Dear Son Medical Update #2~Diagnosis: Swine Flu, Pneumonia, MRSA

On Monday, Dear Son (DS) tested positive for Influenza A. As you may recall, Dear Son is at Big Academic Medical Center and was being treated him for the flu and a viral pneumonia. During that time, I met with the Section Chief of Infectious Disease(SCID), who is an expert in unspecified fevers, and he was confident that they had figured this out. While the blood cultures and swine flu test were still pending and would take a few days, this is what Dear Son was treated for. I didn't share the flu information when I updated you earlier in the week, because at that time, while they suspected the swine flu, I didn't have the test results back. I met with the Section Chief of Infectious Disease and he had explained to me that 88-90% of the patients there that tested positive for the Influenza A, would test positive for the swine flu and that's exactly what happened with Dear Son.

What was problematic for me was that in early October, I spoke with Dear Son's physicians with regards to getting the swine flu vaccine, along with the seasonal flu vaccine and the pneumonia vaccine. Dear Son had a pneumonia vaccine in 2002 and I had met with the Section Chief of Pediatric Pulmonary in August for an office visit to determine if he needed to get another pneumonia vaccine (Normally you need only one in your lifetime but because DS has chronic lung issues, it was recommended he get another one.). I wanted to know if I could get all three vaccines done on the same day, Monday, October 26th, because DS was off school and it's hard to get him around. Dad must go with on all office visits because we don't have a wheelchair van and he has to lift him. They had conversations to determine if he could get them all in the same day, how many injection sites they needed to do and if they would have the vaccines by then. We also needed to determine which type of vaccine he needed to get (live or dead) and it was determined that with DS's pulmonary issues, he could only get the injectible version and not the nasal mist. It was set up and he was approved to get all vaccines on that day.

When we arrived on that day, they were out of the Swine Flu injectible vaccine. Little did I know that this would be a huge problem for Dear Son. On Saturday, October 31st is when his fever started. I specifically asked the Section Chief of Infectious Diseases what the incubation period is on the swine flu and was told 1-5 days. I asked him where DS got the flu and he thought he most likely got it at school. I also asked if DS would have gotten the swine flu vaccine on Monday, the 26th, if he still would have gotten the swine flu. He said that if DS got the vaccine, he probably would not have gotten the swine flu. Please understand that it would have still be possible for DS to get the swine flu with the vaccine, however he was saying it most likely would have prevented it. I learned all of this information earlier this week but didn't want to update the blog until I had the actual test results that were positive for the swine flu and I got those yesterday. He is also having conversations with those departments to determine why the vaccine was promised and not delivered for someone like DS. Typically, the city gets the vaccines, they go to the hospital then are distributed to the departments and they allocate the vaccines to the appropriate patients. In our case, they aren't certain what happened and I should note that we came down just for the injections and neurology clinic as not in session that day, another department was.

In addition, once Dear Son tested positive for Influenza A, they required me as his primary caregiver, to start on Tamiflu and gave Dad a prescription as well to help prevent the swine flu.

In addition to the swine flu, Dear Son has a big infection in his right lung. It is nearly all white on the x-ray. At this point, the blood cultures haven't come back with a bacterial infection so it is still considered a bad viral pneumonia.

Pediatric ICU policy states that all patients must be tested for MRSA. As you are aware, Dear Son tested positive for MRSA in 2006 and had two MRSA penumonias and was vented at that time as well. Many of you read my Mother's Day blog where I almost lost Dear Son on Mother's Day but the blood transfusion saved his life. Dear Son tested positive for MRSA this week as well. I asked the Section Chief of Pediatric Pulmonary, who is DS doctor, if that meant the pneumonia was a MRSA pneumonia and they can't say. What is does tell us is that he has a pneumonia and he has MRSA which means that they need to treat him with antibiotics for the worst case scenario. (As an FYI, typically with a MRSA pneumonia, you have really high fevers, say 105 or so and because it's a bacterial pneumonia, there are protocols for the length of time they will be on antibiotics. For example, often Vancomycin, a powerful antibitoic will have a ten day course.)

