Wow... how time flies!

Ok, so I realize that I have not posted anything in almost 2 months. I am back to being a blogging loser. I will try to do a quick recap of the last 2 months and what's been going on here.

Yesterday Alex had his check-up with Dr. Puchalski (his cardiologist) at Primary Childrens. Can you believe that tomorrow (Wed 26th) marks 9 weeks since Alex had his surgery, yeah, neither can I!  He was actually excited to go, I think mostly to see the fish. They have fake fish by the elevator that look like they're swimming which he loves, and real fish outside in a pond. The trip is not complete without a stop at both of these places.

Dr. Puchalski was thrilled with his progress. His chest x-ray had improved from the last one he had at his 2 week post-op check. This allowed us to decrease his medication to once a day instead of twice. His oxygen saturations on room air were 92%. Before he had this surgery only half of the blood in his body was being oxygenated, so his sats on room air were about 80-83% on average, and even lower during activity. 92% is a huge improvement for him. He no longer has to wear his oxygen at night (YAY!) and his weight is up to 36.6 pounds, which is almost a four pound weight gain since surgery. This kid is a rockstar!

So the plan.... we will keep him on Lasix once a day for the next couple of weeks and then take him off of it. If there is any swelling or other issues that arise, he will go back on it. Otherwise, we will go back in 6 months, yep you read it right, 6 months! He is such an amazing little boy! He has truly been blessed by your prayers. My heart is once again so full of gratitude to my Heavenly Father for the outpouring of love and great blessings that have been sent our way. Thank you to each of you for continuing to pray for Alex. Your humble prayers have been answered, and it is evidenced in his well being. Thank you!

Here are a few pics from the Dr. appt.

So you probably wonder why I haven't posted anything if we're not up to much. Well, in all honesty, I've been using all of my "computer time" looking for one of these:

Welcome the newest member of our family "Jay" as my friend Tiffany calls it. We have wanted one for a LONG time, and decided that why not just do it now? We actually got a great deal on it since it's end of season and nobody is buying right now. We looked at lots of trailers new and used and decided to go with this one. It is a 2007 Jayco 27 ft bunkhouse. The boys love it! Our first really exciting camping trip was right in our own driveway. Sweet huh?

We did get to go to Rockport last weekend for an overnight trip and we are going this weekend to Antelope Island for their buffalo round-up and staying overnight. Next year will be full of longer and more exciting camping trips for sure! Rockport was a bit chilly.... or a lot, but it was oh so toasty in the trailer! Gary's brother Garth, his wife Tara and their daughter Megan came with us to Rockport. It was fun to have them there.



We are so grateful to my brothers and all of the time and advice that they offered to us in helping us get this trailer. They each have their own trailer and are our go-to guys for trailer info. Thanks Michael and Ryan! We're excited to join you on your trips next summer!

We've also been to the pumpkin patch, drove to Monte Cristo to see the fall leaves, Gary and Sam went on the deer hunt with my family, and a father and sons campout with the ward. I got to go with Sam on his "nature walk" for school, and lots of other little non-exciting things that everyday life involves. I wish that I had time to put all of the pictures up from each of these things, but as it happens, I have laundry, dishes and a dinner to cook all waiting for me. How boring. I hope that life finds each of you well. Thank you for checking in on us and again for your continued prayers for our family. Here are a few pics of the above listed that will have to do. ;)

Have a great day!

2 Week Post-op Check-up

I must truly say today that my cup runneth over. There are no other words to describe my feelings except for that.

It is officially 2 weeks ago today that Alex went into the hospital for his open heart surgery, to have his Fontan procedure. Saying that I'm happy to be on this side of it now is a HUGE understatement.

Alex's x-ray was much improved today. So much so that he was taken off of one of his diuretics, his other one is changed to twice a day and he can be without oxygen during the day. He will still wear it at night, but can be without his leash during the day. We will go back to see his cardiologist on October 24th and have another x-ray. We pray that there will not be any fluid build up between now and then. It's hard to guess which kids will have this fluid return and who won't, so it's just a watching game for now. They were very pleased with how good he looks, and gave him a big thumbs up! Way to go Alex!

