2 New Amazing Reports . . .

Matthew saw Dr. Fortuna on Monday and you're not going to believe this!!!  . . . we are being released from his care. Matthew is doing so well that Dr. Fortuna said he sees no reason why he needs to see us anymore. We are being released back to his cardiologist to follow his care. I couldn't believe it. His chest x-ray looked great and he said we can return to normal (reasonable) activities in 2 weeks. YEAH!!!! We see Dr. Hasselman, Matthew's cardiologist, on November 4th for an echo. Hopefully, that looks great and we can start seeing less doctors. He is becoming active and returning to his normal self. We can't thank Dr. Fortuna enough for his amazing care. He is a very impressive surgeon with such a kind personality.

As for our other news...this one shocked us the most. Matthew and Taylor are going to be a big brother and big sister!! Yes, you read it right, I'm pregnant. I saw my OB doctor yesterday and everything is looking good. I have low progesterone so I will be getting shots twice a week. This Friday, they are going to teach Craig how to give them to me. I think he is too excited about getting to do this. As most of you know, I've had issues getting pregnant in the past and my Doctor told me he has no idea how I was able to get pregnant with some of my problems and this must be a God thing. Now that we are past the shock, we are very excited!!!

We know all of you have been amazing prayer warriors for us so we would like to request your prayers for this baby's heart. My OB doctor said the next few weeks are critical because the heart will finish developing. We are praying so hard that his/her heart will develop with all valves and all 4 chambers and that everything is where it should be. Please pray with us!! We will see a high risk pregnancy doctor around 16 weeks for a 3D sonogram to check the heart. We know several families who have a heart child and that have gone on to have several more children with no problems so we are trying not to worry. I'm just taking it easy and we are going to sit back and enjoy every minute of this little miracle too. Matthew has informed us that he wants a baby sister. I guess Taylor has made an impression on him...that or she threatened to hurt him if he didn't say baby sister.

Well this seems to be enough big news for this week. Please keep us in your prayers.

An Amazing Moment . . .

If there is one thing that has changed us during this journey it's the fact that we cherish the little things. We no longer take for granted all the milestones that our kids take. The last couple of days, Matthew has started this new routine of wanting to run fast. He will say, "Watch me run, I'm fast" and then he takes off running like a wild man. He gets so excited and will say, "I do it again." Yesterday, Craig and I were cheering for him for a half an hour while he ran and then I started to cry. It was amazing to see our boy running with so much energy and he wasn't breathing hard and he stayed pink. Wow, what an amazing thing. We are so blessed!!! I used to give him his bath and he would get cold and turn some crazy shades of blue. Last night he was cold during his bath and stayed pink. I'm overwhelmed with excitement as I watch my little guy being able to run and not struggling to catch his breath or that his body is able to sustain high oxygen levels even when he is cold! These new milestones have me teary eyed and made me realize what an amazing miracle Taylor is too!!

This journey has been worth it's ups and downs and Craig and I have grown stronger. I was talking to Melissa (a fellow heart mom) about our kids yesterday and how lucky we are to be chosen as parents of these heart kids. We are excited to see what they do with their lives because they are fighters and I think they will accomplish everything they put their heart into. I also want to thank Melissa for being a strong support for me.

Thanks for letting me brag a little okay a lot but I'm so proud of Matthew. Have a great weekend and enjoy this beautiful fall day.

On the up and up road . . .

Just wanted to let everybody know we are doing great. Matthew is gaining strength every day. We go back to see Dr. Fortuna on Monday with a chest x-ray so let's pray that everything still looks good. The next week we go to see the Pediatrician and the Cardiologist. Lots of appointments but we don't mind going just to hear good reports. Our biggest issue right now is being stuck at home. It takes 6-8 weeks for Matthew's immune system to rebuild itself so no public places until then. The other fun thing is that we can't pick him up under his arms so that his sternum heals. That was a lot easier when he was a baby. We are getting pretty good at scooping him up by his legs. Thank God he doesn't weigh a lot. Although, I am ready for him to gain his weight back.

Here are a few fun pictures from the past 2 weeks.

 Matthew with his favorite nurse, Kris, right before we left the hospital

 Matthew and Daddy as we were leaving the hospital.

 After we got home, Matthew fell asleep on the floor. He was nervous to be on the couch that he would fall. He was very protective of his owies.

 Spending some movie time with Sissy.

I was trying to get some pictures to make his birthday party invitation. He is a Toy Story nut so we are having a Toy Story party and he is going to be Woody for Halloween. You can tell from the picture on the top that he wasn't happy about this photo shoot but he was happier outside so that is the one we are using for his invitations.

