Monday, May 29, 2006

Part I-How It Began

It was Wednesday and I had just called Ped Neuro Doc about Dear Son. He woke up yesterday with a high fever and although I was concerned, I thought I’d manage it at home first and see if I could get it under control. I usually do that now, try to manage the situation first, then call later. After all, Dear Son is much older now and it’s not as urgent, or so I’d like to think.

We had done our normal morning routine yesterday, where Dear Son wakes up at the crack of dawn, I get up and put my contacts in and then go in his room to give him a big bear hug and some kisses on the cheek. Dear Son laughs when I do this and pushes me away when he’s finished. I then get his meds and breakfast ready, to get him off to school. This morning was different though. I wrapped my arms around him and his body was so hot that it took my breath away. I was alarmed and shocked. I stepped back and gave him a quick once over. He was not seizing, looked fine and everything appeared to be normal, except for the fact he was burning up. I took his temperature and it registered at 104.3. I figured it must be a mistake so I try taking it again but I keep getting these high numbers. I haven’t had numbers this high since he had his ear infections as a little boy and even then, they might only by 103.5. I decide maybe the thermometer needs new batteries. Since everything seems to be o.k. looking at him, I decide to give him Motrin with his breakfast and call him off school. His teacher informed me previously that some of the kids were sick with some colds but to date it hadn’t affected Dear Son.

Other than seizures, Dear Son is rarely sick anymore. In the last few years, we have only seen the pediatrician for wellness checks. Ped Neuro Doc handles most of our emergencies now in part because they are mostly seizure related and partly because of Dear Son’s special needs. Dear Son has a Vagus Nerve Stimulator implanted and has intractable seizures. He’s a great Neuro Doc and a great Pediatrician to boot.

I had decided to manage Dear Son’s fever myself for a day however when I can’t get control of the fever, I decide to place the call to Ped Neuro Doc. Dear Son is breathing more rapidly now and I am concerned. Concerned about the breathing and the fact that this fever will lower the seizure threshold and I could be in trouble soon. I ask him how he wants me to handle this: go to the nearest ER, go to Big Academic Medical Center or follow up with our Pediatrician, Dr. A. He says to go to the nearest ER. His answer surprises me. Although it’s not a neuro issue, he usually handles all of Dear Son’s emergencies these past few years. I follow his advice. I finish putting on my make up and pack a few things, however Dear Son’s breathing is more rapid. He takes one breath every second. I know this is unusual for him because I go to sleep many nights counting in between his breaths I hear on the monitor-one one thousand, two one thousand, three one thousand, four one thousand, five one thousand, “breathe dammit”, goes through my mind and then suddenly he’ll take a breath and I catch my own. I repeat this scenario most nights so I know for a fact that the one one thousand breaths are not normal. I never sleep until I know that he is fine and breathing normally and not seizing.

I end up calling 911 because he begins to look poor. The paramedics arrive and immediately give him an oxygen mask. They take his history and I hand them the Emergency Information Sheet that I made up several years ago. Ironically, I just updated it yesterday. It includes his primary and secondary diagnosis, all the meds he’s on, what his baseline mental and physical abilities are, how he feeds and just about anything you’d ever need to know, if I wasn’t there or if he was in a school bus accident. I created the sheet many years ago after a severe school bus crash in Fox River Grove, a suburb in our state.

They start an IV and we head for the hospital. We arrive at our local ER, a hospital known for it’s cardiology, since most of the patients here are well paid Corporate Executives with stress related issues due to their job. Dear Son’s placed on oxygen and they start him on Motrin with Tylenol given two hours later, to control the fever. They run labs, including seizure meds and start him on two antibiotics. We assume it’s an aspiration pneumonia at this point. I tell them about the Methicillin-resistant Staphylococcus Aureus (MRSA) and they put him on contact isolation. Ironically, I ask them to run a MRSA test because I keep hoping this MRSA thing will go away so I don’t have to go through this isolation stuff any more. Dear Son was diagnosed with MRSA in 2004, probably as a result of his forty plus hospitalizations, throughout his fourteen years. I won’t know for a few days that asking for this MRSA screen, will be like a bad foreshadowing in a novel. Only it’s not a novel, it’s the real thing.

Dear Son is admitted asap. The Peds floor is dead. I check things out and look at their patient board. Only four patients in here right now. I can’t believe it-only four patients. At the Big Academic Medical Center, you have to wait sometimes up to thirty hours to get a bed on the floor. Usually Ped Neuro Doc gets us in there so we don’t have to wait, but other families aren’t so lucky. I see a beta fish in the fishbowl. It reminds me of home but this fish isn’t as friendly as mine. I remember the salt water fish tanks in the lobby and know they have a service for those but the beta fish? That means that someone has way too much time on their hands to take care of this fish. I ask and find out one of the nurses takes care of it. Proof they have too much time on their hands. I enjoy the fish nonetheless.

It’s now Friday and Dear Son has not improved. He’s still breathing as fast as when he came in and I am concerned. His fever is not under control and goes down only if the Motrin/Tylenol combination is administered precisely on schedule. The antibiotics are not working. The night nurses have suctioned him for five hours straight each night. Because they have a low census, they have time to do this. I am thankful for that. Regardless, this isn’t normal.

