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!

Medical Update on Sam Mayer

Do you feel a trend here? Sam's high tolerance for pain can only be rivaled by his obvious lack of requiring oxygen. Last weekend Sam came down with the symptoms of a cold. Kinda stuffy, sounded like he was talking through his nose...just a little congestion. Sam has had two colds this season so I thought we were just going to have the same thing again. His lungs sounded good so I headed off to a conference in Madison on Central Auditory Processing on Wednesday. Sam was excited to do a sleep over at Grandma and Grandpa's house.

Everything went well on Wednesday but in true Sam fashion he seemed a little off or worse on Thursday. That night when I talked to him on the phone, the first thing that Sam said to me was "I sick". This raised a huge red flag with me because Sam does not tell you he is sick, the same way he doesn't tell you his hip hurts. Okay...now this is where it gets interesting. Sam was at Grandma's house during this phone call using Jeff's phone and although everyone was listening to Sam and my conversation on the phone neither Jeff or my Mom heard him say he was sick. Do you have goosebumps??? On my end I heard Sam say "I sick" as clear as day, on Sam's end they claim he never said that. My conference was supposed to last until 4:00 p.m. on Friday but I quickly decided we would head back the next morning.

By the time my friend dropped me off at the house, Grandma was leaving me a voicemail to let me know that I needed to get home as soon as possible. Sam was quickly getting worse and had just thrown up. I think I could hear the sound of relief in her voice when I called her back, told her I was on my way and only 4 minutes away from her house. While driving to Grandma's I called Dr. Steinert to get an apointment for ASAP. They said they could see Sam at 1:30.

As soon as I saw Sam laying on the floor and my parents hovering close overhead I knew coming home was the right decision. My Dad was finally able to coax him off the floor, out the door and in the car. Sam slept on the drive to Germantown with me checking my rear view mirror every couple of minutes.

I woke a very unhappy Sam and loaded him into his wheelchair. We headed in and even though our wait wasn't long it seemed like an eternity. As we waited for Dr. Steinert Sam asked to climb on the table and proceeded to fall asleep, snoring and all. His fever was 102.8, he was getting more and more lethargic...I noticed his right ear was draining...nothing like going from 0 to 150 in a blink of an eye. Dr. Steinert listened and told me he heard some sounds in the right lung and Sam had an inner and outer ear infection. Amox-clav was the drug of choice along with ear drops. I felt better as we headed out that we were going to be doing something and Sam would shortly be turning around.

Boy was I wrong...Sam's fevers began to spike at 103 and 104...lethargic, unhappy, and just plain irritable seemed to be the mood of choice. But what really started to scare me was the developing breathing patterns I was seeing, fast shallow breathing along with a bluish, purplish lower lip that was slightly swollen. Sam was having coughing fits that would often times end with him throwing up. On Sunday he didn't seem to want to lay down, he didn't seem to be able to find a comfortable position...all the mommy alarms were ringing. Calls to Dr. Steinert and his office confirmed my gut feel that the Children's ER was our next destination.

Unfortunately we got a faulty pulse ox reading when we checked in. They thought Sam was at 95. They had us do an x-ray which showed two not so pretty lungs. The ER doctor asked for a pulse ox and when Sam showed he was comfortably hanging out at 61, a lot of people started to arrive. We went from us and the doctor to a staff of 5 quickly. Oxygen, IV's and consults with the ICU quickly took place but noone could believe that Sam was still functioning so well although a lot of his symptoms correlated with hypoxia. Finally around 10:30 p.m. after being in the ER for 6 hours of observation, the ICU felt he was stable enough to be on the floor. They would revisit that decision 4 more times as we tried to get Sam stabalized on the floor. We transported Sam in his wheel chair to the 11th floor we transferred him into the bed and while on oxygen Sams level dropped into the 50's. The ICU team again visited and Sam was put on 15 liters of oxygen. To transfer or not to transfer...stabalizing became more important than transfer so we stayed on the floor and waited for Sam to calm down and fall into a better breathing pattern and oxygen rate. Breathing treatments and IV medications were increased and Sam was finally beginning to need less oxygen and everyone except maybe me and Sam were now becoming more comfortable.

Sam's night was not relaxing for Sam or I. He dipped, his oxygen levels were up and down, breathing treatments were changed, pulmonary began visiting along with the ICU doctor. Sleep was not going to be the priority and this was day 3 of little sleep for me. I had been awake and dealing with Sam since 2:00 a.m. the previous morning. But as tired as I was the adrenline kept me going, my mind was programmed for the beeps and motion that was Sam's room. I couldn't take my eyes away from his face, his movements, his expressions or lack of them...observing is my life with Sam. It's how I figure him out. The change in Sam on the higher rate of oxygen was obvious to me but not so obvious to everyone else in the room who have never had the privilege of seeing a normal Sam. The degrees of change are what my gut feel goes off of to figure out which direction we are headed.

Due to Sam's drug reactions and allergies I never come to a hospital without Sam's medical emergency profile which is signed off by his doctor and his bronchialscope summary that further defines Sam's respiratory issues. I don't ever want to take the chance that someone would miss seeing a report, reaction or allergy. I know steroids are a common go to drug for respiratory and immediately give the doctors a summary of Sam's issues with steroids. I also immediately ask them to get Sam's pulmonary doctor involved in order for them to determine which drugs and what doseages should be administered. Over the years I have learned that often times less is more for Sam. Slow and steady is a good course.

After the ups and downs of the evening the next morning brought us one more onset of coughing which again caused Sam's stats to plummet to levels that made everyone nervous. However, slow and steady and by the afternoon Sam is singing "It's 5:00 o'clock somewhere" and laughing to SpongeBob. Fever was being monitored and because he was looking so good I thought I would change the bedding since he had both an accident due to the coughing fit/low tone and an IV mess. I only needed Sam to stand for a minute so I could pull off the bottom sheet unfortunately that started another coughing fit, dizzy spell and sent the stats dropping. Sam was absolutely exhausted by the time he sat back down in bed, his breathing was shallow and fast and he didn't open his eyes for the next 45 minutes. Note to self...don't push your luck and try to have a nurse in the room when you decide to get Sam up for the first time with double pneumonia. Yikes!!

