Tuesday, November 15, 2011

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!!


  1. I so totally feel your pain! Prayers coming Sam's way - hope he has a speedy recovery!

  2. Sending prayers your way. You are such an inspiration for me. Your strength is amazing. You are a great mom. I was wondering about your Medical Emergency Profile and what all it contains. Also what are the effects of strong antibiotics that you see?

  3. they're coming from here too... God bless you both.