It's ABOUT Time!!

Ya, it's definitely about time. About time I posted again and all about time as to why I haven't. Brad and I joke about how before Lainey's birth it seems we had time to keep up with most of our goings on. Now, I'm just lucky to be dressed by noon. Blogging has taken a major back seat.

So, let's see if I can sum up the main highlights of the past few months...

August: the kids went back to school- Yippeeee!! Not that I don't love my kids at home, but 2 1/2 months of hearing "Tyler, stop it!!" starts wearing on my nerves.

Joseph moped around all day when the kids went back to school. His school didn't start till after Labor Day and he just couldn't understand why the other three kids got to go and he didn't. He carried his new gymboree monster lunch box around the whole day and kept saying "school? school?"

September: We had season passes to Disneyland so we went one more time in the middle of September for Joseph- it's his favorite place, mine too.

After returning from Disneyland, Joseph was finally able to start school. He was so excited. I was worried that he might be upset to have me leave him, but it didn't bother him a bit. He attends a special pre-school for developmentally challenged children. Each week, along with the normal pre-school activities, he'll receive speech therapy, physical therapy, and occupational therapy. In just the last month and a half, we have already seen improvement.

One downer to our September Month was on the 23rd. At around 9:45pm, Joseph had a seizure for the first time since his surgery in May. It was quite a doosy. One of those moments that the thought crossed my mind "is this it? Is the Lord going to take him from me?"

It came on slowly and almost in an undetectable fashion, very different from his past seizures. Once we realized he was definitely having a seizure, his sats started to plumit. Brad called 911 and ran to grab our oxygen tank while I prodded Joseph to breathe. By the time I finally got the oxygen mask on him, which was only about a minute but seemed like forever, his sats were below 39- I stopped looking at the monitor when I saw 39 and just focused on getting the mask secure. The paramedics transported him to our nearby ER where they had to intubate him. His seizure was persistent and the only way to stop it was to give a very strong anti-seizure medication. Unfortunately, a side-effect to that medication is respiratory failure. Thus, the reason to intubate. Once he was stable in the ER, Primary Children's LifeFlight team came and picked him up and flew him to PCMC. We spent that night and the next day in the PICU. By the next afternoon, though, Joseph was back to normal- side tracking the nurses and trying to escape down the hall to the exit. We were back home within 24 hrs- I think our shortest stay in the PICU to date.

October: I think the most dreaded month for me out of the whole year. Everyday, all I hear is "what I'm going to be for Halloween ....". My kids change their minds daily as to what they're going to be. Joseph was old enough this year to know what it was all about and he showed me at least 3-4 times a day on the Calendar when Halloween Day was. Thank goodness Lainey is too young to know or care. Other than on Halloween when she thought I was torchering her by making her wear the very warm costume I had purchased. Usually Halloween is cold and nippy but this year it was quite warm. The poor little thing was sweating to death in minutes- she spent most of the night, not wearing her costume.

So, the final outcome: Sam was Wonder Woman, Tyler- some green haired hit man(not pictured because I couldn't find him to do so- he got dressed and left before I had a chance to take a picture and by the time I picked him up to come home, I was too tired to care about another picture- sorry Ty, your 2009 Halloween is undocumented), William was Darth Mall, Joseph-Super Mario, and Lainey, a darling pink butterfly.