Our evening began to improve until the IV in Sam's foot gave out and we had to put one in the other foot and then Sam decided to remove that one himself while he was sleeping. So we had an IV intervention at 2:00 a.m. and they put this IV in Sam's right hand. After making an IV tent and wrapping it until Sam looked like he had a club instead of a hand, we both finally drifted off to sleep. Have I ever told you how good sleep really is...it's the best.

Sam woke up obsessed with his club hand and proceeded to ask for a scissors about 500 times...I did say obsessed didn't I??? He even used beautiful sentences like "I want scissors please, Mommy Dear"or "I want scissors, cut off please, right now". So I knew getting rid of the IV was my goal for the day to make Sam's life just a little bit more pleasant.

Today Sam ate breakfast, lunch and dinner. That in itself was an accomplishment. But he also got up to use the bathroom and take a few laps around the floor. He then returned to his room and settled in for the night.

I recruited the afternoon nurse on my mission to rid Sam of the IV. She documented Sam's output as above normal and let the resident doctor know that Sam had been fever free for 24 hours and he could take the medications orally. There wasn't really a strong medical reason to continue the IV and Sam's happiness and sanity were at stake. The resident doctor didn't feel comfortable enough to make the decision so she contacted the doctor on call for Sam's pediatrician's office. That doctor felt it would be okay to keep the IV in until Sam is discharged. I asked her if she would mind contacting Sam's pedicatrician on his cell since I knew he would agree with Sam and I. She agreed and in a couple minutes she returned to let us know the good news.

It's the little things that make Sam so happy. His smile was from ear to ear as the nurse removed the last couple pieces of tape and removed the IV. We all hope we are in for a quiet night.

Of course I still have the after effects of strong antibiotics and the hyperness that follows respiratory breathing treatments to deal with. But tonight as I kiss my little man through the hole in his oxygen mask I am forever grateful for another day with him. I can handle the stress, premature aging and challenges that this perfectly imperfect, extraordinarily ordinary, unique one of a kind child challenges me to handle because he is worth it all...every single second is a blessing. Keep the prayers coming! We are hoping to be released tomorrow but pulmonary was still concerned about his need for oxygen and the crispy sound of his lungs. That's tomorrow's battle. Good night everyone!!

Medical Update on Sam Mayer!

I'm convinced that Sam just doesn't want me to get bored or possibly God is testing me or it's a combination of the two. Sam has had an increase in hip pain and is walking less instead of more. We headed back in to see his orthopedic surgeon and the x-ray unfortunately showed that we still don't have any bone regrowth in his left hip...so basically Sam still does not have a functional hip on the left side. Along with that concern is the chance that Sam has increased inflammation in the hip. It was suggested that we give Sam Tylenol and see if that calms the possible inflammation. So we gave him Tylenol but he continues to walk less and have a worse limp. Sooooo....we are headed in on Wednesday for a CT scan of the hip.

We are also considering a trip to Baltimore to have a one on one consult with Dr. Shawn C. Standard, a Perthes Specialist. I just want to make sure we are doing everything we can to give Sam a chance at having a functional hip, less pain and more mobility. Honestly...I just wish someone could fix it.

At the same time, Sam recently had blood work that showed his Vitamin D level was again well below the average. He has had two illnesses coming into the fall season which again raises my concerns about his compromised immune system. I have wanted to find someone that could do extensive testing and could figure out what is happening with Sam metabolically. Sam has so much going on that my gut keeps telling me that we have to figure out what Sam is over expressing, what he is lacking, how much yeast is he dealing with, what heavy metals does he have in his system, what are his amino acids looking like and what is the overall status of his gut and digestive tract. Yep, these are the kind of things that keep me awake at night.

Through a friend I was told about Dr. Norman Schwartz who is conveniently located in Mequon, Wisconsin. I am hoping and praying that Dr. Schwartz is the one who will be able to connect the dots and give us a better idea of how to help Sam biomedically. I believe that if Sam's body functions better, some of the issues that plague him like his compromised immune system, metabolism issues, vitamin/mineral deficiencies and overall function could be substantially improved. Your body working and functioning appropriately allows you to feel and function at a higher level overall. I'm not interested in applying patches or bandaids...I want to fix it. But Sam has always been a complicated puzzle. What is working for other children with Down syndrome doesn't seem to work for Sam. Like his NACD program, I need an individualized approach. Someone to look at just Sam and figure out not necessarily what is typical in the Down syndrome population but what is happening with just Sam. So I am in the process of getting labwork, urine samples and stool samples. Gosh, more experiences I never really wanted to understand...but Sam and God must feel I need to brush up on my biology. The picture is of the home test kits I need to complete in the next couple of days. I guess I should feel encouraged that Sam has already trained me on the use of urinals and bedpans...that training will come in handy.

I emailed Sam's pediatrician regarding the labwork that needed to be done. I know I have read on many blogs about doctor's that are not open to such thorough testing and think it is a waste of time and money. I agree with them if you don't have someone who can put the pieces together, analyze the data, make recommendations and then retest to see if the expected changes are happening. I have always held Sam's pediatrician, Dr. Dirk Steinert in high regard, he listens, he's open to discussion, he's willing to think outside the box but even I was surprised when he said "Yes, he could do the labs and he would like to come to Sam's next doctor appointment with Dr. Schwartz." I've never had a doctor offer to come to another doctor's appointment for Sam. I was equally thrilled when Dr. Schwartz said he would be delighted to have Dr. Steinert at the next appointment. I love when everyone begins to work together...I just hope this is contagious.

Now it's time for some heavy duty medical stuff. I'm not going to say I have all this right, because I hope to learn more but this should give you the gist of things. The explanations are from various websites. Sam's blood work will consist of:

peroxidase thyroid-Thyroid peroxidase test is a test that measures the level of an antibody that is directed against thyroid peroxidase (TPO).

Autoantibodies to thyroid peroxidase (TPOAb) are produced within the body. The presence of TPOAb in the blood reflects a prior attack on the thyroid tissue by the body's immune system.

