We're Home!

They finally released Matt from the hospital late this morning. It is such a relief to be back in our home! I am so excited to sleep in my very own bed! Matt seems to be very happy to be here as well. He just looks better when he's not in a hospital bed. He was able to get all cleaned up and has enjoyed the attention of his younger brothers. Will, Nate, and Drew have followed Matt around all day like little puppies. He has been darling to induldge them in games of 'Candy Land' and has even given each brother a gift from his stash he received in the hospital. FYI, if your child has to be hospitalized, the week before Christmas is the time to be there! I think our stuffed animal collection doubled, at least! There was always someone bringing around little gifts or something fun to do. Matt was also able to meet some Hockey players, and we were even there when the Jazz came! Unfortunately, Matt was getting an MRI right at that moment and didn't get to meet the players, but they did take a polaroid photo of themselves in his room and left him an autographed basketball.

Thank you again for all of your prayers and, for those of you close by, your amazing help! My mom had the boys the majority of the time (although Aunt Megan took them the first night so my mom could be at the hospital during surgery) and Grandma received tremendous amounts of help. Dinner was brought in every night, people chauffered Nate and Drew to preschool, our walks were shoveled, countless plates of cookies were provided and consumed, and many other acts of service were given to our family (some that I'm sure I don't even know about!) We are so thankful, and we know we are so blessed to live in a place where neighbors and friends reach out and serve one another. We truly have no idea how we will ever repay you - but we thank you from the bottom of our hearts!

Slowly Stabilizing and out of ICU!

This morning, when Warren and I went in to see Matt, we learned he had just been moved out of ICU! We were pretty thrilled. His sodium stayed in normal ranges and was slowly coming up all night. Woooo-Hooooooo! So, he is back on 'the floor' and seems to be resting well and feeling well. His confusion is a lot better, as is his short term memory.
Right now, we are waiting for him to stabilize while taking his DDAVP. They've been holding that because it further concentrates the urine, and would make the low sodium problem worse. He tends to run high, though, because of his DI, so we need to make sure he is stable on the medications he will be receiving daily at home. He just got his first dose a little while ago, so we'll see what happens. Hopefully all goes well, his body adjusts, and we can go HOME. It feels frusterating and hopeless to be stuck here. I have this child who seems like he feels well, looks well, and isn't hooked up to any moniters or anything. We're anxious to get out of here (not that the cafeteria food isn't great............). ;-)
This morning Primary Children's had an AWESOME little concert in the foyer. Jericho Road performed. It was really incredible to hear their uplifting harmonies in such an intimate setting. We are totally buying some of their music! Afterwards, we went up and met them. Matt really enjoyed their songs - especially Homeless from the Forgotten Carols. That's one of his favorite songs and he was thrilled to hear it performed so well.
Here is a photo of Matt with the group.

Change in plans, disappointment, backslide.

Two days ago, when I wrote my previous post, Matt was FABULOUS. Yesterday......not so much. He was tired and lethargic and, most frightening of all, really confused. He couldn't remember what time of day it was when he woke up, ordering Ramen Noodles at 8:00 a.m. because he thought it was evening. He complained of a more severe headache than he had previously, and just wanted to sleep. Neurosurgery ordered a C/T scan right away because of the confusion and headache and that came back perfect, so it wasn't a problem with excess spinal fluid. That was a relief! Once we started getting labs back, it became clear what the problem was. Matt's sodium was falling - and falling quickly. In the PICU and the first little while on the 'floor' (hospital lingo for a regular hospital room), his sodium was running higher than normal. It's common for kids to have low sodium after brain surgery, and Matt's situation is complicated because of his DI, which makes his sodium difficult to regulate anyhow.

Yesterday evening, when his sodium plummeted 10 points in 4 hours - and fell to a dangerous 124, he was re-admitted to the PICU. He spent last night there and his sodium seems to be stabilizing. It is still quite low, but hasn't fallen anymore. Hopefully he will get moved back to a regular room soon!