I have been blessed with 2 amazing children. Sam, with understanding beyond his years, has been a rock throughout all of this. He never ceases to amaze me with his ablility to adapt and accept the changes and responsibilities of being a big brother to a sibling with health issues. This time has been just as hard on Sam as it has on Alex, just in different ways. Sometimes I think it's been harder on Sam, only because he understands more than Alex. During the time leading up to surgery, Sam had a lot of anxiety and worry and stress. He handled it like a champ and has been a huge support to Alex through all of it. Thank you Sam for being the good boy that you are, and for the continual example that you are to us.

Alex truly is our miracle boy. He has taught us so many lessons of faith, endurance, strength and love. He has been through so much physical pain and adjusting to limitations, even though most have been temporary, he still comes through with a smile on his face and a spring in his step. He has never let anything slow him down. He is our little energizer bunny, and days when I am ready to pull my hair out because I can't keep up with him, I will look back on this and count my many blessings.

My heart is overflowing with love and gratitude for all of you who have fasted and prayed for Alex and our family. I have to say again, that I know prayers are answered. We are never left alone. I'm grateful for the guardian angels who have never left his side. I am grateful for the many angels on this earth whom I am priviledged to know. We have the most amazing family, friends and ward! We would be lost without each of you. We have felt so much love from so many people. Your "small" acts of kindness are not that at all. They are huge. They are what gives us strength. The thought was brought up in church on Sunday that we need each other, we have been sent here to strengthen and support each other. I absolutely agree with that and am grateful to my Heavenly Father for sending you my way.

My thoughts are with one of the boys in our support group who had his Fontan the day after Alex. His name is Alex as well, and he is such a darling little boy. He has hit a bump on his road to recovery, and we continue to pray for him. We know that all will be well soon.

Thank you again! Have a great day!

Follow up appt.

I just realized that I hadn't been on the computer all day, and hadn't posted anything about Alex's appointment today. Sorry for those who have checked and found nothing!

He woke up SUPER grumpy today! He did not want to go to the hospital for his x-ray (can you blame him?). "I don't want to go for my x-ray right now." That was all we heard until we got out the door. Once we pulled into the parking garage at PCMC he perked right up and wanted to walk. "I want to walk in the hospital not ride in my stroller"..... well good for you, so he walked, and walked and walked. Even being a week post-op he seemed to have more stamina than before surgery. I'm afraid our stroller riding days are coming to an end soon. That kid has lived in his stroller when we go places. He has lots of energy but would wear out fast, then he would want held. He also would ride in it everytime we'd go grocery shopping, I have a thing with putting him in a shopping cart! :) It was really nice to see him go today and not poop out.

We saw Dr. Puchalski, and Annie, the Nurse Practitioner with surgery. They both said that his x-ray was "stable", meaning that there isn't any improvement or any worsening of fluid. There are not any pleural effusions (fluid around the lungs which causes them to not be able to expand with breathing), which is great! There is however fluid on his lungs that he needs to clear. They have left him on his Lasix (diruetic) 3 times a day, and added a second diuretic to help him try to clear that fluid out. With increased diuretic, movement and coughing he should be able to clear it out. His oxygen saturations are running in the low 90's with him still on 1/4 liter of oxygen.

Dr. Puchalski is thrilled with how he looks. He really is improving everyday. He has seemed to turn a corner today especially. He was super ornery this morning, but after lots of walking at the hospital, and a nap this afternoon he woke up as the happiest kid on earth. He was playing and laughing, like he has been, but didn't get grumpy this evening. I know that your prayers and faith are whats keeping him going.

I am amazed at the continued support and outpouring of love from all of those around us. Just when I think nobody can do more to help us, someone else shows up and does more. My heart is so full of gratitude for each of you and your kindness. Thank you!

I will post more later on this week and include pictures. Have a great night!

Life at home....

We are surviving here at home. Gary was on night duty last night for the first night home, and it was a bit of a rough one. Alex didn't sleep very well at all. He was fussing with his oxygen, wanting drink after drink and just not resting well at all.

Gary was so sweet and let me sleep the whole night. It felt great to get 7 hours of sleep all in a row! Thank you Gary for letting me rest, even though today was your birthday and you should've been the one sleeping.

Today Alex didn't do a whole lot, which is perfect. We played with Mr. Potato Head, colored, watched t.v., watched more t.v., and he wanted outside so bad. Our backyard is sunny all day until about 6:00, so instead of playing out back, we went out front and blew bubbles and caught potato bugs in the shade. The backyard is torture for him anyway, all he wants to do is play on the swingset, play in the sandbox, jump on the trampoline and swing. We did give in and let him swing, just not how he normally swings. That's a little rough for a fresh sternal incision!

