8-17-09

Today Sophie dodged surgery and her condition is getting better. Over night, Sophie's drainage bag began changing color and her fluid levels decreased. All these signs mean Sophie's liver is sealing up and healing itself. Due to the recent change, Sophie will not be going back into surgery to have her liver checked out. As it stands, it looks as if she should be on the road to a slow recovery. Doctors think her lungs should improve as her "shunting" has improved and the oxygen levels in her blood are slowly rising.

Stacey seems to be doing great and her healing is well under way. She seems to be getting stronger and due to her excellent health and tolerance for pain they are letting her go home tomorrow where she will heal in her bed for the next 5 weeks. For now we await Sophie to get better and look forward to holding her and seeing her smile at us. It has been a wonderful change to see her body with the new liver!!

8-18-09

Today Stacey went home and was feeling great. She will be spending the remainder of the next month at home in bed and very light duty. Anyone interested in stopping by to see Stacey can reach her at 703-401-9710 or at saccasper@hotmail.com. Sophie on the other hand is still recovering and remains sedated.

8-19-09

Today was a tough day day for Sophie. Starting the day, Sophie was crashing hard and having difficulty breathing and keeping her vital stable. Her heart was racing and her breathing was dropping. After several attempts to get her on track, nurses and doctors began to bag her (breathing by bag) and circumvent the ventilator. After an hour or so they spoke about flying her to Children's hospital where they could put her on a matching to bypass her main lungs and transfuse blood into her while the machine placed oxygen into her blood; thus giving her lungs a break. After an hour or so she was given antibiotics and she slowly began to stabilize. As it turned out, Sophie had a bad infection causing her issues.

During the day Sophie was visited by the 610 Car Wash crew (Gary, Terry, and Tree). Throughout the afternoon they stayed with us and shared lunch. The visit was a refreshing change for the day and Sophie began behaving herself upon their arrival. After visiting the remainder of the afternoon, they were able to see Sophie go from bad to good and stabilize prior to departing. Special thanks to all their staff for being supportive of Sophie and all her needs and Medical Fund activities.

Adding drama to our day, Savana has decided to join the hospital scene and had a severe allergic reaction causing her to blister and swell. Her entire neck and other parts became swollen and she broke out in hives. No word as to what caused it, but she has also been diagnosed with a skin infection (not staff) which added to the reaction. After a quick visit to the ER we were off to CVS and into bed watching Aladdin!! Wonder what I'm going to get putting me in the hospital. Hope its something interesting!!! Well have to wait and see......

In other news, last night I had a really nice family come and meet Otis. After a short meeting they fell in love with him and he is now in a new home with little kids and a nice yard. Just in case he was more than they expected I gave them a return policy. If he doesn't work out I will have him back for adoption. Big dogs are a special breed and can be very sensitive. This being said, they better keep him because I cannot go through the process of watching him leave in a SUV looking at me and his brother in the driveway with that look in his face. It was worse than being 10 years old and watching the movie, "Where the Red Fern Grows." Kids and animals will get you every time! Anyone interested in Jimmy.......

For now were getting by day by day and watching our lives take a new shape. With all the changes, I look forward to our new lives when we get the family back home (missing the doggies though) and being a family again. Even with all the challenges facing Sophie upon coming home, it will still be better than the current situation. One thing for sure, Stacey Shepherd will be in our thoughts every time we look at Sophie as it is Stacey's liver acting as the life force allowing Sophie's little body to thrive. I still have not completely grasped the whole idea yet, but upon Sophie awaking and smiling at us I think it will be overwhelming in a positive way.

Sophie will get better and its going to take a few more weeks. I look forward to sending everyone a email telling you she is awake and kicking!!!

Thanks for all your prayers and support.

