Samuel’s Adoption Story

March 7-8, 2006

by Joy Portis on March 8, 2006

Thank you for the many prayers lifted up for Samuel over the last year. They have been felt by us and heard by our precious Lord!

Once again we are coming home without surgery…..Here is what our last 36 hours have been like.

Yesterday morning I kept the room dark, trying to get Samuel to sleep as late as possible. It worked until about 8:30. He immediately wanted to eat, but seemed to understand that he couldn’t. He could still have water until 10, so that helped. We got ready and headed out to explore to keep his mind off food. At 11:45 we arrived at the hospital. It was 1:45 before they took him from my arms and back for anesthesia. Around 4:30 Dr. Nugent came and discussed the cath. with me. He was very pleased with the results he got, but said the surgeon, Dr. Fraser, would decide the treatment plan. The plan was for us to be in recovery until 7:30 and then go back to the hotel, but his left leg kept bleeding so at 7:30 we knew we had to spend the night, but they didn’t get a room ready for us until after 10 pm. We were tired and I was dying because I couldn’t use a cell phone in the hospital and didn’t have computer access. Finally my mom, in a panic, tracked us down in recovery and I was able to give her the details to pass along.

Dr. Nugent came by at 7am to check the bleeding and said we were fine to go. We were supposed to meet Dr. Frazer at 8 in his office upstairs to discuss his plan and then be done for the day. Our nurse kept waiting on discharge orders and by the time she finally understood Dr. Nugent had given her verbal orders and no written ones were coming, Dr. Frazer was in surgery……SO, instead of going to the childrens museum, as planned, we sat in our hospital room until 5 pm, when Dr. Fraser finally finished with surgery for the day. We were dying of cabin fever. It is very difficult to keep a child entertained in a hospital room all day when he’s not actually sick or recovering.

Dr. Frazer discussed his anatomy with me in detail and explained why SAmuel is a difficult case. There are several different treatment options, none of which are guaranteed to work, and each difficult to predict the outcome. He wants to discuss his case in their team meeting on Monday and call me early next week with his suggested treatment plan. I told him I would be lifting them up in prayer as they discuss all options and come to a conclusion. Please join me in praying for their wisdom.

We will be coming home Thursday!!!

Once again, the rollercoaster continues, but we are enjoying the ride!!!! Your friendship, emails, prayers, and support have and continue to make such a difference. You have each been such a blessing in our lives. 

{ 0 comments }

Texas Children’s Hospital Monday, March 6, 2006

by Joy Portis on March 6, 2006

We began our morning at 9am with an echo. Samuel was very hesitant and cried for the first 5 minutes and then eventually calmed down and even fell asleep. It was a good thing because it took about an hour. We then went and met with the cardiologist, Dr. Nugent. Samuel once again cried just seeing a doctor, but eventually stopped and I was able to hear what he was saying. He explained more than I could comprehend, but I feel confident in his ability to determine which route is best for Samuel. Depending on how the cath. goes, he said he might possibly be able to skip the tightening of the band and go straight to the Fontan procedure. This was news to me since I thought we were 2-3 years away from that, but we won’t know anything until after the cath tomorrow. We were scheduled for the cath at 8:30, which was great because he can’t eat after midnight. BUT they called and needed to add a case so we were bumped to third and don’t go until noon. Please pray that Samuel’s hunger will subside, because he LOVES to eat, especially breakfast. It could be a long morning.

We finally finished everything around 1 pm. He has a monitor on that he has to wear for 24 hours. We came back to the room to reorganize and then headed off to the park and the Houston Zoo. Samuel loved riding the metro train and it was a beautiful day to be outside. We had a great time, but on the way back to the hotel he wanted to slide at a park. While there he told me he had to use the bathroom. I recognized the urgency and took off in a sprint, but we didn’t make it in time. Fortunately it was contained in his underwear and we just discarded them and put on his jeans. We made our way back to the hotel and had taco’s for dinner. When we got to the room he kept complaining his stomach was hurting (a first for him). I kept putting him on the potty, but he only urinated. The last time he was crying and holding his stomach I held him in bed and he fell asleep. Hopefully it was his dinner disagreeing with him and nothing more. Please pray for a good nights rest and no pain for him.

