A Work In Progress

A Work In Progress

Monday, June 27, 2016

Scott & Debbie Will be Reunited With Their Children on Wednesday!!! :-)

Here is Debbie's Update from Today.  I think I missed posting a few of her updates, but this is the most important one.  This is the answer to our prayers!  They Finally, after 1 day shy of 6 weeks, will be going home!  Thank you for your thoughts and prayers.  They will continue to need them, as Scott continues his treatments back in Milwaukee.

Going Home

At our appointment today, Dr. LaQuaglia removed Scott's last drain. He is free of everything except stitches! Those will be removed next week at home.

Scott is now down to 183 lbs. Time to get him home and fatten him up!

We were cleared to return home! We just got our tickets, and are now counting down our last 48 hours in NYC. 

We FaceTimed our kids to share the good news! We'll actually be home in time to go to Tyler's baseball game on Wednesday night. We'll see how Scott is feeling, but right now, he's saying he wants to go. πŸ˜€

We are overjoyed and praising God for the blessings he has shown to us! Last night, there were no direct flights into Milwaukee under $400. I prayed so hard for something to work out for us, and my prayers were answered! We really wanted to fly Southwest again, so that we can get all of our luggage home without ridiculous fees. I told Scott last night to stop stressing over it, because worrying will do no good. I told him to just pray. I knew it would be just fine. God is good all of the time!!!

Thank you all for your prayers, cards, texts, etc. these past 6 weeks. They helped make it possible for us to stay sane. 😊 We love you all, and can't wait to get home to those kids!!! πŸ’œπŸ’œπŸ’œπŸ’œ

This picture is with our hero, Dr. LaQuaglia. Words can't express our gratitude to him!

Tuesday, June 21, 2016

Things Are Looking Up! Updates on Scott!

Here are Debbie's recent posts containing lots of good news!  Thank you for following Scott's Story, and for your continued prayers! :-)  We hope and pray that they are reunited with their 4 Children very soon!  

Monday, June 20th, 2016
Posted 18 hours ago

I am happy to say that today was another boring day! Scott was fever free the whole day again! He is down 2 more lbs. and weighs only 194.3 now. He lost 34 lbs. in 10 days! Let me tell you, this is not the way you want to do it!

Between 9:30 and 11PM, we walked 18 laps. He is walking so fast! It's hard for me to stay alongside him with his pole of tubes, etc. that needs to go with him everywhere he goes.

Starting now, midnight, Scott can't eat or drink until after his procedure. He will be taken to a procedure room around 9AM. Dr. LaQuaglia will be looking at his wound VAC and either changing it or removing it. I think he will be checking out the drain he still has on his left side as well. Hopefully they can both be removed, but I don't think they will be ready. They are still draining. We will see what the surgeon and his team think.

We are excited for our 10 year old son, Tyler. Tomorrow, he gets to play baseball at Helfaer Field. That is the baseball field in the parking lot of the Brewer's stadium. Scott and I wish we could be there! We have missed so many of his games while we've been in NY. We can't thank Scott's parents enough for getting him to his games and practices so often. It's a lot of running around. They have done such a great job though!

I will update sometime tomorrow about how the procedure goes. Please keep Scott in your prayers for continued healing. I feel like we are getting closer to coming home. I can't wait for them to start talking about discharging him! Those will be the most beautiful words that I have heard in a LONG time!

Thank you for your continued prayers, cards, and support! God Bless you all!

Wound VAC Procedure
Posted 6 hours ago

The wound VAC procedure went well this morning. Dr. LaQuaglia was able to remove it! He now has 1 less tube coming out of him. Hallelujah!

The left drainage tube will stay in for at least another day or 2. They need it to produce less drainage before it can be removed. We would much rather have it stay in until everything is drained, than to have to put another one back in further down the road to recovery.

Now that ALL of his water weight is gone, we're praying for his weight to stop dropping. He just got weighed and is now 191lbs. That's 3 1/2 lbs less than yesterday. We're trying to get him protein and higher fat foods that are good for him, but his appetite is small. He is trying his best to eat when he can. He just gets full so quickly!

