The thoughts in my head.

This was written previously. Michael is out of the hospital. This was written on Wednesday the day we brought him into the hospital. He is recovering at home. Pretty congested and coughing a lot. We are keeping him on pedialyte but home to resume normal feeds tomorrow!

This morning (Wednesday) started out rougher than I thought. I did the very silly thing of not checking my planner this week... and forgot what today was. I knew the therapist was coming but I had forgotten my earlier commitment to watch two other children this morning. The good thing is that I remembered before they came and jumped out of bed and got dressed and told Mike in a very rushed way to expect company. We love these little boys and they are so much fun to have around.

I went to gather the twins from their cribs and as I was undoing all of Michael's wires and tubing and unbuckling him from the seat he sleeps in I heard a pop and the accompanying cry that goes with it. Yep, his feeding tube was out again!!! Unfortunately this has been a weekly experience for the past several weeks. It happened last Friday while my friend Karen was baby-sitting and thankfully my mom was able to put it back in... after some directions on the phone with Mike. It happened the week prior to that incident. I was taking him out of his car seat to go into Barnes and Noble and the tubing snagged and it popped out and then I had to look for the mickey button itself... the balloon for his stomach... scrambling under and over the seats in the suburban til I finally found it on the floor in the way back. I rushed into the store people refusing to help me with the door and moving in my way... I couldn't shout at them... "Hey, my son's stomach is open and I need to put his feeding tube in- please move it." People wouldn't get it. It was frustrating dashing back to the bathroom with him in my arms crying as I clutch his tube and it's parts and get the syringe ready to deflate and re-inflate the balloon.

It's painful when it comes out.... the balloon coming out of his tummy still fully inflated...

And then this morning... once again.

He changed colors twice yesterday... unable to breathe momentarily... watching him go pale, and then light blue to purple. i hate it. It's frightening. I can't tell if he's just refluxing really bad. He ended up having a small piece of paper in his mouth. It seemed to be better once we got that out. But there's still something that can make me nervous and watchful. He will continue breathing on his own shortly after the episode... but I can't tell if it's just something that happens when he refluxes or is straining in some way.

His therapist is concerned he might have an ear infection or respiratory infection. He's very congested and mucousy... and when he's thrown up lately... well, it can aspirate and get into his ears... bummer. So we want to rule that out.

I look over at him laying on the bed clapping his hands and smiling... but I know just as quickly and intermittently he'll let out a cry, that breaks my heart, and I can see the pain on his face. Unsure as to it's cause but I recognize that it's pain that makes him cry. Is it his mouth that's healing? Is it teething? Is it an ear infection?

Ian is talking loudly in his crib. I can hear him in his room through my closet... the walls right next to each other. He has a horrific rash on his bum. I mean not only flaming red but bumpy and really, really bad looking.

Samuel will be getting home in the next 45 minutes from school. Mike has taken the children out on a walk... an expedition, through the woods and around the pond in search of snakes, lizards, turtles, and the barn- where they can see pheasants, doves, quail, and chickens. At least it's not boring out here. Libby loves to play with the boys that are here but I can see her hesitancy in how to deal with a boy that's older than her... as he directs her and takes her things and likes to play well, like a boy. It's amusing to watch her response and her reactions... I feel like I'm coaching myself as a 4-year-old. I wish I could show her how to not let it get to her... that boys hit and push when they're expressing affection. I can appreciate her frustration.. but it's hard to not wish that she could understand what I do now.

Observing Libby is like watching a little version of myself walk around. Her dramatic flair, her passion, compassion, mood swings, and creativity and imagination... all the joys and curses that go with it. I now know a little of what my parents had to endure and enjoy about me. Her dancing and singing and acting... her whining, and pouting, and fitful tears. Sigh.

I was talking with my friend Karen on Friday and I was struck by something she said. We were talking about grief. (She has lost her mother and I have lost my sister and nephew.) She was saying that depression and grief are very different. When you're depressed you can have faulty thinking... and often if this thinking can be changed then you're able to "come out of it"... also medicine can help, etc. But when you're grieving it's very illogical. You can know the truth and believe the truth but still be devastatingly sad and crushed in spirit.

