We are still at home... and still on the morphine (Tripp is, not me... yet. Just playing... kind of).
I am tired. Not physically... becuase I've actually been getting more sleep than normal. But I am so mentally tired and emotionally frustrated. I'm so tired of seeing Tripp in pain. I just don't know what is going on. I feel like we are fighting a losing battle. He's still on the morphine.... and he's still in extreme pain. What can be hurting him SO bad that morphine isn't even helping? And now I don't even think the pain is associated with a skin infection because he's been on 2 different antibiotics for about 4 days now... it seems like he would be feeling better by now if that was the case. I really think it's just his little scrotum that is so raw. That's the only area on him that's really gotten worse that could be hurting him that bad. I mean I'm not man, but it seems like that area is pretty sensitive.
My heart is breaking as lie here next to my little man in bed. He sleeps right next to me in bed, so there are many of nights where I just lay with my head next to his with tears in my eyes. I just wish I could take it all away. It's the most helpless feeling in the world when your child is suffering every minute of the day and you can't do a single thing to make it better. While I was laying with him tonight, he was fussy and restless. Then he finally settled and had dropped his red ball (which he has been holding 24/7- even when he sleeps). I found it and put it back in his hand and he grabbed it, opened his eyes to peek and make sure it was the red one- and pulled it to his chest as if to "hug" it, and then started clapping with it in his hand. Talk about break your heart... That a ball comforts him and makes him so happy.
Just to actually see him smile these days is a treat. Not only does he NOT get to do what other "normal, healthy" 17 month olds get to do... he is in so much pain, that he can't even do anything. It is physically hard to watch him in this much pain. And if it is his little scrotum causing this much pain... it's not like his wounds heal... at all- so this is something that I guess we will be dealing with for a while. So what do you do? Do you go up on the morphine? And let him be sedated all day to keep him from pain? There's no easy answer... to anything with EB. It just sucks. EB sucks.
But I don't want to end in a negative... Once again, I know that God has a plan. The plan has just not yet been shown to me. I know that one day I will know why my little boy was chosen to endure this pain. And I know his rewards will one day be SO great... it's just a little hard to see right now.
"'For I know the plans I have for you', declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'"
-Jeremiah 29:11
"Then Jesus told his disciples a parable to show them that they should always pray and not give up."
-Luke 18:1
"Have I not commanded you? Be stond and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you whereever you go."
-Joshua 1:9
Love,
I'm praying for a good night for both of you and a much better day tomorrow. I wish I could do more.
ReplyDeleteCourtney I know watching him hurt is the hardest thing in the world. You have been so strong through this all and I pray for Tripp's pain to ease up everyday. I wish there was more I could do to help you and Tripp. It's frustrating as a friend knowing there is nothing I can do to help things get better for you. But I still pray. You are such a strong women and great mom that Tripp could not have gotten a better one and I could not have gotten a better friend. I love you and baby Tripp and I would just give anything for him to get some relief, still praying. Love, summer
ReplyDeletePoor little guy. I so wish he felt better. Sending hugs & prayers your way.
ReplyDeleteBrenda (Kansas)
Today is my Birthday and for my birthday wish I wish/pray that Tripp has a pain
ReplyDeletefree day and is able to enjyoy this day.
Paula(Norco)
i'm so sorry that tripp is still in so much pain, courtney. it breaks my heart to know he (and you) is (are) suffering so much. please know that i'm praying and hoping you'll get some answers sooner rather than later. i love you.
ReplyDeleteHi Courtney, Happy belated birthday to one of the best Moms I have ever "met". I am so sorry that Tripp is still in pain, I will pray that it eases and that he is feeling better very soon. Have his blood cultures grown anything? (((HUGS))) and prayers are being sent in your direction for you and Tripp! <3
ReplyDeleteDear Courtney: I am so sorry that Tripp is still in so much pain. I was talking to Meg about it the other day and we both think it is probably just an EB thing. God how I hate this awful disease. You are always in my prayers. I really don't know how you parents do this everyday.
ReplyDeleteExtra prayers for Tripp and you too. Hang in there, Keep the Faith. Love and Peace. Love Leah's Nana
So many prayers sent your way. I cannot even imagine the heartache you feel watching your son go through this. I can only compare it to my daughters month in the hospital and even then I know I cannot even come close to feeling your pain.
