It's Good To Be Home...I think!!!

Now don't get me wrong...I love coming home. But when dealing with Sam there are times when it is comforting being in the hospital. Let me try to make sense of things.

At the hospital I know Sam has access to anything medically we may need...oxygen, pep treatments, medications, IV's, medical equipment, pulmonary experts, way too many lab people (sorry lab techs but it's like being a human pin cushion), doctors, nurses and so on.

And even though I know all that is available I still never rest easy in a hospital. It could be the control freak in me coming out...one of my many faults. I have had good experiences and not so good experiences in the hospital with Sam...but to me each one was another learning opportunity, another piece of the puzzle which is my Sam.

Back in 2005 we had a bad experience which landed us in the ICU. Sam was misdiagnosed with asthma and an aggressive asthma protocol was followed. Sam reacted poorly and his condition got worse instead of better. We spent a couple of days in the ICU. Now even though that was a bad experience I learned how Sam adversely reacts to Albuterol and steroids. We learned that less is more for Sam and a slow and steady path is our best route of treatment. We pursued further testing to find out what Sam's specific respiratory issue was. There was good that came from a very bad experience.

Also from that experience I took on a much more active role in Sam's medical issues. I no longer have that unconditional trust of doctor's or medical personnel. I learned that doctors are truly practicing medicine and as they practice they also make mistakes. I began to view doctors and nurses as people just like you and me but with more medical knowledge...however I'm the expert on Sam. That doesn't mean that I am going to tell a doctor or nurse how to do their job but I will advocate for Sam, I will let them know what works and what doesn't, I will read Sam's non-verbal cues and let them know how he is doing. I will try to put myself in Sam's shoes and do the best I can in addressing what his concerns and needs might be. I will ask for pulmonary, orthopedic or any other specialty consult if I don't completely agree with a doctor's orders. I will probe, I will question, I will research, I will learn and understand the medical terminology, I will get second and third opinions.

With all that said I absolutely respect the role doctors and nurses play in Sam's life. I am the first to thank or acknowledge a doctor or medical professional that has met or exceeded my expectations. I want to build strong relationships with Sam's doctors and nurses. I respect them as professionals and people and I simply ask that they respect me as Sam's mom and the person that spends the most time working with and loving him.

My unrest in the hospital comes from the necessary shift changes in personnel. While I understand that nurses and doctors can only work so many hours a day it still becomes a little unnerving when I have to meet, introduce and educate so many people on Sam. I love when I get a repeat nurse or nurses return from one shift to the next...it comforts me to get to know those people who are helping me with my child. I can't imagine how difficult their jobs are as they meet new parents and children on each and every shift. Every child, every parent, every situation is different. I utilize Sam's pediatrician as my overall medical expert on all that is Sam. If I have difficulty in the hospital, Sam's pediatrician is my go to person to help coordinate a successful outcome. I do understand that some medical personnel like to talk to other medical personnel when it comes to making decisions about my child so Sam's doctor becomes that contact in those situations. I also understand that there are policies and procedures that have to be followed in a hospital situation and I ask Sam's pediatrician to listen to my wants or concerns and coordinate with the hospital. I carry with me a signed Emergency Information Form For Children With Special Needs (a blank copy can be found here, www.aap.org/advocacy/eif.doc) and a copy of Sam's respiratory report. I don't want anyone guessing about things we have already figured out with Sam. I understand and respect the fact that Sam's hospital file is thick and a doctor does not have the time to review everything so the medical information sheet and respiratory report gives them the important information up front.

