RSV again...

Cohen spiked a fever last night so they did cultures and tested his snot. He is positive for RSV so they took an x-ray (which shows no cloudiness in his lungs) and are giving him antibiotics. They are also going to start a respiratory treatment which will run during the night for 2 hours at 9pm 2am and 7am. We can't be in the room during that time and 45 min. after. Poor Cohen. He's been through so much already and they said he'd probably catch something during this time but I didn't think it would be so soon. I just hope that it doesn't get any worse. RSV is scary especially with him having no cells to fight it. He's been down the last few days. Playing only a little and not really eating at all. They stared TPN and Lipids two days ago. I don't think he's lost any weight.
Kelsi sats have been really low the last few days. As low as 75 and as high as 84. She was at 78 at 5:00 today so I am going to call Dr. Cowley's secretary and pick her mind tomorrow morning. I think they may put her on oxygen before they do (or decide to do) the next procedure. I definitely think they close the hole in the Fontan because there are only a handful of times when her sats are above 85.
Well thanks again for all of your prayers. It's crazy that everything is happening in such a short period of time. One day at a time right. Also please pray for our friends baby Gracie. She also has a heart condition and is having a hard time. Her link in on the right under heart buddies.

Bone Marrow/Stem Cell Transplant

Well today's the day and it's already over. They started at 10:43 and it was done at 11:05. The stem cells are given just like a transfusion but they let the cells free flow into him. He was sleeping the whole time. It was pretty neat to see how they did everything. They stored them in nitrogen in a container (picture below.) The prep is like what you'd see in a scientific movie. She had to use this big long blue gloves and dry ice smoke came out of it when she opened it. The little container that held the bag of stem cells also had the dry ice smoke coming off of it. The pictures I took didn't show the smoke. They defrosted the bag in hot water hung it and it went in to him. I'll take that transplant anyday!!! Below are pictures of him before, during, and after the transplant, the large container, the many little containers, the lady holding the one container that held the bag they used (she moved while I took the picture ha,) the bag of stem cells, and the presents he got from the Bone Marrow Team. Yay!!! One done one to go. He is done with chemo for this stay. His bone marrow just needs to recover before he can go home.

Happy Easter

Today is day 3 of chemo. He is handling the higher doses of chemo pretty well. He's only thrown up once. He is soooo grumpy though. He'll scream and cry for something, be happy for a minute, then do it again. He is so tired but refuses to take naps. He does have his really cute moments though. When he is ready for a nap he wants to cuddle with me and have me nap with him. He started giving himself his own medicine and giving the nurses his arm and finger for vitals. At least he cooperates that way.
Since he will be more immunosuppressed than he has ever been before we have to be so clean and careful. We have to put small amounts of candy or other dry food in baggies, because he can only have food exposed to air for 45 minutes. So this was definitely a harder Easter to prepare for. I had to separate all of the candy in to little bags and I stuffed some of the bagged candy in eggs for the kids to find. I also had to wipe down everything and put they're easter baskets in the dryer (the dryer will kill any germs on cloth or stuffed animals.) It took a lot longer than I expected. I thought for sure Kelsi was going to say something because it does look really silly but she hasn't said a thing. They are enjoying the toys and candy. Hopefully that will help make Cohen's day a little better.

Sweet little boy/Kelsi and her sats

I absolutely love Cohen's age right now. He is just so cute and learning so many new things. He is saying new words everyday now. My favorite at the moment is yeah. He says it with so much enthusiasm. He use to just say mm when he meant yes and picked up yeah when he was in the hospital this last time. Also his favorite thing to do right now is walk around in shoes. Kelsi's princess shoes are his favorite; then my stilettos. He walks better in them than I do! He's just so much fun! I love seeing him grow up and his personality shine.
So Dr. Cowley spoke with us regarding Kelsi's sats the other day. He wants us to monitor it 3 times a day for 3 weeks. If it is mainly lower than 85 he will go in with a catheter and close the hole in her Fontan. So far (since Friday) it has only once been above 85... I'm really nervous for her to have that done. I don't know what too much pressure in her lungs would do. There aren't anymore surgeries planned before transplant so it just scares me that she'd need one sooner than later. I'm not sure what recovery time would be after they close the hole. Usually procedures in the cath lab only require them to wake up and hold down liquid and solids. But maybe with this one they'll need to monitor her longer. Two kids at PCMC would be hard to manage.
Thank you so much for keeping both of them in your prayers. :o)