8-21-09

    Today's event took as turn in a complete direction. For starters, Sophie has been going crazy on the machines and making it difficult to keep her stable. After hours of injections and medicine, she was given a sonogram for her swelling belly in fear she was having internal issues. After the test it was determined she was having the swelling from her tissue holding the fluids. Sophie is still fighting a tough infection and doctors are confused it is occuring now rather than right after the surgery. This in mind, they should know Sophie is anything but normal.

    Yesterday I took Sophie's older sister to the emergency room because she had caught a skin infection called impetigo. After a short visit and all her skin getting scabbed over and blistered, she was sent home with antibiotics and Benzedrine. As the night progressed, Savana's pain increased and her skin appeared even worse. By morning, Savana had blisters forming on her skin and needed to be taken back to the hospital where it was determined her condition was declining.

    After being evaluated it was determined she was suffering from a severe allergic reaction to the antibiotics and her immune system was fight itself. The reaction was making her skin red and swollen; the blisters were opening and the skin was pealing off her in every place you can imagine. Initially they were going to take her to MCV in Richmond, but after learning her sister was in the hospital at Georgetown, she was transported to the pediatric intensive care unit at Georgetown. Upon checking her into the room adjacent to Sophie, the staff saw her skin and thought she was a burn victim!!

    At this time Savana is in bad shape and we hope she recovers without any scaring to her skin. Go figure, we try so hard to keep her from seeing her little sister sedated with all the tubes in her and she ends up in the PICU herself down the hall!! This being said, tonight we all sit in the PICU at Georgetown praying for both our little girls. We are earning quite a reputation for having the weird stuff around here as Savana's condition is rare and has only been seen a few times here...so I have been told.

8-22-09

    Today brings some relief as doctors now think Sophie is getting over her infection (they think), however, her stomach is swelling and they attribute this to the fluids she is getting and retaining. Sophie is still far from being out of the woods and we are sitting shifts with each one of the girls. There has been talk of going back into surgery to see what is going onside Sophie's Belly.

    Savana on the other hand is getting worse in her skin condition but better in the fact that she is in the care of the doctors here at Georgetown. Currently they think her condition as more of a skin bacteria than an allergic reaction. Her skin is continuing to boil and peal off around her body and any area where her skin folds, bends, or stretches. I mean everywhere!! She has been on morphine since her initial entrance to the emergency room in Stafford and shakes from the pain when awake. She has been in and out of her sleeping spells and awakes screaming at times. Because of the pain, when she is awake she stays still like a statue to avoid any further discomfort. Below I have added some pictures of how she is holding up. Please keep in mind these are not pretty pictures and the best ones I can give without it being too upsetting.

Thank you for your support and prayers.

8-26-09

Today was a good day for Savana. Today Savana went home with Holly!! After several days recovering from her Staph infection, Savana appears to have recovered enough where she can safely return home. The final verdict was she had a "Super Infection" brought on by the impetigo infection. In laymen terms.....the impetigo lead to a very strong type of staph strain that during its infection process made a toxic byproduct within the skin. The toxins in turn burned the skin like a chemical burn. In treating her condition, doctors scrubed her skin and kept the dead skin off of her when it died. Still have a lot of scrubbing to do, but at least she is home and out of the hospital.

    Sophie on the other hand is still keeping the doctors on their toes. It appears they are worried that the ventilator is causing issues with her lungs and they fear too much oxygen will cause irreversible damage to her lungs. THis is the result of her being deprived of oxygen for so long prior to surgery (I will refrain from commenting on the wasted time by the transplant team). Additionally, Sophie has just recovered from a a major infection herself, setting her way back in her recovery. Today being the first good day since her operation, doctors have changed her breathing machine to a "Oscillator". The idea behind the new machine is to change regular breathing from several deep breaths a minute to a rate of 100's or breaths a minute. The sound of the machine pushing air into her sounds like a generator when the power is out. Should make for a very nice nights sleep tonight in the room!! The hope is the vibration and harder breathing will make the capillaries inside her lungs open up and process oxygen more efficiently and help in the recovery of her Hepatopulminary disorder. Kinda makes me feel as if they don't really know how to fix her from here as they are trying all types of things! For now we will keep praying.