ReplyDeleteYou have a beautiful blessing from God though. Tripp has touched so many lives already and will continue to touch them. I know that he has made me so thankful for my 17 month old. Yes, we had bumps at first but it's nothing compared to Tripp. We think of Tripp constantly and pray for him every night ! God Bless you !
Courtney,
ReplyDeleteI was taken aback to see that you just turned 25 years old. You are doing an unbelievable job carrying a terrible burden.
I don't know of any other way to do this, but I'm asking other posters here to email me: vickib2 at AOL.com, so I can share an idea I have. (but not Courtney, because it's a surprise. : )
I may regret putting out my personal email, but I'm just going to go out on faith. I'm a 57-year-old grandma who has never met Courtney but has been moved beyond words by her blog.
I'm so sorry that Tripp is hurting so much. Maybe an external (Texas or ‘condom’) catheter would keep the pee away from his genitals so he can heal - perhaps even the internal kind would work as a last resort.
ReplyDeletePlease, look into it, I really think it may help.
All the very best.
Becca (PS I have a chronic pain condition and YES I would choose sedation over pain on occasion)
My heart is breaking up for you and Tripp. What did the doctors say about his scrotum? Is there anything they can do, such as what becca suggested ?
ReplyDeleteYou probably know this, but one of the side effects of morphine is extreme itching. After one of my c-section I got morphine and no one told me about itching and I itched my nose raw within hours:( so maybe it is taking away his pain but causing the itchies that he still can't get comfortable. just a thought.
ReplyDeletewhen Sami was younger and
had a bad wound that wouldn't heal I use to mix Vaseline, Zinc Oxide, Vit E oil and a tad of tea tree oil. I mixed it all together and put mepitel over the wound, this mixture over the mepitel and then Vaseline Gauze (this was before we had mepliex lite and transfer)and it helped to dry up the wound and help it heal. not sure if it would work for Tripp but I wanted to mention it just in case.
Praying for your sweet boy and for your family as well. I can't imagine what you are going through but know that I am lifting you up in prayer.
ReplyDeleteIt makes me so sad that Tripp is in so much pain. I wish there was something to help with the pain. All I know is that when a guy is hit in that area and experiences temporary pain (sometimes barely that area. I've seen it where I'm like,seriously, buddy that was mid- thigh at best! :)) they double over in pain, can't walk, can't talk. Your poor little guy is getting 100 times that much pain 24/7. You are completely right. EB sucks.
ReplyDeleteI HATE that he is hurting so badly. No two ways about it. EB sucks. I will pray specifically for his scrotum to heal quickly and that he won't be in so much pain. Tripp is such a sweet boy and VERY brave! I have no good wise words here, but please know that you are loved and prayed for in TX.
ReplyDeleteLove,
Laura
Everytime I read your posts I ache for some sort of relief for Tripp. I can only imagine how it feels to see him in pain...all day...everyday. Know that God sure as hell loves him and you and your whole family and know that Tripp knows you are doing EVERYTHING you can possibly do to take his pain away. xoxoxoxxox
ReplyDeleteHi Courtney,
ReplyDeleteI have never commented but have been reading for a while. I wanted to let you know that I am personally on 24 hour release morphine (Avinza) and have been on Opana (oxymorphone) as well. I have many opinions about it and if you would like to email me and talk to me about it, I am all ears. Some of my concerns are this...Once your body gets used to the dosage, you have to increase and once you have maxed our the dosage available without a ventilator, well there is nothing to be done but try another drug. Honestly, I have been on some type of daily Morphine as well as Percocet for going on 7 years now. I hate it. I hate the pain too, but honestly I wish someone had truthfully told me all about what I was taking on. I didn't realize that I would be a "legal junkie." (it sounds horrible, but it's the truth. I literally HAVE to have my meds or I get sick. The same withdrawal symptoms you would have if you were coming off any type of street drug that you were addicted to) That I would have to take my meds at a certain time every day or I would begin withdrawal (which is as bad as the pain itself). I didn't realize that I couldn't just stop the morphine when I was ready. No...that will take a rehabilitation clinic. And I am only 29. The pains is awful and I know that your little guy is in even more pain than me...but please just be aware of the consequences of the meds. It may still be worth it, but please do some research. For some reason my doctors aren't very upfront with me when I talk to them about it. I have had to learn for myself. If you have any questions at all, please comment letting me know that you would like my email address and I will give it to you. Because of the info I have written, I don't want to put my email address out there for everyone to see. I truly hope things improve for Tripp. I can't even begin to imagine what he and your family are living through.