He is still fever free, so that is awesome! 

Our nurse JUST walked in to tell us that Scott is no longer in isolation!!! We can walk the halls whenever we want to now! No more gown and gloves! This is another great milestone! I have to ask if we can visit the 15th floor family area now.

 I just want to take him out on the patio for fresh air. That is not as important to him though. We are definitely different personalities, but work so well together. I thank God every day that we can be together 24/7 and still love each other like we do! God knew what he was doing when he placed us in each other's lives! πŸ’œ

Monday, June 20, 2016

Weekend Review - Update From Debbie Posted 17 Hours Ago

On Saturday night at 10PM, his weight was down another 4 lbs from the day before. He was now 199.2 lbs. 

At 12:15AM on Saturday, he had a fever. By 11AM, he was a perfect 98.6! At 7PM, his fever was back, but low grade.

We walked 8 laps at 10PM and 8 laps at 11PM. He was taken off of his low-fat diet and is now able to order off of the regular menu, with much more selection. That's all for Saturday. It was a fairly uneventful day!

The Child life team surprised Scott by blowing up pictures that I e-mailed to them. The ladies brought them in today for Father's Day and hung them up for us. It really meant a lot to him, and we both love seeing our kid's pictures on the wall.

Kristine is a new friend of mine from this floor. Her fiancΓ© had surgery the day before Scott. We walked to Central Park today for some fresh air. Some guys with snakes asked us if we wanted to pet them. Before we knew it, they put the snakes on our shoulders and took pictures for us with my phone. They tried to get us to pay $10, but we didn't ask them if we could hold them, and they never told us they would charge us, so we walked away.

We were able to Face Time with the kids for Father's Day. They are in Minnesota this weekend with Paul and Tracy.(Scott's sister) They are having a lot of fun at their house! Thanks Paul and Tracy!

We walked 28 laps total on Sunday. That's 2 miles! He is now 196 lbs. He lost another 3 lbs. Now that the water weight is gone, he doesn't want to lose anymore weight. Hopefully he can maintain around 195 - 200 lbs. 

The BIG news for Sunday is that he made it the whole day fever free!!! Praise the Lord!

We watched our 5th church service online this morning. We can't wait to actually sit in a pew inside a church again! You take simple freedoms like this for granted, until they are taken away from you. 

We asked everyone to pray for an uneventful weekend, and God answered our prayers! We are so thankful! It looks like things are moving in the right direction! 

We know that his wound VAC will be checked on Tuesday. Hopefully it can be removed that day. We will have to wait and see. 

Please pray for him to remain fever free, and for everything to continue to heal so that we can return home to our kids! Slowly but surely, it will happen. 

God's timing is always perfect! We just need to trust his plan.

Saturday, June 18, 2016

Scott Is Still Hospitalized in New York for Father's Day

Hi Friends and Family!

Many prayers are needed for peace for Scott tonight.  Tomorrow (Father's Day) it will be 31 days since Scott and Debbie have seen or hugged their kids.  This makes me so sad.  All they want is to go home, but Scott is still hospitalized.  Please treasure the time you have with your kids, and your Father's (if they are still living) tomorrow.  It's easy to take for granted.  Jonathan and I don't have any special plans tomorrow.  This will be my 17th Father's Day without my Dad and Jonathan's 4th Father's Day without his Dad.  I'm thankful we have each other.  We will probably take Mookie for a walk at the park!  Life is short. Life is tough.  God is Faithful.  I'm Thankful that we have a loving Heavenly Father!  Happy Father's Day to Scott!  May God strengthen you and give you His Peace, and I'm praying that you can quickly return home to your Family.  You are loved!  None of this pain is wasted.  God promises to work it out for your Good and His Glory!  Love you! :-)

Here are Debbie's recent Caring Bridge Updates regarding Scott:

Thursday, June 16th, 2016

Scott's weight today was down another 3 lbs from yesterday. He is now 206, which is what he weighed the morning of surgery 2 weeks ago. He still has some water weight to lose though. I'm sure he will end up weighing less due to his small appetite, and not eating at all for 5 days after surgery.

