds he was on, but also due to the fact that his body was working so hard to breathe. Second, his oxygen saturation was too low. While he was on the continuous, of course, he was maintaining 98-100%, but between previous breathing treatments he had only been maintaining 92-95% (the very bottom of the "acceptable" range). Finally, his respiration rate was in the 40's and 50's (
respirations per minute). Later, when he was doing much better his
respirations were in the low to mid 20's so early on he was breathing almost twice as fast as he normally does. This, along with moderate
retractions indicated that his poor little body was fighting hard to breathe.
Around 4:00am things settled down in terms of bustle in the room. Due to lack of space they had put Benjamin in the trauma bay (where they normally receive patients involved in bad car accidents, etc.) so initially there was no place for me to even sit down. They managed to find me a rocking chair so I was able to rest and eventually even fall asleep for a few minutes. At 5:45am Seth called and asked for a status report. I remember telling him I was confused about how serious things were, but I was hoping to be able to talk to a doctor soon. Our conversation was interrupted by someone coming in to check on Benjamin. I was able to call Seth back about 45 minutes later and he told me he was all packed up and was coming down.
At 7:00am they were able to move us to a real room in the ER. The biggest "plus" about this move was that there was a TV which helped keep Benjamin's mind off of the breathing treatment which by this point was really bothering him. Several times in the previous couple of hours he had thrown an all-out temper tantrum about wearing the mask which he is only accustomed to wearing for 15 minutes at a time at home. The respiratory therapist who was overseeing Benjamin's treatment was thoroughly amused at how glued
Benj was to that TV.
Over the next couple of hours the protest over wearing the mask took a backseat to Benjamin's desire for something to drink. Unfortunately we were unable to give him anything to eat or drink as the medication he was on would have caused certain vomiting. They were also still leaving open the possibility that they would need to
intubate (for which he would need to have an empty stomach). I stood by his bed and held him as he cried over and over for water, desperately wishing I could give it to him, aching to comfort him. It seemed as though everything he cried out for I could not give him. He wanted the mask off--It had to stay on. He wanted water--He couldn't have it. He wanted to go home--We had to stay there. His most poignant plea was for his sister. "I want Talia," he wailed.
Sometime mid-morning they took him off the continuous breathing treatment (which he had been on for over 4 hours) and replaced it with oxygen to see how his body would respond. In order for us to be released he needed to be able to go 4 hours between breathing treatments (with good oxygen and respiration levels). After only 30-40 minutes his oxygen saturation was consistently in the 88-92% range, lower than ever, and bordering on dangerous. They put him back on the continuous and told us we would most likely not be going home that day. Various medical personnel also continued to comment that they could hear pneumonia in his lower right lung. Each time I repeated that his chest x-ray had been clear they were shocked but multiple examinations of the x-ray confirmed that there was, indeed, no pneumonia.
By 11:00am I was reaching the end of my emotional strength.
Benj was crying, Leila (who had been mostly in her car seat for hours on end) was crying. Holding Benjamin's hand I sat next to his bed and silently let the tears flow, praying for strength. Providentially, about 20 minutes later my sister-in-law arrived with Talia and 5-10 minutes later Seth arrived. Benjamin was very much comforted by his sister's presence and when Seth arrived
Benj cried for Daddy to hold him, which Seth did despite all the tubes & wires attached to his body. Both Vicki and Seth had brought Benjamin some comfort items (his
blankie, various "friends" with whom he sleeps, movies, and favorite toys). He was glad to see some familiar things although he was able to do little more than hold them as he lay there.
A little after noon Vicki, Talia, Leila and I left
Benj & Seth watching a movie and went home to get some sleep. Just before we left we found out that Benjamin was responding well enough to being back on the continuous that he would be admitted on the regular pediatric floor instead of the ICU.
Once "home" I was able to sleep for most of 4 hours. When I woke up I called Seth and found out that Benjamin had definitely turned a corner! After about 2 hours he was able to go off the continuous. As a result he had been able to have some small sips of water and a couple of hours after that they had allowed him to eat. I could hear a child chattering in the background as I talked to Seth but as I assumed they were still in a double-occupancy room I didn't think much of it. When Seth explained that they had been moved to a private room I realized, "You mean that's Benjamin talking and laughing?!" Aside from moaning and crying he had probably spoken less than 10 sentences since we had entered the ER the night before. Apparently after he ate he had perked right up. I was so profoundly relieved and thankful to hear him playing in the background.
After dinner I packed up a few extra things (Vicki had brought me some essentials earlier in the day) and prepared to spend the night at the hospital so Seth could come home and get some good sleep. (Earlier Vicki, Seth and I had compared notes and found out that between the 3 of us we had gotten a grand total of 6 hours of sleep!) Benjamin had been moved from the ER to the 7
th floor and when I arrived was just being served his dinner. It was so wonderful to see him sitting up in bed, playing with his cars with pink cheeks and a smile on his face. He ate with a little less gusto than normal, but well nonetheless. As Seth updated me on the events of the last several hours I learned that he had been moved from 1 to 2 to 3 hours between breathing treatments and was doing well with the gradual increase. He had also been taken off the oxygen and was maintaining his levels at increasingly acceptable percentages on room air.
