Safe and Sound

After what has been a scary, stressful, traumatic week for my family, I am so happy to say we are home and all doing well. We made it through the crisis and have a plan in place to prevent future incidents. We have so many visits, labs, tests, and followups planned with every specialist available: neurologist, nephrologist, geneticist, endocrinologist.

No one is entirely sure what happened. Preliminary diagnosis is some sort of mitochondrial metabolic disorder that made his blood react in super wonky ways. Plan is to try and let him be a normal kid, resume school and friends, and rush him to the ER if he does anything other than sneeze or fart. Any fever or vomiting and we are to go immediately. We have a letter to give to ER docs to tell them what labs to run and what to look for. So ya know, no pressure on me, not at all.

Kiddo is about 80% himself. He is still tired and pale, but is thankfully eating again. I was so happy to see him get all stubborn and stinky with me today, instead of weak and apathetic.

Mom (me) is about 60%. The first night back I did what I always do to numb myself, turned on dumb TV and ate everything in the house without sleeping all night. The adrenaline was so high I could taste it. Even though I was exhausted, hardly slept all week, and most of the sleeping was in a chair next to his hospital bed – I could not turn it off yet to sleep. The next day, yesterday, I completely crashed. I could not hold it together any more. I could not hold back the tears and the anger any more. I could not keep going. I’ve been strong all week with no breaks, always on edge that we might lose him, and never getting and answers about what was causing all of this. My own tummy shut down, waves of nausea, and then chills. I had no appetite. I got in bed shivering and shaking and fell into a fitful, dreamful sleep.

Today I had the first round of followups, with pediatrician and more bloodwork. Kiddo did not want anyone to touch him or look at him. He freaked out when his doctor tried to check the central line incision. I’m not sure he knows how of the pain he has endured came from his own body or what doctors inflicted, so he is understandably not as trusting.

We went over to the lab at the local hospital for the bloodwork – no appointments taken, walk-in only – and saw a crowded room. We waited over an hour, gave them the paperwork and were told we were there at the wrong time?! Apparently cortisol must be measured at 8am or 4pm only to get the peak values correct. No one told us this. So we had to go home and return several hours later and wait again. I was really upset by this, and it flipped something in me, as it one of several instances of lack of communication that resulted in inconvenience and frustration for kiddo and us. Everyone was coughing in that waiting room and I’m terrified we’ll all get the flu, and hate that we have to go back again. A total of 4 hours of doctoring today if you include driving and waiting rooms. I got angry and panicky all at once, and felt woozy. I realized I hadn’t eaten today, or yesterday, and was about to cry. We walked quickly back to the van. I immediately felt safer in my seat, though everything was spinning. I was happy Hubby was there to buckle in kiddo and drive us. Except I didn’t see that kiddo was still climbing in the back and I thought I would die when I heard his scream. I closed his finger in my door! I F-ing closed the door on his little finger! Me! I did it! I was too tired and dizzy to see him there. I lost it and started crying. Hubby yelled something like “I thought you saw him there behind you” and I cried harder.

Luckily, there is lots of padding in that door and his finger is so tiny it barely has a bruise. But it was about 10 minutes of both me and kiddo crying before we knew this. I just kept kissing him and telling him I was sorry. I was sure it was broken and was already picturing having to take him back inside to get an xray and splint. I was already swimming in inappropriate guilt from the past week, thinking I didn’t get him to the ER soon enough initially, that I should have seen the other signs more quickly, that I should have known how to take care of him better, that I should have listened more when he said his tummy hurt last month, etc.

We were going to take kiddo out to lunch after his appointments, but I asked to go home. Hubby dropped me off,  and I cried and cried and cried. Until I was done crying. And then I made myself eat some applesauce and laid down. But strangely I could not rest, I felt like doing something useful, so I washed a sink full of dishes, which was strangely calming. Hubby and kiddo came back from lunch and I was pretty much ok again. Pretty much. I just have so much ickiness to work through, and so much rest to catch up on. And prayers that kiddo will continue to get his energy back and that this is not going to the beginning of a dreadful life-long disease.

I have had so many flashbacks of my own hospital traumas. I feared what he would remember as traumatic and tried to make each situation the least stressful as I could. Luckily for him, the worst images are mine alone. He has no idea what his tiny body looked like curled up in the huge icu bed with a space age looking bipap mask harnessed to his head, heart monitor leads going to one computer, iv going to the pump, and a catheter. It was like he was a robo-boy. He fell into a deep sleep on the breathing machine, which made him look even more helpless. I can’t get that image out of my head now and keep looking at him, not believing he is still here with me. I nearly lost him on several touch and go horrific moments. Never has nearly been such an important word.

Thanks to everyone for the words of support – your friendship gave me strength and allowed me to do what I did not think I could do – remain present and calm in the face of fear. And thanks to Hubby for being there for kiddo, and for me. And thanks to Grandma for watching the other kiddos all week for us. Most of all, thank you god for not taking my sunshine away from me and letting me see his beautiful smile again.