IR got Scott in for his procedure around 11 AM today. They drained 30cc's from the tube that they inserted. They left the drainage tube in, and once the culture comes back to show whether or not there is any infection, it may be able to come out. We're not crossing our fingers though. 

This morning, the surgeons mentioned possibly having to open up his incision from surgery 2 weeks ago to drain some fluid from behind it. They said they would handle the fluid by his liver first though. Now that they tackled that procedure today, we were told that he shouldn't eat or drink anything after midnight again. He will probably be taken tomorrow to check out his incision, which is red and swollen.

We FaceTimed with the kids tonight, which we always look forward to. We even got to say hi to Sophie (our dog). The kids are having lots of fun, but they obviously miss us more and more every day, and vice versa! They are heading to MN for the weekend to spend time with Scott's sister Tracy (Paul) Schuler and their family. That should be a good distraction for them since they can't be with Scott on Father's Day. πŸ˜”

The nurse took Scott's temperature before our evening laps, and he has a fever again. He still did 8 laps at 10, took a break, and did 8 more laps at 11:15. I better get some sleep in case the surgeons come in early to talk to us about the plans for our day. 

Day by day, new families come and go on this floor. Please say a prayer for all of these precious little people and their families.  It truly breaks my heart! 

There is another DSRCT patient on our floor as well. His fiancΓ© and I went to the 15th floor for over an hour of girl time this evening. They are also in their 30's, and are experiencing a much longer stay than they had hoped for. His surgery was the day before Scott's. God definitely has a way of bringing sunshine to some not so sunny times in our life. Having her here to talk to was just what I needed today!  

Another ray of sunshine was our 6 year old, Myles. Our daughter Lexi sent us a video of him, and I must have watched it about 20 times today. His adorable face and sweet sounding voice made us smile and laugh so much. He is so funny. If you have FaceBook, you can watch his video on my page. He was eating onion and talking about what his wife would do if he was married. πŸ˜†

Good night! If this didn't make much sense, it could be due to the fact that I was falling asleep as I was writing it. 

Friday, June 17th

As of 9:30PM tonight, Scott is down another 3 lbs! He weighs 202.8 currently. He is looking smaller and smaller by the day.

We think it was around 8AM this morning that the nurse came to take us to the procedure room. We were still half asleep. Dr. LaQuaglia opened the lower part of his incision and removed any unwanted fluid/etc. He placed a tube on top of the repaired incision site that is connected to a wound VAC machine to keep the incision free of fluids and infection. That will remain until Monday or Tuesday. At that point, it will be re evaluated.

They removed the right drainage tube while he was under. The left drainage tube remains. It is still draining too much to be taken out yet.

After he returned from the procedure, a lady from IR came to his room and removed the drain that was put in yesterday. We never heard if there was infection found in the fluid that was drained, so we assume all is well. We've heard that no news is good news here.

Scott slept, rested in bed all day, and watched tv. It was a rough morning, so he needed the rest throughout the day!

At 5PM, his low grade fever returned. Hopefully they will figure out his fevers once and for all! They sure are trying many different things. At least his fevers aren't getting up near 104 and 105 anymore! We are thankful for that.

We finished dinner after 9, and then walked 8 laps. We took a 45 minute break and walked another 8 laps.

I have to add in a high for the day. There is a candy cart that comes by every room. I think they come by once or twice a week. I'm not really sure. I was napping today when they came by, so I missed the delicious chocolate. Scott said he was fine, and didn't want anything. When I woke up, I asked our nurse if the cart was still on the floor. She asked a male nurse who just finished his shift for the day. He found out that they were gone already. Our nurse gathered some mini candy bars for me from somewhere. That was really sweet!