Prayer requests
1. For Samuel to stay healthy and get a good nights rest

2. That Samuel will either sleep until noon or for his hunger to subside until dinner

3. Protection for Samuel during his cath

4. Wisdom for Samuels dr’s. as they determine the next course of action.

5. Protection for, SK, Elizabeth & Jon Cole while away

6. Safe travel for Cole on Wed

{ 0 comments }

Surgery Schedules for March 9th 2006

by Joy Portis on March 1, 2006

March 1, 2006 Today Samuel got his last three cavities filled and tomorrow we head to Birmingham to see Dr. Grant about his cleft palate. He has a cough, so pray it goes away and doesn’t delay his surgery again! We leave Sunday night, the 5th, for Houston. I will post updates as we know more!

1-31-06 The hospital called today and rescheduled us beginning March 6th, with cath on 7th and surgery either the 9th or 10th. Hopefully he will be over this sickness and we can avoid any others.

As of right now, Sat. January 28th, it looks as though our trip will be postponed. Samuel ran a temp. of 103.4 Thursday night and a has has a milder temperature every day since. He also has a cough, which you do not want when your chest is going to be cut open. Dr. Frazer is going to make the call on Monday. We’ve been on medication treating him for Bronchitis since Friday. Looks like Gods timing for surgery is different from that of Texas Childrens Hospital. So, who knows what we will be doing.

Dr. Chuck Frazer, at Texas Children’s Hospital in Houston will be doing Samuels 2nd heart surgery. We will be arriving in Houston on Jan. 31st. Our schedule, as of now is:

Feb 1st-Echocardiogram, chest x-ray and meeting with cardiologist
2nd- heart cath
3rd- Office visit w/ Dr. Frazer & Pre-op

6th-Surgery

{ 0 comments }

We’re Back in Cleveland December 4-6, 2005

by Joy Portis on December 6, 2005

Tuesday, Dec. 6th
We are coming HOME!!! Dr. Mee just called and thinks we should have surgery in 4-6 weeks, so we will be headed to Texas to see a Dr. Chuck Frazer. He trained under Dr. Mee and he has made me feel comfortable headed into his care. All in God’s tiimg!

Monday, Dec.5th
We met with the cardiologist this morning who, after looking at chest x-ray, echo, felt there was no need for a cath. tomorrow and that we could possibly move surgery up to tomorrow, instead of Wednesday. We went back after lunch to meet with Dr. Mee. He said the folds will not be completely smoothed out until about the 3 month mark and if we tighten it some more now and it loosens more, that Dr’s might be hesitant to do a 3rd surgery. I trust him and am completely confident in whatever he ultimately recommends. I was shocked though, because this was never mentioned previously. Upon being discharged last time, Dr. Latson said we needed to have it done within the next three months and was even willing to schedule it the Friday or Monday following his first surgery. Dr. Latson, the cardiologist we saw last time, has been on vacation and will return in the morning. Dr. Mee will meet with him after he finishes his morning surgery and then call us with their decision. So, it looks like we will possibly be headed home on Wednesday and head to Texas for surgery in a couple of months.

Sunday, Dec. 4th
Samuel & I are headed back to Cleveland tonight. He is scheduled for surgery on Wed., Dec. 7th. He will be Dr. Mee’s last surgery beffore he retires. We are so grateful he agreed to add Samuel to his case load before he leaves. I am still, however, praying that when we do pre-op tests on Monday and a possible cath. on Tuesday they find that there is no need for surgery because God has tightened the band, resulting in the perfect flow. Whatever the case, I will be clinging to our precious Lord for strength and comfort. Thank you all for you continued prayers and words of encouragement. You have no idea what a difference you make! I will continue to update as we learn more (and I have time near the computer in the hotel room). I will have my cell phone with me and you are welcome to call (334-546-2491). My Mom will be coming Monday night to stay with us during and after surgery so that we can trade out getting some sleep. Please pray for our safe travel and Protection of SK, Elizabeth & Jon Cole Physically and emotionally while we are away!