For Deyton

It's been a little over a month since my last post and all has been well for Joseph and our family. We've felt rather normal this past month which is an awesome feeling!! All looked well at Joseph's last cardiology appointment. His cardiologist adjusted a few of his meds and took him off his daytime oxygen but was cautious. As he put it, since Joseph doesn't "play by the rules", we need to watch him carefully. Joseph has never played by the rules. He should have died at birth, but lived. He died for a short time at 3 months, but came back. After the cardiac arrest, his heart shouldn't have been strong enough to receive his second open-heart, but it was. I could go on and on- Joseph doesn't play by the world's rules, he plays by the Lord's.
Joe has been a regular 4-year old these past few weeks, time-out's and all. I never thought I would ever have to give my sweet, little, darling boy a time-out but I'm grateful that he's here and needs a time-0ut every once in while. We joke and say "well, now he's a 'real' boy".
So... we are good, thank you for all your prayers.
I would like to tell you about another heart that has been occupying my emotions lately. His name is Deyton Kash Sorensen. He was born on July 21st in St.George, UT to Derek and Krystal Sorensen. Deyton is their first child and they didn't know before his birth that he had Hypoplastic Left Heart Syndrome. So... soon after birth, he was life-flighted to PCMC where he was diagnosed. Because his heart had more wrong with it then just the HLHS, surgery was not an option. His parents were faced with the decision of letting him go or waiting for a heart transplant. They fasted and prayed and made the very difficult choice to let him go back to Heavenly Father. There couldn't be a more difficult choice for two parents to make.
The Sorensen's are in my parent's ward and my dad is their Bishop. My mom called me on Saturday to let me know about Deyton and his situation. Although I have never met this family, I felt as if I knew them. I cried several times that day as I spoke with my mom and then later Brad. It's strange to not know someone but feel so connected because we know exactly what they're going through. On Sunday, I was at church and at about 11:15, got up to take my fussy baby out of relief society. I walked through the halls for a few minutes and then stopped in the foyer to sit down. I was overcome with emotion- so much that I had to leave the building and walk outside. I couldn't control my sobs and I had no idea why I was crying with such hurt in my heart. I held my little Lainey tight for comfort and my mind raced to search for the purpose in my cries. I thought of Joseph but peace came to my heart that all was well with him. So then I went through each one of my children in my mind to see how I felt. I knew my family was fine. Then I thought of Deyton. I knew it was for him that my heart was full. I continued to sob knowing the hurt that his sweet parents were feeling. I later found out that he had passed away just moments prior to all of this happening to me. It's so amazing how the spirit works.
Please pray for their comfort in this difficult time. Deyton's funeral was on Wednesday. I wasn't able to attend but heard the details about the wonderful service. I know the Lord's spirit is with them and will get them through this trial. If you'd like to read more about Deyton, visit his blog at http://babydeyton.blogspot.com/
I want to express my love for his family and let them know that our prayers are with them.

BACK TO CHAOS

AND THEN SOME!!!!

I have been trying to find the time to create another post on Joseph's blog for weeks now. It's been three weeks tomorrow since he was released from the hospital. I opened one of the billing statements today- now brace yourselves! - and mind the fact that this statement only includes the hospital (ie. room and board, use of equipment, medicine, etc.) It does not include any

professional charges(surgeon, anesthesiologist, nurses, cardiologists, pediatricians, ICU specialists, and so on and on and on...) The statement charges were over $88,000- YIKES!!

Though this is nothing in comparison to the overall figure. After Joseph's 2nd surgery, I stopped adding up the billing statement figures once I passed $1,000,000.00. By the time Joseph is grown, He will literally be the "Two Million Dollar Man".

So, here's an update... Joseph's X-ray looked good. No fluid around his heart and lungs. The professionals attribute that success to diuretics- and... it does deserve some credit- but, for me, I'd like to thank the Lord - he's the one that keeps our Joseph going. He's the one that blesses those that work on him to be so gifted. At any time, if it was his will, all could change. We know this, but we also know that we must have faith and ask for the Lord to bless his heart that it will continue forever. So... we ask for the greatest blessings possible knowing that the Lord will grant our petitions if it is the plan for Joseph and our family.

At Joseph's last cardiology visit, he was able to remove daytime oxygen. So, we went to Chuck-E-Cheese to celebrate. It was the highlight of Joseph's week- he talked about it for days.-you'd think we went to Disneyland or something- oh, the pleasures of a young heart.

Also, here's some pictures of us with my brother, Elder Jordan Wood. He returned home from his mission for a short time because of a back injury. Please pray for him. As soon as his back is in better sorts, he can go back to serving the Lord as an LDS missionary in Chihuahua, Mexico. These pics were taken at Carl's Jr. He had a layover in Salt Lake, before heading to St. George.

One more thing... I'd like to thank everyone who's shared their love and kindness with us. The meals, phone calls, notes, and occasional gifts have been so appreciated- truly. Thank you so much for thinking of us- we love you all.

Recently, Brad's sister's husband's grandmother- whom we have never met- sent some gifts for Joseph and our family. The bag of surprises came from Travis's grandmother, Marian Heinz, who lives in Ogden, and her sister, Jean, from England. First of all, the kids loved the presents, especially the SpongeBob Connect 4 game, it was Joseph's favorite. But mostly, I just think it's amazing that people we have never met are sending us gifts to let us know they are thinking of Joseph- it touches me so much. Thank you, Marian and Jean. for your kindness and love. And thank you to everyone- neighbors, ward members, and family who have been calling to check on us, bring us meals, and taking care of our other children. We could never manage through such an event without you. And... I know that the Lord will bless you because of your unselfish service.