About 15 minutes later, the male nurse who had finished his shift knocks on our door and hands me a bag. He said he heard that Scott wanted Twizzlers and that I wanted chocolate. He walked to a store and BOUGHT us candy! I was floored, and he had walked away before I could thank him. What a kind and generous human being! My heart was really touched by his kindness! He went all out, and candy is NOT cheap around here! I want to make sure he knows how much that meant to me. Hopefully he works this weekend.

Please pray for us to have an uneventful, fever free weekend. Enjoy your weekend wherever you may be! Thank you for the continued prayers for Scott's recovery! God Bless you all!

Another Act of Kindness
15 Hours Ago

Everyone has been so good to us at this hospital. Of course we don't want to be here, but they are trying to make it less difficult for us.

Nurses, doctors, social worker, and other staff have come in to ask us how they can help. What can we get for you? Would a massage help? Do you want a chaplain? Would you like to speak to a counselor? These things are not Scott's idea of healing. He just wants to go home and be with our kids! We say to all of these questions, "Just tell us what we can do to get out of here, and we'll do it!" Well, we have been doing everything right, but it's not God's plan for us to leave yet.

The small thoughtful things are what get us through: the friendly nurse who brought us candy last night, the cards we receive from people that we never would have expected, a round brush in the mail from my Mom, because I didn't have one here, the friendly RSA (food service lady) who gave me a hug and a devotional book just when I needed it the most, our nurse Leah - who pulled me aside in the hall last night to give me her e-mail so I could send her pictures of our kids to blow up for our room for us to look at, Pastor Bourman and Vicar Spaude making a special 45 minute trip to visit us and share God's Word with us, the e-mails, texts, and calls to let us know you are thinking of us and we really are not alone, the special cards in the mail from our kids, that they worked so hard to make!

We don't need much, but the little things are what we will always remember about this experience. We are pretty simple people.

What do we need? We need the simple things that don't cost any money. The nurses and doctors who tear up when we talk about our kids, because they can't imagine being apart from their own children for this long, shows how much they truly care and are doing everything in their power to help us get home.

Whatever you're doing, especially the prayers for us night and day are greatly appreciated! A huge thank you to everyone for whatever you are doing. Nothing goes unnoticed, and we are thankful for the simple things.

We we love you all, and miss everyone so much!

Wednesday, June 15, 2016

Debbie's Updates Re: Scott From 6/10, 6/13 and Today

Swollen is the Word of the Day

Scott is retaining so much fluid today! He is now up 20 lbs. since surgery. This is all water weight. His fever was low grade today for the most part. I think the highest it got was 101.8. At other times of the day, it was only low 99's.

PT/OT - physical therapy came in today, at my request. Since he can't walk the halls, I wanted some ideas of what he can do to get some exercise. Everyone talked, and PT was able to have him put on a yellow gown and gloves and take 3 laps. He was cleared to take laps with me after 9PM also. We did 3 laps at 9:30 and 3 more at 11:30. She showed him some excercises to do in the room and gave us a pedaling machine to use when sitting in a chair.

Because of the fluid retention, they gave him Lasix, which is supposed to help reduce the fluids by making him pee it out. They reduced the IV fluids to almost zero. It isn't working so well, since his weight and the swelling went down for a bit, but are back up again. They just drew blood to run the midnight lab work. Once results are back in an hour or so, we'll find out what the plan will be.

His drainage tubes both needed to stay in, because they are both draining too much. They keep saying that's a good thing because the fluid needs to come out. 

We surely have our ups and downs each day! 

Scott and I work very well as a team! I'm here for him no matter what! It doesn't matter what it is that he needs, I will be there to help him. He feels bad that I have to do so much for him, but that's what loving someone is all about! I just wish I could take some of his pain and problems away. All I can do is be there to support him, pray with him, read devotions with him, and trust in God's plan for us. Thankfully, we're best friends and get along with each other so well. We're both patient with each other and just know what the other one needs. God has blessed us with each other, and for that, I am so thankful!!! God is good!

We still have no idea how much longer we'll be here. Each day is getting harder and harder for us to be away from our kids! Once we're together again, I am going to hug them so tight and never want to let go!

