I think I've done a fairly good job of holding in anger and frustration in a public fashion along this roller coaster journey thus far, but this morning's suture episode has broken me. I am going to post a rant here, and I'd rather not have comments right now that tell me what should have been done in this situation because it's over and done with. I just want to journal what has occurred and what I am feeling as the helpless mom to my warrior princess who has been through so much. My prayer is that one day Chrissie will get to read this journey through her momma's eyes via this blog, and I can't keep in my thoughts right now; I need Chrissie to know how I grieve for her and her situation.
My intentions are not to criticize hospital staff or doctors. It is what it is. There's nothing I can do to change things. And that's mostly why I'm ranting right now.
Helpless.
Chrissie is helpless.
Momma is helpless.
Neither of us can do anything to change the situations and crises that seem to occur around here on a daily basis, sometimes multiple times/day. One consistent thing is that Chrissie seems to like throwing the monkey wrench at morning shift change. (Glad she waits till the new staff is arriving, fresh and ready to tackle the day, plus more doctors are here making rounds in the mornings.) So, the timing is OK, it's just that I'm always feeling helpless. I can voice my opinion and advocate for my daughter, but in the end, I can't do anything to relieve the situation. I can't take away the pain. I can't take away the tears. I can't pick up my crying daughter and hold her and tell her that everything is going to be OK. I can't kiss the boo-boo. This is what moms do. I think the toughest thing about being here is that I can't do the typical fix the boo-boo things that moms are notorious for.
I am sitting here crying as I type this. I don't cry easily. Those of you who know me are familiar with my prayer that God would circumcise my heart to remove the calluses and expose me to the raw emotion type of agape love for others that only comes through God. The kind of love that God gives us. That's the kind of love that I've asked God to give me so that I can give it to others. God has been doing a mighty work renovating my heart over the past 8 years or so, since I really began to pray this prayer about circumcising my heart. Part of what His work looks like for me is the ability to cry with empathy, sympathy and emotional pain for others. I used to have such a calloused heart that I didn't cry for the orphan. I didn't really care that children in other countries who have defects such as Down Syndrome end up being chained to metal cribs with no clothing or food or stimulation or diaper changes for 23 out of 24 hours/day, with the hopes that they'll just wither away over time so that they do not burden anyone. My heart was so calloused that I would just ignore the hurts around the world. I mean, if it was my own child, sure I would cry if they had a severe illness or high fever or major boo-boo, and surely I'd attack with Momma Bear claws if someone were to torture
MY child, but I wouldn't react with that same type of love for someone
ELSE's child.
Then God started doing a great work in my heart. He opened my eyes to others instead of self. He caused me to hurt, physically and emotionally, for the orphan who is forgotten and hurting. He brought 3 orphans into my life to forever change me, inside and out.
This hospital experience with Chrissie, an orphan who was once the love of no one's heart, has changed me more than any experience I've ever been through. More than marriage. More than childbirth. More than anything I've ever been through.
That is why I sit here in tears typing up my rant. My love for my Serbian Sensation does not differ from my love of my bio son, Parker, my Colombian daughter, Meribeth, my bio daughter, Mattie, my bio son, Sawyer, or my Haitian son, Kiefer. Chrissie is my beloved daughter, whether she was delivered from my womb or delivered from my God. There is no differentiation in my heart.
So, back to my rage that fueled this rant: When I was told this morning that they were going to have to suture this chest tube back in, my first question was, "So, are they going to give Chrissie a local anesthetic?" The nurse said no, that she had given her some extra IV morphine for it.
Inside, I knew that wasn't going to be enough. My daughter has been on morphine for weeks now. One extra dosage of morphine will chill her out, but it does NOT take away the pain of stitches!!! (I've requested extra morphine for Chrissie on occassion when she's in pain from being repositioned or messed with or when her shingles outbreak was bothering her, and the extra morphine relieves some of the anxiety and mild pain, but I knew that extra dosage would not relieve the pain of enduring stitches.) So, I asked what other meds Chrissie currently had in her system. Oral Chloryll and her regular IV meds. Since I've been by my daughter's side 24/7 for 30 days now, I know this combo is not enough to help my daughter not feel the stitches. Chrissie was due for her oral Ativan and Methadone, but those take 30 minutes to work since they're oral (which are given in the feeding tube so they can go into her stomach). The nurse had to hold some of Chrissie's oral meds in the night so that her blood pressure didn't drop too low. (She also had to go up on Dopamine to .7 to keep her blood pressure up high enough, just FYI.) This meant that Chrissie didn't have the "good" pain meds in her system since the orals had worn off and were due at the same moment she would endure having stitches placed in the side of her abdomen. (Which, by the way, were not administered until after her procedure, when I requested something be done to help relieve my daughter's tears and pain after it was all said and done.)