{ 0 comments }

Discharged, but not the greatest news

by Joy Portis on November 21, 2005

Monday, 4pm

We are back in the hotel room with Samuel, but not with the greatest news. Dr. Latson came by as we were getting our discharge orders to say that the echo showed that the flow has been reduced by half, but we need greater reduction to reverse the damage done and become a candidate for the fontan procedure. So, he must have surgery again to go in and tighten the band. Dr. Mee left the country Friday after Samuel’s surgery and will not return until next week. He has three surgeries scheduled on the 7th and 8th before retiring on the 9th. He has told them not to schedule any more for him, but they think one of the three that are scheduled will be cancelled and that he might be willing to add Samuel that Wednesday or Thursday before he retires. We will not know his answer until next week, but have decided to wait on him, versus using another Dr. and doing surgery on Friday. So our plan is to return Thursday morning after our check-up with Dr. Latson on Wednesday and wait to hear Dr. Mee’s answer. Please pray that he will be willing to add him, if that is God’s will. Samuel is doing much better than me. He is glad to be back in the room and we are seeing a more playful side of him again. I can’t stop crying though. I just hate for him to have to go through this whole process again. I am looking forward to seeing SK, Jon Cole & Elizabeth though! That brings a smile to my face. We should be in B’ham Thursday morning around 9:30 am, so save us some Turkey!!!

{ 0 comments }

Monday, November 21, 2005, out of PICU!

by Joy Portis on November 21, 2005

Monday, November 21, 2005 ; 11:15am
We had a great night, his fever is gone, and he looks better and better. The Dr’s came by around 9:30 and said they see no reason to keep him since he is doing so well. They plan to discharge him today and we will come back in Wednesday for a check-up before returning home. Hopefully we can get a flight Wed. night or Thursdasy morning. When I left to come back to the room we were still waiting to do an echocardiogram to be sure everything still looks good. Dr. Latson said we will need to do another heart cath in about 2 months to check the flow because he’s not sure it’s tight enough. If it’s not, they would have to go back in and tighten it some more. Please pray that it will be tight enough and working as it’s supposed to. We’ve had a great experience this time (as well as possible for opening up your childs chest) but I have no desire to do it again anytime soon. This too is all in God’s hands.

Sunday 7 pm
When I returned this afternoon, Samuel was sleeping. The nurse said he could get up and walk, so Cole walked with him and then pushed him around in a little tikes car for awhile. He had eaten a great lunch and then napped. After his nap I gave his a sponge bath and put some of the clothes we brought on him. We even got to see some smiles today. We went for a little walk and then I pushed him in the car and we toured the hospital for about 30 min. When we returned, the nurse came by and said that we could possibly be discharged sometime tomorrow, depending on how his chest x-ray looks in the morning. We were shocked. We would stay in our hotel room for a couple of days and then they want to see him for a check up before we return home. We are so excited! I came to the room to take a little break before returning for the night. I had planned on posting some new pictures, but left the camera. It will have to wait until my next trip back to the room, which will be sometime in the morning. Samuel is doing so well.. Once again, he is proving what a fighter he his. He is going to have a mighty testimony to share of how our mighty God worked MANY miracles in his precious life.

Sunday 12 noon
Once again I have seen God answer prayer, in an unexpected way. I have been praying for Samuel to cooperate with the Dr’s. and behave in the manner that would help him heal the fastest; I didn’t expect this to include his self removal of his intubation tube at least 8 hours before they were even going to evaluate whether he was ready or not. While it scared me to death and resulted in little sleep for me, we were moved off of the PICU floor yesterday afternoon. This means they feel his greatest risks are past us! Praise God!!! We are now in the “quad”. It is an area behind the nursing station that has eight beds and they can keep a close eye on him. I spent the night there with Samuel last night. It was comfortable, but we got little consecutive sleep due to checking his vitals, getting medicine, his and others monitors beeping, and general hospital noise. He still has a fever, which could be a sign of infection. This scares me, but they say it is still within a “normal” time frame for him to have fever, so they haven’t begun to worry yet. They did draw more blood this morning, so hopefully they can tell from it if there is some infection to persue. His is on an antibiotic, so it should help. Before I came to the room so shower, they removed his oxygen, which he constantly tried to remove, so he is happier. The said they were going to take him off the morphine today and then be able to unhook the IV from the machine and then he will be able to move around more freely and behave more like himself since he won’t be medicated. He doesn’t seem to be in any pain, but he is not happy about his fluid intake being so restricted. He is only allowed 1 oz. of liquid every hour. He cries a good bit when I tell him he can’t have any more, but this too is good, because it clears his lungs out. He is allowed to eat, and he ate well last night (applesauce, mashed potatoes, a little chicken, cheerios, some yogurt, pudding, bread), but he wouldn’t eat his breakfast. Hopefully Cole is having better luck with lunch. I came back to the room to shower about 9:30 and then took a little nap, and now fixing to head back over. Thank you all for the prayers, encouraging words and support. You have no idea how much it means. Love you all!!!!