CMP-The Comprehensive Metabolic Panel (CMP) is a frequently ordered panel of tests that gives your doctor important information about the current status of your kidneys, liver, and electrolyte and acid/base balance as well as of your blood sugar and blood proteins. Abnormal results, and especially combinations of abnormal results, can indicate a problem that needs to be addressed. The CMP is typically a group of 14 specific tests that have been approved, named, and assigned a CPT code

25-OH vit D-The 25-hydroxy vitamin D test is the most accurate way to measure how much vitamin D is in your body.

In the kidney, 25-hydroxy vitamin D changes into an active form of the vitamin. The active form of vitamin D helps control calcium and phosphate levels in the body.

TSH-The TSH test is often the test of choice for evaluating thyroid function and/or symptoms of hyperthyroidism or hypothyroidism.

Free T4-Total T4 and free T4 are two separate tests that can help a doctor evaluate thyroid function. The total T4 test has been used for many years to help diagnose hyperthyroidism and hypothyroidism. It is a useful test but can be affected by the amount of protein available in the blood to bind to the hormone. The free T4 test is a newer test that is not affected by protein levels. Since free T4 is the active form of thyroxine, the free T4 test is thought by many to be a more accurate reflection of thyroid hormone function and, in most cases, its use has replaced that of the total T4 test.

Free T3-A T3 test is used to assess thyroid function.

Ferritin-The ferritin test is ordered to assess a person's iron stores in the body. The test is sometimes ordered along with an iron test and a TIBC to detect the presence and evaluate the severity of an iron deficiency or overload.

Serum Copper-If a doctor suspects copper toxicity, copper deficiency, or a disorder that is inhibiting copper metabolism, then he may order blood and/or urine copper tests along with ceruloplasmin to help evaluate the person's condition.

Plasma Zinc-Plasma zinc levels have been found to be dependent upon vitamins A and D. This suggests that a Vitamin A or D deficiency could cause a secondary zinc deficiency and that for treatment of zinc deficiency one should ensure adequate vitamin A and D intake.

Carnitine-free, total, esters-The primary function of carnitine in the body is to regulate fat burning and to help the body use stored fat as fuel. L-Carnitine is responsible for transporting fat to the powerhouse of our cells called mitochondria. Unless fat makes it to the mitochondria, it cannot be burned, no matter how much you exercise or diet! Carnitine works best with a diet low in carbohydrates and adequate amounts of protein, omega 3 fatty acids, and CoQ10.

Ammonia-The ammonia test is primarily used to help investigate the cause of changes in behavior and consciousness.

IgM, IgA, IgG titers-total-IgA, IgG, and IgM are frequently measured simultaneously. Evaluated together, they can give doctors important information about immune system functioning, especially relating to infection or autoimmune disease.

Homocysteine-A physician may order a homocysteine test to determine if a person has B12 or folate deficiency. The homocysteine concentration may be elevated before B12 and folate tests are abnormal. Some doctors may recommend homocysteine testing in malnourished patients, the elderly, who often absorb less vitamin B12 from their diets, and those with drug or alcohol addictions.

Hgb A1C-The HbA1c blood test — also called glycosylated hemoglobin, glycohemoglobin or A1c — estimates how well blood sugar has been controlled during the previous three to four months.

Plasma Amino Acid-This test is conducted in order to detect the content of amino acids in the blood. An elevated level of a certain amino acid is strongly indicative of a problem in the ability of the body to metabolize that particular amino acid. Improper nutrition, some medical conditions and fevers may cause a fall in the amount of amino acids in the blood. This test may also be done to detect such lowered levels.

Ionized Calcium-A blood calcium test is ordered to screen for, diagnose, and monitor a range of conditions relating to the bones, heart, nerves, kidneys, and teeth. Blood calcium levels do not directly tell how much calcium is in the bones, but rather, how much calcium is circulating in the blood.

Reverse T3-In times of stress, the body may need to conserve energy. Since thyroid hormone acts like our internal thermostat, thyroid hormones may be suppressed in times of stress. One way this is done is by converting the thyroid hormone T4 into an inactive form of the active T3 hormone called reverse T3. This lowers the amount of available active T3 which can lead to hypothyroid type symptoms.

The home tests are Urine Toxic & Essential Elements and Urine Toxic Metals from Doctor's Data. These tests: Urine toxic and essential elements analysis is an invaluable tool for the assessment of retention of toxic metals in the body and the status of essential nutrient elements. Toxic metals do not have any useful physiological function, adversely affect virtually every organ system and disrupt the homeostasis of nutrient elements.

We are also doing an Organic Acids Urine Test from The Great Plain Laboratory. This is what they say about this test: The Organic Acids Test (OAT) provides a metabolic “snapshot” based on the products the body discards through the urine. These small, discarded organic acid molecules are byproducts of human cellular activity, the digestion of foods, and the metabolism of gastrointestinal flora. At certain levels, organic acids in urine may be indicators of toxicity or “markers” of metabolic pathways. Metabolites of yeast or gastrointestinal bacteria appear against the background of normal human metabolites and provide an assessment of yeast and bacterial activity.

The new and improved OAT has increased the number of tested compounds to 70 (including Creatinine) and two new ratios have been added. The new compounds detected may result from variations in vitamin and hormone metabolism, energy level, intestinal wall integrity, neurotransmission, and muscle function.

The OAT offers the most complete and accurate evaluation of intestinal yeast and bacteria. These factors are of critical importance in neurological, gastrointestinal, and movement disorders. Abnormal toxic metabolites of these microorganisms can cause or worsen behavior disorders, hyperactivity, movement disorders, affect energy levels and immune function. Yeast can attach to the intestinal wall causing “leaky gut” syndrome, which can cause or magnify food allergies, impede absorption of vitamins and minerals, and cause intestinal disorders. Many people with chronic illness, allergic conditions, and neurological disorders often have one or more abnormal organic acids in their system. Factors which can cause or affect the intestinal yeast overgrowth include oral antibiotic use, excessive sugars in the diet, selective or combined immune deficiencies, genetic and other factors.

Once any abnormalities are detected, there is a variety of treatment options available to treat the condition. Treatments include antifungal or antibacterial products, probiotic supplementation, vitamins, antioxidants and dietary modification.