In light of this change, and even before the sodium began falling so dangerously low, Dr.Walker had 2nd thoughts about going in for another resection so soon. He decided he wanted Matt to be 100% stable with his DI before another surgery happens. So, it looks like we'll be going back home for Christmas, and having another surgery a little later. Dr.Walker was thinking January. We'll see what actually happens! We know another craniotomy is in Matt's future, but the specifics will need to be worked out. Once again, we appreciate Dr.Walkers caution in regards to our son. It is disappointing to go home without completely getting rid of the tumor, but we will try to be patient! Good things come to those who wait!

Amazing Matthew! Fourth day post-op.

Matt is in a regular room now, and we totally scored! This room has a private bathroom (the ones across the hall are shared), a rocking chair, AND a COUCH that sort of unfolds and creates a bed. It's a big improvement over the sleeper chairs we're used to!:-) Matt has had a great day of resting. He only requested pain medication about 30 minutes ago. I am amazed, once again, at how quickly he recovers from brain surgery, and how little pain is involved. For both dinner last night and lunch this afternoon, he has requested that we take him down to the cafeteria. I think it does him good to get out of his hospital room. Dr.Walker also gave the order to remove his 'brain drain' i.e. External Ventricular Drain, since it's not really putting anything out.
Here's a picture of him about 48 hours after surgery. He's still in ICU here. The amazing blanket was made by our friend in Naperville, Lisa. It's cotton on one side, and minkee on the other, machine quilted with two coordinating fabrics around the edges. Matt sleeps with it every night and I love that it's so cozy and comforting while he's here in the hospital.

Dr.Walker has been in several times to see us to discuss Matt's next surgery. It is going to be on Wednesday, rather than Tuesday. We talked a lot about the potential side effects, and the fact that Dr.Walker doesn't feel like he is going to be able to get out every last bit of tumor. This part of the tumor surrounds a very vascular area that controls large motor function - specifically the legs and feet. Dr.Walker is going to be very cautious around that area, and feels like there will almost certainly be tumor left there. Hopefully, radiation will take care of the rest! for this surgery, he is going to go right through the bony part of Matt's forehead and between the hemispheres of the brain. Dr.Walker says he won't even have to go through any brain tissue since, apparently, the hemispheres will separate during surgery. I think that's AMAZING!

Scans

This is the working of the PICU. Matt was scheduled for scans, 'sometime this morning.' Sometime this morning is actually 1:00 in the afternoon. We finally go down to scans around 1:30. Then, we didn't hear results from Dr.Walker until about 4:30. It's as 'in the morning' as the PICU ever gets! :-) Not that I'm complaining - just explaining so you all don't think I've abandoned you.

I can't believe how much tumor Dr.Walker was able to remove. He really did get out all he could see and cleared out all the most sensitive parts. We feel so incredibly blessed that this was able to happen - and that Matt seems fine! He's still been sleeping a lot. The surgery was right in the hypothalamus and so Dr.Walker feels the extra tiredness is to be expected. Matt has been up and talking. He has enjoyed sitting up and ate dinner (chocolate ice cream first, vegetable soup with crackers second).

Now for the sort of bad/surprising news. Because of the angle Dr.Walker was at during Matt's surgery, there was a portion of tumor that he could not see. You can totally look at the direction he came in, and see why this particular small section would have been invisible. Dr.Walker removed all the difficult parts to remove - in the most sensitive sections of the brain, and he thinks the remaining tumor would be much easier. He wants to go back in...... on Tuesday. He will use the same incision - made just a little larger/longer. It seems like the thing to do. I can't see any advantage to waiting until Matt is all the way healed and back in school to do this again. Dr.Walker likes the idea of the incision being still new and everything being fresh and easier to open up again. I can't even imagine how giddy I will feel knowing Matt is TUMOR FREE! So, this afternoon presented another unexpected turn of events. We'll spend the weekend thinking about this and praying that we are making the right decision for Matt. Dr.Walker will come back on Monday, having discussed things with the other neurosurgeons in his group, and having thought about things, as well. But, it sounded pretty much like another craniotomy will be happening on Tuesday! Oh, and by the way, we explained things to Matt and told him that Dr.Walker wanted to perform another craniotomy. Matt didn't even hesitate to tell us that he agreed. He is very excited, as well, to be able to say he's tumor free!

We heard WORDS!

