Going home soon

Ok, well it looks like Ethan will be released from the hospital tomorrow. He has perked up tremendously and the bacteria has been identified as a strep pneumonia. What is/was the cause? We do not know yet. He will be on the new antibiotics for a couple of weeks and then we will have to have another chest x-ray done in a month.

Apparently, it takes a while for progress to show on scans, so it doesn't do us any good to have it done before we are released. I have been talking to a LOT of doctors over the past few days. Infectious Disease (ID) is clearing him of anything major. We do not need a surgery consult yet because what I originally thought was reflux up from his stomach is actually a nasal region reflux. It's a little weird, but we may need to try an NG tube for feeding to see if it helps and if it does, we may be looking into that lovely G-tube that I have been trying to avoid for a few months.

So, if we come back in a month and the scans still show stuff in his lungs, then we may have to do a lung biopsy, BUT that is a LAST resort.

I swear that I am forgetting something. Both Ethan and I took a nice nap this afternoon. No one really bothered us and I only had to ignore a few phone calls. It wasn't that I didn't want to talk to anyone (well, kind of...I was tired), but more that if I moved, Ethan would have been woken up.

Crazy times...Ethan is going to stay home for the rest of the week and if he does ok through the weekend, we have the ok for him to go to school on Monday. Yeah!

Thanks for checking in!

Brace yourselves, this one's tough...

Ok, well the last thing you heard from me was that Ethan had some CT's and that I was off to work at Victory Junction for the weekend. Well, the CT with contrast showed some definite stuff going on in Ethan's right lung. The pulminologist was then called and he decided to do a bronc (a scope put down the throat and into the airway to gather stuff to culture). I was told that it was a minor procedure done in the sedation suite and it would be just like when Ethan has his spinal taps. Since Ethan has had so many spinals, I was put at ease to go ahead with the original plans of working Victory Junction.

I went ahead and went to VJ and went through the orientation. It was a little past 5pm when Scott called me. I was going to be getting ready to meet my camper in less than a half hour. Scott tried to keep things light, but he knew as soon as he told me what happened with Ethan that I would be leaving camp and heading back to the hospital.

I will cut to the chase...During the bronc, Ethan vomited into his open airway. His lungs and upper airway were filled with pus- more than even showed up on any of the scans. Scott was asked to leave the room and shortly afterward, Ethan coded blue. A swarm of doctors rushed to Ethan's aid, he was intubated and put on a ventilator. Another tube was also put up his nose and down into his stomach. Ethan was now in the Pediatric Intensive Care Unit or PICU. My heart stops thinking of what he went through or even how Scott was feeling when it all happened. I feel like I should have been there- we should have been there together, but I can't take it back.

While in the PICU, Ethan was on a fentanyl and versed drip. One was considered a "paralytic" so he wouldn't fight the vent. Because of the medicine, his bladder could not work either, so a catheter was inserted (thank God he was asleep for that torture!) We have seen a lot of things happen to Ethan over the past two years, but this past experience has to top the list of horrific feelings. The good news out of all of this is: Ethan is so stubborn that not even a little PICU action is going to get him down! And, now we have some definite answers for all of Ethan's fevers.

We knew that Ethan was aspirating his fluids, but even after thickening them, he would still get fevers. Well, his reflux was sending gunk back up into his airway even after being digested. We are going to be talking to a surgeon about a procedure to make sure the flap between the esophagus and the stomach stays shut and stuff can't come back up.

So, Ethan needed some blood while in PICU. All of the massive amount of fluids that were being pumped into his little body made him anemic and his blood pressure was not stabilizing. Another chest x-ray done yesterday morning showed great improvement, so Ethan was taken off of the vent, the tube was removed from his belly and the cath was also removed. He was very swollen and beyond groggy drunk, but he did really well!

I tell ya, Ethan really does deserve a medal. He amazes me with the ability to smile even after the hell he goes through.

Thank you for the prayers, dinners, visits, and phone calls offering support...I apologize if we were not up to visiting today. Sleep has not been in the stars for the past couple of nights. Ethan did not sleep last night and was very fussy. I can't imagine why! Today, he was still wanting and needing to sleep, but he still would not. We got him some benedryl this afternoon and he finally went to sleep, as did I. We got in a few hours and Scott had put a message on the door that we were trying to sleep so no one disturbed us.

Scott and I are feeling better. Of course, with everything that just happened, anyone is going to have a hard time getting me to leave Ethan right now. He looks SO much better, but he still needs oxygen and was starting to peak a slight fever tonight. Sorry, no pictures...we do not want to document the last couple of days with pictures, but as soon as he is smiling again- I will be sure to pass them on! I did get him laughing a little today, but not for long.