8-27-09

SOPHIE IS NOW THE HOSPITAL SCIENCE PROJECT!!

This being said, Sophie is still unstable and the doctors are struggling with her condition. Several things have been tried to get her lungs to work correctly but most have failed. Below I will try to describe the trials:

       **Giving blood transfusion. This is being done to eliminate her stronger blood hemoglobin and give her regular blood to transport oxygen more efficiently. Basically, her blood is too strong and process oxygen too fast! By               slowing down the process the lungs will work harder to oxygenate her blood...causing the capillaries to open up.

**Using a high rate breathing machine to get her lungs to process oxygen fast as described in the last email- FAILED MISERABLY!

**Lowering her oxygen level and making her body work harder to process the oxygen..making her capillaries open to get the job done.

**Changing the rate of her breathing and wait.....

    The issue with these processes is that they have no idea what happens with each attempt. The concern at the moment is three fold. First, humans breath about 20% oxygen and Sophie is breathing in the 90% area which will cause severe damage to her lungs over time. Pure oxygen is actually toxic to the lungs!! Second, after fixing the infections in her blood and stomach, there appears to be some type of viral infection in her lungs which is not unusual in these situations. Thirdly, they have called doctors in Children's of Philadelphia, Boston, and others abroad searching for answers without results. See, Sophie's condition is so rare that there is little information on how to handle her. Tomorrow they are planning to put dye into her blood and run a CT scan to see where her blood is flowing. They think they may be able to isolate the area where the blood is flowing to fast and plug the area changing the flow and slowing the blood. As I understand it, "Shunting" is when the blood moves too fast through the body and passes through the lungs at such a high rate that the required oxygen is not absorbed like it should be; the capillaries hinder the transfer because they are to dilated.

     Reaching for some comfort, we ask the doctors how she is doing and question how they feel about her condition every day. The most common responses has been,  "We hope to see her recover but it will take time." When I told the doctor it seemed like they take her day by day, she responded in a serious manner and said, "We take Sophie minute by minute." Being we were being serious and I could see the frustration in her eyes, I stood up and asked her to be frank with me stating, "You really don't know how to fix her and are concerned correct....level with me here." AND THEN..............they admitted they were perplexed with Sophie and told me they are doing everything they can but cannot isolate the issue as they were under the impression the new liver was going to fix her issues. Hearing this was good in a way as I know they are doing everything they can and trying very hard to see her through this. Good news is these doctors are some of the best and we know were in good hands.

     I guess the biggest surprise to me is the infections and the viruses. We live amongst microscopic bugs and viruses that will kill you! Even inside a sterile hospital they can get you because most of them live inside your body and if/when they decide to get outside one organ and into another organ or area they will cause grave infection. Furthermore, the complications from these things kicking you while your down can be devastating. Who would think infection can cause so much terror following such a major infection??? Not me. Wash those hands and refrain from touching your face!!!

     Not to scare anyone, but look at Savanas pictures at the bottom to the pics page on Sophie's website and you can see what happens when you pick up something from the floor in a grocery store and touch your mouth. After several days Savana is finally home and healing with the family. Otis is still home with us and we are seeking a family to adopt him. Please call me if you know of someone interested in him!!!

8-29-09

               For all of you who attended the fundraiser last night...THANK YOU!! It was a wonderful night and I want to send a special thanks to all who assisted in running the raffles and 50/50 pot. Many of you may have met Todd Geller (Applebee's General Manager) while there, but for those who didn't get a chance to meet him I will pass along his thanks for coming and sharing the night with his staff and him. Todd told me he felt like he met a second family and was emotional in expressing his thanks for everyone coming and supporting Sophie and our family.

               So you know, Todd held this fundraiser for other reasons besides his business being the host..Todd has walked in my shoes and last night held his daughters picture and her old hospital cards in the breast pocket covering his heart. Countless times Todd calls me and tells me he talks to his little girl in heaven and she is watching over Sophie and praying for her. Please ask for Todd when you visit in the future and thank him for everything as the fundraiser was a success!

