Welcome Home Connor!

Two weeks ago, Connor woke in excruciating pain. His pain was so intense, he could not even walk upstairs to wake me, and because the ringer was turned off on my phone, I missed his numerous calls and texts begging me for help. When I rolled over upon waking, checked my phone and gasped at seeing a text from my son saying “Please help me”, Mark and I ran downstairs to find him curled into a ball. I rushed him to the Emergency Room, fully expecting to hear that his appendix had burst. To my complete surprise, we learned that Connor had pneumonia. He not only had pneumonia, but a CT scan showed that he had a large abscess in the lower right lobe of his lung.

To say that all of this came out of the blue is no exaggeration. Connor literally coughed for the first time on September 6th (Friday) and was admitted to the hospital on September 10th (Tuesday). He was feeling really rough on Sunday (the 8th), and Mark had taken him to Urgent Care, however the doctor that treated him there said he only had an Upper Respiratory Infection and sent him home with…nothing.

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The week prior, he had complained of low energy and during his Meet the Squad Night (on the 5th) I watched him from high in the bleachers, across the gym, and noticed that he seemed extra pale and his eyes seemed weary. However, he had been running 3-6 miles a day, for months, and is rarely ever sick, so my concern was more annoyance for him that he was feeling crummy so early in the school year.  I knew that he didn’t have time to be sick, his course load was so heavy and Cross Country was gearing up to keep him quite busy.

He was admitted soon after the lung issues were discovered and our local hospital did a good job trying to get him feeling better the remainder of the week.  He was spiking high fevers each day, and maintained a low-grade fever despite the medicines, and one evening when I was home with Corrigan, Mark called to tell me that they were putting ice packs all over him because his fever had shot up to 105 degrees (F).

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When a second CT scan was done on Saturday (14th) and it showed that despite trying four different antibiotics, the abscess had grown larger, the decision was made to transfer him to a larger hospital that had more specialized pediatric care.  We preferred he be sent East, to Johns Hopkins or Children’s National, but they were having a hard time getting anyone to take the case on a weekend, and there was talk that he might have to head another direction.  Thankfully, Johns Hopkins eventually took the call and he headed down on Saturday evening by ambulance.

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Connor then spent the last 7 1/2 days in Baltimore as several teams of doctors did what they could to treat his condition without surgical intervention.  We learned that the abscess was anaerobic and the size of a small orange. There were concerns about puncturing the abscess in any manner, curious as they were to know what it was, due to the risk of sepsis and thoracic surgery is nothing to enter into lightly, so they tried two more antibiotics and managed his pain as best they could.

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He was finally discharged to come home this past Saturday (21st) though his abscess was not any smaller, nor were his inflammation markers any better (lower) but his fevers had disappeared for more than 48 hours, which is a good sign that infection is being controlled.  He came home with a PICC line in his bicep and I have been giving him IV antibiotics here at home.  He looks great, truly he does, but it is nerve-wracking to know that there is something inside of his body that isn’t supposed to be there, that makes him so sick.  I do not know how parents of children with cancer handle that knowledge, every part of my body wants it out of him now, but I know that his doctors feel that he is strong enough (young and healthy) to beat this without disturbing the lung, it is just going to take weeks, or months, to get it all cleared up.

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Connor was amazing throughout it all.  While his little brother has experienced a lot of the things that Connor did those weeks (IV’s, transport in ambulances, long stays) Connor had never so much had to give a vial of blood for lab work in his life.  He had never even had a vomiting illness before.  Disturbed sleep, beeping machines, people constantly touching your body all day long, this was all new to him, but he was pleasant and respectful and listened to everything they said, doing what they asked him to do.  By the end of his stay, he was completely advocating for himself, speaking up and asking questions, pressing the call button for the nurse whenever he needed something and even letting someone know that he was unhappy about the care of his IV line by a doctor.  He did a lot of growing-up these last two weeks, and that is a good thing.