{ 0 comments }

Heart Surgery Friday, November 18, 2005

by Joy Portis on November 18, 2005

Saturday 1:15 am
So much for a good nights sleep. Just got phone call from Samuel’s nurse. While she was checking on the little girl across the hall, Samuel woke up and pulled is intubation tube out. So much for those arm restraints! She said he is doing fine, but I am not. I know it had to hurt and I am mad at myself for letting them talk me into leaving. I am headed there now and will not be leaving anytime soon!

Friday 11:30 PM
We have returned to the room to try and get some sleep because they will keep him sedated all night. The Dr’s will meet at 8 am to determine if they will remove the intubation tube or not. He was given a combination of 3 medications to keep him sedated, but was waking up every 30 min. so they moved to something stronger to keep him out. He has a slight fever still (101.5) which they say is normal after surgery. After 24 hrs they will start researching why, if it has not gone down. As you can see from the pictures, it is’t a pretty sight. I just pray he rests well, his body reacts well to the band, his fever returns to normal, he handles the removal of the intubation tube well, he feels little pain, and that he will not remember this tramatic experience! I also pray for some rest, I am running on very few hours, and once the intubation tube is removed one of us will be bedside 24/7. I also have a sore throat and some chest congestion, this is not the time to be sick, so I pray this is all miraculously gone in the morning! Love you all!

Friday 12:30pm
Dr. Mee said the surgery went well and he was able to get the ring pretty tight. Samuel is in ICU and they will keep him knocked out until in the morning, when they will gradually ween him off some of the drugs. He will probably remain in ICU 2-3 days. We are able to stay in the room with him. He looks good, even with all the tubes coming from every inch of his body. I will try to post some pictures tonight. Pray that his body will adjust as he comes off the medication and the pressure doesn’t increase, or they would have to go back in and loosen the ring, and since Dr. Mee leaves for a 2 week vacation tonight, I pray there are no complications!

Thursday 11:00 pm
I am physically, emotionally and mentally exhausted, so I will give a quick update before hitting the sack. We have to be at the hospital in the morning at 6:15 am, with surgery planned for 7 am. We have had a wonderful experience here. Everyone has been so helpful and comforting. We met with Dr. Mee this afternoon. He and Dr. Latson, who did the heart cath, worked together to determine our options. Having only a single ventricle, too much blood has been flowing through his lungs, 4 times as much, to be exact. As a result, the body’s natural defense is to build up the muscle around the walls through which the blood flows, thus resulting is less flow. As it gets thicker and thicker, his chances for intervention and options lessen. Normally by 3 1/2 years of age, the walls would be too thick to consider surgery to refeverse. Going in to the heart cath the dr’s were expecting that to be the case, but were pleased to find that they are at a level we can hopefully reverse the damage some. The will do open heart surgery and place a ring around the vessel/ artery (not sure exactly) that carries the blood to the lungs. Hopefully the muscle will respond to the oxygen and reduce in size. He will gradually get bluer and bluer until his oxygen saturation reaches a level in the low 80’s and then we would move to the next step of treatment. He will hopefully then be a candidate for fontan surgery. I’m not exactly sure what this is, but plan to research it when I have more time near a computer. It is a miracle that we have this option. If the walls would have been too thick to do the ring surgery, which they were expecting to find, our only option would have been a heart and lung transplant down the road. We were told the success rate, if these organs became availible, was 40-50 percent and then only a 20 % rate of success for them taking. We are so thankful that this is not our only option. As with any surgery, there are many risks, so please praw the surgery is successful, uneventful, no infection, quick recovery and strength for us all as wego through this. It has been overwhelming to imagine them sawing his little chest open, but I continue to seek strength and comfort from our ultimate healer, our precious Lord and Savior. We have had a wonderful day with Samuel, and a sweet time of prayer over him tonight. Thank you all for your many prayers. I will update as soon as I can. The only internet service is in our room, where we will spend little time. We can be reached any time on our cells and Cole’s Blackberry (cole.portis@beasleyallen.com) I miss you and love you very much SK, Elizabeth & Jon Cole. I hope someone is giving you huggs and kisses from me every day! Have fun at the Thanksgiving Feast …