So to update, Dear Son has the swine flu as his primary diagnosis and then a bad pneumonia and MRSA on top of that. The swine flu can have a fever component (If I recall the SC of ID said that less than 10% of patients with the swine flu have a fever.) Dear Son remains on a ventilator.

On Tuesday, Dear Son was started on the ventilator at 100% and by Wednesday, his settings had decreased to 55% oxygen. A simple way to evaluate what is going on is when the vent settings are going up, you are getting worse and when they are going down, things are getting better. Dear Son continued to have fevers on and off. They were able to stabalize the blood pressure with norepinephrine and also stabalize many things: glucose, sodium, potassium and magnesium. He remains on the norepinephrine though to keep his blood pressure up.

On Thursday morning they attempted to get a chest x-ray which required Dear Son to lie on his back. Normally Dear Son can not manage his secretions when he is well on his back and I told them that he could not lie on his back for any time longer than necessary. They ended up having him on his back some 20-25 minutes at which point I said I had to turn him on his side. I could hear the secretions and while they can suction him, I honestly can't stand that and would prefer to prevent these kinds of things. For the record, I have a horribly weak stomach and when he is on the ventilator, it is ungodly stressful for me and for DS. The nurse thought she knew everything and was going on on how Dear Son was doing just fine on his back, his oxygen saturations were lovely, etc. I left the room to go to the washroom and came back and she was totally white faced. Dear Son's had desatted and as a result they had to turn the vent settings up from 55 to 100%, except that now they had a problem because he wasn't getting enough oxygen even though they were at 100%. There was nothing more they could do. She asked me if it might be possible he was having a seizure since she couldn't get his oxygen up and I said no but I swiped the magnet for his VNS anyway. At this point the charge nurse was in the room and x-ray was standing there wanting another chest x-ray because the x-ray was bad. It was now 5:45 a.m. I told them that they might want to hold off on the chest x-ray until the Attending Doc comes in around 8 a.m. (Yes, they have docs on call all the time and typically the AD is there around 6:30 or so.) At that time, they could talk to her, DS would have had two hours to stabalize and they would have a full staff there to help DS should things get worse. I said they could still do a chest x-ray at that time however since they couldn't get his oxygen up and the vent was at 100%, there was no place to go. I was trying to avoid a crisis when everyone wasn't there. They agreed.

It took a few hours before DS stabalized. He remained at 100% for around two hours or so. I explained to the nurse that while it may seem that Dear Son can tolerate things, he really can't. I think she learned that they need to listen to Mom:)

He continued to have fevers throughout the day and when I left last night, he was on 75% oxygen on the vent with a PEEP of 8. The plan was to try and decrease the vent settings and increase the PEEP to help him out more. (A PEEP is essentially where they have pressuried air that holds the lung air pockets open after they exhale so they don't compress. These are my words for the PEEP explanation.)

Dad had to leave earlier this week after coming down with a fever. He got sick after spending one day in the room. I left last night and have a terrible sore throat and can't speak.

So to summarize, Dear Son is at Big Academic Medical Center and has the swine flu, a bad right lung pneumonia and MRSA. He is being treated with Vancomysin and Zosyn as the antibiotics, Fentanyl for pain, Tamiflu and norepineprine to stabalize his blood pressure. They continue to treat his fevers with Tylenol and Motrin. They are giving him chest PT every four hours and take blood gasses every four hours. He has a central line, an arterial line and a foley for urine. He is also having more seizures so they took all seizure labs yesterday. He had a good night last night and the vent settings have been reduced to 50% oxygen.

They expect the swine flu to last seven days and during that time, he will be pretty sick. They will continue to treat him with the antibiotics and the plan is to increase the PEEPs to try and get the vent settings down.

I spoke at length with Dear Son's Pediatric Neurologist, who is DS primary doc. He has been his doc since he was ten weeks old. I asked him if he thought Dear Son would live. He thinks that Dear Son will live however he is not sure how easy it will be to get him off of the ventilator. He explained that unlike other physicans, he spends a lot of time in the ICU and knows these physicians well. He stated that for those patients who have had the swine flu there, they have been very sick for a good week or so. He is very confident of the ICU team in terms of managing these types of issues. I also wanted to know if the fact that Dear Son is so weak at baseline and has a progressive neurological disease if that makes it harder. While it does make it harder, he has other patients that are more severe than Dear Son and have been in the ICU for other issues and the team has been able to pull them through. While his words were comforting, I still do not feel very good about this situation however it did help a lot. I pray that he is correct.