I couldn't end without showing you a picture of the cutest baby ever!!!!!!!!!!!!!!!!!!!!!!!!!

Another X-ray

We made a return visit to PCMC today for more lab work and another chest x-ray. Joseph has some fluid around his heart. His surgeon wanted to give him an additional diuretic to see if that will do the trick before admitting him back into the hospital and putting another chest tube in.
We have another appointment on Tuesday to see if the diuretic works. Please pray for him on fast Sunday. We love you all - thanks

We Did It! We Did It! Ya,Ya, Ya- no eating here tonight, no eating here tonight

That's Joe's favorite ditty from Finding Nemo. I felt it was appropriate for today's post. On Monday morning, the cardiology team came in and said that all looked good on Joe's chest X-ray, but they wanted to watch him for one more day just to be safe. Joe had a hard time staying in bed on Monday and was more than ready to leave on Tuesday morning.

It is good to be home:) We feel so blessed.

Tomorrow Came!!!!

WELL... it finally happened. The tube was removed today. Yes... it hurt... alot. Joseph was tough, though, and very relieved when it was all over. It's important that his body rid itself of the fluid build-up, otherwise another tube would need to be placed for drainage. This is where the Lord's medicine really counts. Joseph received a blessing tonight from his Grandpa Shields. Heavenly Father has carried our little Joseph's heart in his hands for 4 1/2 years and I know he will continue. When it comes to trials, this has been a doosy, but I wouldn't trade it for anything. It has made our faith stronger, our testimonies greater, and our family closer. The Lord has given us something greater than a miracle. He has blessed us with a gift that allows us to, everyday, live for the eternal goal. A goal that is easy to loose sight of in this world. The Savior didn't just atone for our sins, he atoned for our pain, our loneliness, our inability to cope. He's there to carry us through our trials, no matter how difficult they may seem. Weakness brings us to our knees and closer to Him that loves us most.

Tomorrow, Tomorrow, Tomorrow

That seems to be the most common saying in Joseph's room these days: "maybe tomorrow"
He still didn't get the chest tube out today. I asked for an increase in his pain relief. Every 3hrs he gets either Motrin or Lortab. This has made his day much more comfortable, he was even able to get up and walk down the hall without crying out in pain. It's crazy.... they can't take out his chest tube but then they ask if I'm getting him up to move around- sure, no pain in that activity : big giant tube hanging, with no support, just a few stitches, out of a little skinny 4 year old chest. I didn't take any pictures of that, but I think I will, just to show how strong Joe is being. He really wanted to go outside today, so we did. Then, once outside, he wanted to go to the car. It wasn't the greatest reaction. I think everyone around us thought we were torchering our poor, sweet, sick child by exposing him to a trip outdoors. We were much more thoughtful about the places we decided to go on the next walk about. It seems the vending machine is a good destination, with a built-in reward. He can't get too upset when he's walking back to his room with CHeeTos in hand.
So.... like I said yesterday... maybe TOMORROW he'll get his chest tube out so we can go home.
I have to look on the positive side: at least it's not 6 weeks of Tomorrow's like it was after his cardiac arrest. I know reading a blog without photos is rather boring, so, sorry about that but I usually don't get to posting until rather late. But don't worry, I'll have some pictures to post TOMORROW.

Well....? I didn't post anything last night because I was in hopes to have good news today and be able to post that instead of the same old stuff. But, unfortunately, Joseph had more chest tube output yesterday than even the day before. Mainly because all his IV diuretics were converted to oral and they're just not as strong so more fluid built up around his heart that had to be drained through the tube. The hardest part now is watching how miserable the tube makes Joseph. He has to get round the clock scheduled Lortab and sometimes a little morphine to deal.
I'm really praying that he can get it out tomorrow. Other than that, all is going pretty good. The doctors have asked that he gets up and walk at least three times a day, even despite the chest tube, so that he doesn't get too much build up in his lungs that may turn into pneumonia. The walking gets him coughing which clears out all the junk. Plus, his muscles and bowels really need the movement.
We have decided that Joseph has Chuck E Cheese OCD. He asks about every 15 min.(sometimes less) if we're going to Chuck E Cheeses- only he uses a special sign that he made up to mean Chuck E Cheese. My answer is always the same "we'll go to Cheese's when Joey's better". This satisfies him until he asks again 10min. later. I figure it must set his mind at ease to ask and be reassured that eventually he'll be out of the hospital and can do something fun.
It's a good thing all his longer hospital stays happened when he was a baby and didn't have any concept of time otherwise they may have needed to give us both morphine.
Say a prayer for us, they're always the best medicine.

