For the Love of Cutter

For the Love of Cutter

Saturday, October 27, 2012

The Verdict

Hello friends! Dr. Elkay presented all of Cutter's evidence at the epilepsy conference on Thursday. Everyone decided that surgery is going to be the next route for little Cutter Bug. Cutter's initial surgery will consist of intracranial monitoring for three to seven days. They will place a grid on his brain that will allow them to pinpoint exactly where the seizures are starting, what parts of the brain are being affected by the seizures and the pros/cons of removing the cortical Dysplasia. This is very much like a regular EEG but there are many more leads and is a lot more precise. They are looking to start the procedures somewhere around January 5. Dr. Elkay is wanting to do the procedure during a time when she is not working so that she can monitor Cutter very carefully. This the road that God has led us down, and Grace He will provide! We will keep you updated! Thank you so much for your prayers!!!

Thursday, October 18, 2012

Home Sweet Home

Hello Friends, We are finally home and all settled in. Cutter had a rough night and didn't sleep very well. He has had 11 seizures today. :( They didn't change any of his medications this time, so hopefully, he will get back to his normal self and the seizures will decrease. Dr. Elkay came by this morning and told us that she would talk to us next Friday about the decision that the board makes about Cutter being a surgical candidate. So, that is all for now. Thank you so much for keeping up with Cutter and his progress this week. We haven't been able to get back in touch with everyone that has sent emails and messages, but we will try! And we certainly appreciate all of them! Thank you for the prayers. As we hear from Cutter's doctors, we will post again!

Wednesday, October 17, 2012

Day 4 Evening Update

Hello, Cutter's scan went well today, and we were able to get the information that Dr. Elkay needed. The sedation medication made him sleepy today, and he slept for a large portion of the day. He has been awake and pretty happy this evening, although he would love to just get down in the floor and run around and play. Dr. Elkay is going to let us go home sometime tomorrow. YAY! We got to meet with Cutter's potential surgeon this afternoon. His name is Dr. Eldad Hadar. He has been working at Chapel Hill for the past eleven years. He mostly practices on adults but used to only practice on children. He knows a lot about Cortical Dysplasia and has performed many surgeries on children with Cortical Dysplasia. He wasn't able to talk to us specifically about Cutter's case because he has not been presented with it yet, but he was able to answer some general questions. Next Thursday, the epilepsy board will convene to discuss Cutter and whether or not he is a surgical candidate. At that time Dr. Elkay will present all of the evidence and give her recommendation about what needs to be done. Dr. Hadar will let her know if surgery is the right route to go. So, we will know more next Friday. If surgery is not the answer, then I am sure the board will come up with another solution. It was a little overwhelming talking to the surgeon. Nothing he told us was scary or anything that we have not heard before. It was just overwhelming. The same sort of feeling that we felt last year before Cutter was presented to the board. We are fully aware that God is in control of this situation, just as He has been in the past. We know that He will not take us where His grace will not provide for us. However, we are human, and you can't help the feelings of anxiety and sadness. I think God expects this. This is just when we have to lean on Him the most. We know that God will take care of our Cutter. After all, He loves him more than we do! So, hopefully, Cutter will continue to have a good rest of the day. He has only had one seizure today, and that was without the extra medication that was given yesterday. We have been so grateful for all of the phone calls, text messages and prayers. We know that many people wish that they could be here with us right now, but your prayers and thoughts are just as important! A big thank you to Lester and Sara, though, for coming down with us this week so that we could have some help with the boys, especially Maverick. We couldn't have done it without them! Thanks to you all for your support. We will keep you updated. Love you!

Day Four Morning Update

Hello, Well, last night was eventful for poor little Cutter. He started crying about 11:30 and cried until 1:00 a.m. We couldn't figure out what in the world was wrong with him. He wouldn't tell us that anything hurt. We checked his arm but didn't see anything wrong. By 1:00 a.m. the nurse came in and unwrapped his arm where his IV was. The IV had gone bad, and his entire hand and arm were swollen. We felt awful! They gave him some Tylenol and some heat packs (which he did not use, of course). They decided to wait on giving him another IV, and we were all able to get some sleep, at least from 1:30 til 6:00. At 6 this morning they gave him a new IV and drew blood to check his medication levels. He has not had any seizures since yesterday around 11:30 a.m. He had an order for "nothing by mouth" after midnight, so we were eating at 10:30 last night! He didn't get to have his test until 12:30 today, and he is so hungry. He kept asking for cookies and prizes and something to drink. Talk about making you feel awful! Since he couldn't eat or drink, neither did we. So, he is gone for his scan right now. Just like last time, it will take about an hour to complete, and then we get to see him. We get to wait with him while he wakes up from sedation. He will be hooked up to the EEG monitor again once he gets back to the room. If all goes well, then we may get to come home tomorrow! YAY! Nothing like being at home! We will keep you updated. Thank you for the prayers. They certainly help!