I do know however that getting him off of the ventilator will not be an easy task and they have told me that they will probably need to get him some support before he can breathe on his own. I have had conversations with several of his physicians around this issue.

I would also strongly recommend that if you have a child with chronic health conditions like Dear Son, that they get the swine flu vaccine. I asked the Section Chief of Infectious Diseases who is most likely to get the swine flu and he said children with asthma and those with chronic illnesses.

Thank you for all of your prayers for Dear Son. It is very comforting to know that everyone is praying and pull for Dear Son and for us. I am beside myself with grief over this situation and it's killing me not being at the hospital right now. I am going to try and get some rest.

I do have pictures of Dear Son in the ICU, that I took with my new camera however I'll try and get those downloaded later today. I wanted to get the update done for you first.

I also want to thank Laura, Angela and the people at the Make a Wish Organization who have confirmed that they will re-schedule Dear Son's Make a Wish Trip once he's better. In the meantime, we'll just hope that he's on the mend for his 18th birthday next week.

To read all swine flu medical updates for Dear Son, click here.

Note: Dear Son is seventeen years old and suffers from seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. You can read more about him in the Journal of Neurology by clicking the link in my sidebar.

Part IV-The Conclusion

It is now Monday. Thankfully, Mother’s Day has passed. The transfusion that was performed Sunday evening (Mother’s Day) is the turning point for the MRSA pneumonia. It stabilized the blood pressure although he was still considered a bad stable. Over the next few days things begin to improve. The vent settings are reduced, two of the three antibiotics run their course. The ventilator was a major concern up to this point since Dear Son is not very mobile normally. Because of this, I am told that it makes getting off the ventilator more difficult. Dear Son eventually gets off the ventilator and is moved out of the PICU to a Pediatrics floor for a week and is finally released to go home. Today, he remains on g tube feedings five times a day, respiratory therapy four times a day, chest PT four times a day, his seizure meds four times a day and other than that seems quite happy. He is still not able to eat or drink at all. I miss cooking his favorite meals and somehow it’s not quite the same. I am told the recovery is two to three months.

In the end, I am thankful that he recovered. I wonder how many more of these emergencies he will have and how many more he can endure and how many more I can endure. They change you after a while. The little things that may have irritated me ten years ago, are not a big deal. I have a hard time not rolling my eyes when people complain about little things. I’d often like to tell them to quit complaining but I don’t because I realize that their life is “normal”.

It changes you too because it gets harder and harder to define a true emergency. When you’ve been through the big stuff, the little stuff seems so minor, that you wonder if you should even call. I often use the analogy that it’s like having a fire in your house every day-at what point does the fire get big enough that you need to call the fire department? For other people, any fire in their house will elicit a call to the fire department.

Having all of these emergencies prepares you oddly enough. I have an up to date emergency information sheet, a car bag packed at all times for emergencies on the road, a things to take to the hospital list, etc, etc. But I am never prepared for a funeral.

Sometimes people tell me, “How do you do it?” or “You seem to be handling it well.” I do handle it pretty well but then I’ll crash after the crisis has peaked. When the crisis began, I was far more stressed when they weren’t getting results at the local hospital. I can easily see the difference in the level of medical care at each facility. I was relieved when the Air Team arrived. I was concerned when he was comatose and unresponsive on the ventilator. I was panicked when they tested the power at the hospital when Dear Son was on the ventilator and didn’t bother to tell the parents. But none of it compared to the depths of depression I felt when the doc said Dear Son was lucky to be alive. It’s when the crisis has passed that the depression get very deep. You do come out of them quickly but for a few days, I am extremely depressed. It’s that you feel like you’ve just dodged a bullet and then someone says, “Wow, that was close.” You never forget how close it was.