Another area of unrest for me is the grey area of care and responsibility in the hospital. Ultimately I believe that as Sam's parent he is my responsibility 100% of the time...but hospital situations cloud this area. Yes I understand how to best work with Sam in certain situations but that does not usually include taking blood, putting in an IV or making him cooperate during medical procedures...I don't have to do those things at home with him. If Sam is coming to the hospital because of an illness I have often been awake and dealing with him for days before...so there is a fatigue factor on my part. Now add to this the changing personnel and things get cloudy for me. As I walk through the hospital I can't help but notice how many children/infants/toddlers are there by themselves. I feel sorry for these children...I try to rationalize that the parents may have to work or something critical is keeping them away from being there with their child...but my heart still hurts for these children. I also realize that if a parent isn't in the room the nurses are responsible for 100% of that child's care. But with me being in the room, what % are they expecting me to do? Does that % qualify me as a good/bad parent in their minds. I have watched Sam pull his leads off and throw them on the floor. The medical equipment is quickly registering that Sam no longer has a heart beat nor is he breathing. Alarms sound but I don't see anyone rushing in to check on him and I have even had times when the staff has just called in on the speaker to ask if everything is okay. I've wondered...is this the same policy followed if a parent is not in the room? What if something happened to me? What if I left without telling my son's nurse I was leaving? How long would it take for a person to check on Sam's situation? This is one of many reasons why I stay with Sam. Add in Sam's sensory issues, limited verbal expression, hearing issues, allergy and medication issues and we could have a potential prescription for disaster. But I struggle with the percentage of care. I actually am happy being 100% involved with Sam's care but when I am dealing with lack of sleep issues that commitment becomes a challenge. I try to let the nursing staff know where I'm at but I often get a mixed reaction. Some seem to understand and help as much as they can while others seem to not care and have no problem waking me to assist my help with Sam. And then there is that question of if I don't assist are they questioning my commitment to my child and honestly thoughts like this can become much larger in a sleep deprived mind. I also wish I could just sleep when Sam sleeps but my mind doesn't shut down in the middle of a respiratory distress situation. I am still monitoring the beeping, how he looks or acts and that keeps me focused on his situation instead of sleep. Now let's add in the plastic, hard recliner with the added comfort of the crispy, plastic, sweaty pillows and it isn't exactly a prescription for restful sleep. Oh but wait, I could also stretch out on the hard, plastic, too short for the average person pull out couch that never seems to pull out flat. I think I would pay an upcharge for a down comforter to go on either of these items to make them just a wee bit more comfortable.

I also want to take a minute and talk about the nurse call button. You press the button, wait for someone to ask you what you need and then wait for a nurse to appear when she is available. I often wish there was a general call button and a 911 emergency button. A general call button is great for an IV pump that is beeping, I need a blanket or towels, can I schedule a pulmonary consult...a 911 emergency button is for Sam is choking, gasping and about to pass out, Sam has pulled out his IV and I need help now and Sam's oxygen stat is dropping fast. Each of these happened and response time was not exactly quick enough for my liking. I handled getting Sam back in bed and comfortable without nurse assistance, I had to wait for assistance with the IV which led to an IV intervention (as I like to call it) 5 people for 1 child's IV. It's like they sent the best of the best with special vein lights, well versed in working with a child with special needs, quickest IV placement ever and I wanted to say, why doesn't this happen every time...can I request this dream IV team??? I handled the low oxygen stat by turning up Sam's oxygen myself until he was at a favorable level and then letting the nurse know. I hook and unhook Sam from machines, turn them on and off to go to the bathroom or help him take a shower, I often times administer medication or a breathing treatment if the person is tentative or unsure of how to proceed with Sam. Maybe it's just me and my control issues but I think many people who have not experienced hospital stays with their children are under the misunderstanding that while your child is in the hospital the nurses and doctors do 100% of everything and you can just rest and observe. Hmmm...nice dream but certainly not my reality.

While Sam was in the hospital he received 4 different types of antibiotics as they tried to determine the other virus Sam was fighting and if his pneumonia was bacterial or viral. As a knowledgeable parent I know probiotics should be given when antibiotics are given. Hmmm...why wasn't that a suggestion at the hospital? One caused an itchy skin rash to appear on his thighs. So benadryl was administered to help with that allergic reaction. So, Sam was taking 4 different antibiotics, two types of breathing treatments and now benadryl. I'm convinced that Sam's immune system issues stem from his unhealthy gut which was destroyed by IV antibiotics in his first year of life. I can't help but wonder what further damage we have now done.

I watch all this closely because I know that Sam can sometimes get overloaded or his body will reach a point where the medications begin to become the problem and he turns a corner in the wrong direction. On Tuesday Sam began to react negatively to the pep/respiratory treatment...he sounded and felt better before than after they were administered. He wheezed after receiving the treatment and his hyperactivity or OCD type behavior was rapidly increasing. That's my cue to intervene, ask for a doctor consult which normally leads to a pulmonary consult and then we change the protocol. But that doesn't mean it's a good time to take a nap because in 15 minutes respiratory shows up ready to do a pep treatment with both of the medications. You see the orders had not come through yet to drop the pep treatment and one of the medicines and use the other medicine as a regular breathing treatment.

Now do you understand my concern for those children here at the hospital with no one to advocate for them. No one watching for changes or medication reactions.