You can be numb and walking around in absolute shock. You can be there but not there. Your mind plays tricks on you... giving you dreams that feel and seem so real only to wake and realize the person is gone. Allowing you to not be able to do normal tasks.

It was several years ago in a counseling session in PA where I first heard the term Post-Traumatic Stress Disorder (PTSD). I had never heard of it before and as my counselor shared what it was I felt like someone opened my diary and began reading aloud. I was shocked. It made sense to me. Why all of a sudden I couldn't do normal tasks. A pile on the stairs would stay unmoved for weeks and I felt like I couldn't physically move it. I was overwhelmed and panicky.

Where it was triggered was in the loss of my sister and nephew but it was also in watching Samuel almost die and the ICU experiences. Of rough labor, deliveries, and hospitalizations for my preemies. From some other issues in the past that occurred as a youth and again as a young adult. My counselor pointed out numerous reasons for PTSD... I was amazed at how many events in my life had culminated in this disorder. do I recognize that I am still responsible for my reactions and my choices, absolutely. But to realize that there was something very real going on... that it just wasn't in my head... it was such a relief.

Posttraumatic stress disorder
From Wikipedia, the free encyclopedia

Post Traumatic stress disorder

(PTSD) is an anxiety disorder that can develop after exposure to one or more traumatic events that threatened or caused great physical harm. PTSD affects over 7.8 million people.

It is a severe and ongoing emotional reaction to an extreme psychological trauma.

This stressor may involve someone's actual death, a threat to the patient's or someone else's life, serious physical injury, an unwanted sexual act, or a threat to physical or psychological integrity, overwhelming psychological defenses.
In some cases it can also be from profound psychological and emotional trauma, apart from any actual physical harm. Often, however, incidents involving both things are found to be the cause.

PTSD is a condition distinct from traumatic stress, which has less intensity and duration, and combat stress reaction, which is transitory. PTSD has also been recognized in the past as railway spine, stress syndrome, shell shock, battle fatigue, traumatic war neurosis, or post-traumatic stress syndrome (PTSS).

Diagnostic symptoms include reexperience such as flashbacks and nightmares, avoidance of stimuli associated with the trauma, increased arousal such as difficulty falling or staying asleep, anger and hypervigilance. Per definition, the symptoms last more than six months and cause significant impairment in social, occupational, or other important areas of functioning (e.g. problems with work and relationships.)

Even as I'm writing this Michael had another episode. Crying, holding his breath... needing to rub his back and watch him return to breathing normally and settling down. And it triggers so much. Nights in the hospital. CHKD. CHOP. DuPONT. Children's hospitals. Ronald MacDonald house. ICU. Code blue. Not breathing. Intubation. Resuscitation. CPR. Loud beeping noises. Apnea monitor. Dreams/nightmares have mixed with real life. Flashbacks to very disturbing memories. Inability to focus or think clearly or rationally.

After Libby died I would panic every time I went to work. My heart would race. My palms would sweat. I would get nauseous and I kept feeling like I was going to die. Even just writing this and remembering is causing the same anxiety, panic, and feelings. It's amazing how just remembering affects my physical body. It's in these moments where I can see how far I've come... and be amazed that I'm in the place I'm in now. I'm actually doing better than what I should be.

I realize that I have experienced true trauma. Not a joke. No just something to laugh at. But witnessing the near deaths of my children. Of driving in the middle of the night to Richmond to find out that my sister and her son were killed in an accident.

Well, I hate to cut this short. I had my friend come back and we hung out... it was really nice to spend time with Julie. We usually only get to see each other briefly. I also had another friend surprise me with a visit. Fun day.

But now, after a talk with the pediatric nurse we are bringing Michael in because of his color changes... there is never nothing going on around here. ( I love double negatives.)

We'll be going to CHKD. So please pray all is well... and we can figure out what's going on.


Anonymous said…
I love you. Praying for you today.


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