Thanks so much for all your thoughts and prayers. I am so glad so many of you have taken the time to look at Joe's Blog. Your emails of love and support keep me going.
Joseph is doing well- baby steps, but still progressing forward. His only complaint has been the 1/2 inch chest tube inserted at the base of his sternum. It has started to become quite irritated. Normally, in most cases, they don't have to leave it in so long but because Joseph's Fontan conduit does not have fenestration, fluid has accumulated more heavily around his heart and lungs than the typical Fontan patient. So... his chest tube must stay in until the output is mild enough that it can be just expelled as urine instead of being directly drained. He's so strong, though, and bear's the pain rather well. We've upped his oral pain meds to make him more comfortable. Today, he asked to go to Chuck-E-Cheese about five times.

(i'm no longer receiving the silent treatment)

I expect it may be a few more days before the chest tube can come out but once that happens, the light at the end of the tunnel will be in view. As soon as that time comes, for us to go home, Chuck-E-Cheese will have to be the first stop.

Things are going well here in room 3086. Joe's potassium levels rebounded today but his sodium is still down a bit. They discontinued an IV diuretic and increased one of his oral diuretics. The hope is that his body will release the fluids but not as much sodium since an oral diuretic is not as strong as one given in IV form. So, we'll see tomorrow if the plan works.

Chest tube #2 was removed this morning- just one more, but it's the big one so I'm hopeful that they'll be able to take it out by Thursday. I'm also hopeful that we can be home by the first of next week. What a feeling it will be to go home knowing that we don't have to think about one more surgery. We just need to pray that the Lord will strengthen Joseph's heart so that it can last until another medical advancement is made. I just read today that medical advancements are being made each year that help extend the life expectancy of single ventricle heart patients. The Lord's design's will be realized in one way or another. Our faith is strong and we know that Joseph is here for a reason regardless of whether it be for 5 years or fifty.

This morning, when Joseph's surgeon, Dr. Kouretas, visited, I explained to Joseph who he is and that he was the one who operated on his heart to make it better. When Dr. Kouretas was ready to leave, I asked Joseph to tell him "thank you". Joseph signed and said "thank you." I don't think Dr. Kouretas was expecting anything since he knew that Joseph has been envolking his right to remain silence. I could tell that it thrilled Dr. Kouretas that Joseph broke his vow of silence to say thank you. It thrilled me too.

Life on the 3rd Floor

Joseph was released from the ICU yesterday. He is doing well. One chest tube was removed yesterday - one down, two to go. He is still giving me the silent treatment. I don't blame him - I'd be mad too if one minute I was running around and the next I woke up in a hospital bed with my chest cut open, hooked up to all sorts of machines and a tube down my throat. I'm sure once his tubes are out and he can move more freely, his mood will improve. Our only minor concern right now is with his potassium and sodium levels. They're a little lower than they should be but we're trying all sorts of horrible tricks to try and raise them: like hiding salt pellets in food- poor little boy, he'll never trust his mom again when she offers him chocolate ice cream. Needless to say, it didn't work anyway. Instead of swallowing the salt pellets whole inside the ice cream, he started chomping on them, like they were almonds or something. Soon after, of course, those few bites of ice cream made their way out the same way they went in.

So... since I'm sitting around all day, I thought I would create a blog for Joseph. Sometimes... it's really nice to have nothing to do but sit in one spot for only one reason- it gives a lot a great time for thinking and doing some of the things we have been wanting to do for awhile. I hope you enjoy those moments too, hopefully they won't have to be done in a hospital.

Brad, Will, and Lainey came to visit today, along with Brad's brother Lance and his wife Jamee. Joseph still refused to break his code of silence and Lainey seems to be a bit mad at me as well, I just can't win. Luckily, she's only 3months old so as fast as she decides to be mad, she forgets. Plus, she's so good natured that I don't think she'll ever be much of a grudge holder.

If you know of any foods high in sodium and potassium, besides bananas and pretzels, let me know.

Good Night

here's a few photos from the day's past:

day 1: just a few hours after surgery

day 2: no ventilator

day 3: looking better

day 4: sitting in a chair but not happy about it