He is being really good about his oxygen. He is on a 150 foot leash and has learned to turn around and yank it when it gets stuck. It's amazing how adaptable kids are. I just feel bad when he's walking and all of the sudden gets pulled back. I can tell when it happens because I hear "UGH" and then see it get yanked. Funny kid.

His appetite is about back to "normal" and he is eating pretty much everything. During his hospital stay he lost just under a half of pound, which is outstanding! I am so glad that we don't have to make up much ground on his weight. Dr. Kaza (his surgeon) wanted to know what our secret was to him looking so healthy and putting on the weight that he had. When I told him it was force feeding, he laughed. After my  family vouched for me, I think he believed it. I have spent SO many hours at the table with Alex, and saying SO many hours is an understatement. I literally feel like I spend the majority of my day feeding that kid. After hearing Dr. Kaza say that, it made all of those hours worth it!

We are grateful for the continued prayers that are offered in his behalf. Even though we are home, we are far from being back to normal. He still has a long road of recovery ahead of him. We are so happy to be doing it at home, in our own beds and own element. He will be restricted on his physical activity for the next 6 weeks, but I'm not sure I can keep him down that long! So thank you to those of you who are still praying. Those prayers are still needed and very much appreciated!

We are very aware of our Heavenly Father's hand in Alex's recovery. We know that He is watching over all. This little boy is a miracle. We are grateful for all of the miracles that we have witnessed and been able to be a part of. Prayers are answered, miracles still happen!

Our computer still isn't fixed, so I can't edit pictures. Here are some that we've taken over the last couple of days.

Walking out to the car to come home:

Taming his leash:

Getting outside and being silly:

Have a great night! We go in on Wednesday morning for his chest x-ray and quick check from the CardioThoracic Nurse Practitioner. I will update when we get the news from that. We continue to pray for no fluid around his lungs and continued speedy recovery.





Can you believe it?

Best birthday present EVER for dad! We all get to be home together for his birthday tomorrow.

Happy Birthday Daddy!



MIRACLES HAPPEN!!

My apologies....

To those of you who have been checking for updates today, I'm sorry. This is the first time all day that I have touched the computer. We've been pretty busy most of the day. It sort of went like this:

4:00 a.m.: blood draw
5:30 a.m.: chest x-ray
8:00 a.m.: new nurse came in
8:45 a.m.: doctors rounding
9:15 a.m.: last 2 chest tubes pulled
9:20 a.m.: a very happy, and energetic Alex
9:45 a.m.: breakfast for Alex (egg, pancake, yogurt and chocolate milk)
12:25 p.m.: down to cardiology for an echo
1-1:45 p.m.: playtime in toy room
2:00 p.m.: visit from Hamma, Garth, Tara and Megan
3:15 p.m.: visit from Bon-bon, Pa and Sam
3:45 p.m.: walk to toy room and some play time
5:30 p.m.: to cafeteria for dinner with Sam
6-7:15 p.m.: nap for Alex
7:30 p.m.: dinner for Alex
8:15 p.m.: visit from Michelle and J.R.
8:30 p.m.: trip outside to the patio, a poop for Alex (YAY!), and some sidewalk chalk
9:15 p.m.: back in for cleaning up, changing p.j.'s and sponge bath
10:15 p.m.: saying bye to dad who gets to go home and sleep tonight with Sam
11:00 p.m.: vitals, tylenol and off to sleep (hopefully until 5 a.m. when chest x-ray happens again!)
11:30 p.m.: tired, but very happy mom.

They say that when the chest tubes are pulled the kids do a 180 degree turn, they don't lie. It literally took about 5 mins for that to happen. Alex has been full of life, playing around, teasing and eating. He has made such huge strides today. We couldn't be more pleased with his progress!

The plan: do chest x-ray tomorrow to make sure that fluid is not building up around his lungs. If no fluid, we could be home pretty soon. If there is fluid, we increase his diuretic (medicine that makes you pee) to pull off extra fluid and do it all over again the next day and the next until it looks good.

My heart is overflowing with gratitude towards my Heavenly Father. His love is overwhelming. I pray that everyone who reads this blog will know of my unwavering faith in Him and His plans for each of us. Prayers are answered. You will never convince me otherwise. This little man has brought so much happiness and many moments of learning to my life. I know he has touched many of you as well. I hope that each of us will never forget the lessons he has taught us, and that we will forever work at being the good people that all of us can be. Enjoy the little things in life, never take a moment for granted, never forget to say I love you, never miss a chance to be silly with each other, always give thanks for all that we have.... especially each other!