Great News . . .

Matthew woke up this morning with his rash half gone. As the day passed the rash has faded more and more. I finally heard from the surgeon and all the lab tests came back within normal limits. We are thinking this is a reaction to one of the meds. Dr. Fortuna wants me to only give Matthew 2 of his meds at this time and talk on Friday. We were so relieved when he woke up looking so much better. He was up playing today and talking up a storm. What a trooper!!!

We know this was a huge answer to prayer so thank you to each and every one of you who had a part in it. We were thankful that the blood cultures came back negative. Hey, we are back on the road to recovery. I knew Matthew was starting to feel better because he and his sister start fighting this afternoon. Back to normal!!!

Our spirits are lifted and we are looking forward to getting back to an everyday routine. On another note, I would like to thank all of our church family for providing meals for us the last 2 weeks. It has been wonderful to have one less thing to worry about. We are amazed with your love and support and we truly feel blessed to have such an amazing church family. We love you and can't wait to back to church as a family real soon.

Waiting for test results . . .

We went to see Matthew's surgeon at 6:00 last night. He was confused as to what this rash is and what is causing it. He came up with a couple of ideas. One is that it is an allergic reaction to one of his medications so he stopped all meds. We are going to start them back one at a time. His other idea is that it could be viral and would have to run it's course. The last idea is that it's something that a blood culture would show us. For example: endocarditis, staph infection or multiple other types of infections. He debated if he should admit us for observation but decided to have us go get the blood draws and he would call us later that night if his white blood count was elevated. The blood cultures take awhile to come back. He is going to call us later today and possibly repeat the labs this afternoon to compare them to last nights. His other concern is the low grade fevers. He told us if they hit 101.5 again then we are to take him to the PICU for an admission. We hit 101.1 but Motrin took it down. No fever this morning and his rash is half gone. Confusing - I know!!! It makes me think maybe it is a medication but I have no idea.

We are praying hard and trusting God to give the doctors answers. This is such an emotional ride. So many times I would do anything to trade places with Matthew so he wouldn't have to go through all of this pain and not feeling good. It is so hard to see your child hurting. When we pulled into the hospital last night he cried and cried. He said, "I don't like my hospital." We are getting to know the lab techs and x-ray techs on a first name basis. They are so good with him and they don't seem bothered by his screaming fits. One day this will be behind us but right now it feels like it is lasting forever. We are in better spirits this morning and I know that is because God is carrying us right now. I know you have heard this a lot but we are so thankful for your prayers. It is amazing how many times we have hit our wall and you all start praying and within a few hours Matthew starts improving and we are lifted. I was reading in my Bible last night and read the verse, "I can do all things through Christ." How true, we can do this if we do it through Him.

I will update after we hear the test results.

Frustration . . .

I was at the hospital for 4 hours yesterday. X-ray was backed up which made us late to see Dr. Fortuna. Then we had to wait a long time there too. It was worth the wait because we received a great report. Chest x-ray looked wonderful and so did his blood work. Oxygen saturations were 96 - WOW!!!! We are staying on all the same meds and going back in 2 weeks.

So here is the crazy news. Matthew has been running a low grade fever for several days and Dr. Fortuna was thinking it may be his body trying to recover but we should have the pediatrician look him over on Wednesday ( an already scheduled appt) for an ear infection or something else. If any new symptoms appear to call right away. Well. . . . . . . . . we woke up this morning with a new rash that looks like he has a sunburn. We saw the pediatrician (a 2 hour wait - UGH) and she thought he may have scarlet fever from strep throat. His throat culture came back negative so it's not that. She called the surgeon and he was in surgery so they were going to have him call her back. She sent us with a script to draw blood cultures but wanted us to wait and see what else Dr. Fortuna wants us to do. Dr. Fortuna is to call us when he gets out of surgery. We are still waiting. . . . . . . . . . the rash is spreading all over his head and face and has moved to his belly. He is itching like crazy but it is very different looking than the yeast infection rash. One concern is endocarditis, a infection around the heart. We hope not but at this point nothing shocks us. We are waiting for the call to head to the hospital. Please pray they figure this out soon. We will update after the blood cultures and talking to Dr. Fortuna.

Dr. Appt. Today . . .

We are trying to get back to normal at home. We haven't made it yet. It seems like we are still recovering from the sleep deprivation and stress. Matthew is sleeping well and getting around better. He moves slowly to protect his owies. Our biggest challenge is getting him to take his medications. He was great at taking medicine before surgery but he got sick one night when taking his meds and it has made him hate them. He keeps telling us I'll get sick. Of course it doesn't help that he is a little stubborn ( I have no idea where he gets this). He takes 4 medications in the morning, 3 at lunch, 2 at supper and 2 at bedtime. Two of these medications are for the yeast infection so they will be done by the end of the week. His yeast infection looks so much better.