But let's talk about going home. Some of the hospital staff were not comfortable with Sam leaving due to his oxygen levels and the sound of his lungs. But when you have a more involved child you learn to take them home earlier and how to deal with the issues. I don't ever want to jeopardize Sam's health but you have to think about that in different ways. Sam was feeling better which means he becomes more difficult to handle in a hospital situation. Sam wants to get up and move, his sensory issues kick in as he feels better, the medications make him hyper and he demonstrates stronger obsessive behaviors....like getting the IV removed, removing the pulse ox, taking off his hospital bands, pushing or yelling at medical personnel to leave him alone. Sam also is immune compromised, the longer he stays in the hospital the more potential illnesses he is exposed to. Sam in known to double up illnesses as he did this time with pneumonia and another virus. I knew we needed to think about going home when I did try to take a nap and Sam proceeded to remove his hospital bands and his pulse ox and then woke me to let me know what he had done. I attempted to sneak out and get some food while Sam was sleeping. As I came back up to the ward, the nurses were chuckling and told me Sam was feeling better. As I approached his room I noticed the pulse ox strip laying outside the door that Sam had obviously removed and thrown there. I heard him calling "Mom, Mom, Mom...Sue...come here now". When I got into the room he was happy to show me his bare toe that was now free of the pulse ox. He had also rung for the nurse to let her know he removed it. Sam was beginning to feel more like Sam and it was time to go home.

At home I have things for Sam to do in bed, games to play, favorite movies and shows, music and toys. And yes they have toys in the hospital but it takes me 15-20 minutes to clean and sterilize each one so that my child with immune system issues can play with it and I still worry if I got all the germs off. At home I can get him moving his arms and upper body to help with his breathing by playing basketball, balloon tennis or using the Wii. Sam has more food options at home since his diet is limited by being gluten and dairy free and although the hospital has a nice offering it does not include all of Sam's favorites. Sam is happier and more cooperative in his home environment. At home he has his family that can tag team his care and meet his needs letting mom get some much needed rest.

Sam was thrilled to be going home, he did great as we wheeled him through the hospital but when we hit the outside cold air and he had to be loaded into the car the coughing began. As I drove it accelerated to some gasping at times. So now I'm driving when I have not slept much in days and I have a child exhibiting respiratory distress symptoms in my back seat. I struggle with the decision to turn around and return to the hospital or continue home. As I get to the north side of Milwaukee he suddenly becomes very quiet. I quickly pull over and not wanting to introduce more cold air I crawl over the seat to check his breathing, take his pulse, look at his nail beds and make sure he is not pulling in around his rib cage. Sam has coughed himself to sleep. I pray some more and continue my drive home. Getting Sam into the house causes another coughing jag but now I have the nebulizer and can quickly administer a breathing treatment. Sam does well but struggles to get the coughing under control. I put on his oils to assist with his breathing, start up the vaporizer and oil diffuser and pray these are going to calm his coughing down. They do and he seems more comfortable but when it is time to sleep he starts up again. I reapply the oils, adjust the vaporizer and begin to pray. I crawl into bed...after 4 days of little sleep I feel like I'm crawling into a cloud. My bed has never felt so good. I explain to Jeff how tired I am and that I almost feel like I'm losing my sanity...but Sam continues to cough. Jeff begins to pray and I begin to plead with God for help and comfort allowing Sam and I to get some much needed sleep. God answers and Sam begins to settle down and falls asleep. Jeff is now feeling all the emotions and worry that comes with taking care of Sam as I begin to drift off to sleep. He knows that I need sleep and yet he's terrified on what the evening may hold. We are both thrilled that Sam continues to sleep well with an occasional cough here and there. Jeff and I take turns getting up and checking on him in the room attached to ours.

The next morning Sam wakes up coughing and gasping again. Mornings are always tough on respiratory kids. Everything settles, your respiratory systems gets dry and inflamed and you work twice as hard to work through everything. I immediately give Sam a breathing treatment and I see him relax. I talk him through slowing his breathing down and he begins to respond. I offer him some ice cold water and when he asks for ice cream I don't hesitate. Sometimes ice cream can do wonders to cool, comfort and alleviate the inflammation in Sam's airway.

Sam looks good but has some dark circles which I call his pediatrician about. The pulse ox is ordered and on the way. I will continue to monitor Sam's oxygen stats. Sam is happy, smiling, and tells me over and over "It's good to be home". I know we are not out of the woods yet. Sam's mobility is further decreased with his pneumonia and he will have to take it easy and we will take it one day at a time. Sam had a good day at home and he went to bed easily and with little coughing. I feel better about being home. I am still exhausted today but I know that I will regain my energy as I get to sleep on a more regular basis and right now that pillow,....er bed, is calling my name. Good night everyone!