A Lil' Boy's Journey to Live….

Archive for the ‘CHOP’ Category

Watch Riley Throws His Trach in the Trash .. Yay! ♥ on YouTube

https://www.youtube.com/watch?v=Vdr14BipbMQ&feature=youtube_gdata_player ♡♥

Updates from Riley’s Procedures .. ♡

Riley’s updates from Bronch/Cath/ENT ..

Just spoke to Dr Javia. He is thrilled with how Great Riley’s airway looks! He is going to downsize his trach and cap it. This is obviously Wonderful news however he won’t be Decannulated right now. Dr Javia wants to see Riley in his Airway clinic October 14th. He expects that things will look just as great in a month. At that time he will schedule him to come back and stay in the PICU for Decannulation. So even though we can’t Decannulate today .. We should able to Decannulate in October. Now Pulmonary is with him and when their done Cardiology will go in .. ♡♥


Spoke to Dr Kreindler. He says Riley’s lungs look good. He was able to get good biopsies which will take a few days for results. His lower lobes are clearer then previous bronches. He is pleased with how Riley is doing. He says he is continuing to Beat the Odds! Dr Dori is with Riley now doing the cath.Still waiting to see if we will be able to go home today. ♡♥


Riley is back in the CPRU. Since they went through the neck its a two hour flat time. His trach will be downsized and capped and we will be going Home! ♡♥

Working Towards Going Home .. ♡

Dr. Kreindler said that Riley’s lungs looked good. We will have adenovirus results tonight or tomorrow and biopsy in a few days. Also there were Minimal secretions. 
Dr. Javia said Riley’s airway has improved greatly but would like to wait till after labor day to check again before possible Decannulation. .. ♡♥

In Attempt to Treat Riley’s Adenovirus .. ♥

After speaking with Dr Goldfarb and the team we have decided to start Riley on Cidofovir to try and treat Adenovirus. I have already read some controversy in regards to giving this medicine especially when it comes to its possible affects on the kidneys.(Please do not voice your opinions on this med here at this time). Understand that we are aware of the possible side effects but are making the best .. proactive .. decision we can at this time. We will pretreat to try and protect the kidneys and monitor everything closely. Cidofovir will be given once a week through IV. First treatment was given this evening.
We have no idea what tomorrow holds but this is the plan for today .. ♥


Riley Had His Cath/Bronch on Monday 6/10 .. ♡

On Monday morning June 10th Riley went in for his Cath/Bronch. The consensus seemed to be that Riley is doing great and these are routine biopsies to be done at 3 months post transplant. Since Riley is doing so great ENT was included in the procedures to check the airway for Decannulation.
About a hour after escorting Riley to the cath lab we received our first update from Dr Javia (ENT). He told us that the anastomosis (connection site from transplant) was healing nicely. Then he said that Riley had a good amount of secretions below the site going into the lungs. Cause of the secretions being unknown at the time but the upper airway was also narrowed. 50% occluded. This also having a currently unknown cause. It could be inflamed because of the secretions below or it could be Subglottic Stenosis (narrowing of the airway most likely caused by tissue). Either cause takes away the ability to Decannulate any time soon. In another month or so Dr Javia will take another look. If it’s inflammation it should get better after starting an anti-inflammatory/antibiotic. If it’s stenosis it won’t improve. It could actually get worse. If the narrowing is still there next time we will discuss cutting balloons or possible reconstructive surgery of Riley’s airway. As one could imagine this was hard news to take. Riley has been able to support himself off the vent/CPap with no problems around the clock making the news almost shocking.
After ENT was finished Dr Goldfarb did the Bronchoscopy. He didn’t want to irritate Riley’s already narrowed airway so he did the bronch through the tracheostomy. He took pieces for biopsy and also collected secretions for testing. He believed that Riley’s lungs looked good and the secretions could possibly be caused by Riley just not being able to cough them up all the way and they hang out right below the trach. This is a little puzzling because Riley has needed less suction yet here sit these secretions. 
Finally Dr Rome did the Cardiac Cath. He also took pieces for biopsy and checked Riley’s filling pressures. The pressures have improved since the last Cath in April.
So now we wait for results which should take a few days. We have received one test result late Monday night though. Riley tested positive for Adenovirus. He had this as a baby and ended up in CHOP for 10 days however we know Riley having Adenovirus post Heart/Lung Transplant could be even more serious. A little boy who had a Heart/Lung Transplant several years ago at CHOP also got Adenovirus soon after Transplant. The virus literally shredded his donor lungs requiring him to have a second Lung Transplant just shortly after having his Heart/Lung Transplant. He did survive the second Transplant but sadly passed away after a year due to rejection.
The Adenovirus is something we just learned about at 11:30 at night. Before the Transplant team is even aware. We actually knew first because the contact restrictions needed to be changed on Riley’s door. Tuesday I’m expecting a plan of care. I made sure that the Transplant teams were made aware on Monday night because I want a plan on Tuesday. The PCU NP was saying how Adenovirus isn’t something they can really treat but rather watch. Sooo that plan will change! I have read of medications being used for Adenovirus post Lung Transplant. Seriously the paraflu wasn’t something they believed they could treat yet they did.
Please continue to keep Riley in your thoughts and prayers. I can’t imagine going backwards now after coming so far .. ♥

