The Vent is out!

This morning we came in to Tyler with the vent taken out and only on a liter of oxygen. Things appear to be progressing! The fluid that is draining has now reached 200ml(cc) which is a lot in 24hrs almost the same as the first tube's drainage.  The difference today is that the fluid is now a clearish pink fluid. This is good as that means that the Thoracic duct is theoretically able to go into a healing mode. The only way that we got to this point is because they put a Central line in and are able to be more aggressive with giving him nutrients through his IV rather than through his digestive track. We are eliminating the need for his body to use that system so it will heal. Here is a picture of the Thoracic duct and Lymph system. In real life, this is not visible which is why we cannot find where the leak is and it cannot be repaired. At some point during the surgery, this was damaged. It happens roughly 4% of the time during an open heart surgery. Right now, we need prayer that Tyler will heal quickly.

This afternoon Tyler has not been able to sleep much and is acting very hungry (obviously). We pray that he will get some sleep tonight.

Here is a video of Tyler earlier this month. Holdin' his head up like a big boy!

Oh the PICU

After our eventful evening last night, Tyler wasn't satisfied and gave us an encore this morning. He quickly worsened over a matter of minutes again and his heart rate soared from 140 to over 200! He became modeled and cold with no pulses in his feet. Talk about a morning wake up call! He likes to pull these stunts right at the shift change too. We had several people working quickly to try to get blood drawn and stabilize his heart rate. Our favorite cardiac intensivist, Dr. Rotta, was on this morning and he went right to work when he saw Tyler's distress.

Again, we were quickly ushered out into a private waiting room. While we were in there, we knew he was in good hands, but it was extremely hard to leave him in the distressed state. He still only had a small peripheral IV since he is such a hard stick, but he needed a central line for the right medications to go through to help him. Last night, the best they could do was a peripheral and they were waiting until today to get a central since the IR team would be in. Tyler was not stable enough to leave his room to go down to the IR lab to have a central line placed,  so Dr. Rotta sprung into action right there. He decided to place the line himself and not wait for anyone else to get there. The team brought in all the supplies and he got to work. A little bit later our nurse came in to update us that Dr. Rotta got the line in and was going to be doing a chest tube since he was already prepped and Tyler was in clear distress from all the fluid around his lungs. The chest tube that Tyler got last week was done in the OR with a surgeon, but since this was an emergency, Dr. Rotta just did it right there in his room. He got 20cc's out right away and sent it to the lab for testing.

After all this, Dr. Rotta came to the waiting room to update us. He told us that he "went old school" on Tyler to get the line in and just went for it without the ultrasound machine becasue he could not feel a good line with the machine. He got it on the first try; impressive. I am so glad he was here to do that because Tyler desperately needed those meds that could only go through that line. He told us he went ahead and put in a chest tube since it was an emergent situation even though he had not gotten a formal consent, he knew that I had said to do what he needed to do. He thought Tyler was starting to look better all ready.

We went in to see him and he was looking much better, but his feet were very cold and he was running a fever. They were pulling labs to find out if he has an infection. We won't know the results for another day or two. Slowly, as the medicines kicked in, Tyler was warming up and getting some color back. We had to give him a blood transfusion also, but by the afternoon he was looking much much better.

Both sets of grandparents came to see him today and Connor did great at Anne and Keith's last night and today. We are glad that Tyler is resting comfortably now and we are slowly weaning the ventilator down in hopes that he can be off of it soon.

We made it through two very scary situations and Tyler is currently stable, but we definitely have a ways to go before he is well. He is battling the chylous pleural effusion still and that needs healing. He also has the SVC clot. Continue to pray for him to get stronger and for the thoracic duct to heal so that he can stop having the chylous pleural effusions.

We have been so grateful for the many prayers and encouraging messages from so many people! Thank you. It really means a lot during all of this. We are glad to have so much support. Keep those prayers coming.

"For I know the plans that I have for you,' declares the LORD, 'plans for welfare and not for calamity to give you a future and a hope. (Jeremiah 29:11 NASB)"

I just experienced the worst 30 minutes of my life. We returned from dinner to find three nurses in Tyler's room checking him over. He was screaming and a blueish color. After a few minutes of not great numbers on the monitors a cart team from the ICU was called. All of the people in the lounge across the hall were asked to leave and a team of many doctors and nurses were in Tyler's room within minutes. They were trying to get IV access and blood was everywhere since he is a terrible stick and they were just blowing out veins. The ICU intensivest decided that Tyler was in distress and he needed to be moved to the ICU.

Upon arrival to the ICU things got crazy and Tyler was not doing well. The hardest thing ever was handing him over to them and placing him on the bed. They decided to intubate him and get him sedated since his heart rate was extremely high and he was purple. The doctor pulled me out of the room as the team worked quickly to try to get him stabilized. He told me that Tyler is very sick and they needed me in the other room while they worked. The chaplain came in and I was waiting for John to get there. The code cart was also called to his room at this point. I could hear him screaming and about 20 people were coming and going(running) down the hall trying to get him stabilized and on the ventilator. All the while they are still trying to get an IV in him somewhere.

The doctor came again and told me that they will need to place another central line tomorrow in order to give him some more medicines. I am very afraid of these because this is what caused Tyler's blood clot in the SVC that we are currently dealing with. We really don't have a choice in the matter at this point. Tyler has Pulmonary Edema, fluid in the lungs. He also has some chylous fluid around his lungs still. He is really struggling.