Our other challenge is getting Matthew to eat more. He is a picky eater and has become worse. He's on a low fat diet so that makes it harder. I went to the store yesterday and bought everything I could find that was low fat. We kept his diet pretty healthy before surgery but the boy loves cheese and milk. He likes the full fat stuff but seems to be adjusting to the skim milk. I would love any ideas for some low fat snacks. We started Carnation Instant Breakfast with his milk and low fat pudding and yogurt to help with adding calories and not fat.

We go to see Dr. Fortuna (his surgeon) today. We have to get blood work and a chest x-ray before the appointment. They are going to see if he has developed any effusions (fluid around the lungs). They will adjust his Lasix accordingly. He really fills a diaper after taking the Lasix. Thank God for Pampers, the only diaper that doesn't leak from the diuretics. I will update this afternoon after the appointment. Our appointment is at 1:50.

Thanks for all your prayers and support. We would have never made it without them!!!! I've had several emails requesting some pictures so I will post some later today. I apologize for the lack of updates at home. We felt a little overwhelmed with trying to get back into a routine.

Home Sweet Home . . .

We are home!!!! I know, I know - hard to believe!!! It has been crazy since we pulled in the drive at 2:00. Matthew is very weak so he has stumbled twice and I caught him. Yikes!! We are trying to get things in order and get all his meds picked up. I will post more details as we get settled but we wanted to let all of you know we are HOME!! Can you tell that I'm excited.

Ready to Move Forward...

Yesterday was a very long day, but as it drew to a close things were starting to look up. The rash had Matthew completely miserable for most of the day and to make things worse the surgeon planned to work on Matthew at 11:00 but couldn't make it to his room until 4:00. By the time 4:00 rolled around Matthew was miserable from his owies and the rash and was convinced that we were trying to starve him. As Matthew's room began to fill with people to help out he became very agitated and ready to fight. After giving him what the surgeon described as "enough drugs to put a lumberjack to sleep for 12 hours" Matthew was finally relaxed enough to let him go to work. He didn't actually fall asleep until they were done.

We took this picture immediately after they were finished. As you can see, the bottom part of Matthew's belly was completely raw and the rash was all over his chest scar. They took all of the bandages and tape off of his chest and set up an oxygen mask to blow directly on the rash to help it heal.

In the end, it was just enough to give Matthew a relaxing 3 hour nap. Thankfully, he woke up in a great mood and was ready to eat, play and laugh. Good times...

Roller Coaster Ride . . .

Okay, I'm probably not the right person to be writing this post due to my complete exhaustion but bear with me. Our roller coaster ride has taken a temporary down hill turn. Matthew started getting extremely irritable last night. I pulled his blanket down to find a terrible rash around his incision and all over his belly. He became very agitated and couldn't sleep. The Nurse Practitioner who worked last night determined it was a yeast infection but the cream she prescribed did nothing for the itching. He was up most of the night. He had these nasty night sweats and we changed his bedding twice. Finally, they gave him some Benadryl and he slept for 2 hours. He woke up at 4:30 screaming for me. I discovered that during his intense itching he pulled the surgical tape off his incision and had worked loose all of his dressings. There is concern that if he continues to scratch at it he will end up with a staph infection. We had that after his first surgery and don't want it again!!!! Thank God Dr. Geiss rounded early this morning. He confirmed it was a yeast infection resulting from a greenhouse effect. He has all of these bandages and tape all over his chest and belly which makes things moist and causes yeast to grow. He made the decision to pull his RA line and pacing wires. They will sedate him and Dr. Geiss will do this procedure. They have everything ready including a blood supply at 11:00 but Dr. Geiss has been held up so we are waiting.

I know his heart is strong so we have a lot to be thankful for but wow this is starting to wear us down. Our mental state isn't so great today. Sleeping for 2 hours and stressing all night just wears you down emotionally and mentally and physically. Taylor is starting to struggle at home and has said some pretty sad things. Craig needs to go back to work so he is dealing with all of this plus work. Please pray that getting everything off of him and the antibiotic will make him feel better and we start going back up hill. Also, pray that we bounce back emotionally. Your prayers have made a difference every time we post specific concerns so please keep praying!! We will update after the procedure is done.

A Great 24 Hours . . .

Dr. Matthew Orwig

 Checking his doggy's heart. His doggy gets medicine when he does.

