To Grace We Go

The best news we have heard in such a long time it seems.....we got to leave the hospital! It came with definite joy but also a bit of anxiety since he needs a lot of meds including sodium every four hours, antibiotics through a PICC line, anti seizure medicine and on and on. So, I am pretty much his home nurse for the time being, which is why it is a bit scary cause I don't want to mess up. But we do have regular appointments set up in Pocatello with the doc that saw him on Christmas. He was such a good doctor, and he definitely saved his life that night. He barely left his crib the entire night. He would just sit there and stare at the monitors and would even just go over to hold Grady's hand or let him suck his finger. What an exceptional doctor. So, basically he is in great hands...and always has been. We have seen so many tender mercies. Hopefully all goes well so we can join my lonely hub in Montana soon. A MILLION thank you's for all of you who has been praying and fasting for little Grady to pull through. Thank you for your support and love. We couldn't have made it through the last month and what lies ahead without you all.

PS . if you have tried to call our cell phone, our plan expired on the 12th so we have to get a new phone soon....sorry to leave you hanging Amy! :)

First Outing

Today Grady had his first outing! He got to attend church...which is just down the hall and is a half an hour long. He did very well and seemed so glad to get out of the room with the same scenery. Church at Primary Childrens is wonderful. They have a musical number and a speaker. Today he talked about truly trusting in the Lord. I have had a lot feelings about trusting in the Lord lately, as well as pretty much everyone in attendance so there was such a special spirit there. It is easy to ponder on eternal things there and the spirit is so strong. They actually have a branch president over primary children's hospital just in case anyone needs anything at all. He has a counselor and the hospital is even dedicated....All very cool things. Not much else in Grady news. His sodium levels go up and down and nothing seems to be getting them clear up to the 140's like they want. But we get a whole slew of new docs tomorrow since it is shift change pretty much every two weeks. The entire team is passing the torch to a whole new set. Crazy. So we will see what the new plan of action will be. Tonight I had a mini roommate reunion. Kim and Sara, my roommates from college, brought a homecooked roast dinner and chocolate cake. Sara even brought a table cloth. It was so sweet and good to keep our minds occupied with things other than all hospital talk. More random pics for your viewing pleasure.

I thought I would document our first outing to church. He is all ready and excited. Doesn't he look it?

Grady is out like a light, mouth open and the works. Also, take notice of the pj's, "Center of Mommy's universe" I point it out because the tech picked it out and the nurse made sure to let her know over and over how ridiculously cheesy it is and he shouldn't be subjected to wear it. It was quite funny. (and yes a bit cheesy too)

Sucking on the ole fist. It is great to see him doing the little things that are often taken for granted.

Still Here

Well, we are still here at Primary Children's. Grady had some more seizure activity where this time he would stop breathing and his lips would literally turn blue. Eli and I got pretty good at running to the crib and getting the oxygen to blow in his face until he started breathing again. One time the resident doctor was there when it happened and what did she do? She pulled out her stethoscope and kept saying "well, his heart rate is normal. " Are you joking lady? You pushed me out of the way to say that. Eli told her "Yeah, but his lips are blue!" I wonder if she realized that it would drop drastically if he didn't get oxygen! What a lamo. I guess they don't teach common sense in medical school. The Neuro surgeon said that us bumping his seizure medicine dose to the evening, creating a lapse, and his low sodium levels caused the episodes. They call it Cerebral Salt Wasting where his brain is telling his kidneys to get rid of all of his sodium. They have to regulate it very carefully so it doesn't get too high or too low too fast or it could cause more siezures. They have upped his oral sodium to 1 1/2 teaspoons. The only thing I can think that it tastes like is straight ocean water. Poor kid. He has to have it every four hours and just gags and chokes it down. Sometimes I have to wonder if the doctors even have a plan at all. We keep getting different answers and opinions and it gets pretty frustrating. Eli left this morning to go to Grace to see Axel for a couple of days at least before he heads to Montana on Monday to start his master's degree. Then our little family will be spread out over three states..Eli in Montana, Axel in Idaho, and Grady and I in Utah. Oh the craziness life brings. Well, like Niel says, "in the scriptures it says, and it came to pass, not it came to stay." That is good advice that helps keep us going.