Patients and physicians have reported significant improvement upon treatment including: decreased fatigue, regular bowel movements, increased energy and alertness, increased concentration, improved verbal skills, less hyperactivity, better sleeping habits, and decreased abdominal pain.

We are also doing the Metametrix Microbial Profile. This is what they say about this test: The GI Effects Microbial Ecology Profile identifies predominate, opportunistic, and pathogenic bacteria using DNA analysis. Other analytes included are yeast/fungi, parasites, adiposity index, and microbial and fungi sensitivities. This profile helps monitor the intestinal microflora of the gut that are central to colonization resistance, which prevents colonization of the gut by pathogens.

Whew...that's a lot of information. I am fascinated to learn what this will all tell us about Sam. I am hoping that this is yet another piece of the puzzle in helping Sam be healthy, happy and reaching his full potential. Keep praying!!!

One Day At A Time...But Can We Skip Today???

Today I took Sam in for a follow up appointment with his surgeon. I dropped Sam off at the entrance with his walker and then proceeded to park the car. I received an interesting look from a couple who watched us. I could only assume what they were thinking but the expression was one of surprise, maybe concern. Did they think I was dropping him off and leaving him there alone? Did they think Sam would freak out when I went to park the car? Please tell me they didn't think he was going to dart off into the road (I would think the walker kinda explained that situation)? Or were they surprised that Sam could do this or were they thinking I was a bad parent because I knew he could? Whatever they thought it again made me go to that place in my mind where I try to deal with other peoples perceptions of my child.

I shake it off and head into the clinic with Sam. Sam sees a man walking out and says "Hello Man!", the man immediately smiles and says "Hello". I smile at Sam watching him enjoy the interaction. As we approach the elevator an older man walks out, Sam says "Hello, Man!" This man avoids looking at Sam and hurries past him. Sam calls to him again but the man doesn't turn around. My heart breaks a little...the elevator door closes and I tell Sam that some people are in a hurry to get through life and forget to reach out to others but I'm happy he does. Sam smiles...he doesn't judge the man that didn't respond as I do, he never holds a grudge.

We check in and they send us in for an x-ray. Since Sam is walking and he hates to lie on the table they decide to take one standing up. They work with him to have him stand up straight with his feet positioned forward which seems a little uncomfortable for Sam but he cooperates and then they ask if it would be okay to lower his pants. Sam sorta drew the line in the sand there. I mean in his world, either your pants are up or they are down. He's not the kind of guy who is going to walk around with the crotch of his pants hanging down by his knees. I guess all my teaching on wearing your clothes properly and not letting other people touch you kinda gets blown out of the water in medical situations. So, I pulled his pants down and said "Sam, it's okay Mom will pull them back up in a minute." Thankfully it only took one try to get a good x-ray.

A good x-ray...meaning a clear image of Sam's hips...but not necessarily an image that you or I would look at and say those are great looking hips. I'm going to request a copy of the x-ray and will share that in a later post.

We were then escorted into a room and the new x-ray was up on the screen along with Sam's previous x-rays. The new view seemed to highlight the difference in the femur position of the left hip but it also showed an even flatter head. After all the research I have done on hip dysplasia and Perthes and all the beautiful diagrams of normal hips I have looked at...even I can see that Sam's hips don't look like any of the pretty pictures. All the hardware still glared bright white on the screen, again causing me to cringe a little bit. Sam's femur on the right side is not angled like the corrected left side, it is straighter and the hip socket is shallow. The left side has a better looking socket and a better angle but you can't help but notice the missing ball top.

I began to come to the realization that this twist in the journey is far from over. I didn't expect to see a beautiful round ball at the top of the femur but I also didn't expect to see further bone loss.

Sam has had a lot of twists in his journey that have brought us into different areas of Children's Hospital...areas I had hoped to never visit. The first area was Cardiology. Sam was born with an ASD or hole in his heart. When he didn't make progress closing the hole on his own he was scheduled for open heart surgery when he turned 3. With the help of a nutritional supplement and the grace of God...Sam's hole closed on it's own shortly before his 3rd birthday allowing us to bypass the surgery. Thank you, Lord.

The next area Sam decided to check out was the feeding/swallow/sleeping clinic. Sam didn't chew, his liquids had to be thickened or he would aspirate into his lungs and his tongue protruded more than normal. During his first swallow study I watched the thin liquid drop into his lungs, I watched him swallow pieces of food whole, I saw a delay in his gag reflex, a delay in his swallowing process and then I watched them put Sam's tongue in his mouth, close his lips and at the same time close his airway. Sam could not put his tongue in his mouth, close his mouth and breathe.

The swallow study moved into a sleep study which showed that Sam had reflux and severe sleep apnea because his tonsils and adenoids uninfected took up 70% of his airway and then there was that tongue. My Mom came with me to the follow up appointment to the swallow study. We were told Sam had dysphagia (a late swallow), all of his liquids needed to be thickened to keep him from aspirating, he would need extensive oral motor work...but that was the good news. The thing they were really worried about was Sam's breathing issue. We were told if this continued and his mid face did not grow out enough they would have to surgically assist. This is when we learned about distraction osteogenesis. I watched my mother grow pale as they described the medical procedure which included peeling the face down, screws, turning pins and numerous procedures. Sometime during the explanation I simply went numb and stared at the little baby in my arms watching him smile.

After this appointment was the follow up to the sleep study. At this appointment Sam's ENT announced that Sam would become a pulmonary cripple if we did not have his tonsils and adenoids removed immediately. Harsh, YES, and again I found myself in the parking structure of Children's Hospital crying my eyes out while Sam slept in his car seat in the back.

Sam had his tonsils and adenoids removed and has since had his adenoids shaved twice. His breathing improved and so did my sleep cycle. He went in for his follow up swallow/sleep study and my Mom and I rejoiced when we saw them put Sam's tongue in his mouth, close his lips and this time the airway remained open. During his sleep study his oxygen stats stayed up and his sleep apnea disappeared. Thank you, Lord!

Due to Sam's respiratory and immune issues we still hang out in Pulmonary, I'm hoping to graduate from that area someday but I'm not holding my breath...pun intended.