Goodnight.

A little action

Alex has had a little more action today than yesterday. This morning they pulled his big chest tube. This one is the most painful for these kids. He still has 2 left that will be pulled over the next day or two. As he is up and moving more they are able to tell how much fluid his body needs to drain. Once his body will reabsorb this fluid they can pull those tubes. His arterial line from his wrist and an I.V. were pulled. The only I.V. left is in his foot and its pretty painful for him. I'm sure it's going bad, we're just trying to keep it open long enough for him to start eating better and then he won't need any. If we can avoid poking him any more times that would be awesome!

He got to get out of bed and go for a wagon ride just a few minutes ago. He stood up and was really wobbly. He took 3 steps to the wagon and was done. He cried and said his foot hurt (I.V.), but that was it. He coughed a bunch and took some nice big breaths once he settled down. It was just a short ride, but it was a ride. He took 3 more steps to get back in the chair and stood again for about a minute. We got him settled in the chair, he drank an ounce of chocolate milk in about 1 1/2 seconds and crashed back out. His color is great, his breathing sounds really good and he seemed to tolerate the movement other than his foot hurting. We'll try again later on too.

Here are a couple of pics from the ride:

We are hoping to be transferred to the floor today. The orders have been written, but there's no beds open right now. It's bitter sweet. The ICU is great because you have your nurse basically to yourself right at the bedside, but....you have no privacy and no quiet whatsoever. On the floor the nurses are more spread out and not as readily available, but you do get your private room where you can turn out the lights and close the door. We know the floor is a good thing, that means he's getting better!

Sam and Bon-bon and Pa are coming to visit this afternoon. Alex can't wait to see Sam, and I'm sure the feeling is mutual. Have a great day..... we'll update soon.

Oh, and I'm not sure if Hamma reads the blog anymore, but we also want to wish Gary's mom a very Happy Birthday! We'll celebrate when we can all be together for one big bash! Happy Birthday Hamma!

A much better night!

I know it's only 4 a.m. but Alex has had a much better night than last. He has been sleeping and actually resting. He slept for nearly 3 hours straight, and is now crashed back out. He is still in pain when he wakes up, but his need for pain meds is decreasing. He is going longer between doses right now. He has been sitting up more, but hasn't been out of bed yet. It gets a little tricky to do with 3 chest tubes and an exhausted boy! Morphine is his best friend right now. It does make him very sleepy, but this little man needs some rest. I think today will be a big day for him. They will try to get him up out of bed and are hoping to transfer him to the floor. We'll see how that goes.

He has been vomitting a bit today. It's pretty off and on. He'll drink something and be fine for an hour or so and then try something else and throw it up. It's just finding balance, and once he's up and moving his belly will adjust.

There are many people who have done so much to help our family through this difficult time. I want to express my deepest gratitude to each of you. I do not want to mention names for fear that in my sleep deprived fog I'd forget someone. Your actions are not going un-noticed. Thank you!

I was able to go home tonight to take Sam to back to school night. It was so nice to see him and spend some time with him, though it wasn't long enough. We went to school and then for an ice cream cone. I love that little boy and miss his smiling face. I will be so glad to be home and all together under one roof again.

We love you Sammy and we'll be home soon! Thanks for being such a kind and understanding and loving big brother. Alex sure is lucky to have you!

Here are a couple of pictures. I got my cord to take pics off of my camera now instead of just using Gary's phone. I cannot edit them on this computer though, since it's Gary's work laptop so please look past any red eyes!

Sitting up watching nursery rhymes on YouTube......



Sometimes it wears you out!



I'll update later on. Have a great day!

Got milk?

Alex does.... finally! He has been begging for it. They have been doing small amounts at a time, which is good for his belly, but a big tease for him. He slurps it down faster than you can blink an eye. The second helping he got, he looked at the bottle and started to cry, "I want it full". The third bottle he got twice as much in and still drank it just as fast as the others. He just asked for another one and raised his arm up in the air and said "I want this much milk". Pretty sure we could just put a straw in the gallon and let him go.

So far he's holding it all down. We hope that continues. He will keep advancing and hopefully try some food soon.

