Dystonia Dawn: When I almost lost my son

June 2013 was a time of year that something very unexpected happened in my life in regards to being a mother. This was when I almost lost my son Michael, who was 15 years old at the time.

Just a 2 weeks before he got sick, he was sick but we had no idea!

So around end of May 2013 my son went on a church outing to Defy Gravity, it is basically a place with a lot of trampolines. While he was there he bumped his lower back on one of the padded bars and really did not think much about it, and neither did my husband nor I. Raising boys you sort of get used to several bumps and bruises.

He then started to complain a couple weeks later of what sounded like a pulled muscle in his left hip. At that time we did not think of any connection between the incidents that occurred while he was on his church outing with defy gravity. I remember him several times saying it just ached, I would give him ibuprofen and he would be ok for a while. It was not until June that things started to get worse. We took him to the doctor and they said maybe he pulled a muscle. So we were not worried at that point, he did not look sick, just complaining of some aching in his left hip.

That June he signed up to go to a church camp with some of his friends from TN, they were actually going to be close to our area. I remember him being very excited about being able to go! They were going to have all sorts of activities such as paint ball, hiking and etc. He was super excited about it. My husband made the drive while I was at work so that he could attend.

That same evening my husband received a call from my son. My son was saying he could not stay! The pain was too horrible. So my husband made the 3-hour drive there to pick him up. I was unaware and assumed when I woke up for work that my husband had already left for work. I did the usual; I got ready for work and got my son ready for day care. That same day my husband took him to the doctor, this time at UNC, they ran X-rays and said that they did not see anything. But the doctor was a bit concerned so he told my husband to let him know if anything got worse. I did not find out until I returned home from work, and I was a bit worried, but the doctor said possibly it was a pulled muscle. My husband did not want me to worry and be distracted at work, if you are wondering why he did not tell me. So Michael was told to rest and take ibuprofen. I did notice by what my son had told me that the ibuprofen was making him feel a little better, but it was wearing off very quickly.

That Saturday my husband decided to take me out for a little date. It was then that I knew something was horribly wrong. Michael called us while we were on our date telling us he could barely walk and was in horrible pain and the ibuprofen was not doing anything. At this point I was worried but it was not until I got home that it really hit home that this was more than a pulled muscle. I thought to myself “How horrible of a mother am I to go on a date!” But I can’t hold to much guilt to that because that Friday the doctor said he was probably ok, but to just keep and eye on him and have him rest.

The doctor that my husband took him to at UNC gave us a direct number to reach him if things seemed to get worse. That early Sunday morning we called him. The doctor told us to get him straight to UNC hospital, and he even called the hospital to let them know we were on our way! He was taken straight back when we got there. That night that he called us while on our date, he broke every towel hanger in the bathrooms because he could not bear weight on his leg! How horrible!

You see Michael is an upbeat child, who puts on a strong face just like his mom. So it is hard to see when he is really in pain or really hurting because he is still positive in so many ways.

When we get to the hospital and we tell them what is going on, they assured us they were aware. They immediately hooked him up to IV and monitors. I remember his heart rate was out of control, it was very scary, and to look at him you would not think anything was wrong! Even then while we were at the hospital he was making jokes and laughing. So it still seemed surreal that we may possibly have a real emergency on our hands.

When we first got to the hospital

When they tried to move him to take him back for his MRI he immediately went from 103 to a fever of 105! And it hurt him so bad for them to transfer him to a bed to get an MRI. They started pain management at this point. I remember he got goofy on the pain medication and started making jokes again, while having a fever of 105! So we waited….. We waited to see the results of the MRI, we did not know what to expect. Finally some nurses came in a hurry and brought out two BacTAlert blood culture bottles for blood samples. At this point my exact thoughts were “SHIT just got real”! Sorry for my language, but I believe I actually said that to the nurses. The reason I say that is because at the time I actually worked for the company that made these blood culture bottles that check for sepsis, I did QC Microbiology on them. So I know this is really bad when they have to use them. It was after that when his doctor came in and gave us the news.

I took this photo to show my boss at the time how serious it was, these are the blood culture bottles that check for sepsis

He told us to prepare ourselves, I let him know I was well aware what was going on by the simple fact they used the BacTAlert blood culture bottles. He asked us to sit down. I remember these words… “Mam, your son has an infection in his hip, sacrum (lower spine) and femur and it is pretty bad.” As I sat there with my hand on my sons shoulder I was completely calm, probably calmer than I ever have been. I asked the doctor “So he will be admitted and placed on intravenous antibiotics, correct?” The doctor said, “Yes, you are correct!” He preceded to say “He should be ok after the antibiotics, but there is a chance he will not.” and went on to say “Had your son not been brought here today he would have been dead in 24 hours, do you understand how serious this is?” I replied with a simple “Yes.” Michael had sepsis and osteomyelitis. I will first give a definition, sepsis, bacterial blood infection and osteomyelitis, bone infection. And what complicated things more, was that he had blood clots as well due to the infection.