We also frequent Audiology, ENT and Speech appears to be a long term commitment.

And now Orthopedic. Today I sat in the appointment as Sam's surgeon again explained the advanced stage Sam's Perthes is in. He explained that the surgery was successful to deal with the primary diagnosis of hip dysplasia but Perthes...Perthes is a nasty disease, Perthes is a rare disease and Perthes is different in every person who gets it. Sam will continue to have good and bad days, he will continue to have pain, his gait is probably forever changed, the Perthes may have now affected his growth plate and cut off the blood supply to the growth plate, the ball may not grow back or grow back enough, he may still end up needing a hip replacement....are you getting the gist of this appointment.

Sam's reaction...he hugged his surgeon and thanked him. Were we in the same appointment?

Or is Sam again trying to teach me that today is still a good day, no matter what happens, no matter who we see, no matter what we hear...the fact that we simply...are....is the important part...the rest is just details.

Continued prayers for Sam's growth plate, bone regrowth, improved gait, less pain and thanking God that Sam is Sam!

An Update and More Surgery For Sam

I know you're thinking like me...really....hasn't Sam gone through enough but unfortunately Sam needs to have dental surgery on Thursday at Children's Hospital in Milwaukee.

I remember a time when going to a dentist seemed easy, just an everyday event...and then along came Sam. Sam's regular dental appointments are no walk in the park. Sam has always hated anyone touching his head, unless it is Mom playing with his hair. I don't know about your dental appointments but Sam's involve a papoose board and mouth clamps and Mom wanting to curl up into the fetal position and rock but instead finds herself talking softly, singing or trying to calm Sam with a gentle touch. And when it is over, Sam will smile, hug and give high fives to all those that were originally responsible for making him so nervous and angry in the first place. It doesn't really make a lot of sense to me and is yet another moment in my life that ages me as if I haven't racked on enough years already.

Sam's teeth come in behind his baby teeth but the baby teeth never get loose so you can't really pull them out which may actually be a blessing. So when Sam needs more than a checkup we end up in surgery. Sam needs to have some teeth pulled, some teeth filled and possibly a cap or two along with extensive X-rays and Sam will have general anesthesia to make this possible.

As most of you know, general anesthesia is never a really great option with Sam. With Sam's respiratory issues we always worry. He tends to come out of anesthesia manic and swinging and then we go into a lovely pattern of shallow breathing. The last bout of anesthesia took us 4 weeks to get Sam's breathing back to normal but I'm thinking the massive pain medication was working against us too. We have requested our favorite doctor of anesthesia, Dr. Richard Berens, the only doctor who could actually get me to smile and laugh before and after Sam's hip surgery.

This week we take him off any supplements that thin blood which of course also kicks up the yeast in his system and his focus becomes weak. So, we ask for more prayers that Sam's smile looks even prettier and his breathing quickly returns to normal and we come home on Thursday.

I realize I haven't posted as much lately. I have had a lot on my mind which I will leave for a later post but I wanted to update everyone on Sam's progress. The last video you saw was Sam walking with his walker. Well check out what I caught last week:

Oh and by the way, yes Danielle I know how much you appreciate me posting your wake up look. You're welcome. Hee Hee! And look what I caught this week:

Sam now doesn't seem to want to bother with the walker and has begun to work on walking up and down the steps. I am thrilled and scared all at the same time. Sam is still in the breakdown stage of Perthes so I'm a little worried about the amount of walking he's doing. Also keep in mind Sam does not express pain which helps to escalate my worry and make my life more exciting. So he can have what looks like a really great day and then has trouble sleeping or puts himself in traction the next day. So you give him pain medication which just helps mask the pain and Sam thinks he's back to normal so he decides to overdo it again and the cycle continues. I will never get bored with Sam.

Along with all this excitement my system decided to shut down and I'm currently without a voice and struggling through a respiratory illness. Oh joy!! Children's Hospital called yesterday to review Sam's appointment and reminded us that if anyone is sick they should not accompany their child to the hospital. I looked at Jeff and said "Well, I guess you are on your own on this one." Jeff looked pale, confused and said, "You're joking, right?" I assured him that I will up my Vitamin C and Allibiotic so I can be there, wild horses couldn't keep me away. Yeh!!!

Hmmm, this image closely resembles how Sam comes out of anesthesia. Better get my chest pad and thigh high boots on. It's time for the rodeo.

Reflecting and Praying!

Wow, 2010 was an amazing and again challenging year. I'm pretty sure that God doesn't want me to get bored....honestly.....a little boredom would be appreciated. REALLY...I would be okay with that.

But when I look back on the past year I have so many positive things to reflect on. When a new year begins I always find myself looking back further than just that year, I tend to reflect on the progress I have seen through the years. This crazy journey I am on with my children requires me to always reflect on where we started and to appreciate just how far we have come. That reflection allows me to remain positive and focused as I start each new day.

Benjamin will turn 16 on January 23rd and he is hot on my case to set up his driver's test. Where did the time go?? I still look at Ben and see the little boy that felt the need to use his tools to take apart everything in my house. Ben was never happy until he had taken something apart, figured out how it worked and sometimes made it work better and other times just smashed it to bits. Hmmm, funny...some things never change. I was just looking at pictures on Facebook of his Rhino, the truck he bought when he was 14 that got rolled at J & H and his current love, the monster diesel that has caused the UPS man and I to see each other more than I thought possible. I used to get excited thinking someone sent something to me or something I ordered came in from Land's End but now I seem to only get packages from www.puredieselpower.com. Don't even get me started on the dating...still taking deep breaths to get through that.

Ben as a child always had unlimited energy and a never ending stream of questions which some felt was ADHD and that medication was a must. But I never went there...although the year I homeschooled him I was tempted. Instead my mind just kept telling me we had to help him learn how to use that energy productively and I had to come to terms with the fact that I was going to hear the word "Mom" a minimum of 1,000 times a day. I needed to learn how he learned, what worked and what didn't so I could help him and those that worked with him. I still chuckle to this day when I see Ben skip across a room because he is excited...it was always like a little release of stored energy. I have been negotiating with Ben since he was three and I often feel that he just gets better at it and I get....well, more tired. Ben and I have a point blank relationship. He has never held back in letting me know what he is thinking or how he is feeling...I just wish sometimes he would curb his impulsiveness and comments so we could have a productive conversation instead of an explosive one but I understand the need to let off some steam too...it's just part of having an intense personality. I have always preferred that his outbursts be with me and not at others...because I love him, I can forgive him and I know the outbursts are often due to his feeling challenged or misunderstood. I walk a fine line with Ben trying to help him advocate for himself and at the same time motivate him to try harder.