♡ Riley is Making Great Progress ♡

Update …  Riley has been making Great progress on the Trilogy Ventilator. On Monday May 20th his daytime settings were reduced to just CPAP. We have been able to leave the cuff down on the trach 24/7 for about the last week and a half but Now there is No PEEP ..  No Rate .. No Pressure Support .. Nothing but CPAP. He still has some support overnight with the vent but this is All Wonderful progress!
On Thursday May 16th Riley’s trach was able to be downsized. Prior to the downsizing there were many attempts to use a Passy-Muir Valve. This one-way valve attaches to the outside opening of the tracheostomy tube and allows air to pass into the trach, but not out through it. The valve opens when a person breathes in. When the person breathes out, the valve closes and air flows around the trach tube, up through the vocal cords allowing sounds to be made. Since Riley’s trach was larger every attempt with the Passy put him into major distress, but after downsizing … Riley has found his Voice! He is a Chatter Box .. seemingly making up for all the time he was silenced!
Assuming Riley continues to progress the way he has over the last few weeks the Hope is to Decannulate before discharge! Decannulation would be removing the trach! Huge!
Please continue to pray that things keep moving the same way! Riley had a really rough landing as Dr Kreindler says. It took him many weeks before he had all of his wheels on the ground. He is still dealing with some GI issues but the Dark time has passed! The thought of ever returning to such a place is terrifying!
Thank you to Everyone for being a part of our Warrior’s Journey! Everyday Riley is Beating the Odds .. ♥


~ Riley 71 Days Post Heart/Lung Transplant ~


☆ Movin’ On Up ☆

We had our family meeting with the team on Monday. Riley will be transferred to the 7th floor .. Progressive Care Unit (PCU) .. When a bed opens. There are only two private rooms in the PCU so it will most likely take a few days. There Riley will continue therapies and trach care. The PCU is a Whole different world then our Home on the 6th floor but it’s a move we have to make. At least if there are any set backs the CICU is only one floor below. Moving to the PCU is a Big step in the right direction. There were Weeks that we were Praying for Riley to be able to take just even a step forward!
If Riley Continues to progress the way he has over the last three weeks there is talk of him possibly not needing the trach when he finally goes Home. That being said .. Going Home is not planned for anytime in the near future. Again though if Riley continues on the way he has been he Could be ‘Home’ by July 4th!
Thank you All for being on this Journey with Riley and Our Family! We can Honestly feel all of your Love .. Support and Prayers ♥


♥ First Day After Trach Change ♥




♡ Tracheostomy and Nissen Fundoplication ♡

On Thursday April 18th at 7:45am Riley went to the OR for his scheduled Tracheostomy and Nissen Fundoplication.
The tracheostomy was performed first by Dr. Javier (Dr Luv) . After about 45 minutes we spoke to Dr Javier who said the Tracheostomy went beautifully with alot less blood loss then he expected with Riley being on Heparin.
Dr Nance’s team followed ENT to do the Nissen. Approximately a hour and a half from talking to Dr Javier the phone rings and it’s Dr Nance calling from the OR. In the moment my heart sank that the surgeon was calling! He said that he wasn’t going to be able to do the Nissen. The problem being Riley having Heterotaxy. Riley’s liver is midline and his stomach is on the right making it impossible to see the area where the stomach needs to be wrapped around the esophagus. The Nissen was one thing that we knew Riley would need after Transplant so hearing the surgeon say he couldn’t do it was certainly not something I expected to hear. That being said it made complete sense that there would be an issue gaining access because of the Heterotaxy. Dr Nance said he was going to place a Jtube to bypass the stomach with the hope that this would help prevent Riley from aspirating. Riley has had a Gtube since he was 9 months old. After Transplant he had a GJ tube in IR. Placing the tubes separately would allow for the gtube to vent while he is feeding through the jtube. Shortly after talking to Dr Nance the nurse came out with an update. She said the Dr Nance had something else he wanted to try before giving up on the Nissen. This was a Lil surprising considering I just spoke to him and we had a pretty lengthy conversation about not being able to do the Nissen. We felt confident, though, that Dr Nance wouldn’t do anything he didn’t feel completely comfortable doing.
Just before noon Dr Nance came to talk with us as Riley was finishing up in the OR. He explained that instead of doing the Nissen Fundoplication he was able to do a Thal Fundoplication. The result is the same but the stomach is wrapped differently. Once Dr Nance removed Riley’s original gtube he was able to gain access that would allow him to perform the Thal. He then placed a new gtube and also placed the separate jtube. The hope being that Riley will eventually be able to get rid of the jtube but for now it is beneficial in providing nutrition.
Most children are paralyzed for the first week after a Tracheostomy but because Riley is relatively calm. He has been able to get by with anxiety and sedative type medications verses being paralyzed.
By no means is Riley Happy but we expected the first week not to be easy. Thursday is his first trach change. I just pray that after that Riley can start a much deserved smoother recovery process ♥


Tag Cloud