Plastic Bronchitis, going to CHOP

Caelen and I are sitting in our local ER right now waiting on a transport to CHOP. He has a cast stuck in his lungs since Monday and I can't get it out with all of the breathing treatments and the vest chest PT.

So we've been in contact with CHOP and it was decided that we need to come in now. I don't feel comfortable driving Caelen on my own when he is breathing rapidly and likes to take off his oxygen, so that's why we are going to be transported.

I'm hoping he can clear this on his own without having to intervene, but if not, then a bronchoscopy could be an option.

Aside from all of this crap in his lungs, Caelen is acting normal and flirting with the nurses. So thank Heaven for small miracles. And we still have friends up at CHOP, so we'll be in good company.

Just got the word that CHOP is sending the helicopter, woo hoo, Caelen's first helicopter ride. Not sure when it is coming, but Caelen is hanging out playing with his iPad and blowing bubbles.

So until tomorrow, pleas keep Caelen in your payers that he can cough this cast up and start breathing easier again.

Thank you,
Katye

Weston update

Here's the most recent update from Weston's mom:

https://www.facebook.com/#!/groups/298956884357/

Just a quick update-Weston's g-tube, cath, and nose cauterization went well. They were able to extubate after cath and the doctor let us peek at Weston while he was being wheeled into his room. We have been getting him settled. He is in quite a bit of pain so they are working on managing it and keeping him quiet for the rest of the day. He is very angry that he can't eat or drink until tomorrow so we will see how this goes. We heard some numbers but we are waiting to see Dr. Hanna for the final report. Thank you all for praying for him this morning. Adam Keeton and I were so uplifted seeing all of the folks sharing about Weston. We love you all!

Thanks to all for praying for our heart friend.  Please continue to keep Weston and his family in your prayers.

Love, Katye

Please Pray for Weston

Here is the FB page of our one of our very close heart friends, Weston.  He is waiting on a double lung and heart transplant.  First thing tomorrow morning he is going in for a cardiac cath, g-tube placement, and nose cauterization.  I ask as many of you as possible to please, please pray for Weston that everything goes smoothly tomorrow and without complication.  Weston is the King of the cardiac floor having been there 17 straight months, and is now awaiting his transplant outside of the hospital with the miracle of a million dollar machine, and more meds than Caelen, but still only blocks from the hospital.  By the way, his family is split in 2.  They are from TN, and Dad and 4 of the kids live with him, Mom and 3, including Westin live in Philly.  The TN part travel frequently to Philly to visit. 

https://www.facebook.com/#!/groups/298956884357/

If you can't access his page, here is the script from his mom Julie, who is simply put, amazing:

"Tomorrow morning, Weston will get a heart cath, nose cauterization, and gtube placement. We ask for prayers specifically for the breathing tube to go in and come out easily. Breathing tubes are very dangerous for pulmonary hypertension kids-especially high maintenance ones like the prince. The gtube and nose cauterization will begin around 7:30am and the cath should get started right at 9am. I am very nervous about the gtube pain, as well as the starting of the overnight feeds. Dr. Glatz came in tonight and told me it was a privilege to get to cath Weston and he was excited for the opportunity to meet him. That was the piece of mind I have been praying for. We haven't met him before but Dr. Hanna speaks very highly of him. Adam Keeton and I know that God has performed a miracle in Weston. Even if the cath numbers are not what we are PRAYING they are, Weston has touched so many lives. I cannot describe how life changing tomorrow's cath could be for him but I challenge everyone to post about Weston tomorrow and invite all of your friends to join "Praying for Weston". Your thoughts and prayers mean the world to us. Please pray for the doctors, nurses, and support staff that will be taking care of Weston tomorrow. Pray for God's will to be done as far as transplant options go. Pray for peace of mind for Adam and myself as we await cath numbers and specifically, after cath, if the numbers are not good. Pray for our hearts and spirits. I am trying not to let myself even think about that but if the numbers aren't what we want then God must have a bigger and better reason for Weston to continue down the heart and lung transplant road. I know, in my heart, and God has performed a miracle in Weston. No numbers, no doctors, no data can change my mind."

Weston is funny, charming, smart, wise beyond his years, sneaky, and everything else you would imagine a 6 year old to be.  He is so full of life, and I pray that he will be granted every miracle available.  Please keep Weston and his family in your prayers tomorrow and please pray for smooth, successful procedures, free of complications and a full recovery.

Thank You and God Bless!

Love, Katye and Caelen

I love CHOP

Caelen coughed up another cast tonight. Damn plastic bronchitis. The good news is that he can cough them up, and that we now have all the meds and equipment at home to deal with it.

Of course this happens after business hours, so I email the picture of the cast to Dr Rychik our cardiologist and Katie Dodds, the clinical coordinator extraordinaire and my constant go to. Dr Rychik emailed back and hour later, and Katie just responded that she'll check in with me in the morning. It's 9:15 at night.

How amazing is this team?

