Tacen's Story

I need to get this written out here goes...
Thursday Oct. 18 we flew out from Utah to meet up with Cade in Fort Worth. I'm usually so sad to leave Utah, but this time I was so excited to get back to Cade.  We got there and Tacen was super excited to see his Daddy. He just hugged onto him and rested his head on his shoulder.  That evening we were in Olive Garden getting dinner and he threw up.  We thought it was really strange.  We figured it must be his milk mixing with Cade's lemonade it was drinking so quickly.  We ordered food to go and went back to the hotel.  He then proceeded to eat 1/4-1/2 of the bowl of chicken gnocchi soup I had ordered.  We figured he was fine. We got up Friday morning (10/19) and he ate some pancakes and was doing fine.  We took him swimming and also to the stockyard.
Afterwards, we left to head home. There was a Costa Vida not far from us so we decided to eat there. We stopped at a Wendy's to get Tacen some chicken nuggets.  They had a meal for $1 more with apple juice and apple slices. He picked the apple slice over the nugget and was eating it away, when he proceeded to vomit again.  We were really concerned at this point.  We were trying to watch what we were giving him to eat.  He seemed to be keeping things down so when we stopped off for dinner we got him some Mac and Cheese from KFC and stopped at a Quiznos for us. While inside he vomited yet again. The previous two times he'd been watching the iPad. So we began wondering if he was getting car sick.
The rest of the drive home we monitored what we ate and didn't let him watch any more iPad. We arrived home at midnight. Saturday (10/20 - Cade's 26th Birthday) Tacen slept til 7am. Cade got up with him and gave him his Baba and then made him some eire kuchen. It was some he'd made before he left, so I tried it first before feeding it to Tacen. He at 2 and drank some juice and was doing great. He grazed and had his baba throughout the day.  That evening he had spiral mac and cheese and ate great!  At this point he had regressed and was no longer walking. He was getting his last two top 2nd molars and we were anticipating a regression. We had planned to call Dr. Fulton Monday morning.  He was so exhausted. He took 2 - 2-3 hr naps and then slept a solid 12 hrs that night.
We had decided to just take Tacen to sacrament and then leave since he was in no condition (not walking) to go to nursery.  Sunday morning (10/21) we got Daxon down for a nap and Cade and T were watching TV, so I went back to shower. While I was in the shower, Cade brought Tacen back and he had thrown up again.  This time he hadn't been in the car for over 24 hrs. So we worried we were missing something.
Cade called our pediatrician office and got the weekend clinic. They suggested after hearing some of his history that we call the neurologist. We got the on call neurologist who suggested we got to the ER.
We debated, but decided we should take him in. We waited a little in the waiting room and were back in a room within 30-45 minutes. Then we proceeded to wait for 3 hrs with only seeing a couple nurses for a few minutes and a 3rd year resident. We were tired and frustrated and decided we'd just go home and call Dr. Fulton first thing Monday morning. Unfortunately he threw up on the way home, but again we wondered if it was related to the car.
First thing Monday morning at 8am (10/22) I called Dr. Fulton's office and spoke with Nurse Lana. She took all the info and promised they'd call. I took the boys out running and tried to have a somewhat normal morning. Tacen took a 1 1/2 nap and was just tired. He just wanted to sit on the couch and watch T (TV).  He also really wanted me close by and if I left the room to help Dax he'd get off the couch and then just lay in front of it and cry.
Dr. Fulton called back around 1:30pm. He was concerned and decided our best move would be to have Tacen admitted into the hospital. This way we could have all the imaging and testing down without waiting like an outpatient was taking. Dr. Fulton explained that when Tacen was home and doing well he didn't mind waiting, but if he wasn't doing well he wanted to get to the bottom of this sooner than later. We needed to go into his office and then they'd direct admit us from there.
Cade had a test and once it was over he came right home, we loaded up and left. Poor Tace threw up on the way there. When we got there they got us right in and Dr. Fulton met with us almost immediately. He was concerned and ready to move forward. We are so thankful for his concern and insight. While waiting to be admitted, Tacen asked for Cheerios and Balls(Trix).  He seemed to be alright so we let him eat them.(This would be one of the last things he ate in days).
They took us up and admitted us. Tacen was doing ok at this point. He wasn't walking or interested in crawling, but was still moving his entire upper body and doing well as far as that is concerned. He was still talking and very aware of things. Our sweet friends Jordan and Jen and their darling girls came and brought pizza, chips, cookies and drinks. We really appreciated them.  Daxon and I stayed a while and then left so I could get him to bed. Cade spent the night there. They wanted an IV in him to get fluids since he'd been vomiting so much.  They had a hard time getting it and ended up using an ultrasound.  They wouldn't give us a definite time on the MRI scans set for Tuesday morning(10/23). Through all this Sue decided to come back. She got a ticket out of Salt Lake for Tuesday morning and planned to arrive at 1:45pm in Memphis.
Dax woke me up at 5:45am he went back to sleep, so I got up and got ready and go things ready to go. I was waiting to hear on a time before I woke Dax up. Cade called at 7 to say they were getting ready to take him and had just now informed him. I hurriedly got Dax up and fed and took off. We hit rush hour and didn't make it before they took him back. We arrived in time to wait for him to come back.
Once back out they said he head would be weak and to support it. He still wasn't moving his legs at this point.  Within an hour they had the results and said it was an Artery Ventricular Malformation(I think).  They said there were large arteries feeding directly into veins and this was causing a build up of fluid. After his MRI he kept asking for his blankey. I climbed up in bed with him and sat behind him and just held him. He drank some juice and water and then threw it all up. We were waiting to hear from the neurological interventional specialist when Cade's mom was landing. So I loaded up Dax and we went to get her from the airport. We were so thankful for her willingness to pick up and come and to be there with us. While we were gone Tacen asked for a cookie and cracker. Cade let him eat 1 saltine cracker and 1/2 a cookie.