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How are the rest of us doing? We are all still in a state of shock. Corrigan is off-routine, and for a child with such strong scheduled needs, it made things a little rough on his end.  Mark spent the time at Hopkins with Connor, while I stayed nearby and tended to Corrigan’s specific medical needs outside of the hospital, making trips into the city to visit when I could.  Mark not only slept on those dreadful pull-out chair/beds with a bad back and neck, but he also tried to keep doing his job remotely, he had brought along his mobile office, and worked from the corner of Connor’s hospital room most of last week. I cannot imagine how stressful that must have been, with two teams coming in and out of the room all day long, plus nurses, housekeeping and Child Life folks. Not to mention that loud coughing and an IV pump that seemed to alarm every five minutes.  I’ve done many hospital stays over the last five years, but this was, for Mark, a trial by fire, that’s for sure.   He never complained, not once.

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I’m wound tight as a drum but slowly feeling less crazy after we all returned home this weekend, it was strange how angry I’ve felt for the last two weeks.  With Corrigan, when he is sick and hospitalized, I am usually able to push emotions aside and do what needs to be done, but if I allow myself to feel things, the feelings are usually sad ones. However, with Connor sick I was just really MAD.  I walked around Baltimore mentally daring someone to get mouthy with me, I so desperately wanted to slug someone in the face, and that is so unlike me. I was just so angry that yet another of my kids was laying in a hospital bed. Why my boys? Why not me? What do you mean Connor is sick?!?!  

There was a point in the middle of the week at Hopkins, that Infectious Disease told us about an Auto Immune Disorder that doesn’t rear its ugly head until the teen years, and normally in boys. They told us about it with smiling faces, and calm voices and lots of “…but we don’t think it could really be that.” and, of course, I was unable to refrain from checking out Dr. Google. I mean, I managed to not look for two days, but after that second day I gave in and saw words like “genetic” and “fatal” and “life expectancy 35 years old” and it was a strange sensation, to think that there was a chance that I could have given my boys TWO genetic, life-threatening disorders.  My entire body went cold with fear.  I told Mark that if the test came back positive, to go ahead and line up my room in the mental hospital because this woman wouldn’t be able to handle it, but we were blessed with a negative result a day later, and our relief was palpable, though the fact that we will never know what led to Connor’s abscess is still enough to make me a bit crazier than I already am.

Connor is already pushing to get back to school this week. He is on IV antibiotics here for another week, perhaps even longer depending on labs, and then on oral antibiotics for even longer, but he is tired of laying in bed and a Hopkins doc said that if his school was okay with him going back with a PICC, he could return when he was ready. We had to be firm that today (Monday) was not the day, but he is pushing for Wednesday.  He is so strong. So driven. So motivated. But he just went through something really hard and needs to rest.  I’m not sure what the weeks ahead hold for Connor, and this monster living in his lung, but I know that he will meet it head on, I am just so proud of him.

 

 

2 thoughts on “Welcome Home Connor!

  1. That is just unbelievable! He is like a picture perfect kid and the one you’ve never really to worry about. I can’t even imagine how difficult that was for you…and just sooo crazy that it hit him so fast. I had a small bout of walking pneumonia and nothing in comparison to what Connor is going thru and it COMPLETELY wiped me out for over 6 weeks and I even became under weight. He needs to rest!!!! I would force him to stay home and keep up with his studies at home. Why risk another infection going into flu season. Also, Abbey had a lung mass that started before birth. It was something that could have killed us both however she made it fine. But surgery was necessary because later in life it could have turned into chronic severe pneumonia or cancer. So, she did have lung surgery to remove it. It’s called a CCAM. Congenital Cystic Adenmatoid Malformation. Some people can be born with this but never know it. It might be something to ask about or look into. Some types can form fluid filled cysts that can get quite large like you described and then get infected. That was why it was a danger to her in utero because it was nearly pressing on her heart which could have caused fetal hydrops and death to the child and mother.

    Big HUGS mama! You have been thru so much. Praying for Connor.

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