Saturday/Sunday Summary

It is now 1AM on Monday morning. I took a break from updates because of a rough and busy day on Saturday. Sunday was semi uneventful and I took a much needed break for myself. Oh how I wish Scott could get a break from the 9th floor!

Saturday: We are able to get out of our isolation room to walk the halls during off hours, when no one else is out there typically. Those hours are 9PM - 6AM. We sleep crazy hours, but that's OK. πŸ˜€

6AM Saturday, we did 3 laps. At 9:30PM we did 5 more laps. 

Fevers were up and down all day Saturday. His high for the day was 102.6 and the low was 99.6. Even though it's sometimes very low grade, we can't seem to be able to get rid of it for good.

His swelling got really bad on Saturday, and he was so extremely uncomfortable! I felt so bad for him! They gave him Lasix to help reduce the fluids, but it didn't seem to help very much. However, from 10:45AM - 5:45PM, he dropped almost 4 lbs. He was SO uncomfortable though, that he didn't notice much difference. We're talking over 20 lbs of water weight, mostly from his waist down. 

Sunday: A little after midnight on Sunday, they drew blood for labs. The results showed that his hemoglobin was low. At 5AM on Sunday, he received another unit of blood. 

Right before they started the blood transfusion at 5, we walked 6 laps at 4:15AM. We weren't able to do more until 10PM, when we did 6 more, and then 6 more at 11:50PM. That brings me here, writing this after 1AM. I changed our sheets after our walk at midnight, so we would both have fresh bedding for the night. 

They have been giving Scott some extra pain meds to manage his pain and discomfort these past couple of days.

His fever remained between 100 and 100.6 all day. I'm happy it didn't go any higher. 

The swelling improved more today, and he is down to 219 lbs. Still at least 13 lbs of water weight to shed. 

I didn't leave at all on Saturday, because it was a rough day overall for both of us! 

Sunday, we watched our 4th church service online in New York. After church and breakfast, I went to Ronald McDonald House to shower. I then met up with my new friend Barb. I met her at MSKCC day hospital, when she was there with her daughter a couple weeks ago, Since she found out we were not from here, and away from our kids, she offered to help in any way she could.She has been fantastic! She texts to see if I need food, to get out for a walk, or anything else.

We got lobster rolls and walked to West River to sit and eat. It was a great break from the hospital.


Monday, June 13th - Wednesday, June 15th (4:30PM)

On Monday, between the hours of 1:45AM and 11:45 PM, we walked 28 laps. That's 2 miles in less than a 24 hour period! After his major surgery and the setbacks that we've experienced, I am extremely proud of him! Well, I'm always proud of him! 😍

His weight went down about 5 lbs (water weight) since Sunday evening. Every lb of water weight that he sheds is a great thing!

Throughout the day on Monday, he had low grades fevers. By 8:15 PM, he was fever free for the rest of the night.

On Tuesday, he was down 1 lb more, and was running a low grade fever throughout the day. We walked 20 laps total.

At 4PM, while I was at the Ronald McDonald House, he was told that he needed another CT scan. They took us for the scan at 9PM. 

Today (Wednesday), the team of Doctors visited and told us that a pocket of fluid by his liver was showing on the CT scan. IR would evaluate it and get back to us. We just found out this afternoon that they will drain the extra fluid tomorrow sometime. He can't eat or drink anything after midnight. Hopefully they get him in early, but it all depends on when they can fit him into the schedule.

His weight was down another 4 lbs today, and he is currently fever free. So far, we've only been able to walk 8 laps today, at 5AM. Our cut off time for isolation is 6AM. It would be so nice if we could get out of isolation and be free to roam the halls during the day and visit the 15th floor. There is an outdoor patio on the 15th. Fresh air would do Scott a lot of good!

We appreciate every card, text, prayer, and thought for Scott, me, and our children! 

Thursday, June 9, 2016

Scott - Updates From Caring Bridge

Please keep those prayers coming!  Here are 2 of Debbie's Caring Bridge Updates.