Food...finally after a 28 hour fast. He gulped it down.

There is our little Grady. He is looking more and more like himself.

The upward climb

So, things seem to be looking up. Grady's inflammation marker is actually in the single digits which is fantastic. Now, his sodium levels are SKEEwampus! What does this mean? More tests of course. At least they aren't invasive tests like more spinal taps, just lots and lots of blood draws...and lots of fasting, the poor fellow. He couldn't eat last night for 18 hours and I fed him at 8 am this morning before they could tell me to not feed him again for a few more hours. They said only a couple more, but I knew better. I said it would probably end up being 12 hours....well, it will be closer to 24 hours before this little guy can eat again. At least they have him on fluids, but it doesn't stop the tummy growling. For all you out there interested in knowing how awesome Grady is, He is now potty trained at two months. :) They needed a urine sample twice now and both times we got him to pee in a cup! The nurse came in and gave him the ultimatum...she says, "Okay, little man you need to pee in this cup cause if you don't then...well..it involves tubes in a place you don't want it...so trust me and just pee in the cup" After much dilligence and trying every trick in the book (including sticking his little fist in warm water..which does not work) he finally peed when they put a warm pack on his foot to draw blood. So, the second time they needed pee, out came the warm pack and seconds later the cup was filled and my shirt was sprayed! :) So, the waiting game continues but he is looking more and more like our little Grady. Here are some updated pics.

Check out the monk doo. You would think they would have shaved at least all of the front.

He loved lounging in the tub. Eli was narrating for him so it was hilarious! and his first real bath in weeks. They were able to clean up all of his chin cheese.

His first onesie in weeks instead of nudy. No temperatures in almost 4 days, so now he can wear some clothes. What is that like?

Just chillin out with his feet up!

Finally the photos

Grady's One Month Snapshot

His tiny hospital gown in Portneuf. This is when he was finally able to get a good night's sleep after being awake screaming for over 24 hours. Luckily, his anti-seizure medicine took the edge off enough that it was lights out.

His first interactions where he was focusing and cooing. What refreshing sounds. He was just loving sunshine.

It's safe to say he hated the feeding tube and kept trying to rip it out. I don't blame him.

The life flight stretcher from Portneuf to Primary Children's Hospital. Those guys were great. They even gave him a fleece blanket for the ride.

Our first stay at Primary Childrens. We thought it would be the Ritz compared to Portneuf. We quickly discovered it is the Ritz in regards to Doctors and medical technology but not in accommodations. They had a single chair bed that is much smaller than a twin. Eli is gracefully posing on it to show how "roomie" it is. Lets just say we found a new meaning for the word spooning as we both slept in it for two nights.

He was enjoying his first couple nights in Primary Children's.

After his first hair cut and first fluid drain.

Can anyone disagree that he looks completely content and comfortable?

And now for the second brain drain. A bit more invasive than a needle stick like before. They took off the frontal bone and flushed 4 liters of water through there to hopefully clean out all the infection. Then stitched him back up. He looks like a mixture of frankenstein and rocky. :) Poor little foo.

Here's Rocky. The swelling has gotten so much better. He's gained more than a pound in just fluid and swelling. So here he is. He doesn't even look like the same little boy from Christmas. Hopefully sometime soon he will be back to his old self.