Oh yeah, Caelen's fine. He went right back to playing and eating crackers. He's now trying to empty the contents of the bathtub onto the floor and singing country songs on my phone. His favorite is Dirt Road Anthem, and he knows the words to Come Over, Blown Away, Springsteen and God Gave Me You, along with many others. I love this kid. He's so funny.

And just because I'm blogging, he told me that I am his best friend. My heart melted :)

Love,
Katye

Home

Caelen got discharged today and we got home before 1:00. Yay! He looks great and is excited to be home.

Now it's back to home confinement until all these germs go away. I never want to experience rotavirus again. Or norovirus or any other GI bug.

As always, Thank you for all if your messages and prayers.

Love,
Katye

Groundhog Day

Last night sucked. It wasn't anywhere near scary levels of the past, but it still sucked. The IV diuretics worked for a few hours, and then the desatting would start all over again. It was Drs in the room all night, Caelen crying and coughing, immediate X-ray, chest pt at 4 am and then finally sleep again at 7:00.

His lungs got wet and the Drs couldn't catch up with the diuretics. I'm pissed. I don't know any other way to say it. On Thursday night after he got rehydrated (through nothing other than pedialyte thru his g-tube, same as I did at home), he started getting puffy. I mentioned to the attending that we may need to start diuretics. He said no, wait till the morning. Yesterday morning I started asking for an X-ray and was told it wasn't necessary. Caelen continued fluids. By noon his eyes were really puffy and he started sounding junky. The lasix didn't come until 1:30. Now we were behind the 8 ball. I kept asking all afternoon about X-rays and diuretics, but was told Caelen was fine, even though he had been desatting all afternoon.

Basically, after a long night, I told the resident, you guys may be the Drs, but I know my child better than anyone, and if I ask for an X-ray, it's for good reason.

Caelen is doing much better today because the Drs have upped his diuretics. I'm just really upset we lost a day because the team didn't listen to me. There's more, but I don't want to keep harping. I just wish CHOP wasn't so far away. I even suggested to the resident that he call CHOP and get a plan together. Mean? Maybe. Did he? No. But this hasn't been a good experience.

Time to quit typing while...well, time to quit typing.

Back and forth

Overall, Caelen is happy and doing ok. He's actually recovering from the diarrhea and vomiting and keeping fluids down. The plan was to get him back to baseline feeds and go home tomorrow. Then his oxygen dipped. We spent most of the day trying to figure out what was wrong. He was happy and playing so no one was too concerned, but I couldn't shake the feeling that something wasn't right.

The resident came in this evening and I asked about an X-ray again. He examined Caelen and felt that the lower lobes of his lungs were wet, probably from catching him up on fluids and holding off on diuretics at the same time. So Caelen was just given an IV dose of lasix to help his lungs and we'll X-ray again in the morning. I can't tell you how worried I was that plastic bronchitis was creeping back again. Hopefully, the lasix does the trick.

Funny that we came in for dehydration , and now we're battling wet lungs. I was trying to warn of this today and said that its a very fine line with Caelen's lungs, and he tips easily. But hopefully it's as simple as diuretics.

On the plus side, he had a echo done today so that DC could have their own images, and Dr Harasheh said that Caelen's heart function is great. He said he couldn't explain why his heart looks so good with everything that has occurred and all of the meds he's on. Maybe the meds are working? Seems Dr. Rychik knew what he was doing by putting Caelen on the heart failure meds, and it appears that they are working. Once again, Caelen is baffling Dr's, but this time it's good. He is an enigma.

So, I don't know if we'll get out of here tomorrow. My guess is now Sunday. Aside from not wanting to be here, it's not necessarily because its's DC, it's more that we are on contact isolation and can't leave the room. Caelen is tethered to monitors and he's bored and wants to go run the halls. I can't blame him for being totally annoyed with me. Seems I just keep dragging him to crappy places. He was supposed to go see Yo Gabba Live tomorrow in Baltimore, but now he'll have to wait till next year.

Hopefully, all of these crappy germs will be done soon and we can come out of self imposed exile. Please say a prayer for Caelen's sats to improve and that the lasix does the trick so we can safely go home.

Lastly, please also say a prayer for out heart friend Matthew who passed away yesterday during his heart transplant. He fought so hard for 7 years, but now he is at peace. Please pray for his family and all of the medical team at CHOP, including his surgeon, who are heartbroken. The medical team, especially his nurses and the child life specialists did such a great job caring for him throughout his long hospital stay. You couldn't help but smile when he rolled down the halls in his pirate hat and wheelchair, his crew behind him pushing his vent, and dialysis machine. He had an entourage of nurses, respiratory therapists, social workers, teachers and specialists, and I think they loved getting him out of his room as much as he did. He loved pirates and Disney's cars, and Caelen always stopped outside of his room to stare at the cars stickers on his windows, and say, "get better Matthew!" Matthew touched a very special place in my heart. There was just something magical about him, and my heart is breaking for his mom.

So as I end this post with tears streaming, I want to say, goodnight Matthew. Sleep well. You need a lot of energy in Heaven for running and playing. Thank you for the smiles, you will always have a special place in my heart.

Love,
Katye & Caelen