Ethan settled in for a couple hour nap for the first time in days! He was actually sound asleep/sedated for a few hours without jerking and waking throughout. The docs started an Epi drip on him last night when he was struggling. He got weaned off that today and tolerated it fine. His swelling is down a little today and his numbers/vital signs are the most stable they have been in days. I just pray it continues.
It was very hard today because the nurse and nurse practitiner both asked me not to touch, comfort, or talk/sing to Ethan. He has been so irritable lately. When I try to sooth him it almost becomes worse because he wants me so bad. He just stares at me and reaches for me. He wants to be held and comforted by mom so bad. . . and it can't happen yet. He has way too many "things" preventing him from being held. Such as a ventilator, 2 chest tubes, 2 central lines, an arterial line, and meds like dopamine and epinephrine! Just to mention a few. It has been over three weeks since Greg or I held him last. As a matter of fact his surgery was one month ago tomorrow. Like I said, a hard day. But I am grateful for friends checking on me and spending time with me. It helped pass the time.
They couldn't start feeds today because he was on the epinephrine. They just weaned it off and if he tolerates no epi during the night they will start feeds in the morning. His chest tube output for today is 60ish between both tubes! Yea! They just need to start feeding him and make sure the thoracic duct ligation worked before they pull them. The ligation cuts out the lymph vessel that is leaking fat and such into his pleural spaces. Also, his chest x-ray looked better today. Baby-steps. . . For now they are not going to do tPA again for his small blood clots. He is on heparin and they feel that is enough for now. Sorry for all the details. . . but trust me, I could go on for awhile longer if I really wanted!
I often say I know the Lord has a plan for Ethan, I just wish I had a crystal ball to see it. I am sure that is what many are feeling right now. There are MANY of you out there experiencing trials you wish you had a crystal ball for too. . . For now we will just try to ENJOY the journey.
7 comments:
You're amazing Heidi! Still praying for that little man, and for you. So glad he's moving in the right direction, however slow it may be.
Lot of love,
Avery
This is great news, Heidi! We will take any good steps we can. I'm sorry you can't be close to him. That must break your heart. I know it breaks mine! We love you guys!
Heidi and Greg I am so proud of you and all that you continue to do. You are strength to us all! We are continuing our prayers. Love to all!
It just breaks my heart to hear you say you can't even touch, comfort, talk to your son. I'm so sorry! I remember being sad that, that was all I could do with Kyson and yet you can't even do that! I can't even imagine how wonderful it will be to hold him close again. I pray that it will be sooner then later. You are such an inspiration to us all.
I know what you mean about the crystal ball, so much. It makes you wonder about their future. He has been through so much already and is such a fighter. I wish we were all so strong. Love you.
Oh, my heart goes out to you not being able to touch and console. Hopefully, that will be very short term. Excellent news about the chest tube output. Sending Hugs and Prayers. Love Wendy.
Heidi and Greg, you both are truly have great strength. I would have broken down by now. Not saying neither of you have, but Heidi you never give it away on your blogs if you do.
I know how hard it is not to be able to touch/talk/sing to your baby. Your arms are aching just to feel him. He longs for you just as you do for him. I remember the day they came in and told me the same thing about Lily, I cried.
I a glad he has stabalized, one step in the right direction, lets just pray he doesnt decide to do any PICU dancing. I think mommy and daddy have had enough of a ride, you all need a break.
Our prayers continue.
Love, hugs, and prayers
Jenna, Lilyana, and the rest of my gang
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