He didn't want to sit in the chair, but was ok to sit up in bed. He has been sitting up in bed, sleeping off and on for about an hour now. Baby steps. I know getting up in the chair is good for him, but sitting in bed is also very beneficial too. With his last 2 surgeries, the first 48 hours are his sleepy, adjusting time, then after that he seems to pick up quickly. We are praying that he will do the same for this one.

I'll try to post tonight, until then here's more pics of Alex:

Sorry for the delayed post....

Sorry for those who have been checking for some news this morning, we've been a little tied up.

Things overnight went fairly well. Alex had a hard time sleeping for more than about 20 minutes at a time. He was excited to get ice chips and an orange slushee, but was only allowed to eat them in moderation. It's a fine line between eating and letting him pig out. Their bellies are still "asleep" after surgery, so it takes sometimes several hours for them to wake-up and work like they should. Because of that, it can cause a lot of nausea and vomitting. He said he felt nauseated a few times, but thankfully, never threw up. As you would imagine, it can be super painful to throw up after having your sternum cut open.

He is beyond exhausted from the last 24 hours. With not sleeping that well last night, he feels pretty yucky this morning. They gave him some medicine to help him relax and try to catch a few zzzz's. Since then he has slept pretty solid for the last couple of hours. He still wakes up crying and then his blood pressure shoots up. We're trying to find a balance of pain control and happiness so that he will wake up more smoothly.

He has been given the go ahead to eat as tolerated, and to sit up in a chair. We thought that letting him rest was the best idea before we got him up. As painful as it sounds to get up 24 hours after open heart surgery, it's one of the best things for him. After this rest, and hopefully something to drink/eat, he'll feel more like participating! He is still asking for milk, he doesn't want anything except his milk. Poor kid, milk can be really hard on the stomach, so when he wakes up a little they'll let him have it in small doses.

Gary and I were able to get a little sleep last night. They had an sleep room available right outside the ICU, so we took turns and got a few hours each between last night and this morning. They also have a rocking chair at his bedside that we could use to doze off and on, but trying to sleep in a hospital is nearly impossible..... no wonder Alex is so exhausted!

They are pulling a couple of his lines today. The one that went directly into his heart was already pulled and his central line in his neck will be pulled this afternoon. He will also get rid of his foley catheter as well.

He is an amazing little boy. He is doing really well overall, just little things to work on throughout the day. Thank you for the prayers that you offer in his behalf. They are what gives him and us the most strength. There is nothing better than knowing that many are calling upon the powers of heaven to be with us. We know there on many angels who are sitting at his side, wrapping their loving arms around him and helping him and us through this difficult time.

We will update this afternoon. I am going home to go with Sam to back to school night. So if we get busy, just know that right now, no news is good news. Thank you again.

3:00 am...

It's 3:00 in the morning and nothing makes a guy feel better than a few spoonfuls of ice chips when you haven't had anything to eat all day!

He's pink!!

Can u believe it? This boy is pink and sating at 91. He is still on oxygen, and he will be for a couple of weeks. We never really noticed how "blue" his lips were. They always looked a dark color to us, but I think we were just used to him and his coloring. When we walked into the CICU  and saw him laying here, we were shocked.... his lips are pink, literally pink. His toes and fingers are pink. Amazing!

My heart is so full of gratitude to my Heavenly Father. I wish you could witness with your own eyes the miracles that have taken place so far. We are truly blessed! This is one amazing little man.!

Since we've been in the CICU:
He wakes up every 10-15 mins and cries and says "I want a drink of milk". Luckily for him he is almost done with having nothing to drink. At 8:00 he can have clear liquids for the night. They will not start him on any food until tomorrow at the soonest.
He says he wants to go home (go figure), guess his sleepover at the hospital isn't as fun as it sounded!
He wants to give Lucy a treat. (I'm sure Lucy would love a treat!)
His drainage from his chest tubes (he has 3) is very minimal.
His urine output is good.
He coughs quite a bit when he wakes up. Really good, hard coughs. That is key to a good recovery. Poor kid, sounds and looks painful, and he cries when he does it, but like I said, it's key to his recovery.
He is resting really soundly between the wake-ups, and I hope that continues throughout the night.

We will continue to keep updating throughout the evening. We have to leave the CICU during shift change from 7-8:00. We are hoping and praying for a quiet night for Mr. Alex.

I cannot thank each of you enough for your continued prayers. They are working. I am seeing it with my own eyes.