Everything happened so quickly this morning after I was notified of this procedure, so I realized we were in another dire situation where they were acting quickly. My guess is that they were concerned the right lung would collapse (or perhaps it already was collapsed) by the build up of fluid that needed to be drained rapidly. As I was sitting beside Chrissie, crowded by people and equipment, I continued to question anesthesia and pain meds, but the doctor began stitching the hole around the chest drainage tube closed as I questioned things in a non-successful manner. Blood was pouring down Chrissie's side as tears poured from her eyes. There was nothing I could do. Chrissie's blood pressure sky-rocketed (during the entire procedure), indicating she was feeling the pain of her sutures being placed. I've never seen this amount of tears pour out of Chrissie's eyes since her 30 day stay in the hospital. It was like a faucet had been turned on, and the tears were literally steadily streaming from her eyes, while her head lay turned to the side, on her right cheek. It looked like a faucet of tears running across Chrissie's nose and onto the cloth that lay beneath her right cheek. The tears didn't come one at a time crododile tears as I've seen before. This was a steady stream, for about 10 minutes.
Do you know how helpless I felt?!? I could do NOTHING but watch my daughter "bawl" as she lay paralyzed on a hospital bed being sewn up. No ability to say how much it hurt, no ability to say, "STOP, I need more medicine, no ability to scream, no ability to thrash, no ability to kick or hit or protect herself from this pain because of the medically induced paralysis. The only mechanism Chrissie could control were her tears, which she shed heavily. I soaked up her tears and told her how sorry I was, but there was NOTHING I could do to take away the pain.
The suture ordeal lasted no longer than ten minutes, but the tears continued to stream from Chrissie's eyes for another five minutes, still with high blood pressure, and then tears pooled instead of streaming for another 10-15 minutes after the procedure. I kissed my princess, rubbed her hair, stroked her forehead, prayed over her and continued to soak up the tears, but what I wanted to do was pick my child up, wrap her in my arms and rock her while she cried. I wanted to protect her from the pain, but knowing I couldn't do a thing, I just sat here helpless and defenseless, much like Chrissie, only I have a voice, just no ability to do anything beyond speaking my thoughts.
So, I began to feel angry inside. I began to boil as I saw the amount of blood that ran down my daughter's side during the suturing, imagining how painful this must have been, knowing Chrissie felt this because of her sky-high blood pressure as well as the fountain of tears. Hard stuff to endure. Harder for Chrissie than for me, but I am her mom, and I love her dearly, and no mom wants to see her own child suffer, particularly as she stands bedside and watches the suffering with an inability to stop the suffering.
God reminded me of the millions of orphans around the world who cry this same river of tears on a daily basis as they endure suffering day in and day out, only they have no mommy beside them to whisper words of comfort or wipe their tears from their tear-stained faces. I was grateful that my former orphan was now home with her forever family, surrounded by a mother's love, and grateful that God gave me the ability to stay by my daughter's side, day in and day out, 24/7, so that she will always know how much I love her and how dedicated I am to her, my precious princess. And even when I can't do anything to fix the boo-boo, I am here to wipe her tears and tell her how much I love her and how sorry I am that she's having to endure this pain.
And grateful that God does the same thing for us, day in and day out, 24/7. He is here to wipe our tears, to show us His unending dedication to us, \to offer His unfailing love for us, to hold our hands and pick us up and rock us when we are willing to climb into His arms. I'm fixing to crawl into His lap and let Him comfort me, knowing He has my daughter in the palm of His hand, and He wants me there, too. Thank you is not enough.
PS The post-suture, post-chest suctioning chest x-ray showed that it worked. Chrissie's lung was no longer compressed by the fluid build-up. Thank you, God, for medical staff who know their stuff and are willing to work quickly to fix boo-boo's, even when I can't do anything to relieve the pain and suffering. Forever grateful to the staff at Methodist Children's Hospital!
Chrissie's photo about 30 minutes after her chest tube suturing.
May God circumcise your heart so that you will cry for the orphan and reach out to live pure and undefiled religion as expressed in James 1:27.
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