               In the past few days Sophie has been experiencing some difficulty in stabilizing herself. Doctors have been struggling between changing her medications and fighting her infections. Some of the medications she is taking have some severe long term effects on the kidneys and can cause blindness and deafness. To combat these side effects, they are seeking a regiment of medications to help reduce the chances of damage. Sophie still struggles with the sedation as well and fights to become agitated in her bed while she moves and tries to breath over the ventilator.

               In the past few days Sophie has had some fresh CT scans (see attached pictures) where they discovered she now suffers from a collapsed lung, fluid in her stomach, and additional fluid in her lungs. Today alone they have suctioned about a cup full of fluid from her lungs alone. Based on the CT scan, Sophie had a minor surgery where they inserted another drainage tube into her stomach to drain a pocket of infectious puss; still fighting infection days after getting super strong antibiotics. They say her lung will repair itself during therapy later in recovery. SO....for now there are few answers in Sophie's state. Without any real direction for recovery and the ongoing fight to lower her oxygen intake, we feel like we are standing still; doctors tell us she is recovering slow but fairing well, and we hear nurse saying her lungs are fried from the oxygen. My guess is as good as any.

               Going into this we know there was a chance she would not recover from the Hepatopulminary condition she suffers from and always felt she would fight through her condition as expected with the liver transplant.  We were told her new liver would allow her body to repair the condition and she would breath fine on her own. After several weeks, doctors think the breathing issue may be separate from the actual liver condition and the symptoms masked one another. Searching for a cure or viable treatment option, doctors have called all major hospitals in the US from Boston to Duke searching for answers without results as no one has seen Sophie's condition before in such a young child.

               As far as visitors go, we are allowed to have visitors and you are welcome. We feel like the doggie in the cage all day awaiting a walk or going to get some food. So come visit and take us for a walk!!! This room is small and fairly boring to look at...the key is passing time till Sophie awakes. This coming Saturday 9-5-09 is Sophie's 1st Birthday and we will be having cake and such here in the hospital for her. We are praying she will be awake for visitors by then.

               Oh yea.....Savana is home and recovering well from her ICU stay with Sophie at Georgetown. All medication and treatments worked great and she is having a blast at home.

8-31-09

Today has been the hardest day our family has ever dealt with. Today Sophie's lungs started to bleed and she has been unable to maintain a stable condition for any amount of time. After several talks with all medical staff and doctors we have come to the conclusion that there is a very strong possibility Sophie will not survive in her current state. Saying this, were not giving up on her, but she is in a great deal of pain and she should have been getting better 5 days after surgery; here we sit 3 weeks out and her health continues to diminish. Today her spirit and little personality is fighting stronger than her body is and she is very week. Doctors have set up a meeting in the morning to meet with us along side social workers! Holly and I fear we are going to have to make some tough decisions as Sophie is breathing only on the ventilator at this time. At this time we have canceled any plans for her birthday party this coming Saturday. We pray she will have a belated Birthday at a later date. Please keep Sophie in your prayers.........

