An update

Today’s meeting with the doctor was tough. We knew it would be going in. As of now, we’re still waiting. I feel like the boy who cried wolf actually. Surgery, no surgery, surgery, nope, not yet.

I won’t sugar coat it, Sam has a lot of issues/complications he’s facing.

Until this weekend, Sam was doing ‘fine.’ Great actually. Doc did point out though how relative his ‘fine’ is: he’s a past term baby, only able to handle less than 3mL/hour of feeds, still needs breathing support, etc. Point taken.

Yesterday we were all ready to go into surgery today, to do exploratory surgery, find out what’s going on in his belly. Scott brought up to the doc a possible heart issue? Was that the cause of him going over the edge this past weekend. She didn’t think it was, but she found the point valid and ordered an echocardiogram. Clinically she didn’t think there would be an issue because he wasn’t showing any signs. The results were bad. Bad. So bad that the cardiologist can’t explain why or how he’s doing as well as he’s doing. He has something called pulmonary vein stenosis. I just looked this up myself:

“Pulmonary vein stenosis is a rare and serious condition in which there is an obstruction (blockage) in the blood vessels that bring oxygen-rich blood from the lungs back to the heart. It can be isolated to a single pulmonary vein, but most often occurs in multiple veins simultaneously.
The stenosis occurs due to an abnormal thickening and, thus, narrowing of the walls of the veins. Pulmonary vein stenosis frequently progresses. As a result, partial loss or even total obstruction of flow to a vessel or vessels may occur.
Surgery to widen the narrowed veins and catheterization to stretch the vessel are usually short-term solutions since the obstruction typically recurs within a month to six weeks.”

What she doesn’t understand is that this situation, along with the pulmonary hypertension, how in the world he’s doing so well, how his oxygen saturation so high, in the 90s. There’s no reason or explanation they can determine. For surgery to even be an option for this, he needs to be much bigger, like 15lbs bigger. And even then it’s risky, may not solve anything.

He’s also dealing with the pulmonary hypertension. Yet they can’t treat it. Typically the treatment is to relax the bloodflow, but they can’t do that for him because it would make his lungs and heart worse because of the obstruction. It’s possible the hypertension is situational, that it’s gotten bad just right now. The obstruction, though, isn’t situational and will require bypass surgery.

Moving on.

Something tipped him over and put him in his current situation. What was it, we don’t know. Is it temporary? Only time will tell.

The doctors still think there’s an obstruction in his belly. At the moment, he’s considered too unstable for surgery. Oddly, his abdominal xray this morning showed gas patterns — he hasn’t had this in a few days. He’s getting another specialized ultrasound/xray done to help them get a clearer picture of his belly since the xrays only show so much. They have no idea what they will find in his belly. What will they have to do? What will his outcome be?

Other current concerns: he experience a lot of bleeding from his last PICC line insertion. Do they need to add proteins to help him better clot. Are his platelets stable enough? He’s also not tolerating being placed on his right side; they’re worried that his swollen liver is now painful.

Speaking of pain: he’s, as I mentioned, past term now, so he’s more aware of pain, feels it much more. So we have to start managing that. We have to start considering his comfort, his quality of life.

Moving forward, no one has an answer. The doctors aren’t comfortable with performing the abdominal surgery on him because they’re not sure he’ll survive it. But he also needs it (he won’t survive without it). Regardless, they won’t do anything until they can completely rule out an infection. He may definitely benefit from releasing the pressure in his belly; but the risks are great.

Statistically his chances aren’t great. But they also never have been. He had 0 chance of making it to birth.

So what do we do? Where do we want to see him in a few weeks. We want him back to his baseline from last week, where in our mind he was doing great. At least then we can grow him, get him bigger and healthier. We also want him to have the surgery. This risks are huge, we know that, he may not survive, odds are against him. But we have to try. Starting at 20w gestation, we were at a crossroad. We decided that it was up to him, that we’d give him a chance. He took it. In the delivery room, we were at a crossroad. We decided that it was up to him, that we’d give him a chance. He took it. Now we’re at another crossroad with another decision to make. We’re giving him a chance. It’s up to him.

Let’s get him stable again and take him into surgery. Let’s fix what’s currently wrong and go from there. Having said all that to the doctors, they’ll support our decision. We don’t need them to tell us the risks, we know them. We’re very aware. But we have to try and give Sam that chance.

Update: Sam’s now on a morphine drip to help with his pain management.

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19 thoughts on “An update

  1. cheryl says:

    I can not imagine what it must be like for you and your husband and your little guy to be up against all these seemingly impossible decisions with all the ups and downs you’ve all experienced, and yet witness all the progress this baby of yours makes beyond all expectations. What an amazing little man he already is. Already shouldering burdens no one should ever have to—either as a tiny baby, or as the parents of two—and doing so with incredible grace. Although I wish I could, I can not offer more than to say that you and your family are in our family’s thoughts and that we are so hoping that little Samuel gets a well deserved break and a better outlook for good health very soon.

  2. Jenny says:

    Oh my dear. That is a lot. I think of you every day, and will be thinking of you especially as you face these challenges. Hugs.

  3. Rebecca from FF says:

    Praying so hard for your little fighter!! You and your family are in our hearts… You both are such amazing parents and advocates for both your boys. (((hugs)))

  4. Yes, I want to echo what Rebecca said–you two have done, and continue to do, such an amazing job as parents and advocates for your boys.

  5. Oh man…I’m so sorry to read this update. I’ll be praying that Sam continues to fight and to beat all odds. Your post shows how much you love that little boy. I’m thinking about you and know you’ll continue to have the strength to be there and advocate for Sam.

  6. Maureen says:

    did he have pulmonary stenosis on previous echos? or is this new? you have always done everything possible for sam, and he’s always surprised us! i hope he can do it again.

    • Evidently the doc went back and reviewed his previous echos b/c she didn’t remember seeing it. It was there before but never commented on, never obvious. I think this time, though, it’s affecting 2 veins.

  7. Imelda says:

    We have a bunch of folks here in texas praying for Sam and your family. God has his hand on Sam and will see him through all this. I am praying that God will sustain you through all this so that you can continue to be strong for Sam.

  8. Caroline says:

    just a lurker and not a twin mom but your blog has touched my heart. I have been praying for Sam and his brother from the beginning and will continue to do so. Stay strong Sam!!!!!

  9. You are great parents faced with incredibly difficult decisions. You will make the right ones. Sam has proven so many times that he is a fighter! Sending prayers and love to you all.

  10. Mom says:

    Our hearts are broken for little Sam being sick. We keep lifting Sam up in our prayers. Keep going to see him so he will want to fight to be healed.

  11. i have been silently following your story from the start, and through my own very difficult time. i am praying for you. you are so right, give him the choice, and the chance. take it from him what you do next, he is such a fighter and so strong.

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