Now that he is resting under sedation and on the ventilator, we hope to run some more tests in the morning and get the central line placed. The doctors will decide a plan then. Right now the plan is to get through the night without anymore crazy episodes. This one came out of nowhere. We were on the books to go home tomorrow and Tyler had been looking good. Things can change in an instant. Please pray for him tonight. He is fighting really hard.

Hmmmmmmmm....

Day after the failed Heart Cath...

How do I put this. Julie and I are discouraged, frustrated, tired, weary, faint of heart.

"Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings. (Psalm 61:1-4)"

They will be sending us home Monday in his current condition with the risks outweighing the next steps of surgery at this time. His feedings are not quite under control and we feel that we are in a worse position to return home than we were at the last discharge. His feedings are not straight breast milk and we are having to give it to him over a pump over an hour rather than some by mouth and the balance gravity fed in 20 min. Tyler at least is not puking or struggling to breath due to the fluid around his lungs. We just hope that the fluid does not come back. Time will tell.

Tyler had his drain tube removed today and he already seems to be feeling more comfortable. He is able to take a nap and not yell for some one to hold him constantly. (Could be the morphine and Tylenol T3) We look forward to returning home but still scared to have to return to Riley a possible third time.

Heart Cath Friday?

At 6pm on Thursday night the doctor came in to Tyler's room to tell me that he wanted to do the heart cath on Friday morning! What? We hadn't even decided what to do yet. John wasn't going to be here until Friday afternoon and we were waiting to decide until after we sat down with the doctor. He told me that there was not an opening next week and that if we were going to do it we need to do it Friday morning. He gave me his cell phone number so we could call him when John got into town and ask any questions we came up with.

I got ahold of John after this and he still had to pack everything up and drive all the way down here. He and Connor arrived close to midnight. Two year olds don't do well at midnight. We had a nice screaming fit but he finally fell asleep.

We got over to the hospital at 8am this morning to talk to the doctor about the two options. We decided that the stint is the best option for Tyler and gives us the best chance that it will stay open.  Tyler went back for his procedure at 11am. This one should only last about an hour.

At 1:30pm the nurse called me to tell me that the echo was wrong again and he the clot was fully blocking the SVC. The doctor had called two other doctors to the cath lab with him to try to figure out what to do since nothing was working. At 2:30 the nurse called again to tell me that they were done and were taking Tyler to recovery. The attempts have failed and there is nothing they can do. The doctor would be up to speak with us shortly.

"We failed." Two words you never want to hear a doctor say. He apologized to us that they had not stinted a month ago when he got it open while using the PICC line. Now the blockage is 2 centimeters long and there is no way to get through with a heart cath. The echos that showed "flow" before we went home lied. They were seeing another vein and not the SVC. This will not clear on its own. It is far too big. We are lucky that right now his other vein is carrying the blood. The question remains as to how long this will be able to handle the load as Tyler grows. Also, Tyler still has been having problems eating and with Pleural Effusions which can be made worse by this clot. Right now it appears there is nothing more to do. There could be a potential surgical option, but right now the risk outweighs the benefit for Tyler. We will just have to wait and see.

SVC Intervention

The attending doctor this week is the doctor who preformed Tyler's first heart cath balloon procedure on the SVC. This procedure was particularly stressful and we were very relieved when it was over. Facing a second heart cath is not where we want to be right now at all. He is talking about either doing another balloon or inserting a stint. He admits that he is an interventionist so we have asked for some other opinions on what to do with Tyler.

Two of the other cardiologists here agree that something should be done right now but they are leaning more toward avoiding the stint. We sent Tyler's echos and info to cardiac cath doctors in Texas and Toronto who deal with this in infants more frequently. Both say that without a doubt, we need to stint Tyler. Here they do not stint babies very often, maybe one or two in a whole year. That is how rare this is. If we do the stint we are committing Tyler to having a metal stint in his body forever at 2 months old. He will also have to have the stint expanded at least one more time in his life as he grows. If we do the balloon, like last time, it is much more likely that it will close back up again now and we are back where we started again.

The doctor said that looking at the schedule he could probably work Tyler in on Monday. Next week's schedule is crazy and they think there is a case that will cancel on Monday. The sooner we do this this better because it will only get worse the longer we wait.

Flashback!

On Monday Tyler had an echo cardiogram to check to make sure things were still looking good now that the chest tube has been draining for a week. Everything looked good. I always ask the doctor to show me the svc flow and there was some flow still. He said not a lot, but some. I thought this was good and that there must not have been much of a change since the last time.

Imagine my surprise when Tuesday morning during rounds the attending doctor tells me that his SVC is blocking back up! What? I was there for the echo yesterday and that doctor said there was flow! Blindsided by this new information I am in shock. He said he compared the echo from July 2 to Monday and it was significantly less flow. The clot is closing back up and he strongly recommends that we intervene. I was too in shock to think about it right then. We would talk later.

All the while Tyler's tube drainage has significantly slowed. He only had 6 mls out in 24 hours! Great news. We had an xray just to make sure that the tube wasn't blocked since the tube stopped draining so quickly. The tube is fine and the drainage is slowing! Great news.

Later in the day Tyler threw up some more lactobezoars. Not cool. He is back on the enfaport formula that makes him do this. The formula is helping the pleural effusion but it is hurting his stomach.

I really feel like I relived a day 5 weeks ago because of the svc obstruction and the lactobezoars again! I am still in shock of these huge steps back in his recovery but I am happy about the slower drainage.