By the time we got back they wanted to take him to the cath lab to put in a catheter in his leg and take some pictures of his spine to see if they could find the spot which was causing the problem.  We thought it would be later that afternoon and before we knew it they were ready to take him. It was emergent enough that they weren't even concerned that his stomach wasn't empty enough. We were ill prepared to head down, but just went.  They took him in at 3:30pm.  They told me they'd call at 4pm with an update and then every 1/2 hr after that. When we got out of the cath lab Cheryl Longshore and Beth Jones were there waiting for us. They waited in the waiting almost the entire time he was back there. We also had Craig Moss & Michael and Krystal Cole come by.  Later Craig and Katie Moss came back as well as Sam and Michael Richardson bringing us dinner. They were all such great support and distraction. It felt great to laugh and feel light hearted after such a whirl wind of a day.
After working until 8:30-9pm they came out and had been unsuccessful in their intervention.  They had attempted to block the artery they thought was the culprit with some permanent adhesive and it didn't work. They wanted to look over the images and decided where to move forward from there. They took him up to the PICU (pediatric intensive care unit) for monitoring all night.  When I went back to see him he was asking for, "Wa(water)."  I told him how much I loved him and then headed out with Daxon to get him some sleep.
Throughout the night he asked for Wa, his baba and blankey a few times.
(10/24)Daxon and I went home that night and besides getting up at 4am to feed Dax, I slept until Cade texted me at 7am.  It got up and got ready and Dax got up at 7:40am. He ate, got dressed and we headed out.  They were still discussing options and decided when we got there they'd take him in for another more specified MRI and a CT of his upper head since his upper body movements were much less than they had been.  They were trying to figure out exactly which vein was the problem area.
From the imaging they could see that there have likely been a serious of mini strokes in his spine due to the build up of fluid.  They were concerned that if they didn't do anything that eventually he'd stroke out. If they did the surgery they could clip the vein and it could feed into the spine and cause and stroke and paralize him. We didn't really feel like we had many options.
I took Daxon home that night.  At 12:30am(10/25) Sue called to tell me he had kidney stones, they'd given him Ibuprofen and water.  After I got off the phone it didn't all fit together, so I called Cade and he had kidney stones not Tacen. Mike Jones and Bishop Longshore were going to come give him a blessing. At 1:15am Cade texted me and they were worried about Tacen's breathing. I called and we decided I should come. I called Brenda Griffin and she agreed to come to be in the house with Daxon. I pumped threw some things in a bag and left.  I tried to called Cade to find out what was going on and he didn't answer. I called Sue and he couldn't really tell me much. I could tell it was bad, but didn't know how bad. I prayed hard that he would make it for me to get there!
When I got there his breathing was shallow and they put a breathing mask over him. His oxygen came back up and he seemed ok although his breathing still seemed strained. Bishop and Mike gave blessings to Cade, Tacen, me and Sue. Beth Jones was also there and she told me she felt impressed to tell me that I could do this that I was strong enough to handle this.  Then they left and we tried to get some sleep.  At 7am they had to intibate him because he was struggling too much to breath on his own. This was good though because it would/will take the pressure off of his body.
Dr Klimo (one of the best neurosurgeon's in the country who also happens to be LDS) came in and said they'd be taking him for surgery between 12&1pm.  Then an hour later he and Dr. Elijovich came in to say they'd just gotten off the phone with a Dr. from John Hopkins who has seen 1 case similar to his. The images look very similar, although the symptoms vary greatly. They said that the surgery wouldn't do anything and there was nothing they personally could do. I asked if there was a chance we could lose him. They said there was.

Today was a good day(10/26/12)! Tacen stayed stable throughout the night. His oxygen leveled out and stayed high and his BP came back up where they like it.  When I got there this morning the only problem was a elevated temperature.  They worked on regulating that. They took him off the versed to see if they could get him to wake up. They took him off at 6am and figured it could take until as long as 2pm before it would be all out of his system.  He remained stable throughout the morning.  They slowly weaned him off of 3 different meds and also lessened the oxygen and nitric.  They had him down to 48% oxygen and 1 bp(something) of nitric. I guess they never have to leave it just one, but Tacen is stubborn.  His saturation was staying at 99-100 this way! Yay!  Early afternoon his cracked his eyes and grimaced. We were SO excited to see some reaction and movement.
They sucked his mouth and nose and he had great facial movements and grimaces later in the evening. It was obvious he didn't like it! Cade read him a couple stories and could tell that he was moving his eyes and following the book! Cheryl promised him candy and he cracked his eyes for that.
Once I got home this evening Cade called to tell me he opened his eyes all the way! Yay! It's been such a good progressive day! This is just the day we needed after such a rough day yesterday! We are hoping and praying for another good and progressive day tomorrow!
Sunday evening(10/28/12) his lungs were beginning to fill up with fluid. They put him on an oscillator(the last respiratory treatment they could try).  Sunday night was the night we realized he wasn't going to be with us here on earth any longer. He stayed mostly stable through the night and the next day. We had our time with him to snuggle and say our goodbyes. Due to all he swelling around his spinal cord his body couldn't work the way it should and he was having respiratory failure. By Monday evening(10/29/12) we knew we needed to let him go that Heavenly Father needed him and his plan was not for a miracle to happen.  We were able to hold our sweet little boy one last time as they with drew life support and he left his frail body and returned to our Heavenly Father!  We will miss him every day of our lives, but we know he is in the Celestial Kingdom. We know that Heavenly Father has something bigger in store for him.  We know that if we live worthily we can be with him again and raise him during the millennium! We will always miss our sweet little boy!