Calendar

Since no one could view the google calendar I had to improvise. I will search for a calendar that is will show the appointments on the blog. Until then I will just use text and update it. :o)

We're Home!!!

One day late but that's ok; at least he was able to go home today. Surgery really wanted him to eat and drink like a normal kid should before they sent him home but ICS kept telling them that he is doing better than they usually expect from kids with Neuroblastoma and that they should send us home over the weekend so we can have a short break. The deal they made was that he needed to drink at least 40 cc's per hour (a sippy cup in 4 hours.) Normally that would not happen so I had to keep on Cohen to get this done. He was not happy but he understood that if he drank his juice he'd get to go home.
He had his GFR (kidney test) today but it didn't work so he needs to do it again. It's not a big deal but it is just time consuming. He has to have another iv placed so they can inject some liquid in it, do a 2 min scan, have blood taken 1 hour later, and then again 2 hours after that.
His pathology test came back yesterday. I was given a copy of it but I can not understand it at all. The Doctor said that the outer part of the tumor out was tissue (which is good because it tells us that he got most of the tumor.) Also the tumor on the lymph nodes is dead (the surgeon said that if he left any behind it would have been on the lymph nodes.) Some of the tumor had live cells but they've matured a step higher than they were. Both the Surgeon and his Oncologist were very pleased with the results. YAY!!!!!!
Kelsi, my mom, and I went to Disney Princesses on Ice, thanks to Energy Solutions for donating tickets to Intermountain Healing Hearts. We had so much fun. Kelsi loved it. That is definitely something we need to do more often!
If you can't see the appointments on the calendar will you let me know? I will try to figure out how to make everyone able to view it.

Day 8 + Stem Cell Transplant info

Sorry I haven't updated in awhile. Cohen is doing great!!! They removed the NG tube on Monday, started him on clear liquids, and he's was able to start eating yesterday. Everything looks great and they were saying he will probably could go home tomorrow.
After Cohen is discharged from this hospital stay he will no longer be followed by Oncology. The Bone Marrow Transplant Team will follow him through both stem cell transplants, radiation, and then 6 months of oral medication. After that Oncology will follow him again. I can't believe that Cohen will have his first stem cell transplant soon. Time has flown by so fast... They are hoping to start chemo on the 21st; assuming that he has recovered from surgery. He will have 6 days of chemo at very high doses, 1 day to rest, and on the 8th day he will have the 1st stem cell transplant. The high doses of chemo destroys all bone marrow cells and the transplant will help the bone marrow to recover. The stem cells will go into his IV exactly how a blood or platelet transfusion does. He will need to stay in the hospital 3 to 4 weeks (until his bone marrow recovers.) During that time he will receive transfusions, antibiotics, pain medication, and nutritional support. The 2nd transplant will be at least four weeks from the day he received the first transplant.
I've updated the calendar above with our schedule with the upcoming tests and other stuff. He'll have a busy week next week.

Day 4- No more oxygen

Cohen is doing really well. He is still in pain but he's standing it. The morphine was making him really itchy and the benedryl wasn't helping enough so they put him on toradol. It is working really well. He seems to be more comfortable and he'll play for a bit here and there. I'm suppose to make him stand at least 4 times a day but he is not liking that. He blew some bubbles and on a pin wheel yesterday which is great. They encourage stuff like that to make the lungs stronger and to try to get out the congestion. He was able to come off of the oxygen late last night. He hasn't touched the other tube in his nose since. He still hasn't had a bowl movement so the stomach tube (NG?) will probably be in until tomorrow. Still no word on how long he'll be here. But all in all everything looks good. Here are a few pictures from this stay.

