A new direction

It’s been a busy few days.

So the doctor I talked to the other day, the one I asked if there was something we were missing, something we’re not considering….he must have thought about it more. When I left Sam that morning, he was satting in the 90s at anywhere from 50-65% oxygen.

When I came back several hours later, he was satting in the 90s at 25% oxygen. What?! I questioned the nurse, but her explanation didn’t really make sense to me….so we waited till the next morning to speak to the doctor again.

He evidently called the cardiologist on duty (one we’ve never met) and they started talking. Sam’s doctor wondered if since they can’t treat his PVS, should they focus on the pulmonary hypertension instead? He theorized that by keeping his pressure and oxygen high, things were being made worse, that no matter how much pressure they pushed through his obstructed veins, no more blood/oxygen was going to get through. If anything, the increased pressure makes the hypertension worse. The cardiologist agreed.

So now they’re treating Sam in a completely different way, the way they were before the PVS discovery. The hope is to get him back stable enough for belly surgery. And with the lower oxygen/pressure, his lungs should clear up in a couple days and make it easier for him to breathe.

Sam is also LOVING his breastmilk mouthcare. Every nurse always acts shocked that he “tolerates it”, that he “vigorously sucks” — of course he loves it.


Hope is a funny thing

Again, the last few days have been a turbulent volcano of emotions.

After our meeting on Wednesday, Scott and I immediately started doing research into pulmonary vein stenosis. It’s a rare condition, not easily treatable, if at all. We had hope though because one of the studies we found gave a 0% mortality rate for PVS that’s only in 1 or 2 veins; 85% in 3 or 4. We thought we remembered that’s what was said in the meeting. We also started looking at various treatment options, to get a full understanding of what we’re dealing with.

Stints/catheters: these are only temporary fixes. They buy about 4-6 weeks with each procedure. Sam’s not big enough — he’d need to be 20+ pounds.
Lung transplant: a permanent solution, requires lifelong care. Sam’s not big enough.

So what do we do? We want more answers. The next day we talk to the doctor on duty. Our hope is crushed. He tells us that the PVS is in all four veins. We’re devastated. Disbelief. How could we have come so far, overcome so much, than now we have to face this? He said that though some babies will do great for a long time, because of the PVS and pulmonary hypertension, when they go down, they go down fast. How much time do we have?

We do more research. There’s a study happening now that uses chemotherapy drugs to treat PVS. The reason is that PVS, though not a cancer or tumor, acts like a cancerous growth. It’s the reason stents and catheters are only temporary solutions. If you remove the obstruction or widen the path, the growth just returns. So the hope is that the chemo drugs will counteract this. Hope? Is Sam a candidate?

The visit with Sam that evening was tough. I see his doctor at the hospital, the one who said it was in 2 veins. I corner her: What is it? You said 2; the doc yesterday said all 4. She looked startled, said her understanding was that the stenosis was only in the left side. I relax, see a small glimmer of hope.

Yesterday we talked to the other cardiologist on duty. He told us that Sam’s condition is bad, that there’s basically nothing we can do, no options. We argue. There has to be something, even if experimental. You aren’t even going to try?! We’ve lost all faith in the cardiology group. He did promise to contact the other hospital doing the study. We’re going to contact more hospitals ourselves. People are always asking what they can do….well, help us find a solution, find a place that is willing to try.

But we can’t give up hope, we can’t.

I love the doctor who is on duty today. He’s the first doctor who gave Sam a chance with the CPAP; he wanted to see if Sam could do it. Sam could. The doctor said that he’s increasing the calories in his TPN fluids to try to grow Sam, get him bigger. Thank you! We have to get Sam bigger. Thank you. I also asked him if I could start bringing in fresh breastmilk for Sam, not to have as food, but for mouthcare, to soak q-tips in it, place them in his mouth, let him suck and let the milk be absorbed. He thought it an excellent idea, that there’s great benefit to it. Thank you. Why can’t other doctors think this way? I’m going to make sure he writes an order for it, so that all the nurses will do this. I’ll start bringing in an ounce of milk every couple of days for this. He has a ton there, but it’s all frozen in 2oz sizes….so it would go bad before he could use it all.

I restated my goal with the doctor, that we have to give Sam positive experiences (like the open bed, the music box, etc), that we have to keep him happy and with a strong will to keep fighting. He agrees, he seems to want to give him the chance as well. Hope.

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.

Surgery is scheduled again

Sam’s taken a bad turn again. Poor, poor baby. 😦

His belly is still large; his respiratory requirements have exponentially increased. We got called at midnight last night — he was put back on the vent after a particularly bad spell that required chest compressions and bagging. I had just visited with him only a couple hours prior, and he looked so good. There wasn’t a mucus plug to blame this time.

As of this morning, his blood gas numbers are going in the bad direction. They would schedule him today, but they’re determined to make sure he doesn’t have an infection. None of the numbers coming back though point to that. One of the weird things is that every time he’s gotten sick before, there are lots of signs: dropping platelets, rising CRP, etc. This time, everything is normal.

The scary part is that they’re going to open him up and who knows what they’ll find. It’s exploratory surgery. What if it’s not fixable? The docs think there is a blockage of some sort, that the gas patterns stop halfway down his belly when they see them on xrays. We can only hope that it’s an easy fix so we can move on.

We talked to his primary doctor last night; he told us how difficult this type of surgery will be on him: re-intubated (no longer an issue now), that he’s going to gain a lot of weight, get bigger/more swollen.

We know he’ll have the surgery tomorrow; we don’t know what time yet.

Just when we start to relax

We realize we can’t.

Sam’s belly has gotten larger; his oxygen requirements have greatly increased. The docs have increased his CPAP PEEP up to 7 now (from 5). Because it’s so high now, they’ve had to insert a replogle to help vent his abdomen. His feeds are being held.

They don’t think he has an infection though: his CRP, though slightly elevated, is still within his normal range. His platelets are actually up, his crit is good, his bands are good.

His xrays don’t show any changes really so they’re not sure what’s going on.

Thinking he’ll have to have another upper GI soon; may need to start exploring the idea of abdominal surgery again to figure out the feeding issues.