Sorry for not updating sooner; we had a rough couple days. Jane’s health has been mostly stable, a couple steps back and a couple steps forward. Today’s update will be a bit long, since we took a couple days off, and there’s plenty of new stuff.
Request: “Pediatric Cardiology for Dummies” doesn’t exist. If someone knows of a book like that, please let me know.
Jane’s health: she’s still very swollen, but her urine output is better, which is incredible news for us. Doctors and nurses are really ecstatic about that, and kinda make fun of themselves for getting excited about pee. But if they’re happy, then so are we.
Physiologically, Jane’s body is under more stress with more fluid buildup. If she’s edemic (swollen), then her heart has to pump harder, which she can’t be doing right now, cuz she just had heart surgery a few days ago. Her body is trying to get used to operating on half of a heart. Our hearts have 2 ventricles, or pumps, that push blood throughout the body, and Jane’s right ventricle is not being used. Other side effects of her edema are poor liver and kidney function, which just make edema worse. Edema also causes the heart work harder. So you see how important it is to get rid of that fluid. They have her on diuretics to help with that, so it looks like things are getting better, very very slowly.
Liz and I had the best day of our life this last week, when Jane was a little less swollen, heart working good, and she was opening her eyes for us, as well as moving her hands and feet slightly. Although that was such a therapeutic day for us, she hasn’t opened her eyes since, and has been more sedate. The doctors found that she wasn’t ready to handle the cognitive stresses of a new heart, so they induced her with sedation and relaxant to keep her more calm and have a bit more control over her vitals. But I can tell Jane does get a little perked up when she hears her mama’s voice and feels her touch.
They were giving her 1ml per hour of breast milk over the weekend (about the size of a small marble), but stopped it yesterday because of her tachycardia (raised heart rate), and they didn’t want to have extra “stuff” in her body in case of an emergency. BUT, at rounds this morning, the doctor decided to continue the breast milk. It’s such a tiny dose, and its fed thru a tube in her nose, but hey, it gets us excited.
Big news: doctors have been watching the flow thru Jane’s plumbing very closely since surgery, and found in her heart that there is some back-flow (blood going the wrong way) in her solo left ventricle. They decided that its one of two things, maybe both: 1) excessive blood volume going thru her ventricle with some naturally leaking backwards thru her mitral valve, which may correct itself as the heart gets comfortable, 2) the first surgery may have caused the geometry of her valve to change just enough that it isn’t closing properly. We hope it’s only #1, but if it’s #2, that means probable surgery, very soon. They like to correct heart problems before they see any more indications of heart failure.
To end on a good note, our new room at Ronald MacDonald House is very nice. For all you Sprinkles Cupcake lovers, we’re so close that we have a perfect view of Sprinkles right out our window across the street. Jealous?
Lastly, we had a couple visits, phone calls, emails, and texts that really did a number on me. Some of you will never know how uplifting you can really be (sorry if I don’t respond). I’m blown away by your constant concern and praying for us, lifting me up out of the gutter.
During the superbowl yesterday I only checked the blog about 96 times for updates.
Ill keep my eye out for the book request.
Glad to hear you guys got settled in the new place. Please text if you need anything.
HI Daniel and Elizabeth, was thinking about Jane a lot this weekend and thought I would check and see if I could find your blog. I DID!!! I hope you guys are doing well enough considering everything that is going on. I was surprised to find out last monday that Jane had been transferred to Stanford, but happy to see she is getting the care she needs. Your blog is beautifull, and I hope you liked her sign I made for her, I’m glad I finished it the last night that I had her. My family is praying for you both and Jane. It was really nice getting to know you both for that short amount of time. I wish you the best, and Jane a fast recovery so you can bring her home.
Good Evening
My, … how much you have been through. But Glory to our God that your Jane is stable. We are so glad for “Pee”. (side note: I remember when my dad was very ill and his organs were shutting down! My brother & I were just waiting for days for the inevitable. The Doctors came in & explained to my brother and I that this is not a good thing at all. Liver, kidneys, etc were not working & there was no expulsion of waste from the body at all – like pee, etc. Then suddenly when a nurse was explaining all of the machines to us, there was a series of beeps that was not normal. The nurse quickly checked a machine, left the room & consulted with others. All the while my brother & I were wondering what was going on? Then with a printer tape with statistics on in her hand, the nurse gave us great news. She said that with reasons they could not figure out, that our fathers organs just started working. The levels were returning to normal and all appeared to be good, and… the nurse said look: Pee in the bag!) So, I understand.
Anyway, I want to encourage you to be diligent, faithful & courageous as you watch your Jane complete each day and begin to start a new one. May Our God give her strength & health. And to you guys the same to endure!
I was reading & want to share with you what popped in front of my eyes:
Daniel 10:10-19
10 Suddenly, a hand touched me, which made me tremble on my knees and on the palms of my hands. 11 And he said to me, “O Daniel, man greatly beloved, understand the words that I speak to you, and stand upright, for I have now been sent to you.” While he was speaking this word to me, I stood trembling.
12 Then he said to me, “Do not fear, Daniel, for from the first day that you set your heart to understand, and to humble yourself before your God, your words were heard; and I have come because of your words. 13 But the prince of the kingdom of Persia withstood me twenty-one days; and behold, Michael, one of the chief princes, came to help me, for I had been left alone there with the kings of Persia. 14 Now I have come to make you understand what will happen to your people in the latter days, for the vision refers to many days yet to come.”
15 When he had spoken such words to me, I turned my face toward the ground and became speechless. 16 And suddenly, one having the likeness of the sons[a] of men touched my lips; then I opened my mouth and spoke, saying to him who stood before me, “My lord, because of the vision my sorrows have overwhelmed me, and I have retained no strength. 17 For how can this servant of my lord talk with you, my lord? As for me, no strength remains in me now, nor is any breath left in me.”
18 Then again, the one having the likeness of a man touched me and strengthened me. 19 And he said, “O man greatly beloved, fear not! Peace be to you; be strong, yes, be strong!”
So when he spoke to me I was strengthened, and said, “Let my lord speak, for you have strengthened me.”
God Bless You.