Post Fontan Life

Trent had a pretty tough day on Thursday. Each day he has had some ups and downs, understandable. But Thursday was mostly downs. He had a good bit of pain and laid around just about all day. He continued to have a good deal of drainage. So they kept the tubes in for the day.

Male Bonding Day

Not a whole lot has changed since we last posted. Trent is still doing well and camping out on the 8th floor of Levine.

The Waiting Game Continues...

Trent has done well the last couple of days.

On Sunday afternoon he got his central line removed, which of course he was not happy about. He is going to grow to be terrified of any type of tape. We are excited to be free of IVs!! Dad was able to go home Sunday night and spend some much needed time with Big Brother and get refreshed with a good nights sleep. This also allowed Braxton some time at home so that he could play with his neighborhood friends.

Minus a Chest Tube...One step closer to the door!!!

Trent had a big day yesterday. He was able to get one of his chest drainage tubes out, the dressing removed from his incision, a peripheral IV pulled and is now on room air (with only occasional blow by oxygen) . Yay! He slept a good while after he had all that excitement. And had some pain off and on yesterday afternoon.

CVICU Graduation

Trent wowed the doctors and nurses again today.  He woke up at 7:30 this morning in good spirits.  His nurse for the day came in and said today was the day to get Trent up and moving a little to help clear his lungs of some of the fluid.  There is a fear of pneumonia setting in if the fluid lingers too long.  Trent and I sat in the chair for 4 hours this morning watching Cars and Monster's University.  I think we now know those movies by heart.

Post-op Day 1... Like a Boss!!

Hi all!

Trent is doing well this evening! They have taken him off the sedation and although he is still sleeping a lot, he has been awake. He has been watching movies AND got to FaceTime with his big brother! Braxton and T-man both loved it!  They have also weaned him off all but one of his IV medications and the only one left is for heart function. They are managing his pain with Oxycodone and alternating Tylenol and Motrin. His chest tubes are putting out a good bit which is fantastic and they hope to possibly remove one tomorrow. The catheter was removed early today but it turns out it is no easy task to get a little boy who worked so hard to potty train to use a pull-up again so that may have to go back in. He is still on oxygen with the nasal cannula(which mommy says he isn't fond of) but his levels look great! Since they want him up and moving some now, mommy and daddy have gotten lots of snuggles from their little man! So far, so good! There is even talk that he may get to move from the CVICU to Progressive Care tomorrow!

Mommy and daddy want to say a HUGE THANK YOU for all the prayers for them and their special little man! And for all the calls, texts, visits, ect! The support of Team Trent means more than you know!

One last thing... Once Trent is moved to Progressive Care(hopefully tomorrow!), he will be able to have visitors. Mommy and daddy ask that you please check with them before coming by. Trent is still recovering and there will be times that a lot a visitors may not be good for him. They know everyone is anxious to see him but Trent's health is the top priority right now.

Keep the prayers coming!

Heart Hugs,
Team Trent

Superstar Trent Williams

Trent did great before, during and after his surgery today. We are so thankful for that. He is on strong pain meds and resting well this evening.

We arrived this afternoon and after a little Versed, Trent was taken right back to the OR. A little over an hour later, we got a call from the OR that they had gotten started and things were going well. An hour later they called to say he was on the pump (heart and lung machine). An hour later, they were closing him and finishing up. About a half hour later, Dr. Peeler and Rick Baskin (Trent's perfusionist and our good friend) showed up to the waiting area, where Team Trent was well represented by the way. Dr. Peeler said that there were no surprises and that everything had gone really well. He received units of blood during surgery. Which is normal. They were also able to extubate him in the OR which is great!!

It took them a while to get Trent to his room in the CVICU and get him situated. We came back to see him shortly after 8pm. Although they assure us he is doing very well, it's still very difficult to see our little man look like this again. There are tubes out and lines in all over the place on his little body. He has several machines connected to him. There is a nurse dedicated just to him, who sits in his room all night long. She continually monitors his blood pressures, oxygen levels, chest tube drainage, medications (about seven of them through continuous IV drip) and more that she injects through his IV, breathing, heart rate, urine output and probably some more things that I have forgotten to mention. They will be giving him a little more blood this evening due to some low hemoglobin. He will also get some insulin due to high glucose levels. This is normal and does not mean that he has diabetes. They will also start him on some diuretics in the morning to keep the excess fluid off of
him.

