Our son, Rowan, was born with Congenital Heart Disease and later diagnosed with Cystic Fibrosis. He had 2 open heart surgeries, 5 heart caths, and 2 additional surgeries. Realizing that despite fighting for him, Rowan was never going to get better and that he was hurting, we made the decision to change our fight from a long life, to a beautiful end to it. Hospice was a true gift and a beautiful time for our family. We said goodbye to our son when he was 7 months old.
I don’t have pictures from each day, but I have a few to give you an idea of how Rowan’s week went.
Saturday
Sunday
Monday
Tuesday
Wednesday
Rowan is still pretty sedated, but you can see that he has de-puffed and returned to a humanish color! He still has a little de-puffing to go, but he is initiating all of his breaths with less and less vent support.
He smiles a lot not. They are of course SUPER sleepy smiles…but still smiles!
We are seeing some really good baby steps in the right direction.
CVP (we want it between 15 and 20) has been moving down and was 17 last time it was checked!
Rowan is getting fed a whole whopping ounce of formula every three hours (with plans to increase)
Rowan’s “stop looking like a microwaved marshmellow version of yourself” medicines are working well now
Chest tube out!
Foley catheter out!
Broken Leg IV out…new one in
However we are still have trouble with the ventilator. Rowan’s CO2 continues to drift upward…so they have had to go back up to 25 on his respiratory rate (how many breaths it gives him a minute) from a previous rate of 20. I would really like to not end up spending two months trying to get him to breath on his own again this round…
They are keeping him pretty sleepy and sedated so we have been spending very little time at the hospital. We call up frequently and both stop by to visit, but our daughter has really bad allergies so she can’t go up. We have been taking our daughter to have some Evelyn and Parents time since she has been so good and had to endure a lot.
Rowan gets all the attention and care he needs, and she is the one who gets pushed aside when things are tough. It’s nice to get to spoil her and show her how much we love and enjoy her for a while.
So Rowan has a tendency to come out of procedure and look absolutely fantastic for the first day or two. Everyone gets excited and pushes him forward in recovery…and then Rowan needs to take a step back because we rushed him.
That’s what happened yesterday.
To be honest, I was a bit distraught yesterday. I felt really withdrawn and unsettled and anxious after they extubated him. I had to leave the hospital for a medical procedure and when I made it back, they had already pulled his breathing tube and he looked horrible. I was nervous that extubating yesterday was too soon and would have asked that they give him a little longer, had I been there. I felt guilty for leaving instead of rescheduling my appointment. His blood gases started to look bad (CO2 in the 60s) despite having PO2s in the 50s. He looked like he was breathing harder and he wasn’t very active or awake.
He also started to get really puffy.
We had some family visit him and they remarked on how good he looked a lot but all I could think was that he wasn’t ok. He may look good but I didn’t think he was ok. I didn’t feel happy and excited that his tube was gone. I was just sick with worry, despite the fact that the doctor taking care of him said everything else looked really good and that we were just going to see if he could ride out the imbalanced blood gases. No one else was worried. They were just watching him.
Overnight, his blood gases continued to get worse.
This morning, they decided to reintubate him and we were both somewhat relieved. It stinks to see progress reversed, but Rowan can’t be trusted to get that well that fast.
He is now showing signs of struggling to adjust to his new blood flow. This is pretty normal and most kids level out after a few days. We are hoping that’s the case.
In the meantime, he’s paralyzed and they aren’t making any real changes so we tried to stay away from the hospital this afternoon. It’s hard to see your kid paralyzed because they always look like crap. Tomorrow we’re hoping his levels look fantastic and we can start progressing again….slowly.
Ok ladies and gentlemen. This will be a long one. With things that make you think and use your brain. Bare with us.
This morning when we packed Rowan up, Doc and I were both pretty down. We believed, based on the surgeon’s evaluation, that this could likely be the last time we had Rowan in our home.
When we arrived, we waited for Rowan to go back…and then we sat in the waiting room.
I received a text from one of my amazing heart mom friends. She told us the mightiest angel would be pulling for Rowan…her son, Oakes, passed away last night. Devastated is not a strong enough word for how I felt for this family. He died in her arms, with his loving father beside him, and the CICU staff, who were family for him, standing vigil.
Rowan has some of the clothing Oakes’ outgrew. I put him in one of Oakes’ outfits today on purpose before we left, hoping a little bit of that mighty magic would rub off on him.
My Aunt Kathy and Uncle Gary came to wait with us. Gary is a chatterbox and incidentally perfect company during a long wait. Having my aunt there too made it even better. She is so compassionate. We sat there and talked. And waited.
Phone call: We started
Phone call: He’s on the heart/lung machine
Cardiologist comes out to talk to other families: Goes over results with a different family of a cath, tells another family they are almost ready for theirs, turns to us. “He’s looking good. I stepped in. His ASD looked a little blocked on his TEE (fancy heart echo done in the esophagus) so they’re going to open it up a bit.
Phone call: His ASD was closing so they opened it up. Surprise fix, not part of the plan. Starting the Glenn. Next phone call when he is off the heart/lung machine.
This was the scary part. I kept waiting to see a doctor coming down the hall to ask us to step into a different room. I kept expecting to hear bad news now. I was dreading every open door.
Phone rings.
Doc answers.
Rowan is off the heart/lung machine. No problems. He did great. They are closing him up.
A little bit later we stepped into the hall and watched them wheel our pleasantly PINK little man into the ICU. He looks perfect…just drugged and intubated.
Then the surgeons came to talk to us.