An Eternal Perspective

Well, I guess we need to update everyone on what is going on. I wish that I had some good news but to be honest, I don't. Yesterday they did a MRI on Grady and found out that the infection had gotten a lot worse. They said that it was starting to push onto the left temporal lobe of the brain and recommended an risky surgery. I can't remember the name of it, but basically they remove the frontal portion of his skull so they can expose the brain enough to wash out the fluid and infection. I know that it sounds crazy and after Velvet and I had a good cry we went to the waiting room to here how it went. The doctors told us that it went pretty well and they got out all the infection that they could. The poor kid is all swelled up and has some stitches running across his head. We took some pictures but forgot the cord to download them onto the computer. But take it from me, you probably don't want to see them. My mom and dad came down to give us some much needed moral support and we've talked with them for some time about all the outcomes that could occur. Basically he will make it or he will die. I wish that I could tell you that they are leaning toward making it but I just finished talking to the doctors yet again and they leveled with me and told me that everyone of them is very worried that the infection is still here. He said that we are far from out of the woods yet. I'm torn really. There are times when I feel that no matter what happens everything will be ok because I know that everything that happens to us is for our good. But then I hear him cry and I think of all the times that Velvet has held him and he's has looked up at us with that Bambi look on his face and Velvet says "You are so Cute!" And I think about how we have trained Axel to lift up his head and say "Grady" every time Grady cries and he then runs into his room to give him his binky and give him a kiss. When I think of things like that I don't know if I can stand having him gone and I realize how strong the Pioneers had to have been to cross the plains and bury their children as they came. I think we are reaching a very pivotal moment in our lives, where we can either ask "why?" or "what can I learn from this?" We were reading our scriptures last night and we came to this "For the natural man is an enemy to God and has been since the fall of Adam. this scripture says that we must be willing to submit to everything that the Lord sees fit to inflict upon us. I must admit that I have not been submitting willingly. It seems that every time something has gone wrong I have asked "Please, don't let it get worse. I can't take it anymore." Basically I'm asking that it be the Lord's will, but I would rather it be mine. There is still a chance that Grady can pull through but I think that we might have to prepare ourselves for the worst. Now, that being said would that be so bad? He is a part of our family no matter what because we have been sealed in the Temple. We won't loose him. And the best part is that he won't have to go through grade school. He wouldn't have to have take the ACT. He wouldn't have to struggle with addictions of any kind. President Kimball once spoke of how dangerous fearing death can be. He said that to fear death is to say that this life is preferable to that of the spirit world. I know that if Heavenly Father needs him more on the other side then it is better that he go. No matter how much we would miss him! I hope that you don't think that I'm morbid or unfeeling. I'm not. I love my little boy and I want to take him fishing, and I want to teach him how to ride a snowmobile. And I want to take him to priesthood meeting and to fix my jeep together. I don't want him to leave! I'm just trying to obtain an eternal perspective because I know that is the only way Velvet and I can get through this. Thank you all for your prayers on Grady's benefit. I don't know what we would do without our friends and family. And remember that he still might make it! God lives and Jesus Christ is leading his church today both by leading the Prophet and each individual! That is my testimony.

The update

Well, things are still headed in the right direction. The doc said Grady still isn't out of the woods yet and we saw that when he spiked a fever of almost 104 today. It is discouraging but gee whiz this little guy has been through a lot just in the last two days with his surgery, drastic haircut :( and sedating him to put in a PICC line (which is almost the 10th attempt in his arm and they finally got it :) he looks like a druggie with all the pokes in his poor arms) So, hopefully it is just his body dealing with all this stress and not the alternative cause which would be more fluid, another infection or something unknown which would result in lots more tests. Only time will tell which is the poopy part. Someday this nightmare will be over but for now just more waiting and hoping. Thanks again for all your thoughts and prayers. It is what's keeping us and him going.

Good News!

We found out that Grady's crp test came back a little lower. We were so glad to hear that, let me tell you. The fluid in his head was a little greater however and they decided that the best thing to do was to go ahead and perform the surgury to remove it. They just finished the opporation and it was a big success. Now we just need the antibiotic to finish it's job so we can go home! I wanted to thank everyone that fasted and prayed and thought about us. We owe you so much!

Fast for Grady

Ok. In case everyone doesn't know, we are now at Primary Children's Hospital in SLC. They found out that Grady still has a little fluid accumulating in the frontal lobe of his brain. They perform crp tests to see the level of infection. If the crp is low then that means the infection is going away, if not then they will have to surgically remove the fluid. So, since tommorrow is fast Sunday, we are having a fast for him. Tommorow we will find out if they will perform surgury or not so if you could again remember us in your prayers and if you would like to fast as well we would appreciate that also. Thank you so much for all you have done for us.