5 Days Post Op - Posted 23 hours ago

Today was our son Tyler's 10th birthday! We did FaceTime with the kids for a long time today. It was great to feel like we were in our house as they chased around from room to room and to the backyard showing us everything. They are doing well! Tyler is staying with Troy and Tina for the rest of the week/weekend, and our other 3 are going camping with Scott's parents.

Scott was running a fever all day. It got all the way up to 105. Thankfully, it was only 101.5 at 11PM! That was by far the lowest temperature of the day.

Even with a tough day of fevers, tests, etc., he still got in his 14 laps for a total of a mile.

About those tests: because of the persistent fevers, they called for a chest x-ray and CT scan. They found some fluid in his left lung. They decided to put another drain in tomorrow to remove the fluid from that lung. They want to get it out to make sure that it doesn't cause any extra complications.

After being here since Sunday, May 22nd, my Mom is flying home to South Bend, IN tomorrow. I am so glad that she was with me during surgery and to keep me company throughout this past week and help me when I needed it. I know that Scott is going to continue recovering well and get us home to the kids and to relieve Scott's parents. We've heard only good things about them! If this is really true, which I believe it is, then we couldn't be more proud of our 4 precious kids! I can't wait to be busy with them and their schedules! I can't wait to hug them all and tell them how much we love them! How blessed we are to have 4 healthy children! Being on the pediatric floor really opens your eyes to the pain and heartache that these families feel. It truly breaks my heart!

He had redness around the incision site today. He also started to develop a slight rash. They switched some antibiotics around and both seem to be improving.
He is still retaining a lot of fluid. Hopefully that goes down soon too.

Very Eventful Night - Posted 12 hours ago.

They took a stool sample around 11PM last night. When I got out of the shower at 1:15AM, The nurse caught me in the hall and told me that Scott has C. diff. She said we would be moved to our own room for isolation. Everyone except Scott has to wear a gown and gloves in our room.

Even though this wasn't what we wanted to hear, at 5 AM, his fever was GONE (98.6)!!! The antibiotic for the C. diff took his fever away. He'll be on that antibiotic for 10 days. We have no idea when we're leaving, but this infection shouldn't set us back any additional time.

Scott is sleeping, and we are waiting to see when they will get him to take him to get his chest tube. He will be getting the chest tube to release the fluid in his left lung. He will be under anesthesia. They are hoping that he will come back to 9th floor, pediatrics fairly soon after to recover.

God is good! He always allows me to see the bright side when things aren't as we would like them to be.

I walked back to RMH this morning and sent my Mom off on her Uber ride to the airport. Please pray for safe and speedy travels home for her.

Please pray for Scott's procedure today, that there will be no complications, and that his body will heal quickly so we can return home.

Love to all of you who continue to lift us up in prayer! We will need the prayers to stay strong! There have been many bumps in the road since we got to New York.

Debbie posted on FB Tonight that this is how she and anyone (except for Scott) who enters his room, has to dress.  They have been away from their kids for 3 weeks.  Continued prayers requested for quick healing so they can get home ASAP! :-)

Wednesday, June 8, 2016

Continued Prayers Needed for Scott!

Debbie's Caring Bridge Post
4 Days Post Op.

Yesterday was a pretty good day overall. Today started out pretty well. The nurse told us that he was fever free all night. This morning, he did have a low grade fever. 

He had his epidural removed today,  and now has all oral pain meds. He is retaining a lot of water, which makes things uncomfortable for him.

I went to the RMH to shower and eat dinner with my Mom. When I got back, his fever had spiked up to 104. It has remained high since then. Meds bring it down a tiny bit, but it goes right back up.

His incision from surgery had been looking awesome, but it is a little red on the sides now. The surgical team will be in tomorrow morning to check him out.

He walked a total of 14 laps around the pediatric floor today, which equals a mile. That's amazing to me!

I'm glad today was good, so that we can handle times that don't seem so great. We were prepared for ups and downs. That's what major surgery/recovery is all about! 