I remember all of the emotions going on in my head, but never once did I doubt God through all of this. I just prayed constantly.

So after we got him to his room, I was advised that the following day that they wanted to take actual samples from the surrounding bone and muscles to identify the bacteria in order to treat him with the correct antibiotics.

My baby boy trying to do something, this I believe was day 3

He was first treated with vancomycin and another antibiotic and was on 4 different pain medications. Morphine, Oxycotin, intravenous Tylenol and an anti-inflammatory. He was taking so many I cannot remember them all. But it was the first 2 days that were the hardest. I have never seen someone in so much pain, specifically my son. I remember them wheeling him down for the extraction procedure and him screaming in pain when they moved him and begging for more morphine. I remember screaming for the nurses to keep my son out of pain at least! And to get the medication to him as soon as possible! Yes I was made aware that my son might not make it, but I did not want him to be in horrible pain if he were not to make it. I know that sounds bad, but in times like this, times when you know they may be the worse, a time I thought I may loose my son, I did not want him in ANY pain during the process. As I said earlier, he was not a complainer, so I know he really was in pain, and I explained this to all the doctors and nurses! Luckily they listened.

The second night in the hospital I remember they still had not put him on a morphine drip, I cant remember the exact term for it. They only had him on Morphine injections, Oxycotin, intravenous Tylenol and the anti-inflammatory and it still was not cutting it. I was made aware that this was the time that we were going to see if he would make it… This was the crucial 48 hours, waiting to see if the antibiotics would do what they were made to do. It was a time that we were not real sure which way he would go, he could either get worse or better. I remember the bruises he got from receiving the injections in his stomach for the blood clots. And praying they did not travel to any other part of his body. Praying he would not have a stroke, praying they would not travel to his lungs.. Just constant praying while I smiled, held his hand, and remained calm… for him.

I remember that night more vividly than anything I have ever experienced, I stayed at his side, and I did not want to leave him for a single second! I remember us talking and praying. I remember him telling me how bad he hurt, and I told him just layback and pray son… lay back and pray. God has his will and we are going to get through this. At one point he was able to doze of for a moment after a morphine injection, I was happy he was getting even a few minutes of rest. Then all the alarms from the machines went off he woke up, I remember the look on his face, and it was a look I did not want to see.. It was the look a child gives a parent, the look that the parent has all the answers, the look that they need comfort. He asked in a calm groggy lethargic voice “Mom am I ok, why are all the alarms going off?” I replied while holding and rubbing his cold hand “Sweetheart, its all ok, its just an air bubble in your IV, I will have the nurses come fix it?” I noticed his oxygen was very low, between 80 and 85 and his heart rate was around 250, while he was at rest. I left the room and the doctor was actually watching all of his vitals on the screen, she knew what questions I had. I looked at her and said, “It’s the sepsis isn’t it?” She looked at me and said, “Yes, it is affecting all of his organs and we are hoping that tomorrow he will pull out of this.” I felt the tears start to build up and I held them back. Because I did not want to go back into the room crying, I did not want him to be weak in anyway…

Day 7 and first day outside

Day 3 Big brother came to see his little brother

We both had one of these that we kept with us at all times

He did pull through! By the next evening everything was starting to get a little better and they had him on intravenous morphine so he could push a button. The day after that the bacteria was identified as Staphylococcus aureus and not Methicillin Resistant Staphylococcus aureus (MRSA). He spent 8 days in the hospital and 8 weeks on IV antibiotics that we administered at home. I could go on and on about this, but I think this is good enough for now. This was a very hard time for our family and to this day (He is now 17) I check on him at night LOL. We grew so close throughout this, and we are still very close today.

Before I was diagnosed with DRD. He was very scared. And I think it is because of the bond that we already had while he was in the hospital that got even stronger. He now comes and checks on me sometimes at night too, but since my diagnosis not so much, it has eased his worries.

I wish I could have gone into more details. But then this post would be very long!

One thing I can say, is not once did we blame God. We prayed a lot together, I know he was saved so I had no worries about were he would be if he had passed. And I think that actually gave me a little comfort and him comfort as well. But still to this day I worry if he gets sick, and he still is not the same, his immune system is low and he fatigues a lot easier.

To all parents, take what your kids say to you seriously. We did, and even when we did, we almost did not get him to the hospital in time. I cannot imagine my life with out him. And I mourn for those parents who have lost their children too early.

God Bless! More picture below :)