Tuesday, October 16, 2012

Day Three Morning

Good Morning! Cutter didn't sleep as well last night as he did on Sunday night. He had a few episodes, though Dr. Elkay is not convinced that they were actual seizures. Chris and I were awake about every hour pushing buttons to record the events, describing what we saw and writing down the times. We are a little exhausted today. This morning, Cutter has already had about 15 seizures. He has already had a little nap because they made him so sleepy. Since his nap, however, he has been in a great mood. He was very excited to see his brother when he woke up. They have really missed each other. Dr. Elkay is going to give Cutter Fosphenytoin through an IV this morning to slow down his seizures. This is to prepare him for his test tomorrow. They will do the SPECT test again during a non-seizure event. The test will probably be sometime after lunch since he usually has most of his seizures in the morning. So, today we sit. And sit. And sit. And sit. And Cutter does not like it not one little bit. (Thought we would go for a little Dr. Seuss there!) It is very hard for a 2 year old to sit in one place for such a long period of time! Especially this 2 year old. Maybe he can play at some point in the near future. There is a big playroom upstairs that we can borrow toys from. We will go get some soon. That is all for now! More later when we have more news! Have a blessed day!

Monday, October 15, 2012

Doctor Update

Hello, We got to talk to Dr. Elkay this afternoon. As far as the test went this morning, there was a small glitch. While he was having the seizure right before the injection the EEG did a routine maintenance check on the computer down in the lab. Therefore, part of the information was lost. (6 seconds) This was very frustrating for us, because Dr. Elkay said she couldn't read the EEG very well because of that. However, we do not have to repeat that particular test. On Wednesday, however, we do have to do another SPECT test, but this will be done during a non-seizure event. They need to have a baseline image to be able to compare today's image to. She told us that if does not see enough seizures on the EEG report then we will have to stay through maybe Thursday or Friday. Hopefully, she will see enough by Wednesday, and maybe we can go home after the SPECT scan that afternoon. So, the plan for now is just to monitor Cutter through Wednesday, do the SPECT injection and scan on Wednesday, and we will go from there. They took Cutter off two of his medications this morning, but has since had them again. Tonight he will be back on regular schedule with his medicines. As of right now, he has had about thirteen seizures today. This could possibly be due to not having his medications this morning. Thank you for your continued prayers! He is ready to out of here already, but hopefully, it won't be too much longer!

Chapel Hill Day 2

Good morning! Cutter slept very well last night. No seizures all day yesterday. Normally, that is great, but we needed him to have some while hooked up to the EEG machine, especially during his SPECT test today. We had told everyone to not wake him up until the test was set up because he is sure to have a seizure right upon waking up, and we didn't want to miss that opportunity. For the SPECT test a nurse and an EEG tech had to wait in our room until Cutter had a seizure. At that time, you have a matter of seconds to inject the nuclear medicine into his IV so that he could be scanned. We knew the medicine would not be Ready until 9:00 this morning. At seven the lab came up to fix some of the leads. Of course, this woke him up. And of course, he has a seizure. And of course, at that moment the EEG machine decides to mess up and is not on. And it is nowhere near 9:00. We were so worried he would stay wake and not have another seizure. Every time he started to get sleepy another doctor or two would come in. Four came by in a matter of minutes. We knew Cutter would need to go back to sleep so our nurse put a sign on the door to not come in. Around 9:35 Cutter woke up. The neurology team walked in at that moment. He had a seizure, the nurse injected the nuclear medicine and the event was recorded. All in a matter of 11 seconds. Who knew such an important test would be so time consuming, yet so short. It was a terribly complicated process, but one that went well After it was ready. About fifteen minutes after that the sedation team came to get him to be sedated for his scan. Luckily, Cutter had not had anything to eat or drink after midnight last night. You have a two hour window to be scanned after the medicine is injected. So, after fifteen minutes he was sent to the scanning dept. the scan is similar to an MRI but not quite the same. He did have the same medication that they use for MRIs. He has had it in the past, and usually does well with it. Right now, we are in the waiting room. The scan should take about an hour. Hopefully, they will see all that they need to see. I would love for the doctor to tell us we can go home a lot sooner than expected! We will update again soon! Thank you for prayers! God is so good! We give Him all the glory and praise!

Sunday, October 14, 2012

Chapel Hill Day One

Here we are at Chapel Hill again! We will be here for the next three to five days. Cutter has continued to have seizures daily. In the past 100 days he has had seizures 79 of them. Some days only one. Other days as many as eighteen. Cutter will be hooked up to the video EEG in the next little bit. He cried when he got to his room. It was so pitiful. But now he is playing happily with a Toy Story Yahtzee game. Maverick is loving all the toys in the play area. He has fell in love with one of the riding toys! We will post more as ergo! Thank you for the prayers!