Out of the PICU

Cohen was able to move to the ICS unit at 5:00pm. He is doing really well but is in a lot of pain. They are able to manage his pain by using the morphine drip. (I think that's what it is called.) They were pushing it 3 times every hour but have had to push it a few more times since 3:00am. He is being so cute though. When he is in pain he'll either call for Elmo or mommy. He has held on to Elmo since he woke up this morning. I'm glad that he has something that comforts him.
He is on a half liter of oxygen now. That tube and the one that goes down to his tummy are driving him crazy. He itches his nose and tugs at them every time he is awake. He pulled the one in his tummy out of his nose three times before he went down for the night. I think they will remove that one once he has a bowel movement. Since his intestines were disrupted he needs it to keep his stomach empty and to keep the air out. He has a little congestion in his lungs and once he coughs that up he probably wont need to be on oxygen anymore. I think that one is a little more irritating since it is drying out his nose.
It's funny; my kids always seem to cut estimated recovery time in half. I hope Cohen continues to do better and wont be in so much pain soon.

Day 2 - Recovery

Cohen had a very good night. This morning at 10:30 they were able to extubate him. At the time they weren't planning on doing it but he woke up and was trying to pull the tube out himself. He is still on a liter and a half of oxygen and is currently sleeping. Do in part to all the drugs. We have also been able to hold him after the extubation. Cohen has been very excited to see us. Were not sure if us being is a good thing or a bad thing because he just wont hold still; causing more pain and stress for himself. The doctors are confident that he will be moved to the floor either tonight or in the morning. All they need to do is get him on a pain regiment the nurses on the floor can manage safely.

Surgery was a success

They finished up about 8:00 and came to talk to us about 8:30. The surgeon said he thinks he got more than 95% of the tumor out. He thinks what could be left isn't alive. They sent the tumor to a pathologist and he will be able to tell us that, if there is anything left in Cohen's abdomen, if it is alive. (Sorry it's been a really long day and that sentence doesn't sound right to me but I can't think of any other way to say it.)
Cohen is intubated now and they hope to get him off of the ventilator tomorrow morning. He lost all of his blood throughout the day so he has brand new blood in him (thank you donors!) He is really puffy and his heart rate kept shooting up because he was uncomfortable and waking up. His nurse gave him some more morphine but he really likes to fight medicine. It's so hard to see him this way. You'd think we'd be use to this from Kelsi and all but I couldn't help but get teary eyed. Poor guy shouldn't have to go through all of this...
Thank you so much for all of your kind thoughts and prayers. He is such a trooper.

He is still doing well. The nurse said that they aren't even close to being done and can't really say how much longer.

They just called to let us know that he is doing good. They also called about an hour after my last post and said that they put in his double or dual broviac and that they made the incision. They are removing the single central line (broviac) and placing the double for his stem cell transplants.
I forgot to mention that Dr. Meyers was in an accident and injured her leg so she isn't able to do the surgery on her on. Dr. Rollins is doing most of it and she will help out and be in there the whole time. They haven't mentioned how much longer it will take...

They took him back at 11:00. We haven't heard how it is going yet. The nurse will update us every 1 1/2 to 2 hours. The surgeon said it could be anywhere from 6 to 12 hours before they are done.
His ultrasound looked good. They wanted to know if the tumor had been pinching his inferior vena cava but it's not.

Surgery tomorrow

Surgery is still on for tomorrow. He'll have an ultrasound at 7:45 and then we'll check into Same Day Surgery at 8:45. I'm not sure how long the surgery will be. I will post updates tomorrow as they come.