I decide to start making some phone calls. Something isn’t right and I don’t like it. I don’t have a very good feeling here and I am beginning to get really uncomfortable. I tend to follow my intuition. They admit him to the Intensive Care Unit today. The ICU at this hospital just means that they hook up a few more monitors, but you stay in the same room. The heart rate monitor is on now. WTF! At the Big Academic Medical Center, they have all of the monitors on all the time, not just in the ICU. I talk to the ICU doctor. He’s nice but has no answers. I don’t need nice, I need to figure out what’s wrong. This Hospitalist system stinks; a new doc comes on board every twelve hours. God, I just hate it. My mind wanders back to Dear Son. He is too weak to continue breathing like this.

I close the door and start my calls. It’s one of those days where I can’t get in touch with anyone. Everything from busy signals to getting disconnected. I finally get in touch with my former mother-in-law, who is now 84 years old. She was an ortho nurse for many years. She reads between the lines and tells me that she knows I am not comfortable there. I tell her that she’s right. I’ve got a gut feeling something is really wrong, I just don’t know what. I call the secondary insurance Case Manager. She’s a nurse who’s worked with me a few years now and knows Dear Son’s case real well. She hears the concern in my voice and decides to make a visit to the hospital. Ironically, Dear Son perks up for her visit and then crashes the minute she leaves. He smiles when she says hello to him but his eyes remain closed. That’s Dear Son for you, always the extrovert. He loves people.

I call our Pediatrician (We had moved out of his service area a few years back but I kept going to him Dear Son had mostly seizures and kept the Ped Doc for wellness visits and lab work.) and explain what is going on. I tell him what they are doing and ask his advice. He says the treatment plan is appropriate however we probably need to have a Pediatric Infectious Disease Specialist at a Children’s Hospital look at him. He said most adult hospitals, including the ones he admits too, can’t handle kids like Dear Son. I hang up the phone and call Ped Neuro Doc’s nurse since Ped Neuro Doc is on vacation. She’s out of the office for two days. Crap. I find out who’s covering for Ped Neuro Doc and call his nurse, “P”. “P” used to be Ped Neuro Doc’s old nurse until the last Department Head stole her away. At least that’s what the rumor mill says. She’s a great nurse, the best Ped Neuro Doc ever had and more importantly she knows Dear Son and I. I explain the situation and tell her that if we get into trouble and need him vented, I want it to be at the Big Academic Medical Center and not here. She tells me we need to get him here now if he’s as bad as I say he is. I don’t know if that’s the case but I just know that I am really uncomfortable and growing more uncomfortable by the minute. It’s now 4:35 p.m. on a Friday night and Mother’s Day weekend. She offers to try to find a doc that will accept a transfer. Because it’s not a Neurology issue, she has to find a Pediatric Doc who will do this. Bless her. A while goes by and Dear Son is breathing even harder. She calls back and found a Peds resident who would accept him but I have to get the ICU doc to agree to initiate the transfer. Without missing a beat, I call him in. I try to think quickly about what I’ll tell him being careful not to upset him. My real thoughts are that we need to get out of here asap because they don’t know what’s going on but I choose to tell him that I’d be more comfortable at Big Academic Medical Center because they know him, blah, blah, blah……He agrees to call them but will only agree to transfer him “if” they have a bed available in the Peds ICU. Dang. I doubt this will be the case but pray nonetheless. Nothing has gone right today so far. I also know that you have to wait thirty plus hours for a regular room, this probably won’t happen. I give him the resident’s pager number and he calls her. He comes back to the room and tells me the Air Transport Team will be here in exactly twenty eight minutes. I pack all our stuff in under five minutes. I can’t believe they had a room but I am ready. I am still not sure if I am doing the right thing but I know that they aren’t moving fast enough for Dear Son and he’s having a really hard time.

To be continued...This is Part I of IV Parts. Part II, the Rescue, is next.


Cathy said...

I'm happy the two of you are back home where you belong. :)

Ex Utero said...

I read your comment on NeoDoc's current comment string and thought it was such an powerful perspective. I think your voice is so important to this blogging community we seem to be building. I look forward to reading the up coming posts you describe as well.

Best wishes for you and dear son. Hope you get some sleep tonight.

Midnight Rider said...

Dream Mom,

My sister clued me into your blog. I have a son who sounds very much like yours in his medical condition. I thought he was the only one. He is 21 now, and has lived with seizures since their onset (infantile spasms) prior to 9 months of age. He is a wonderful, loving child, but can not walk or speak. He is on five seizure meds and has a VNS. He also had a severe bout of pneumonia about three years ago, which was caused by an antibiotic-resistant bacteria, and which migrated to his bloodstream causing sepsis. This brave young man was found at birth to have an X-chromosome anomoly (extra material on the short arms; not a translocation) that he inherited from his mother. Hers was the first mutation, as it was not found in her parents or siblings. We've had 2 wonderful pediatric neurologists and spent some time at NIH so he could be studied as a potential candidate for a then-new medication. You describe your and your Dear Son's situation so well, and it is eery how closely it parallels mine with my own Dear Son. I always hoped that his life could benefit others, so perhaps one step would be to have him tested for the genetic defect you describe as " mutation of the ARX gene because he had infantile spasms of unknown etiology, myoclonic seizures, mental retardation and dystonia..." That describes our case exactly. I am off in D.C. on business right now and have to catch the Metro to the airport, and head back to Chicago/DuPage, but wanted to leave you a note now from the hotel business suite before I left. I will check back and read more, and provide more information of my own if there is any chance to be helpful or at least ease my own sense of being lost and alone.

Thank you so much,
Midnight Rider / Loving Dad
(not signed up with a blogger account yet -- have to figure that out.)

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