I love how comfortable Scott and I are with each other. He knows how much he needs me, and he accepts the help willingly. I told him that I love taking care of him. Whenever he needs me, I will always be there. Like a friend just said, "For better or for worse, in sickness and in health" really applies to us right now! He was my best friend when I married him, and he still is 15 years later! He amazes me with his faith, strength, and patience in dealing with the trials in his life!

Tuesday, June 7, 2016

72 Hours Post Op - Debbie's Caring Bridge Update

Today went pretty well! He has had a fever around 102 for most of the day. They transfused another unit of blood this afternoon.

He slept a lot again today, but he is doing everything that they tell him will help to make his recovery go faster. 

The picture is of an incentive spirometer. He is supposed to blow all of his air out of his mouth and then suck in on the mouthpiece. His goal is to get to at least 2,000 every time. He usually does. This contraption helps to keep his lungs clear and working well. It helps to prevent pneumonia. 

He walked 5 laps total today around the rectangular shaped hallway. I pulled his pole with everything attached to it, and he walked without holding onto anything! That is a huge success for the 3rd day after surgery (with a 102 fever)! 

He amazes me daily! He cannot be stopped! He's doing everything in his power to get home to our kids. I'm doing everything in my power to be his cheerleader and help push him. 

His voice was much stronger sounding today. He smiled a lot more and was cracking jokes. We got laughing so hard on our lap around the hall at 11PM. I couldn't stop laughing, but it hurts him to laugh. Sometimes I'm not always the most helpful. 😁  

He was able to start clear liquids tonight. He had a little bit of chicken broth and some apple juice. It's a start!

I have no doubt that he will be getting stronger and stronger every day and getting rid of more and more tubes, etc. He can't wait to be free of cords. That's about all for now. Time for me to sleep!

Sunday, June 5, 2016

48 Hours Post Surgery - Debbie's Caring Bridge Update

I wanted to post an update for people who are wondering how Scott is doing today. 

It has been a long day! He has had a fever all day that meds aren't bringing down. His blood pressure was pretty low for a while. He still has to be on oxygen. He was not putting out enough urine, so they gave him more fluids. 

They are monitoring him closely and constantly taking his temp and vitals.

He is absolutely exhausted and has slept a lot today! He got up twice to walk. The first time, he only walked about 20 feet in our room. The second time he went down the hall. It wasn't an easy task, but he did a great job!
He's pushing himself as hard as he can, but his biggest complaint is how tired he is!

He was able to have ice chips today and sips of water. He is doing well with that so far.

Please continue to pray for his recovery! We have a long way to go.

Saturday, June 4, 2016

Debbie's Update Today Regarding Scott's Recovery

Here is Debbie's Caring Bridge Post from about 7 hours ago.  (I know since Caring Bridge has changed their privacy settings it's been hard for some of you to get in to the Caring Bridge Page.  I've been told by a Friend that she has a Caring Bridge Site and still had to use the Heiman6 Password.)

     I saw Scott last night around 9PM. It was a quick visit, and he could barely keep his eyes open. My Mom and I went back to the Ronald McDonald House to get some sleep.

We came back this morning around 9AM. When I first saw him, he wasn't talking because his throat hurt so much. He just whispered everything. 

His nurse said that they would move him to ICU today. However, when his surgeon Dr. LaQuaglia came in, he said he would move to the pediatric floor today. That was exciting news! I will be able to stay with him here. He got moved into his room around 1:45PM. 

The Dr. removed his NG tube. He felt a lot of relief after that came out. 
His mouth is extremely dry! He's had nothing to eat or drink since Thursday. He hopes to be able to have something tomorrow. They said not today though.

His pain is being managed pretty well. He is very tired and sleeps off and on. He is still on oxygen, because his oxygen levels drop when he dozes off to sleep. Hopefully he'll be off of his oxygen tomorrow.

I'm so proud of him for fighting so hard! I'm not at all surprised by how well he is doing less than 24 hours after such a major surgery though! It was 7 hours long, and I heard that Dr. LaQuaglia worked hard that whole time! He's an amazing surgeon, and we're so blessed to have him as Scott's surgeon.