I look at Ben and remember the frustrated little boy and the long hours of homework as he struggled to focus and as his struggle with reading, writing and spelling threatened to destroy his self esteem. We have come so far. I rarely have to do homework with Ben, we still team study for exams and I sometimes help him organize larger projects but he is doing well and has maintained his ability to remain in the regular curriculum without LD or special ed help. He is a fighter and I am so very proud of him.

And then there is Danielle, my sanity child...my ray of sunshine. She has an innate gentleness and kindness about her. She has always shined bright even when the attention on her brothers seemed to be greater. I have to remind Jeff and myself that she is a gentle soul, unlike her brothers more powerful personalities and she requires gentle persuasion. In recent years she has come into her own, able to stand up to Ben and put him in his place while getting Sam to do as she asked within a count of 3. Danielle makes me laugh, she and I are kindred souls and enjoy spending time together....of course sometimes during our road trips we all need a little space but really...who wouldn't after being locked in a van together for 10-15 hours at a time. We pick on each other and we laugh a lot. She is simply an amazing personality and I know God sent her into my life to help me maintain some sort of balance. Ummm...good luck with that Danielle.

Danielle is my sports playing, Zumba queen. She is so much more coordinated than me and I know she is going to do great things in this world and continue to be happy. Jeff and her share a special relationship since he is the driver to most of her practices and games. Don't even get the two of them started on John Tesch...they are addicted to his radio show...I get to hear so many random pieces of wisdom. Danielle was an amazing baby and toddler and she just continues to grow and develop into a wonderful, dare I say...teenager. I love you Muttsy!

And Sammy...my amazing big guy. Oh, the lessons you have taught me through good times and bad. I still think about Sam on our road trip this summer climbing mountains, hiking for hours and never ever complaining that his hip hurt...but it probably did. This little trouper went on to learn how to ride his bike, I just watched the video the other night when I was feeling a little sad. He worked so hard to achieve that goal and took such pride in showing everyone what he had accomplished. As I watch the video I can't help but notice how stiff his left hip looks...didn't notice that when we were in the moment. And now as Sam is in his 5th week in a full body brace he continues to amaze me with his compliance and attitude. I would not be this great of a patient and yet he greets me every morning with a smile and a hug. We are quite the pair in the morning, him in his body brace and me struggling to bend over for a hug because my back is so stiff.

I am thankful for the amazing road trip we had this summer, its memories have helped me get through the rough times. As I look at the pictures I smile at the happy times and relive the adventures we had. God surely set that trip up knowing what the next couple of months would bring.

The other night I watched a video when Sam was 3 or 4 and he only made sounds that we hoped would some day turn into speech. Sam still struggles with speech but he has come so far. He has tons of words now and many phrases to address his needs. I still wait and long for conversational speech, active listening and appropriate responses but I am encouraged by the steady changes I am seeing.

In Sam's 10 years he has had more struggles than most of us will face in our lifetime but he never lets that get to him. He just continues on with a confidence and attitude that all of us should learn from.

Ben, Danielle and Sam have taught me to change because that's all I really have control over. I determine how I talk, act and feel and in kind that determines how my children talk and interact with me. Ben's difficult situations challenge me to treat him the way I would like to be treated without bringing in the emotion or negativity that so often can take over our interactions. Both Ben and Sam love attention, but Sam is teaching me the power of positive attention. He requires me to place more emphasis on the things done right than what he attempts and is unsuccessful at. If I get frustrated he is more than happy to follow suit and just shut down. I am a work in progress and if I am tired or anxious I struggle to maintain my composure but I try to remember the lessons Sam is so desperately trying to teach me. I love you big guy!

I have never been a person that made New Year's resolutions...I instead make daily resolutions. I resolve to treat my children with positive attention and to be open to their level of communication. I resolve to focus on the positive aspects of my life and count my blessings. I ask the Lord to guide me every moment of every day...I can't do this life alone. I have often had people tell me I'm an amazing Mom and they don't know how I do everything I do...but if I'm honest...I'm just a regular person that has been put into extraordinary situations and by the grace of God, we get through.

This year I hope to open my heart and mind in order to continue my efforts in building community around Sam. Sam and I have been together since day 1, during hospitalizations, medical crisis, homeschooling and home therapy and everything that has been required due to his medical and immune system issues. We have been through a lot and we enjoy each other and work well together but Sam needs to learn how to interact and work with others too.

This is an issue that is so hard for me.

I get anxious when I see someone interact with Sam and he gets frustrated because they don't understand him. I get anxious when Sam won't show his skills and abilities and I worry that a teacher or therapist will lower their expectations instead of figuring out how to work with Sam. I get anxious when I see another child ignore or treat Sam differently. I get anxious that someone will miss a subtle change in Sam that is a red flag for me that medically something is about to happen. I get anxious that Sam will be overloaded by too much sensory stimulation and his behavior will reflect that. I get anxious that a child may run into and bump Sam causing him to fall on his fragile hip that has just been rebuilt. I get anxious that someone may not recognize that Sam's behavior is a pain reaction and not Sam being stubborn or non compliant. I get anxious that both children and adults will talk less to Sam because he is difficult to understand or he doesn't always answer appropriately. I get anxious that someone may perceive Sam's ability as low due to his limited speech expression instead of giving him other ways to express himself appropriately. I get anxious that someone will misinterpret a hearing issue as a cognitive issue. I get anxious that Sam will get frustrated and shut down. I get anxious that Sam will withdraw and enter his own world.