9-2-09

After a tough few days and nights, Sophie has decided to fight a little harder. On the 31st we called our family to see Sophie at 11PM as we (including the doctors) thought the fight was over. I even had a dream with her sitting in a open grassy field chewing on her penguin telling me not to give up on her!!! Maybe it was the lack of sleep lately?? During the meeting with the doctors and the social worker we discussed Sophie and how close she is to going to heaven. She is as critical as they come and she is having complications that are defying medical knowledge. In her current state they need to give her a tracheotomy to help her get back on her own breathing and to switch her from positive pressure (ventilator) to negative pressure (breathing by sucking air into her lungs). Using a trach vs. a ventilator will be much less invasive and it has fewer complications and risk of infection. Right now Sophie is too sick to go into surgery and they cannot perform the operation until her ventilator setting are greatly reduced. Furthermore, there appears to be some leaking from her liver and it seems to be healing and leaking and then healing and then leaking again. Now is not the time to fix it and they feel over time it will correct itself. Other issues discussed during the meeting are that there is a study where kids like Sophie do not start to recover for at least 3 weeks following surgery. After discussions with specialists throughout the world, it has been determined that only time will tell with Sophie. We were advised we will know what direction we were going in the following three days. The last discussion was that Sophie could meet God any minute without notice and we talked about Sophie being a donor in such a case. Remember only weeks ago we prayed for Sophie to get a liver knowing it would be at the loss of another's family member or child. Not forgetting where we came from just a short time ago we made some decisions if that time came; and yes, Stacey was involved in the decision process.

After the meeting, I had a long talk with Sophie into her little ear discussing her future red wagon rides, table dancing, and picnics in the park. I did not tell her I stole her favorite penguin and book to keep in my back pack, but I did tell her there were presents coming for her birthday. With her we prayed for a sign of recovery...just some sign that she will get better. As a parent it is scary to think your child's Birthday is so close to being the same day they may pass and it makes for a tough decision as to what to do. Not to mention the thought of celebrating her birthday while she lies there grasping for her life; Birthdays are to celebrate life and symbolize the beginning of another year??? This being said, we are having a family party for Sophie and her room will be decorated by the child life specialists here in the hospital. Any gifts or cards can be sent to Sophie's P.O. box on her website as there is little room in the hospital.

Today we sit in her room watching her oxygen levels rise a little and her ventilator setting drop; this is a positive change. Doctors continue to call specialists around the world and seek advice while attempting new strategies to combat Sophie's lungs and capillaries. We pray today that her improvement is a sign of her going in the right direction and she will continue to heal. Sophie is far from giving up and we have been told by doctors that her will is stronger than her body. She is tough and she wants that next wagon ride with her sister!!! I know people are asking what they can do for us and I have come up with an idea! Next time you have the day off from work, a few minutes to spare, or some extra time when your little one wants to color, watch TV, or go to the park, DO IT! Forget about everything and make the time! The feeling I had calling my family to say goodbye to Sophie the other night was the lowest point in my life and all I thought of was....."Did I spend enough time with her, no more wagon rides, no more parks, what do I tell Savana?" Trust me....make the time and do those things. Even spending every day off with my girls I felt like it wasn't enough sitting on the bench making those calls on the 31st. So there you have it. Make time and spend it with your little ones. Take photos and retain them because they are you visual memories to keep forever.

Topping it all off, upon getting home late on the 1st, Savana awoke at 2am, walked into Sophie's room and sat on the floor asking for Sophie and telling us she wasn't moving. Having her aunt staying on the mattress on the floor, she pulled her covers off and told her to move because it was Sophie Pie's room and she had to go. Sophie Pie is what Savana calls her sister...

Being that Sophie is so close to the edge in this fight, we are restricting her party to direct family and the Shepherds. We have been told we need to cut back on the vast amount of visitors because Sophie tends to get a little wacky with her stats when people talk in her room. For now we ask that visitors please call prior to heading up and limiting visiting hours until 5PM. Please call prior to visiting so we can make arrangements. Today we plan for the party decorations in Sophie's room and pray she is here for her own party. Maybe the positive atmosphere in the room will bring her renewed energy and help in the healing process.

Thanks to everyone for all your support and visits as they help us pass the time and keep our minds well rounded.

11-12-08

At this time we have been working with the doctors at Georgetown to find out if Sophie can accept a living donor as a transplant. We visit Georgetown Hospital every Tuesday to have her blood tested and her stomach checked for swelling and possible complications. At each visit Sophie gets her vitals taken and is weighed. There has been some weight gain and Sophie's poop has changed somewhat to a green color. Since they cannot get blood from Sophie, they are unable  to tell if the operation is starting to work. Either  way, we have been informed the transplant is moving ahead because she will need it sooner rather than

later.