We will know more about the plan for tomorrow after rounds in the morning.

Thank you all so very much for all the texts, calls, fb messages, visits, and most importantly the prayers. This baby has been bathed in prayer and it shows. God definitely has him covered. Although we have a little bit of a road ahead in the coming days and weeks, we know it's much more comforting to have you all lifting Trent and our family up day in and day out. We appreciate it way more than you all know.

Disclaimer: Some may consider the following few pics a little graphic. This is our baby this evening. He really is a tough little guy!!!

Heart hugs,
Wayne, Holly, Braxton and Trent

It's Fontan Time Baby

Tomorrow will be a bittersweet day for Trent and our family. Trent will undergo his third, and final planned open heart surgery. While this will be a huge hurdle and a tough time for our family, we will be glad to have it behind him, and us. Please wear your Team Trent shirts in honor of our little heart hero!!!

Surgery Date & Team Trent Pic Post

We now have a firm date for Trent's Fontan operation. It will be on Tuesday, June 10th. We appreciate your prayers and thoughts up to and through this time.

We apologize for the delay in getting this picture post uploaded...We wanted to show all the supporters of Team Trent. Enjoy!!!

Heart Cath Follow Up

As you all know, Trent went in yesterday for a heart catheterization.

We arrived at Levine at 5:30am...bright eyed and bushy tailed!! That is Trent's normal morning state. He is a morning person, like his daddy. We had several talks with him ahead of time, and he knew....well, as much as a three year old can know, about what was going to happen. And he was okay with it. After the nurses checked us in, we talked to the anesthesiologist and the cath team to go over once more what was going to happen, what they were looking for, and how long we could expect them to keep our little guy. Then, the nurse came in and gave him some medicine that would make him a little out of it so that he wouldn't mind going back with them for the procedure. One of us was able to follow him into the cath lab and stay with him until he was put to sleep. That was comforting to know that he did not go away and cry for us. They told us that he would be in there for two to three hours. Well, after an hour and fifteen minutes, we received a call from Dr. Paolillo that he was done. He did not see any collateral veins and there was no narrowing of the aorta(which are two things that they look for in the cath that can be common and sometimes keep them there longer). So we were relieved that they did not find any surprises and everything looked really good.

Calling All Supporters of Team Trent

Tomorrow is a big day for Trent. He will be having his pre-Fontan heart catheterization. This is a routine, outpatient procedure that takes place shortly before surgery is scheduled. The doctors want to make sure there are no surprises when he goes in for surgery. Therefore, they do this procedure ahead of time to get a good look around at everything that is going on with Trent's heart. Tomorrow we also hope to get a word with the surgeon in order to go ahead and schedule his third (and final planned) surgery!!!

Paving the Road to Round Three

Trent had a lengthy, yet very good visit with his cardiologist on Thursday afternoon. Dr. Herlong looked and listened to Trent for a while. He then told us that Trent's special heart is doing great, and it is time to begin looking at making a plan for surgery this summer. He also had us go on in for an echocardiogram in order to check all the function of his heart to be sure there are no surprises or issues. It just so happened that Dr. Paolillo from the catheterization lab stopped by the office.We were able to go ahead and get his pre-Fontan cath scheduled. He will go in for the cath on May 5th. This is a routine procedure that takes place before each round of surgery. We will then be looking at surgery in early June. As always, we are very grateful for all the prayers, calls, texts, support and kind comments.

Heart hugs,
Wayne, Holly, Braxton and Trent

 

Happy 3rd Birthday Trent

Trent turned 3 years old on Saturday. We cannot believe that three years have passed already since we welcomed him into the world. He is doing really well and has enjoyed getting to play outside the last few days since it's been warm. Trent now goes to a "play school" three days a week where he is learning his letters, colors, shapes and how to share (the big test...haha). He has also been working hard at potty training and we think he finally has it figured out. He enjoys hanging out with his big brother, and close family and friends. And he still loves a truck and a tractor. We have ourselves a little country boy!