I...just....get....anxious...

because I love this little boy with all that I am. I will end with something I found on a fellow blogger's site, thank you Debbie at Finding Normal, http://debbie61497.blogspot.com/:

WHEN

When you are the neediest,
He is the most sufficient.
When you are completely helpless,
He is the most helpful.
When you feel totally dependent,
He is absolutely dependable.
When you are the weakest,
He is the most able.
When you are the most alone,
He is intimately present.
When you feel you are the least,
He is the greatest.
When you feel the most useless,
He is preparing you.
When it is the darkest,
He is the only Light you need.
When you feel the least secure,
He is your Rock and Fortress.
When you are the most humble,
He is the most gracious.
When you can't,
He can.
~Author Unknown

The Rollercoaster of Life!!!

I'm a little behind in updating the blog...because honestly I think the lack of sleep finally caught up to me. On Friday we took the ambulance to see Dr. Thometz for the post op. appointment. The incisions looked great and are healing nicely. Dr. Thometz showed us Sam's X-ray from after the surgery...yep I winced. That's a lot of hardware in one little boy. He has a plate along his femur and 4 to 5 screws including one going to the hip, he also has hardware along the edge of the hip. Ouch!!!

We then swung by Children's Hospital so Caz from Hanger Orthotics could check and tweak the brace and show us how to tighten and line everything up. As Sam moves more he will loosen things up and we will have to use Loctite and some Allen wrenches to keep everything in line. More fun!

Sam has been working hard on his respiratory exercises and has not needed any oxygen, even at night. His heart rate and oxygen stats have both returned to normal. We are on a uphill trend. By the way, that's Grandma, my mom and yes she is a saint!!!

But then...

Friday night Ben came home, went to the bathroom and then woke me up to tell me he had thrown up all over the floor in the bathroom. Oh joy!!! Yep, that kicked in the whole Suzy Germ

a Phobe phase and I began to sterilize the house, cleaning up the bathroom, wiping down door knobs, light switches, handles and anything Ben could have come into contact with using Clorox wipes. I must have washed my hands 20 times during this process. YUUCCKKK! I quarantined him to his room and told him if he needed anything he could call me on his cell phone. I Lysoled each room and told Danielle not to use the upstairs bathroom until I could sterilize it. Argh, we can't do the flu now. Sam can't get sick. Didn't Ben read the signs posted at the entrances to our house????

Unfortunate for Ben but fortunate for Sam we came to the realization that both Ben and his friend James got food poisoning from the subs they ate for dinner.....so no flu. WHEW!! Oh, and I didn't make the subs either...just in case you were wondering.

However, another night with limited sleep for Mom and another ton of laundry. Sssooooo....on Saturday Mom required another afternoon nappie and since my family members did not want to see a repeat of my last meltdown they were happy to comply. For a special treat Jeff picked up 2 lbs. of crab legs from Ghostown (a local restaurant) for Danielle and I to enjoy. As you can imagine, Ben looked a little green when he smelled what we were eating. Kinda serves him right after making me freak out and clean the whole house the night before. Hee Hee

During this last week we started to get Sam moving more...even if it is just his upper body. I brought out his favorite Trio blocks to snap together some cool towers and buildings...of course under the ever watchful eye of Buddy. He was supervising the construction.

Then we brought out the puzzle board and had him work on a couple of his 60-100 piece puzzles. He just loves puzzles.

Ben finished designing, welding and painting Sam's over the bed contraption to attach his basketball hoop and other items too. It's heavy duty but there isn't much that Ben owns or designs that isn't heavy duty.

Then it was time to get the computer games, programs and academics going again. With a little move of the bed I was able to get the mouse and screen on Sam's table and away he went. Time to wean him off the TV and get him engaged in other things.

And you can never go wrong with Play Doh. Sam tried to feed some of it to Buddy but he wasn't interested so Sam decided he would mush the colors together. Oh well, I always thought the colors looked nicer swirled together, it gives your creation more dimension.

We were again on an uphill trend.....but then...

On Monday Sam began to cough and sounded kinda gunky...and yes that is a technical term. The nurse was coming to view the incisions and assist in the bandage change so I had her listen to his lungs. Thankfully they sounded clear...we are hoping that the coughing is finally some good movement in the lungs and not illness related. Fingers, toes and eyes crossed!!!!

Today Sam was still coughing, but no fever, his disposition was good and he looked good. With Sam you have to go by your observation because he's not going to offer a lot of verbal assistance. I asked him, "Does anything hurt?" He smiled and said, "No, all better". I asked him if he was sick, he said "No doctor, no hospital". Hhmmm...not really getting anywhere with the questions.

I will check his oxygen stats tonight as he sleeps to assure myself that his breathing is good and productive. Overall each day gets a little easier. One day at a time, one day at a time...but it's a really good feeling to be 2 weeks on the other side of surgery. Just keepin on praying that he stays healthy...since I haven't gotten a call from Oprah offering to fly us somewhere sunny, warm and relaxing. Um, Oprah another option would be flying the whole family somewhere fantastic after we get Sam up and moving again. Really...I'm flexible!!!

Counting My Blessings!

Yesterday I had an opportunity to sit back and reflect while my little warrior happily watched a movie from Netflix.

We are over one week through the process and life each day becomes a little easier. I wanted to take a moment and thank some of the people that got us to this point. To these people it may just be their job but the time and attention they gave to Sam made me feel they understood how precious this little boy is to Jeff and I. I told them as he went into surgery, "Please, please take good care of him, he means the world to us!" and they did!!

I will start with Sam's surgeon, Dr. John Thometz, MD. Thank you for helping me understand the diagnosis of hip dysplasia and Perthes and coming up with a treatment plan for Sam. We hope and pray that Sam's activity level will come back and maybe even increase without the hip issues. Thank you for choosing a brace instead of a cast for Sam, neither is an easy option but the brace allows us to keep his skin healthier and is easier to work with. It's funny as we were driving to the hospital nervous and anxious I prayed that you were getting ready and driving in well rested, healthy, happy and at the top of your game.

Thank you to Sam's anesthesiologist, Dr. Richard J. Berens, MD who was able to make me laugh minutes before Sam's surgery when my heart and resolve threatened to break in half. Thank you for listening to us, for ensuring Sam's respiratory system was safe and that he came out of anesthesia well. You were a blessing!