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15 thoughts on “Safe and Sound

  1. I am so sorry! I have been away from my reader during the holiday break and I didn’t know all that you had been going through!! I am really hoping you get to the bottom of all this, and your little guy is feeling better soon! My boys are 5 and 2. They’ve both had their inpatient time, and my husband, too. It’s scary. (((hugs)))

  2. Thank, God! Praying the news only improves. As for the finger closed in the door, I think I’ve heard every parent tell this horror story at one time or another. It was a last straw. You made it through. So did he. God willing, he’ll remember a guys only lunch with his dad. 🙂 You are doing an amazing job of keeping it together, tears and all. God bless.

    • Yes I know this happens to other mothers, but thanks for pointing that out so I don’t feel so monstrous and put it out of proportion. It was the last straw, after protecting him so fiercely it just killed me to think I was the one causing him more pain. But we survived. Lots more tears have been shed and I think I’m finally leveling out.

  3. I’m so glad to hear the crisis has passed. I’ll keep you guys in my heart and hope that it was a very strange and frightening anomoly that will not happen again. You have been amazing, being strong for your little guy every second that he needed you. You are wise to let yourself breakdown a little bit, my friend. Holding all that fear in will do you no good at all.

    I’m proud of you beyond words.

    • Thank you Grainne. Your kind words helped me out. Had to completely breakdown the past few days, but getting back to level ground here. Kiddo seems fine, but it is hard to feel safe about it yet, still watching him closely, and no test results back yet.

      • …no results back yet??! What’s the hold up? That seems a long time to go without preliminary answers, at least. I’m really glad he’s feeling better…I’d not be able to take my eyes off him either though.

        Make sure that you and hubs are taking care of each other (or yourselves, however it works best right now). Really…if you need a friend, email me? I care about you and your family. xx Here if you need a shoulder. (You can fall apart all over me if you want…it needs to be done so you can rid your heart of all that fear). *hugs*

  4. I have missed so much, I am sorry. I am glad things are starting to look up and the little guy is home and starting to heal. I don’t want to sound trite, you will get through this. You are a good mom, strong and sure most of the time. You simply need to allow yourself to feel your fear, your anxiety and your exhaustion. You will be fine.

    • Thank you! I need to hear those words, I feel so unsure of myself. I couldn’t allow myself to feel it all while it happened, so the full force hit me. You are right. I just had to feel it all and let it go through me. I know now that the only way through it – is through it. No detours allowed.

  5. So sorry to hear what you all have gone through, but I’m glad things are better for now…I will keep you in my positive thoughts and prayers, too…having a child ill is beyond the most difficult thing, I believe..
    a year ago, we found out that our 21 year old daughter has a rare liver disease. On the outside, she’s beautiful 🙂 and all looks normal, but there’s something wrong with her liver. She’s not a drinker, smoker, no drugs, nothing…there is no cause and the only cure is a liver transplant within the next 5-10 years, for her survival. When we found this out, my husband and I lost 3 months of living. I stopped blogging and we only did what was necessary to move forward. Last January came and we had arrived at the “acceptance” stage. Then last year, she went through 3 more surgeries (4 total) and ups and downs. Now, a year later, the doctor’s can’t diagnose it for sure. Nothing is concrete with her case.
    She was able to transfer as a junior to her top UC and she’s now in her 2nd quarter and doing well. We were thankful she made it and this haunting thing didn’t hold her back. As a result of being busy with college and living on her own, she stopped taking the meds and hasn’t had any symptoms, which is good, but very strange. It only means that it’s lying dormant. My hubby and I wanted her to get lab work done when she was home for the holidays, but she didn’t. Too busy having fun, visiting friends. Out of sight, out of mind. She’s had the best attitude, but it’s hard not being able to contact her doctors because she’s an adult. She finally did email them so they know what is going on and I’m sure soon she’ll have another MRI or lab work…I’m anxious to hear their response.
    Anyway, I am so sorry for dumping all this on you. After this long message, I just want to say that I truly understand…I have cried so many tears, it’s amazing just how many I have stored up. And not knowing what will happen in the future is just daunting…I have nephews and a niece in their 30’s and now we wonder where Steph will be at that age. But, on a lighter note, we live “in the here and now.” That’s all we can do…thanks so much for reading and again, so sorry for the long reply. Many hugs and I’ll keep you in my prayers…
    Lauren

    • Lauren, I am so happy you shared this with me. So sad to hear about your daughter. I knew from your blog that something had happened, but I wasn’t sure what. You must be so strong for her, and all the not knowing is so terribly difficult. I am glad she is doing well now, but I understand why you wouldn’t trust it. And her being an adult adds a difficult component, as I at least feel in control of my son’s care. I appreciate the support. Feel free to email me any time, I’m a really great listener 🙂

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