-CKay
I'm still praying. I know that God has a plan for you guys, too.
ReplyDeleteMy heart hurts for sweet little Tripp.
Love y'all!
I follow you, but have never posted. One mom to another, I am so sorry Tripp has to go through this. I pray for relief for him.
ReplyDeleteSh
Hi Courtney,
ReplyDeleteIs there any kind of topical anesthetic they can give you for his little boy parts to help with the pain? Just a thought - always praying,
No words...just prayers.
ReplyDeletePrayers for you both, and a much deserved break from pain for you both. I know you think you're a mom, and you would do anything for your son, but truly...you are inspiring. I can't believe what you do everyday at such a young age. I'm going to try to follow your example and see far more joy in my life than sadness.
ReplyDeleteI, too, am another one of your regular blog readers who has never posted. I guess I just never felt like I had the right words. I just wanted to say that although I've never met you or your beautiful little angel, he has truly affected my life. Reading about him, and you, has forced me to think differently about things and even reinforced life lessons about always being thankful and appreciative for all the blessings I've been given, big and small. God is using your son's amazing strength and your remarkable strength to touch lives, like mine. This of course makes the situation no easier, but just know that there are lots of thoughts and prayers coming your way. Hugs, Lisa in Houma
ReplyDeleteCourtney...You are one AMAZING mommy.
ReplyDeleteI hope Tripp gets some relief soon.
Hugs- Denise WI
We are praying for Tripp and y'all. I wish there was something that could be done to take away his pain instantly, because Lord knows he deserves it. Like you said God has a plan...and it is hard to see it now but he still has one. I am glad you are keeping your faith and holding strong and I hope you continue too. I think about how courageous Tripp and y'all are and I know that I have never met him, but my heart aches for him. I could not even fathom what y'all are going through and I'm not sure if there is but if there is anything we can do for Tripp or y'all...let me know. We will continue to pray for Tripp and y'all.
ReplyDeleteRespectfully,
Edward
Courtney, I have known you since our days at good ole st. Joe. I have always known you to be an amazing and strong person. I wish I could say something inspiring and helpful for you and tripp, but I just wanted to say I am always thinking about you guys since I found out about your blog. I wish the best for you and your family.
ReplyDeleteLauren Patton
Courtney, I know we don't know each other that well, but my heart truly goes out to you and Tripp. Your words and verses have put tears in my eyes tonight. Sending lots of love to you and your precious angel. Keep the faith.
ReplyDeleteI know there's nothing I can say to help make it better, but I just want you to know I'm continually praying for Tripp and for you. I can't imagine the hurt you are feeling at watching him suffer. I pray God will give him comfort very soon from whatever is causing him the extreme pain, so that he can get back to his old self. Big hugs!
ReplyDeleteEven though Tripp is in so much pain he still amanges to be so sweet! I will say a prayer for tripp tonight! Sending love from Houston
ReplyDeleteCourtney, Praying for you and your little man. God does have a plan. Wish I could hug you because I am not sure my words can say enough. Tripp has touched so many of us and we all are praying for him everyday. Snuggle, snuggle, snuggle with your baby.
ReplyDeleteI've been following your story for a few months now and my heart breaks for you. However, I am inspired by your faith and your strength to forge ahead. I think you are an incredible woman and the greatest mom to your little guy. You are all in my prayers. Prayers for healing and peace - physically, mentally and emotionally. Oh, and you do have one handsome little guy!
ReplyDeleteI'm so sad that You and Tripp both are having a rough time. Part of loving someone is hurting when they hurt...nobody knows that like you do. I'm hoping someone can figure out what is causing Tripp's pain and a way to adequately manage it. Keep up your amazing work as a mom and advocate...thinking of you lots.
ReplyDeleteLove from MN