Thank you to Sam's critical care pulmonologist, Dr. Daiva Parakininkas, MD who worked with us before, during and after to make sure that Sam's upper respiratory system was understood and safe. Thank you for your advice, consults and care! We are so happy to have you as Sam's pulmonologist.

Thank you to Sam's pediatrician, Dr. Dirk Steinert, MD. who has never failed to amaze me with his concern and devotion to Sam. Thank you for allowing me email correspondence, your cell phone number in case of emergency and agreeing to come see Sam if he becomes ill. You are truly one in a million and Sam and I appreciate how you have touched our lives. I hope the student doctors that work with you pay special attention to the relationships you have developed with your patients and their families. You are remarkable.

Thank you to the many nurses and assistants that helped to take care of Sam during and after surgery. From the operating room to the ICU and to 10 West, each of you helped make a very difficult situation easier. We had excellent nursing care with attention to both Sam and I, they were not just doing a job they were taking care of us.

I don't have the nurses names from the ICU, sorry kinda a hectic day for me. But I would like to personally thank Annette Husske, Veronica Weber RN, Laurie Minkley, Jodi Novak RN, Richard Haasch RN (and Joe too), Kristy Garven, Sandra Jardarski RN and Heather Bailing RN. Sam and I appreciated your devotion and care.

Ooops, forgot a very important someone. I would like to thank Caz from Hanger Orthotics for fitting Sam with his brace, tweaking it and checking up on him. We will see you on Friday. Just to let you know how above and beyond Caz will go, he is meeting us in the ambulance outside the hospital to check on Sam's brace and make any adjustments needed. You rock Caz!!!

I have to add a special thank you to another team of people that helped us with the coordination of care, medical equipment needed and helped us to get home. Thank you Julie Desorcy, RN who went above and beyond in helping me get everything needed for Sam's home care and was the go between of the doctors and staff to make things happen during our stay at the hospital. You wear your heart on your sleeve and we could tell Sam was important to you. Thank you!!!

Thank you to Robyn Treder, RN who had to jump through hoops to help coordinate all our equipment needs. Your patience and coordination skills amaze me. You were a blessing to us. Thank you to Kathy Fogl of the Aurora Visiting Nurse Association for all your help coordinating and training me on the home equipment and helping me locate other items to make Sam's care easier.

This took an amazing team of people and I could not have asked for a better team.

Now that we are home, I want to thank our visiting nurses, the follow up from Children's Hospital, MY MOM (I love you and you are a life saver), Sam's family that have checked in by personal visit, phone calls and email, Grandma & Grandpa Mayer who have provided a freezer, food, meals and friends who have offered help and meals. Thank you to Debbie Jackson, Julie Mayer, Katie Unti, Dave Boldt, Randy & Linda Buser, Jamie Rismeyer and everyone who has offered and helped with Sam's care. Thank you to Susan Carneol for her gift to Sam and Rep. Assoc. for bringing some poinsettia joy into Sam's room. Thank you to everyone sending cards and letters to Sam, he has just started to read some of them and we will be starting our Google Earth study next week. Thank to everyone who has emailed, commented on the blog or contacted us.

WE ARE BLESSED!!!!

WE ARE HOME!!!!

We actually got home yesterday in the late afternoon but with the ambulance ride, getting him settled, setting up equipment, getting equipment delivered, oxygen desaturations, 4 people to use a commode, a diarrhea accident and a 2:30 a.m. pain episode...I just didn't have a moment to update.

WE ARE FINALLY HOME!!!

Let me start with Friday morning. Sam and I both finally got some pretty good sleep until 5:30 a.m. when pulmonary decided to have a consult with me. They said the dreaded words...maybe he should stay one more day! They were still concerned about his sluggishness, breathing shallow and requirement of oxygen. Sam and I were thinking "BYE BYE".

After a few rounds of negotiations we all agreed to send Sam home with oxygen and a pulse ox which would help us monitor his oxygen. The ambulance was set to pick us up at 3:00 p.m.

FREEDOM!!!!

Physical Therapy came in to show me how to put Sam comfortably in a wheel chair and to

measure for the one we would need at home. It went well until he got bumped getting out of the chair and had a pain episode. I took a few pictures of Sam in his wheelchair. First I asked him to smile, yep that looks natural!

Sam can only be in a wheelchair at a 30% angle and he doesn't want to sit in it very long.

I also took a video of my very sluggish, really kinda out of it big boy.

Our first night home was kinda a nightmare. Sam was still sort of out of it, we had a wheelchair, commode and oxygen delivered. I was setting up equipment, visiting with family and trying to adjust to my new reality for the next 6 to 8 weeks. Sam just didn't want to keep his oxygen on and he had a few pain episodes. We tried to put him on the commode which took 4 people and was back breaking work for zero results. He ended up having an accident due to diarrhea around

11:30. After Jeff, Ben and I got him cleaned up and situated we all went to bed. Sam continued to pull off his oxygen setting off his pulse ox meter and then around 2:30 a.m he had a major pain episode which left him awake and feisty. At about 4:00 a.m. I finally had to wake up Jeff and tell him to take over...I was exhausted and feeling very done with the evening.

But what a difference a day can make. Sam woke up today happy, alert and worked hard on expanding his lungs and keeping his oxygen levels up. I was able to remove his oxygen for most of the day to allow him some movement and I got to see that beautiful smile again. He is now adjusting well and after a visit from the nurse we have figured out some more of the challenges.

I want to thank everyone for their prayers, John Henry for his cards, Deborah for her brownies and card, everyone who sent emails or left comments on this blog, everyone who has begun to send Sam letters for his geography lesson and especially the nurses and doctors at Children's Hospital who took such great care of Sam while he was there. This was a difficult situation that was made so much easier by the many helpful people we came in to contact with from the doctors to the nurses to the residents to the office people. Sam and I felt blessed in so many ways!

Here is Sam in his new set up. He loves the Christmas tree and pellet burner and Buddy is so

happy to have Sam home again.

Yep, his smile and personality is back. It's good to be home.

Good night everyone, looking forward to watching the snow fall tomorrow with my little warrior!