Wednesday, October 8, 2008

Not going home tomorrow... :(

Well, the cardiologist came in to talk to us about the echo. It doesn't look normal. Oh, my heart just sank.

There seem to be two areas of concern:
  • There is a small-to-medium leak in his tricuspid valve. This isn't a major deal b/c this valve only sends blood to the lungs (as opposed to the brain and the rest of the body). She said everyone's tricuspid valve leaks a little bit, but his leaks more than normal. This was not the case before surgery. This wasn't a huge concern to her, nor are they planning to correct it. She just wanted to make us aware of it.
  • The left side of his heart isn't clamping like it should. This might be because the surgery was harder on his body than we thought. She said the person who did the echo earlier today didn't do it quite in the way that she normally does, so she is going to return later tonight to do another one. She is starting him on a new medicine today called enalapril. It is a high blood pressure medication, but that is not why he needs it. (His blood pressure is *slightly* higher for his age group but not a cause for worry.) He needs it to relax the arteries so that the heart doesn't have to work as hard. This should help him to recover. He needs more time in the hospital (especially on this new medicine), so along with the echo tonight, they're going to do an echo (which, if you'll remember is just like an ultrasound of the chest) on Friday morning to recheck it. So the earliest we could come home is Friday. (Though I'm doubtful that it will be that early.)

They are also going to check his thyroid to see if it is functioning properly. It was checked at birth (and showed no problems) and we planned to have it checked at his six-month well visit. Babies with Down syndrome commonly have thyroid problems. (Thirty percent of people with DS have thyroid disease at some point in their lives.) An improperly-working thyroid could be causing problems with his heart.

Other areas that are concerning me are:

  • He seems to be taking longer to nurse than before his surgery. Sometimes up to twice as long per side. Maybe he's hungrier. Maybe he is having to work harder to eat b/c he just had surgery. Maybe. Maybe. I just don't know.
  • Before surgery, the cardiologists would always ask if Benjamin panted or sweated when he nursed. My answer was always no. But today, about an hour ago, when I was feeding him, the back of his neck felt kind of warm and moist. Maybe he's just hot. Maybe he just hasn't really had a bath in almost a week. But maybe it's a heart issue. He has smiled a few times today, but has seemed to be in much more pain than yesterday.

Please pray. I'm just tired. And sad. And worried.


datri said...

I'm so sorry you're not going home tomorrow. Praying you guys get to go home soon.

Liz said...

Prayers for all of you. He looks wonderful!

lots_of_love_four_kids said...

Sorry for the news that you got and hope you get some answers soon.
Take care and try to get some rest and give God the worry.

You all are in my thoughts often.
Praying, praying, praying.

Stephanie said...

oh great, I thought I could stop worrying so much about him. Ok, back on prayer patrol.
He makes me so happy.
I am so grateful that you have such knowledgable eyes on him.
I changed my mind- I don't want you to come home quite yet.
I know you are tired. Hang in there. This will all be just pictures on the blog soon and you will be sleeping in your own bed again.
Oh, Angela. I want to rescue all of you. Maybe I can't but I know WHO can.

Beth C said...

Oh Angela, I'm so sorry you can't go home tomorrow and that you are worried and tired. You are doing great, and please know you have so manypeople praying for you and sending positive thoughts for you and for Benjamin.

Shannon said...

angela - you guys and especially Benjamin have been in my constant thoughts and prayers. i have been keeping up with your blog and finally have a moment to leave a comment for you.

i just love all the pics of Benjamin!!! he is such a doll!!! what a little trooper he is to still have a big smile!

i'm glad he got to see his first concert today... that must have been a treat!!

take care and hugs!!!!

~heather~ said...

I'm so sorry for the setbacks. Hopefully he's just not nursing as strongly because of his healing and it's taking longer. I'm sure tomorrow will be a better day~!

Katie said...

I am so sorry you're not going home tomorrow. Benjamin will get there! I know that you are exhausted (physically, mentally and emotionally) but please know that we are praying hard for Benjamin, you and Matthew.
2 steps forward....1 step back. Stay postive tomorrow will be a much better day!

Erica said...

I am so sorry that he can't go home tomorrow. A few things I can think of with nursing. One your supply may not be there like it was. Pumping is different then baby.Also his pain and he is weak he did just have open heart surgery. So he may not be sucking as hard. Youc ould try pumping abit get it flowing then out him on. Then there is comfort nursing like MJ said which I would bet it is.

I know its hard your not going home but its better that everything be taking care of now so you don't have to return. I think that would be worst.Sending lots of prayer and hugs.

Susan Massoud Farley said...

I am so sorry you are disappointed and worried and have been so positive throughout all of this, it breaks my heart to hear your discouragement. I know you want to be home (living in a hospital cannot be fun). I am thankful that the doctors are being cautious; you want him where he can be taken care of and get better.
As always, prayers and love coming your way...
- Suse

Anonymous said...

I am so thrilled to see Benjamin's beautiful smile again! Please know that you have been and will continue to be in my prayers. I know the "not knowing" and the wondering can drive you crazy at times, but you are truly doing an incredible job. God knew exactly what He was doing when He entrusted your special little guy to you! It's not even close to being "fun" sometimes, but don't you feel incredibly blessed and humbled to take care of him? Keep up the good work, and I can't wait to see you in Bible Study soon! I promise to keep praying, lady!

Love, Karla