(Here is a picture of Rowan’s heart for those who would like the reference)
Ignore the numbers. The blue lines show where unoxygenated blood returns to the heart from the body. Notice it all flows towards that little hole. That little hole got SUPER tiny. ALL of Rowan’s blood has to pass through that tiny tiny super duper itty bitty hole. With that hole being so small, all of the problems (needing oxygen, being super unstable, respiratory distress, SATing all over the place) can be explained. They widened it. Permanently. They think the hole tried to close up, which is unusual in heart kids like Rowan. But it’s fixed now.
We were desperate for Rowan to have a problem that was fixable. For an explanation for why he needed the oxygen and started having trouble. This could very well have been just that.
Then they did the Glenn and Rowan looks great! He’s totally given every doubter the finger surprised everyone! He is in the PICU at St. Francis now. We’ll keep him comfy and start to try to get him off the ventilator and off post-op meds.
No more shots at home now. Maybe just aspirin.
Probably won’t need the IV.
Hopefully won’t need the oxygen.
Nothing short of incredible. Maybe some “mighty” rubbed off on Rowan after all.
When I said goodbye to Rowan before surgery, I simply whispered “not today” in his ear. Not today. Not today.
Definitely not today.
Our meeting with the surgeons was today. In Tulsa, there are two surgeons who do the CT cases together. We were hoping for a wonderful “we feel confident that he will do well” because that’s what any parent would want.
Instead, we got what is far more realistic…and far more appropriate for Rowan.
Cystic Fibrosis sucks. With a normal hypoplastic heart repair, this surgery is pretty straight forward. But they want the kiddos to have perfect lungs. CF kids don’t have that.
The major risk and problem with the Glenn procedure is building fluid in the chest. Those of you who have been following our story know that we have been there, done that, and it was a major complication from his first surgery. That CANNOT happen this time, because if it does, there is no way for him to get fixed…because he’s already had that surgery…and you can’t do it again.
So #1 – less than perfect lungs
#2 – history of trouble with fluid…
= not a lot of hopeful and inspiring insight from the surgeons.
The good news is that we should know pretty quickly if his body tolerated the Glenn…like…during the operation they will find out. He will go on the heart/lung machine during the surgery. If he can’t get off that…we’re in trouble.
If during the surgery his Glenn fails…we’re in trouble.
If Rowan’s body doesn’t drain fluid from his head well enough as a result of this procedure, he is at high risk for stroke and brain damage…and we’re in trouble.
So where are we?
Rowan will die, and soon, without this surgery.
With this surgery, Rowan may die…but it’s his only hope. So the surgeons are willing to try.
Sound familiar?
Pretty sure we had the same thing going on about 5 months ago.
Being a parent with a sick child is hard. Being a parent with a sick child who continually shows signs of worsening struggle is gut-wrenching. Being a parent watching the slow deterioration of their child and not yelling at someone out of shear fear and panic – super hard.
We are very happy to report that Rowan’s surgery was moved up to June 7th. That is 5 days sooner!
I have never been a yeller. I have, however, always been good at talking. So that’s what I did. No one likes to be yelled at, but honesty can go a long way.
When I took Rowan to the Pulmonologist on Monday, I expressed how concerned I was to him about Rowan. We discussed the fact that Rowan occasionally drops into the 50s (which he was doing during the office visit) and how Rowan is struggling a little more each day. The Pulmonologist shared my concern that Rowan needed his surgery sooner than it was currently planned. I told him I had expressed my concern, but the surgeons wanted him to have a month of space from his last acute incident. The Pulmonologist not only listened sympathetically, but offered to call the surgical team and tell them that he did not believe that Rowan truly had an acute incident and that he believes Rowan needs his surgery sooner. – So I lobbied for my son by communicating with Rowan’s health care team and asking them to share their opinions. The pulmonologist had been seeing Rowan when he had this suspected acute incident in the hospital, so he would be the expert on that incident. I believe the surgeons know what they are doing – but they also haven’t been able to see Rowan lately and I want them to have all the information I can provide them with.
Also, I called our cardiologist’s nurse repeatedly last week. As Rowan continued to decline, I wanted to make sure that it was being documented – and I wanted to make sure I didn’t let him hit a breaking point without managing it appropriately. One of the reasons I wanted to make sure that his decline was being documented is to protect him from assumptions. If there is documentation that he is declining steadily and I take him to the hospital, then I have proof that this wasn’t a sudden occurrence caused by a virus or infection that would delay his surgery.
I was also extremely honest with the nurse. I told her that I was really concerned. I used the term “freaking out” a few times. I told her that he seems to be a little worse each day and that I was really scared that he was going to crash before surgery and go into an open-heart surgery weaker than he needed to. We were set up with a cardiology appointment to check on him last Friday and the cardiologist said he would bring Rowan up at the cardiology meeting later that day to see if the surgeons would consider moving it up.
So with a call from the pulmonologist and the input of our cardiologist, and a lucky opening in the schedule, Rowan is getting moved up. I really feel like this is the best thing for him and I am extremely hopeful that we can make it 5 more days.
As a parent, I’ve tried to keep “my way” and “what is best for Rowan” separate. I did not get “my way” with this. It certainly was what I thought was best, but I trust and rely on my son’s team. I wanted “what is best for Rowan” and to get that, made sure that everyone was understanding his current situation so that they could make the decision with all the information I could provide them. If they had said “we still feel it is best that we wait to do his surgery” I would have gone with it! …I may have gone with it with Rowan in the hospital so he can be monitored.
Truth is powerful. Knowledge is powerful. I really think that the way I treated this situation shows how much I have really come into my own as a heart mom. I feel a part of the team completely now. It’s a good place to be heading into a major operation.