{ 0 comments }

Cardiologist Initial Report

by Joy Portis on October 20, 2005

On October 10th Samuel saw Dr. Colvin at UAB. He did an echocardiogram and chest x-ray while we were there. It was determined that Samuel has a single ventricle, double inlet to the left, transposed great vessels but no obstruction in outflow to the aorta or pulmonary artery. They think his ductus is patent as well. He has saturations that are about 90% and he is not in overt heart failure which suggests that he has at least some restriction in blood flow through the distal pulmonary vascular bed and almost certainly has important pulmonary vascular disease at this point. Dr. Colvin is not sure that surgical intervention is in his best interest. They want to further evaluate his physiology in the cath. lab. If they determine his ductus is patent and that he has fairly brisk pulmonary flow, it may be possible to consider a left thoracotomy with ductal ligation and pulmonary artery banding as a prelude to later interventions to try and deal with the single ventricle. His anatomy is such that one could consider a septation operation for his ventricle though these are infrequently done in this area. They doubt he would ever be a candidate for a Fontan operation.

The problem with thoracotomies or sternotomies for Samuel is that they may make him a less optimal candidate foe eventual heart/lung transplantation. They will keep this in mind as we make plans for any intervention.

For now we have started immunizations with our pediatrician, Dr. Jim Rabon. On Friday, Samuel got a flu shot, three immunization shots and blood drawn. He was not a happy boy, but recovered quickly. Once his blood work returns and we know his renal function is normal, he will begin taking Digoxin to help his heart pump stronger.

We have great respect for Dr. Colvin and plan for him to be our local cardiologist, but felt we should get a second opinion.

We have been fortunate to get an appointment with Dr. Mee, a surgical cardiologist at the Cleveland Clinic in Ohio. Currently, our appointment is set for November 15-17, 2005. If he has a cancellation, it could be sooner. Blood work will be done on the 15th, heart cath. on the 16th and if surgery is needed it will be done on the 17th. Dr. Mee is considered one of the top cardiac surgeons in the world and will be retiring shortly after our visit. God opened this door thru Dr. Robert Savage, a family friend and co-worker to Dr. Mee. I continue to put our trust and hope for healing in the ultimate healer, God! We will keep you updated if anything changes. Continue to pray for healing of his heart, weight gain (he now is at 23 lbs.), reassurance in his mind that we are not going to leave him. Thank you all for your continued support and prayers.

{ 0 comments }

October 7, 2007

by Joy Portis on October 7, 2005

When we got back from dinner last night, we had a message to meet in the lobby this morning at 8:30 for a group picture of the kids.  I let Samuel sleep until 8:15 and then threw some clothes on him.  He woke up in a great mood.  Cole was the only one dressed, so he took him down.  He did fine until they reached the lobby and he saw the other kids.  Cole said he cried the entire time they were down there.  They were never able to get a picture of all the children because some were confused over the time, some just didn’t show and others were just not cooperating.  I hate I missed it  J!  Cole and Samuel returned to the room and by then SK and I were dressed and ready for breakfast.  We ate at the breakfast buffet in the hotel.  Samuel’s appetite seemed to be returning to normal.  He ate eggs, watermelon, and ¾ of a doughnut that I had gotten for myself.

 

We decided to visit a local park today.  Nancy & Mark (Sarah’s parents) had gone the day before and recommended it to us.  We strolled around, rode in a boat, and let Samuel play on the playground.  He had a ball.  His smile is back and it is a comforting sight.  We were the only non-Asian’s there.  It is weird being the minority and getting so many stares.  Most are friendly though.  It was a HOT day, but it was better than sitting in the room watching the clock!  We took a taxi back to the hotel and walked to get some lunch.  Cole, SK and Samuel ate at KFC and I went to McDonalds.  Samuel ate more spicy chicken bites than SK.  I don’t know where he puts it in that small body of his.