I'm hoping that Scott feels a little bit better later today and can get up and walk. Dr. LaQuaglia wants him to start moving. I'm not in a hurry to push him though. He knows his limits and will definitely push himself when he's ready. After all, he always has been a fighter!!! I just love this guy so much, and realize every day what a lucky woman I am to have him in my life!

It was the sweetest thing when I first saw him this morning! He whispered, "I want to see my kids now!" Gary and Karen, you can let them know he thought of them first thing this morning! πŸ’œ We sure do miss them more than words can express!

I'm thankful that my Mom is here with me. It was nice to not be alone, especially all day yesterday! I know my sister Jenny really wanted to be here for surgery. Scott's counts just didn't allow for that to happen. Thanks for coming to New York for us! It really meant a lot!

Thanks to everyone for your texts, FB posts, CB posts, and prayers yesterday. The time flew by, thanks to the nonstop encouragement that was sent our way. All of these things brought a big smile to my face throughout the day, and kept my mind off of what was happening to Scott. We have such amazing friends and family! We love you all!

This is Jen writing:  We praise God for a successful surgery.  Many prayers are still needed for his recovery, as this was a pretty major surgery and he is in a lot of pain, as you can imagine.  Thanks for following up to see how Scott is doing! :-)

Friday, June 3, 2016

My BIL's Surgery Today in NYC

I wanted to post an update, so that my Friends without a Caring Bridge Account could read my Sister's updates from Today.  I know some of you have asked, so here are her updates through out the day.

1st Update

The nurse came to tell us that surgery started at 11:10AM NY time. All we know is that surgery is just getting started. 

Anesthesia is working well, and his vitals are all good. Nothing else to report at this time.

The next update will be around 2PM NY time. I'll keep you all posted. 

All of the posts, texts, and pictures are keeping me going! Thanks for the overwhelming amounts of love!!!

2nd Update

Scott has been in surgery for 3 1/2 hours. We just got an update. 

So far, Dr. LaQuaglia has removed his spleen, two masses from his abdomen, and his omentum (a covering of the organs).

The nurse liaison said that Dr. LaQuaglia never gives an estimated time that he will finish. He just takes his time and does it right. I feel very confident in his abilities! God is in control after all.

I can't believe that we've been here 8 1/2 hours already. It will be a VERY long day!!!

Thanks for the continued prayers as the surgeon and his team do their job. Love from New York!

3rd Update - 5 1/2 Hours Into Surgery
We just received another update. It was VERY vague. Things are going well. He has moved into Scott's upper abdominal area. 3 specimens were removed from around his colon. The surgeon is continuing to work.

FB Update

I'll post a CB later. Wanted everyone to know surgery was done in 7 hours. All is well.

Out of Surgery

I haven't been able to see Scott yet. I'm anxiously waiting to be by his side. They said it would be around 8PM, and it's 8:10 right now. A nurse just came to tell me that I will only be allowed to see him for 5 minutes. I will not be able to stay with him. I'm not happy about that at all, but I understand their reasoning. It just really stinks! When I see him, he won't be awake. The pain meds are making him sleep, which is good.

In addition to my previous updates, we found out that they took a piece of his pancreas that had a tumor connected to it.

Dr. LaQuaglia said that it's not necessary to do stem cell harvesting anymore, since he didn't qualify for the 8H9 immunotherapy trial in NY. That's one step to check off our list.

Dr. LaQuaglia feels as if he was able to remove all of the tumors in his peritoneum. He did not touch the liver.

He will recover in the hospital for about a week. I know he'll do his best to get out sooner than that. It wouldn't shock me if he set a record! This man is determined to get home ASAP! I'm more than ready as well!

When we return to Milwaukee, we will start FAR (full abdominal radiation). 

That's all I know for now. Keep up the prayers for a quick recovery!

Thank you for your continued prayers!  Debbie and Scott have now been away from their kids for over 2 weeks.  Please pray for a quick recovery, so that they can get back home to be with their Family.  I will keep you posted as I know more.