I realize too that one of these days, I am not going to be so lucky. One of the things I miss the most, is working full time and having a career. These last few years have been bittersweet. While I love taking care of Dear Son, I desperately miss having a career. When Dear Son passes, I will be able to resume my career, only to come home to an empty house and realize that the good times were when Dear Son was alive, not coming home to an empty house.

And then there are the issues of when is it all enough? When do you stop trying to save him and when do you let him go? These are the kinds of discussions that people have with their heads. People will debate these issues often but when you are in the situation and have to make a decision, I find I follow my heart. When you are in the trenches, it’s pretty hard to let them go. You don’t care for them twenty four hours a day and then let it all go so easily. I pray often that I’ll never have to make the decision to “let” Dear Son go.

And finally, there are always those who feel that we shouldn’t save these kids. That somehow, because they are severely disabled, that their lives are less or that they are worth less than other lives. I go to my son’s school and I really look at these children. They are happy. They live every day from the heart. It is more often than not, our paradigm that we live in and because they don’t fit, we think their lives are less. That’s not true. Their lives are harder, because we haven’t figured out a way as a society to make them easier, but their lives are not any less valuable. I think Becca summed it up best the other day on a comment she made on Neonatal Doc’s site when she made a profound distinction between support needs (and the severity of disability) with quality of life. She said, “Quality of life is about being loved, valued, cared for and comfortable. How well your body works and what help you need doesn’t factor into it…unless that help is withdrawn or limited in some way.” And for Dear Son, he is loved, valued, cared for, comfortable and happy. That is the best ending. As Jack Nicholson said in the movie, “It’s as good as it gets.”

Part III-A Mother’s Day to Remember

Today’s chest x ray is worse, as if that were an option. I have never seen a chest x ray like this one before. It consists of his head and then it’s solid white from the neck down. There are no ribs or anything on the x ray. It looks like a mistake but it’s not. They have diagnosed him with a MRSA pneumonia and Acute Respiratory Distress Syndrome. I’ll learn in a day or so that he was in septic shock as well. His blood pressure is unstable. They have tried to control it with blood pressure meds but it’s not working. Dear Son’s blood pressure continues to drop. He desperately needs a transfusion. They ask me again, or pressure me rather, and I decline. I have lots of questions and I don’t feel comfortable asking them with ten of them (there is one attending and multiple residents) and one of me. I feel like I am being bullied. I just want a familiar face or at least a one on one with someone. I don’t begin to understand the seriousness of this issue and won’t until a few days from now. If they had presented it to me differently, I might have responded much quicker. In the meantime, they continue the blood pressure meds. His glucose is now unstable as well. They have started him on insulin. His body is retaining fluids in all the tissues. They add the pressure boots to his legs to reduce the swelling. He doesn’t look much like Dear Son anymore. I think his face or jowls, that he has now, make him look more like John McCain. I hate John McCain.

It’s Mother’s Day today. The sun is shining in on Dear Son’s hospital bed and it looks to be a glorious day. Dear Son however looks horrible. He is hooked up from one end to the other. If I were to be truthful, he looks like a corpse with a bunch of attachments hooked up to him. I think to myself that this is not really living and wonder if I am being selfish in wanting him to live or if it’s right that they are saving him. I really don’t know the answer to this. I desperately want to kiss him but am scared of the vent tubing. I look at him up and down and try to find an open spot to kiss him. He’s got IVs in both feet, the boots on his legs, a catheter, his g tube, a central line in his hip, an arterial line in the other wrist, a blood pressure cuff on his bicep, multiple monitors on his fingers and hands, a ng tube out his nose and the ventilator tubing taped across his face. I kiss him on his knee and tell him I love him. I love him so much. It’s really hard to see him this way. In a way, it seems like he’s already gone.