I am sure that I am forgetting something, but I just also want to acknowledge my work and Scott's work for being so amazing during this time (as always). I also want to thank those involved with my schooling. I have not been able to even come close to concentrate on it over the past couple of weeks, but I am hoping the next week will bring better things.

We do not know how long we will be here, but FINALLY the doctors are treating things aggressively. I discussed Ethan's chemotherapy with his doctor today. While I am nervous to get him back on it after this past week, I also realize that we have one clear chance to beat the leukemia and this is it. Ethan has had his chemo held so many times over the past year and I just do not want to give the leukemia any more of a chance to come back.

I think that's it- plus Ethan is having a couging spell. Gotta go. Hugs.

Still in...

BIG YAWN!

Ok, so again, short and sweet...

Ethan is still spiking high fevers with an unknown source. BUT, he has had two CT scans. The one for the sinuses came out fine and today he had a chest/abdomen/pelvic CT with contrast to search for a possible fungal infection. He is not on any antibiotics because the doctor wants to see what the pattern is for the fevers- and yes, he had some more fever today over 104 just like yesterday.

Scott made it home just fine. We are so happy to have him home! Scott will be staying with Ethan the next few days since I am working at Victory Junction this weekend.

Now, isn't he so precious?

Hospital- again

I won't make this long- I don't think anyways! Here's the scoop:

Friday: Released from hospital
Saturday: Fever at night
Sunday: Fever again
Monday: Fever again (over 103)
Tuesday: Fever again (104 with Tylenol), chills & misery

After leaving a few messages for the dr. to call me, I call again and say that I am bringing Ethan in. I did, he was admitted. I am not in a good place this trip. I don't know why specifically. I think that it just hurts my heart so much to see Ethan as sick as he is and to not be able to fix it or take it away. I would take his pain in a second if I could. So, that's why I am not in a good place today. I am hoping tomorrow will be better and I think it will be because my husband is coming home! The time that he's been gone has gone by surprisingly fast considering what we've been going through while he's been gone, but I am glad to welcome him home!

That's all- see that was short.

Update with Pictures!

Hello friends! Well, I was able to bring Ethan home yesterday afternoon. We stopped by the school because as we were driving by, Ethan got all excited! He really loves his school! When we got home, we both laid down for late naps and slept way too long, but I guess we both needed it! Ethan is still neutrapenic, but fever-free, so that is why I was able to bring him home. I have to take him in to clinic on Monday for counts. Let's hope that they come up by then!

Scott made it to California fine. He has gone to the family viewing and the rosary. He said that Tia looked good...she had her rosary in one hand and her referee whistle in the other! Gotta love it!

Here's a couple of pictures I just took of Ethan and the before and after pictures from the concert! :-)
Ethan says HI!



Before on the left...After below.

Happy New Year!

Wow, it's been a while since I have posted...my apologies. I hope that everyone enjoyed their holidays! Ours were pretty quiet- we enjoyed the time that we had with friends. I turned 29 on January 2. Last year of my 20's...I am ok with it. I wish I still looked like I was under 30 though! Darn stress! Here's to 2006 being better!

Ethan has been hospitalized twice since the New Year. I am actually posting from the hospital. I "stole" one of the hospital laptops, which is a no-no...all that HIPAA junk. Anywho- we may get to go home tomorrow if his counts come up. He's still neutrapenic, but not by much.

I am now flying solo this trip because Scott got on a plane today. One of our dear family friends passed away last Friday...the 13th. Ethan was dx'd on Friday the 13th. I now hate two things- CANCER and Friday the 13th. Joann was an extremely instrumental member of our family as well as many others. We will miss you Tia! I am so glad to know that Scott is able to be home for Tia's services.

Scott has been such a trooper this trip. Ethan was admitted on Tuesday, but I had to work because I was only working part of Wednesday and then took today off. I had the time planned off because of my birthday present to myself...BON JOVI! That's right, you are jealous! lol! I have been wanting to go since I was young when it seemed that everyone in my family went but I was not allowed to go because of my age. (I'm not bitter...really). That has been the best birthday present I have EVER given myself before! Thank you Theresa for going with me and making sure that we rocked out like there was no tomorrow! WOO HOO!

That's about it for now. I need more time for homework, but hopefully we can go home tomorrow and I can work on it! Oh, by the way...if you call my cell phone and it says that my number doesn't exist or something like that it's just because I can't find the stupid lil' booger and I had the phone restricted just in case someone has it. Pray I find that phone! It has so many numbers in it!!!

I will post some new pictures of Ethan when I get a chance!

Hugs,
Kristen