 

We met our group in the hotel lobby at 2:30.  We had to go to the US Consulates office.  We couldn’t take anything in except our passports, so I couldn’t take any pictures L.   We were there about 1 ½ hours, but most was spent just waiting.  They checked to make sure our passports matched our face and then we waited for all the other groups to do the same.  Eventually the only person in the office who looked like an American came out with a microphone.  We all had to raise our right hand and pledge, in unison, that everything in our paperwork was accurate.  It was such a joke.  We were then given our “prized” brown envelope.  It cannot be opened.  We must give it to US customs and they send it off and we receive his US citizenship papers in about 1-2 months.

 

Sarah Kathryn stayed in the room to work on homework while we were at the consulate.  When we returned we ordered dinner from Danny’s bagels and had it delivered to the room.  It was our last official meal in China!!  We then began packing our bags!  What a great feeling!  We must have our bags outside at 5 am, be downstairs at 5:30 and leave on the bus at 6 am.  We will be turning our Panda Phone in to the hotel in the morning, so we will not be reachable by phone.  Hopefully Cole’s blackberry will work if you need to reach us.  His e-mail is:  cole.portis@beasleyallen.com

 

Our flight leaves Guangzhou at 8:20 am (7:20 PM on the 7th in Montgomery) and we fly to Hong Kong.  From there we fly to San Francisco and on to Atlanta.  Our flight arrives in Atlanta at 6:30 pm on the 8th (5:30 Montgomery time).  We will be traveling for over 24 hours total since we leave the hotel at 6 and still have a 2 ½ hour drive to Montgomery once we arrive in Atlanta.  Please pray for our safe travel and that Samuel will do fine on the long flight home.  Please pray that our adjustment at home will be smooth as we reunite with our other two children and adjust to a different time zone.

 

Thank you for the prayers, advice and encouragement you have given us prior to and during our trip.  We loved hearing from each and every one of you.  Even those who didn’t send messages, we were encouraged by the “counter” on each page.  We felt connected to home, even if were half way around the world.  Technology is amazing!

 

God is so good!  I leave here amazed at this whole experience.  Every family in our group has an amazing testimony of how God led them here.  No two are the same, for some this is their 1st child for others their 5th.  Some cannot have children, while others felt led to adopt before even trying to have biological children.  Some were scared and cried the night before meeting their child, but they were obedient to what they knew God had called them to do.  I will miss each of them dearly, and hope to reunite with them in the future.  May God continue to guide and direct each of our paths…and may each of us be obedient, even if it takes us out of our comfort zones.

{ 0 comments }

October 6, 2005

by Joy Portis on October 6, 2005

Samuel slept until 10 am.  We enjoyed a slow moving morning and had breakfast in the room.  We had to stay in the room from 9:30-11:30 because our guides took our paperwork to the Consulates office for us.  They represented us, but in case something was wrong, they needed to be able to reach us.  Our paperwork went thru fine.

 

Our guide recommended we go shopping at Beijing road, so off SK, Samuel & I went.  Cole had enough shopping the day before, so he stayed in the room and read.  We were disappointed in the shopping on Beijing Rd.  It was packed with the local Chinese shoppers and was not the type items we wanted to purchase.  SK did find some gifts for her friends though.  We decided we wanted to head back the island (where we shopped yesterday) to shop some more, but couldn’t get the taxi driver to understand.  We went back to the hotel, instead, and checked on Cole.  Since he was content in the room, we headed off to the island, with help from the concierge (he wrote where we wanted to go in Chinese so we could give it to the taxi driver).  We tried to leave Samuel with Cole, but as soon as we were out the door he was screaming, so back we went for Samuel.  We picked up a few more gifts and looked around the White Swan Hotel and then headed back.

 

We ordered room service for SK and Samuel while Cole and I went downstairs and had dinner alone.  Cole ordered a steak that came with a side of potatoes.  When he asked what his choices were our waiter began listing them.  One of the options was mushroom potatoes.  Unsure of what these were, Cole inquired.  Our waiter then got the manager who clarified that it was mashed potatoes.  It’s funny how things are confused in translation.  It was a nice dinner, but long.  I was ready for bed.  We got back to the room around 9 pm.  SK was working on homework and Samuel was asleep.  Another day down and one more day closer to home!!!

{ 0 comments }