Good Morning America, the weekend edition, is on television. They show a female soldier’s two sons and have the camera on the sons so they can see their mother. The little boy, who appears to be around five or six, is supposed to wish his mother a happy Mother’s Day. Instead, he begins to cry because he misses his mother. The Pediatric Intensive Care Unit (PICU) nurse sees this part while attending to Dear Son and asks why the little boy on t.v. is crying. I tell her he’s crying because he missed his Mamma and hadn’t seen her since Christmas. I mention that it’s Mother’s Day and suddenly Dear Son’s eyes squinted a bit as if he were trying to open them and finally one eye partially opens and he looked at me. Dear Son’s eyes had been closed for a few days now. He had been learning about Mother’s Day at school these last few weeks so I know he purposefully opened his one eye to wish me a Happy Mother’s Day. That was the kind of son Dear Son is. He’s very loving and adores his mother. The feeling is mutual.

The PICU Attending Doc arrives in the lobby of the PICU. She has lots of bright yellow and pink tulips in vases for someone. One of the staff delivers one of the vases to me and tells me it’s from the Attending Doc. She bought them for all of the mothers on the floor for Mother’s Day. God bless her heart. I am almost in tears now. I have told Dear Son for years that my two favorite things are flowers and little boys. He would always laugh at me. I find the doc and thank her. She says, “I am sorry you have to be here on Mother’s Day but I wanted to bring you some flowers and wish you a happy Mother’s Day”. I couldn’t think of a nicer thing to say to a mother today. This woman hit the nail on the head.

I spend the day praying. Actually, it was more like begging. I begged the Lord not to take Dear Son on Mother’s Day. Of all the days to take him, this would be the worst. I decide that this would be the absolute cruelest thing in the world that would ever happen to me and pray that it won’t come true. I would forever have Mother’s Day as the death of my only son.

I easily remember my first Mother’s Day when Dear Son was only six months old. He had spent three weeks at this same Big Academic Medical Center when he was only eight weeks old and Ped Neuro Doc had taken care of him. He started on ACTH therapy and had improved. I was so grateful for that. I held him in church on that Mother’s Day and tears streamed down my face as they played “On This Day O Beautiful Mother”. I loved being a mother and was thankful that he was alive. I had never felt more beautiful than I did on that day.

The Rounds occur. They tell me it’s a MRSA pneumonia. Not only that, they tell me the x ray looks worse than yesterday. I can’t imagine how much worse it can look, but take their word for it. I’ll learn later in the week that they had twelve MRSA pneumonias here last year. Seven died. Enough said. I think back to my first day at the local hospital when I asked for the MRSA screen. Why couldn’t they have put this together and figured out it was a MRSA pneumonia? Or at the very least, that they were in trouble? I am angry but let it go. Dear Son is still in big trouble.

The Attending Doc comes in to meet me and asks for the transfusion. She tells me his hemoglobin is 7.5 and they can’t stabilize the blood pressure. I tell her that I wonder how safe they are. She says they are safe but I need more information that that. I ask her if I can donate. She says that would take a few days to test the blood and we don’t have time for that. She says there is only a very, very small risk of contracting Hepatitis C or HIV from the transfusion and that they are safe. I tell her that I won the gene lottery with Dear Son and that if there was a minute chance he would get this gene mutation too. I tell her that I am not a lucky woman when it comes to this kind of thing. I ask where the blood comes from and she doesn’t know. I think she should know the answer to this question, meaning what blood bank they use, etc, etc, but I don’t butt heads with her. She is trying to help Dear Son. She explains that in her country, the doctors can just do what they feel is needed for the patients, and don’t have to ask the parents permission. In America, she says, it’s different. I wasn’t trying to be difficult, it was more that I wondered if a transfusion was really necessary. I tell her I will think about it.

Hours pass and I decide that it’s not worth it to debate this transfusion. I tell her that I’ll sign off on the transfusion and to have someone bring me the consent papers. I decide that it’s more important for him to live than to worry about the transfusion. Also, I really don’t want him to die today. Not on Mother’s Day.

Continued….Part IV-The Conclusion

Part II-The Rescue

The Air Team arrives. There are four of them-a pilot, an attending and two residents. Just guessing, of course. Still not sure I have done the right thing, one of the residents takes one look at Dear Son and turns white. He comments on how hard he is breathing and administers an oxgen face mask immediately. They also require that one of his antibiotics be changed prior to transport. I am relieved already and begin to relax. This is Dear Son’s fourth air transfer and I know how good this team is. I am always impressed with the way they take over immediately and manage the crisis. I breathe a sigh of relief. This is the stuff the commercials should be made of. Skip the best hospitals stuff-this is when it “really” matters. I can’t begin to tell you what a sense of relief that comes over me when they arrive. It’s the same feeling I get when Dear Son’s in deep trouble and Ped Neuro Doc takes over. These people are good. No, these people are great at what they do.

