Nolan has had an awesome day!!

The bi pap came off with no problems and he hasn't had anymore seizures so he got all the leads taken off of his head :-) 

Please be in prayer that he will have a good night so that he can be in a regular room tomorrow ;-)

I don't really know what the plan is after that but we are just taking it one day at a time...

~Brittany 

So sorry for not updating...

Nolan continued to have seizures over the weekend and he had to be moved to the PICU so they could get everything under control in a safe and fast way.  Today he's finally been awake and talking more! Which we love!! 

 Unfortunately he has not been able to come off the bi pap without desating. The doctor ordered an X-ray and Nolan's lungs look great. So this problem is either seizure related or because of the decadron wean.  They are going to try to take the bi pap off in the morning and if he does the same thing they will have to increase the steroids. Decadron is such a necessary evil but if it gets him out of the ICU we will take it. I have a feeling we will be discussing the next steps with Nolan's treatments soon. They don't want to do an MRI (because of the sedation problems) and we have determined the topotecan (chemo) is causing his electrolytes to drop... which is causing the seizures. We can't do this to him every month. So please be in prayer that we can get him off the bi pap in the morning and that we will make the right decisions for Nolan....

Thank you for all the support and prayers!

Brittany 

MRI

Well, MRI did not work out...

It was cancelled Monday because the anesthesiologist would not sedate Nolan with Propafal because of him being on bi pap at night but suggested general anesthesia or no sedation. We decided to avoid general anesthesia if at all possible and would try no

Sedation today. He was given Benadryl and Ativan right before the MRI to help him sleep and to relieve some itchiness he's had going on but he could not lay still. When you have to itch you have to itch.  Poor boy has been miserable with this itchiness for about 8 months now and nothing helps. The only thing that will give him temporary relief is Sarna.

So the plan now is to work on getting him to rehab and he will start his next round of chemo on Saturday. In the meantime they will work out the details of when and how he gets his next MRI.

Thank you for all the prayers and support!!

Brittany 

Please pray for Nolan and Brayden to have good stable scans tomorrow!

Nolan is doing good but did have to have another shunt surgery yesterday. Thankfully everything went well and so far no more problems :-) we are just patiently waiting for tomorrow's MRI's to reveal the next steps....

Thank you for all the prayers and support!

Brittany 

Nolan has made amazing progress! No more seizures!!! Woohoo!! :-) his speech is almost completely back to normal and he's getting noticeably stronger. The EEG is off and the drain is supposed to come off This afternoon. He's still having a little bit of trouble keeping all his electrolytes up. His magnesium, sodium, phosphorus & calcium are all low or border line low.  This has been a continuous problem since he got the cytoxan back in December. Hopefully over time it will correct itself but in the meantime we will just use supplements. He's still in the ICU but we are working on getting his sodium from an iv drip to a g-tube med.  Once that's done and he's holding his levels good he can move to a regular room :-)

Thank you for all the continued prayers!!

Brittany 

Nolan was up at 3am this morning asking for juice :-)

His sodium is back to normal and he's trying to say things but his speech is still very slurred. He is also showing more weakness on the left side of his body. He hit the right side of his head and had surgery on the right side so it looks like it affected his left side.  Some of the doctors want to do an MRI but I think we are going to hold Off right now. We don't want him under any sedation right now unless it's absolutely necessary. He's still having some seizures...

He had about 15 yesterday and 6 overnight.  The neurologist came in and made a recommendation for a fairly new seizure med that has been really helpful in kids with brain tumors so I think we are going to give it a try today. 

Thank you for all the prayers!! 

Brittany 

The last few days have been rough for Nolan...

He was doing so good after surgery that they were going to move him to a regular room but before that happened Nolan had a set back :-(   He had woke up yesterday morning fine and talking but was in pain so the nurse gave him some morphine and he took a nap.  When he woke up he could no longer talk, his teeth were clenched and he was having a lot of facial twitching.  I knew that he was having seizures... He had a ct scan after the episodes which showed the ventricles in his brain are still a little large.  The doctor wants him sitting up in bed to hopefully help with the drainage.  He will have another ct in the morning to make sure this Is looking better.  Please be in prayer for a good scan! I really don't want him to have to have another surgery.  The other problem he has going on is when Nolan went into surgery he had a normal sodium of 141 the day after it went down to 127 which triggered the seizures.  He's getting continuous EEG monitoring, they have gave him a bolus of two different seizure meds and have him on a slow drip of sodium to hopefully get the seizures under control again.  There is talk of doing an MRI tomorrow if things don't improve....

Thank you for all the continued prayers!!

Brittany 

Nolan has been very sleepy the past few days and I related to the fact he has just been laying around a lot lately.  so when yesterday was beautiful and sunny I encouraged him to get outside and walk to the end of the driveway and back with his walker.  All the kids were outside and Nolan was really enjoying being outside till all of a sudden his legs gave away and he fell backwards hitting his head on the pavement. I quickly rushed him to the ER where they did a CT scan of his head and realized he had a brain bleed. On top of that apparently his shunt had started malfunctioning sometime in the past week or two.  Our biggest concern was the low platelets could cause things to be even more serious but after test were run we realized Nolan's platelets went from 52,000 on Tuesday to 163,000. Talk about a big recovery!! The doctors thought it was a mistake so they ran it again but it was real :-)  He did have surgery last night and the neurosurgeon was able to remove a pretty large blood clot, he replaced the valve on Nolan's shunt and put in an external drain to remove the excess blood off of his brain.  The whole surgery went really good! The anesthesiologist prepared me for him to come out on a breathing tube because of his recent case of pneumonia but Nolan came out breathing on his own and talking.  He's doing super!! His CT scan this morning was much better! So hopefully the drain will come out in the next day or two. He will stay in picu at least one more night as a precaution and then he should be able to move to a regular room. 

Thank you for all the continued prayers!!

Brittany