After Benjamin finished his dinner and played a little more, we got him ready to go to sleep. He had really only gotten a few hours off and on throughout the previous night and had not napped at all during the day. After brushing his teeth and getting him settled back into bed I pulled the sheet up and we kissed him goodnight. He was asleep only seconds later. After Leila's final feeding of the night Seth took her and left to go home and sleep. I laid down not long after and tried to sleep. At first I jumped up to stand by his bed every time someone came in to check on him. At midnight a respiration therapist came to give him a breathing treatment and was surprised to find that his lungs sounded perfectly clear. Evidently
Benj had developed quite a reputation and she had been told not to expect very much or very quick improvement. She even let me listen to him, commenting, "he's passing air better than I am!" I was encouraged to also find that the monitor was reading 96-98% oxygen saturation. She told me she was going to try to let him go the "magic" 4 hours between treatments. She was able to administer the treatment without waking him up.
After this good news I slept soundly not waking up until, at 7:00, I heard Benjamin whispering, "I have to go potty!" I learned from his nurse that all had continued to go well during the night, they had been able to move him to the 4-hour mark with good results. She promised that if he ate and drank well at breakfast that she would be able to take him off the IV fluids.
Not long after he had finished his breakfast a resident came in to do his morning exam and while he was in the room the supervising doctor came in to tell us he was there to discharge us! By the time Seth arrived with Leila we were packed up and ready to go home. (Talia had gone with Aunt Vicki to work that morning, a perfect option as Vicki teaches 2 year olds at a local preschool.) It took us a couple more hours to actually be able to leave as we had to wait on Benjamin's new medications and the respiratory therapist to teach us how to administer them. He was given a different
inhaled steroid than he had previously been on and the doctor also wanted us to switch from giving him
nebulizer treatments to using a
metered-dose inhaler.
Around 11:30am we were finally able to take our precious Benjamin home, healthy once again. Of course we were still 3 hours from
our home and so we planned to return to Phil & Vicki's to pack up to return to Louisville that evening. Back at the house Benjamin wholeheartedly resumed "normal activity," as his discharge instructions from the hospital indicated he should. He was running around with his cousins in no time, like nothing had happened. We left around 7:00 that evening (8:00 in Louisville) and, due to some traffic and a rest stop for Leila to eat, pulled into our driveway around midnight.
Benjamin is recovering well. We saw his pediatrician Thursday morning who indicated that he was still wheezing slightly and had us resume his
bronchodilator (
albuterol) for 3 more days. Naturally we had questions about what caused this unprecedented asthma attack. Obviously no one knows for sure but all the doctors involved agreed that it was probably a combination of factors. Our pediatrician seemed more in favor of blaming his allergies and asked me to follow-up with a return visit to the allergist in a few weeks to evaluate possible changes in his allergies and needed treatment. The doctor who discharged us at Vanderbilt also told us that at the time we were there they had about 40 respiratory patients, pointing to an environmental cause. Changes in weather and other illness (common cold symptoms) are also common causes of asthma flare-up. All these factors pertain somewhat to this situation and probably all contributed somewhat.
Our next step is to continue our current regimen and get Benjamin completely well. After this we will pursue a visit to the allergist for possible further allergy testing (he has not previously tested positive for any environmental allergens but we have had reason to suspect before this incident that he had developed some sensitivity in this area). I am also curious to learn if he could now benefit from
immunotherapy (allergy shots) as we know from his latest allergy test at the pediatrician's office that his dog allergy has gone up significantly since we last saw the allergist.
I mentioned at the beginning that this adventure has caused us to re-think life a bit. First of all we have been reminded in a very profound way how thankful we are for the precious children God has blessed us with. I can't tell you how many times I have been overwhelmed with emotion as I have sat with the kids at the breakfast table, read them stories, or just watched them playing. I have been very prone to sudden urges to take them in my arms and squeeze them tightly, sometimes much to their protest! Secondly, we are no longer pursuing Seth's graduation at all costs. We are still planning for him to finish his dissertation fairly soon and to graduate with his long-pursued PhD, but on the other side of this ordeal frankly it seems much less important than it did a week ago. Our entire family has made many sacrifices over this past month to try to enable Seth to meet the September 2nd deadline for his defense draft. To put it simply we do not have the strength or the desire to push ourselves and our children to this extreme any longer. As a result it looks like Seth will be walking in May instead of December as we had hoped, but in the grand scheme of things this really doesn't change things significantly. In fact, in terms of the next chapter in our life, it doesn't change things at all. We were planning to remain in Louisville at least until next summer as there are not many teaching positions that open up mid-school year.
In conclusion, we are very thankful for God's faithfulness, not only in the details of this circumstance, but in guiding us step by step each day. We are at peace with both the progress and the outcome of this situation, knowing that God was and is fully in control of every detail. We are also so thankful for you, our faithful friends and family who have not only persevered this far in reading this saga :), but have prayed and supported us through this and many other difficult circumstances. We are so grateful for your faithful love.
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