Pulling Matthew's chest tube went great yesterday. He ate a great lunch and a little for supper last night. We are making some major progress. They rounded this morning and decided to pull his other chest tube and the ART line. This mean we can get up and take a walk to the toy room!! He is a different little boy in the the last 24 hours. He is much calmer and talks non-stop. We are starting to see our little boy's personality returning. Craig stayed with him last night and he slept for 6-7 hours. Wow we are moving forward!!



Pulling Drainage Tube at 11:00

They rounded this morning and they have decided to pull Matthew left drainage tube. This is the one that seems to be causing him a lot of pain. The will give him some heavy narcotics sedate him and then pull. We will let you know how it goes and give a more detailed update. Please pray this isn't too painful.

Things are calming down . . .

As you can tell from a couple of Craig's post last night that Matthew had another rough night. Dr. Geiss came by this morning and went over all the tests and they have determined that Matthew's pain is from his drainage tubes. They would like to pull them but he's not eating enough. They started back up with some narcotics to help with the pain which made me nervous since his stomach still has issues. Thanks to everybody's prayers he finally pooped today which means his stomach is waking up. The best thing was that he went 5 times!!! Seems crazy to be bragging about this but it was becoming a major problem. He ate a couple of crackers, part of a bag of pretzels, 4 slices of banana, 5 bites of rice and 4 bites of mashed potatoes today. He also drank a little. We are hoping to keep moving forward.

So many of you have asked for specific prayer requests so we would love to share those with you:

1. He starts eating and drinking regularly
2. He continues to have bowel movements
3. That they are able to pull the drainage tubes soon
4. He remains with no effusions after eating (fluid around the lungs)

Thanks for all of your prayers today. Look how well they worked.

On a fun note, Matthew was a character this afternoon and was talking up a storm. It was wonderful to see him happy. He was feeling better with the pain meds and being able to poop. He named all the fish on the ceiling (Grandma Fish, Grandpa Fish, Mommy Fish, Daddy Fish, Sissy Fish, Gracey Fish and Zavier Fish). We had a few visitors and some special honeymooners. I was in a wedding yesterday (Craig was suppose to be but somebody needed to stay with Matthew). The wedding couple, Heidi and Fred (by the way, we introduced them!!!) came by for a visit and brought a big doggy that Matthew loved.

A visit from Grandpa and Grandma Orwig. They brought him a book that has buttons which makes noise and Matthew decided to operate it with his foot.

Sissy came for a visit and he was excited to see her as she was him. They watched a movie together and it was so good for the both of them!

He kept an eye on her because he didn't want her to leave.

We would like to say a special thanks to our church family. All of your emails, phone calls, visits and prayers have meant so much. We love you and can't wait to be back to church with the whole family.

By the way, today was my Mom's birthday and I forgot until this afternoon. My mind isn't functioning too well these days. So if you see her tell her Happy Belated Birthday to make up for my forgetfulness!!

Blood Test Results...

Matthew's blood tests indicated no sign of Pancreatitis this morning. Still not sure what's causing his sudden chest paid. It seems to be happening every 2-3 hours. He had multiple x-rays taken this morning and we should get those results by 9 a.m. The popular opinion has now changed to drainage tube complications. He is now back on one of the narcotics for this pain.

New Concerns...

For the second time tonight Matthew has woken up screaming and clutching his chest. Tests are planned for morning. This could be a number of things but Pancreatitus seems to be the popular opinion. Why couldn't this happen in the morning so they could do the tests right away???? Instead we have to wait the entire night and pray that is doesn't happen again. He looks so confused and scared...I'm sure I do too.

Spirits Are Lifted . . .

I was looking back over our last several posts and realized that I was sounding very negative. I have to admit I was feeling down and had hit this wall of not knowing how much more I was going to be able to handle. Craig has been so strong for me. He amazes me with his ability to stay so calm. I'm so thankful that he stayed last night. I think I would have been a mess to see Matthew vomiting blood. I went home at 11:30 p.m. and I called Craig at 5:15 a.m. to see how things were going. Needless to say, I was in the car racing to the hospital. He vomited at 2:30 a.m. so I'm not sure why I felt the need to come so quickly but I needed to be here. Craig had decided not to call me so I would get some rest (he thinks I haven't been eating or drinking enough) but when I got here he looked so drained. You could see the worry all over his face and that's when I lost it. Both of us cried wondering how much more can we see our little guy go through.

This evening, Matthew was resting comfortably so my parents stayed with him so we could go to dinner together and get away from the hospital. That really lifted our spirits. In our conversation, I told Craig that when I was driving today I was praying out loud that God would take care of Matthew and was questioning why he is going through this. The same song came on WCIC that helped me during his other surgeries and it's the ring tone on my phone. "Praise You In The Storm" by Casting Crowns. I ignored it because I wasn't in the mood to let go and let God take control. Talking to Craig reminded me of it and I told him that it was time for me to stop questioning and praise God in this storm. I know that God has answered so many of our prayers but I lost sight of it today. 