I leave the hospital to meet them there. I don’t have enough gas to get me downtown so I’ll have to stop or I won’t make it. I leave the hospital and am driving towards the highway when I look up and see the helicopter overhead. This is totally weird. It’s like the scene in a movie, the kind that never happen in real life, but they put it in there to demonstrate the emergency. I can’t believe it’s Dear Son in that helicopter. I feel like I’ve just dodged a bullet. I pull into the gas station, pay cash for my gas and grab a bag of chips while I am there. I get peeved at myself and tell myself that this is nothing more than emotional eating and that I need to put the chips back. I’ve worked too hard to blow it on a bag of chips. I decide that there will be other days to work on this issue and buy the chips anyways. I don’t even like chips. Go figure.

I arrive at the Pediatric Intensive Care Unit (PICU). It’s now 8 o’clock p.m. There are some twenty people working on Dear Son. They have done more in the last hour than the previous hospital did in three days. I still don’t know what’s wrong but I do know this. More people, bigger problem. I’ve seen it one too many times before. I stay in the background offering information only as needed, letting them do their job. They have him hooked up to the Bi-PAP machine, I believe. I don’t really know what a Bi-PAP machine is, however they have it at 100%. They continue to work on him throughout the night. I am getting worried now.

It’s Saturday morning and the furor continues. He’s got IV’s in both feet, a central line in his hip, a catheter, his g tube, an arterial line in his left wrist, monitors on his right hand, an NG tube and they just vented him at 100%. The syringe pumps are stacked so high it looks like a condo tower. I have never seen that many before. It’s not even noon. They work their tails off until 5 p.m. I thank one of the day nurses at she leaves to go home at the end of her shift. I tell her that she did a great job today and thank her for working so hard. She appreciates the fact that I noticed, but she is downright exhausted. They have been working hard since 8 p.m. last night. I look at Dear Son and he’s motionless in bed. They have given him paralyzing medicine to keep him still. I wonder if I have done the right thing. Ironically, I think back to Neonatal’s Docs post earlier this year where we discussed putting plans in place for times like these. I wonder if my decision or lack thereof, is the right one for Dear Son. Am I keeping him alive because I selfishly love him and want him to be around and by the same token prolonging his suffering? I decide I can’t think clearly right now and look at Dear Son and want to kiss his cheek and see his beautiful smile again. I start praying some more that I see it again. I can’t stand looking at him like this.

They approach me again and tell me Dear Son needs a blood transfusion. I am exhausted and overwhelmed and deny their request. I am feeling uncomfortable again. I just need to see a familiar face to ask them about these transfusions. Are they safe? I picture myself forever checking off the box that he’s had a blood transfusion and wonder if it’s really necessary. I try calling our Pediatrician but can’t get in touch with him. Ped Neuro Doc is still on vacation and Ped Neuro Nurse won’t answer her page. I just want to see someone I know. I decide to leave a voice mail message on Ped Neuro Doc’s home phone. I know he’s on vacation but it’s the least I can do.

The nurses come in to suction Dear Son often. I can’t bear to listen to this or watch this. I have to leave the room. I suck at medical stuff-I am much better at the business end of healthcare, meeting with healthcare CEO’s, CIO’s than this stuff. Actually, this stuff makes me nauseous. I ask them to be careful to keep Dear Son on his sides since he can’t roll over and he chokes on his saliva normally. The PICU nurses are great here-smart and hardworking.

I look over at Dear Son again. My mind wanders back to last summer. Ever since Ped Neuro Doc told me he was dying, my life with him has never been the same. I am always wanting one more day, one more smile and one more day to love him. Today’s no different.

Continued... The MRSA Pneumonia: Part III-A Mother's Day to Remember

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.