We are currently in the PICU with a very sleepy Matthew. He's not fully awake from the anesthesia. We have had some encouraging moments, though. He has opened his eyes several times, changed position's while he was sleeping, spit out his manual airway thing, squeezed the nurses fingers with his hands, and pushed against her hands with his feet. The best part, though, was just a moment ago when he said, "I need to go to the bathroom." We're pretty stoked!

This is a bit different than what we've come to expect from our previous two brain surgery experiences. Matt's been awake after every surgery - out of it, but awake. Last time, when I walked in and rubbed his arm and asked him how he was, he replied, "I feel like crud!" This time he is much more deeply asleep and less responsive. Hopefully that means he is comfortable and that the rest is helping his body recover.

I'll update in the morning, probably after his MRI.

We talked to Dr.Walker

3:20 - Dr.Walker just came in to talk to us. He felt very optimistic about the surgery and was able to get out all the tumor he could see! It's hard to explain how cautiously elated we feel at this moment! Dr.Walker said the tumor was farther reaching than he had realized. It went all the way around the 3rd ventricle and down to the very bottom of Matt's brain. Matt will have an MRI tomorrow morning and we can see for sure how much (if any!) of the tumor remains. We're still pretty nervous, as Matt hasn't woken up yet. This means Dr.Walker hasn't performed any neurologic function tests. I can't wait to see him and see for myself how he is doing!

Updates.......

12:00 - The nurse said they had just started. We're not sure exactly what that meant. :-) Ordinarily we receive calls saying they've just opened, then that they've just reached the tumor, then that they're just closing. Based on the next call, we think she meant they had just started the resection (rather than just opening)!

2:45 - We hadn't received any updates, so we had the waiting room nurses call for an update. The nurse said they were just starting to close and Matt should be moved to the PICU in about an hour. She said he had remained very stable throughout the surgery. All of his vital signs had been excellent and he hadn't needed any blood products - all good things! Now we just wait to speak with Dr.Walker and find out exactly how he felt about everything and how much tumor he thinks he was able to remove!

He's in......... now the waiting begins.

We arrived at the hospital at 7:45 this morning (after sleeping at Carolyn's house in Layton last night). Matt's surgery was scheduled for 9:15. We got word shortly after sitting down in the pre-surgery waiting area that they were running a bit late. They finally came in to talke to us, and took him into the OR at about 10:30.

I wanted to thank everyone for putting Matthew on the Temple prayer rolls. I believe in the power of prayer. I know that special blessings come when individuals are prayed for in the Temple. I also believe that it really only takes one temple to receive those blessings! However, it gave Matthew so much comfort and strength when we looked over all the Temples prayer rolls that was on. He got teary when he realized how far reaching his support system really is. Thank you again for your support and love!

I will update again as we receive the telephone updates over the next several hours while he is in surgery!

Request......

Matthew is feeling *really* anxious about his upcoming surgery. Truthfully, I am too, and I think it's rubbing off on him! There are SO MANY unknowns, and so many things that could go wrong - I can't even begin to list all of the potential side effects. I am trying to remain positive. Matt has done remarkably well with his previous two surgeries and has NO side effects from them. Everyone is thrilled with our overwhelmingly positive outcomes. This time feels a little different, though. Dr.Walker is going in for the express purpose of removing as much tumor as he can. He is going in deeper than he has before, and will be closer to those ultra-sensitive parts of Matthew's brain. I was just thinking how cool it would be if we could get Matt's name on as many Temple prayer rolls as possible. I think it would really buoy him up to see that so many people at so many Temples were praying for him multiple times each day. If you feel so inclined, it would mean a lot to our family if you would consider putting him on your local Temple's prayer roll. Then, leave a quick comment letting us know which Temple's prayer roll he is on.

Thank you so much for helping, supporting, and loving Matthew and our family!
Oh, and for those of you who may not know us well, the name for the prayer roll is Matthew Goodworth.

P.S. We've had some questions about exactly where Matthew's tumor is located. If you were able to get right to the center of his brain - about the level of his nose and ears, that's where it is. If you could slice Matt's brain into quarters, the tumor would be right where the 4 pieces would meet.

A tribute to a great Christmas Story!

We bought ourselves our own 'Major Award'! WE think it's hysterical and have a perfect window to display our very own 'leg lamp' (which lives in Warren's office when it's not the holidays.)