Here are some of the lyrics that touched Craig and I:

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

It's true. God is holding every one of those tears that Craig and I have shed the last few days and He has never left our side. Our hearts are torn but how can we not praise Him for what he's done. He has done so many miracles in our little guys life. Look at how he runs and plays with half of a heart! Matthew pulled through surgery with a strong heart and no complications. That was God! So we are remembering all that we have. We have walked out of this hospital many times with Matthew by our side and there are so many parents ho have to walk out without their child....their child never gets to go home.

Thanks for praying for us too. Your prayers helped us clear our vision tonight. We are still in this storm and we are going to do our best to to let God take control and praise him.

I will update in the morning with Matthew's progress. Thanks for listening!

New pics . . .

 Here are some pictures of Matthew walking for the 1st time since surgery. We took the pictures yesterday.

He got to go for a wagon ride since he did a good job walking. He enjoyed it but he wasn't about to give a smile.

Here comes the Matthew parade. Craig did a good job pushing all the equipment.

Matthew started off not liking his nurse, Kris, but after 3 days she got to him and he loved her. She has a heart son too so she can relate to us and Matthew.

I'm hoping we can post some more pictures of him walking by tomorrow but we will see. 

Some Answers . . .

The doctors rounded and were surprised about Matthew's condition. We are happy to have a Nurse Practitioner and Intensevist working today who know Matthew very well. Not too happy with the one from last night but I won't complain.

They spent a lot of time talking with us about the game plan for now. They stopped the one medication and started something else that promotes healing of the stomach lining. There are a couple of ideas of what they think is going on. No real way of knowing unless it continues. He hasn't vomited again and he is starting to talk a little. Also, they started him on some TPN which is nutrition with calories through his IV so he doesn't have to eat. He is struggling with insomnia and has slept 3 hours out of the last 24. They just gave him something to help him sleep. Hopefully, a good day & night of resting and we will be back to recovery tomorrow.

I went home and slept for a few hours but came back early when I heard he was vomiting blood. One of the nurses we know very well came walking in with me today and the poor thing got an ear full of my stress this morning. Thank God they are so understanding of our ups and downs emotionally. We are still very worried about Matthew and our hearts are heavy but we feel better about the game plan. We have lived it and been told it so many times, ''2 steps forward and 1 step back, " but it's still hard to handle.

Thank you for all your words of encouragement and your prayers. It's so nice to know we can vent on Facebook or on the blog and you all listen and pray for us. We are feeling better this afternoon. Oh and by the way no fluid on his lungs. The one thing we had mentally prepared ourselves for he hasn't had. Go figure!!

Long Night....

Matthew's severe nausea has continued and peaked with him vomiting blood in the middle of the night. It was incredibly scary and sad. We now believe his issues over the past 24 hours have been the result of a negative reaction to one of his pain meds. The manufacturer of this pain med specifically says do not use with aspirin, Enalapril or diuretics because of side effects including the likeliness of stomach bleeding and ulcerations. Matthew is on all of these. I guess the disappointing thing is that all of the indications were there, but we kept giving him the pain med anyway. It was his nurse that finally (thankfully) made the connection and pulled the med last night. We will have lots of questions for the Doctors when they make their rounds this morning.  

Complaining . . .

Matthew had a set back tonight. He has become very dehydrated which has caused him to throw up and dry heave for the last 3 hours. He is so miserable!!! This has happened due to them trying to keep fluid off his lungs. Managing this requires such a delicate balance. They are now bringing back medication and machines that he was weaned from earlier today. We are praying that the extra fluid they are giving him and reducing his diuretics will help him start feeling better soon. We are so exhausted and I think I'm just starting to feel down. His heart is staying so strong and we know first hand that setbacks are part of it all, but it still flat out stinks to see your little boy so miserable. Please pray this is resolved by morning and that he doesn't end up with fluid around his lungs or belly. The staff is trying so hard to manage this delicate balance. They said they think they may have pushed him too much 48 hours after surgery.

On a brighter note, he did go for his walk and did well. He then went for a wagon ride and enjoyed it. All of this was before he got sick. I will post pictures of it later. His nurse Kris has gone above and beyond the last 3 days. She even stayed late tonight to help out with him.

Thanks for letting me share. God is good and we know he will get Matthew over this hump but Craig and I can't pull ourselves away from Matthew's bedside until He does!