Our goal at this time is to see if Sophie can get a living donor or needs a cadaver liver. We have been to Georgetown each Friday attempting to get Sophie's MRI completed so they can see the total picture of the liver and vascular system. Due to Sophie's Situs Inversus, her system is wired in its own way; unlike you or I. Its like being a mechanic and working on a car you have no idea where the wires and mechanics are located. Without the MRI, Sophie's surgeons could be caught off guard during a transplant and unable to locate veins    and arteries, or cut into something that should not be present!  After seeing Sophie's blueprints, we will have more answers to what they will be able to do for her. All we can do is pray, pray,  pray. At times like this you are quickly humbled and learn the only thing you can do for your child is to take them to  the best place for treatment and pray they have the knowledge and ability to keep your child healthy and alive. Everything else is out of your hands and left to the  Lord above.  In the last few weeks things have been moving slow and two MRI appointments have been canceled due to Sophie's blood level being off balance. Last Friday,  Sophie's potassium was too high and they were unable to  put her under anesthesia for the MRI process due to fearing her heart could go into erratic patterns and fail. Thus, we again await for the next Friday to see what they can do. Again, Sophie is placed on more medicine; this tops the list at 12-13 medications per day. As Sophie gains more weight and gets bigger, we await her MRI and anxiously want to know if Holly will be able to give Sophie the gift of life.

Sophie Grace medical updates and progress reports...

11-18-08

   Today we again visited GTU where Sophie was evaluated and checked up on. Our new today was refreshing as Sophie looked good and her doctors were pleased with her vitals and skin color. There was some concern reference her labored breathing and swelling on her left side, but it was assumed it was the result of her hernia from the operations and the swelling liver in her belly pushing against her lungs. The good news is they feel the Kasaii operation may be working and some bile may be flowing through her intestines. Overall, it was a good visit and we are going to have to go back to the lab and get blood taken sometime this week as they were again unable to get blood from her to measure her liver processes and bellierubin level. So far a great visit and we ended the night preparing thank you letters for our fundraiser sponsors.

11-21-08

    During today's visit Sophie went to GTU to get her blood taken to prepare for her liver MRI. After several needle sticks, the nurses were able to get blood into a vial from a heal stick, but before they could make it to the lab the blood had clotted and was not able to be tested. Upon arriving home in King George, we learned the blood was not able to be tested and Sophie would need to come back for more blood tests; that being they can get testable blood. So, we still have little knowledge of  Sophie's future transplant and Kasaii function at this time. And we wait......

12-10-08

Today's date, Sophie went to her Cardiologist to have her heart examined. During the visit we learned Sophie's little hole in her heart did not close and she will need to have another operation. The doctor said she will need a "open heart" surgery when she is about two years old. The hole in Spohie's heart is located on the top of her heart and it will need to be fixed for Sophie to have a normal life Sophie grows. This being said, Sophie will need to have a patch put in her heart to block the hole and fix the issue. We will be returning to the Cardiologist in the next three months to learn more.

12-19-08

On today's visit, Sophie had her blood taken by Dr. Bell who was the first doctor able to get enough blood to run her liver function tests. after a little yelling and screaming, out came 4 vials of testable baby blood.  After waiting several days, we received our fist good news; "Mrs. Nelson, we have the results and it appears Sophie's levels have dropped to a safe level. It must be the operation is starting to work." after calling Dad at work to tell the good news, we all settled in for the best Christmas yet! Miracles do happen at Christmas.  What else would you call it? Especially after getting an apology from the surgeon stating the operation did not work. WOW- Go Sophie!!! Now we hope her liver holds out for a few years until her transplant. For now we will work on her heart. The next cardiologist appointment will be in March where they put a tube in her mouth and check her heart from inside her chest to locate the fourth valve and measure the hole.

02-24-09

During todays visit we learned Sophie is begining to have complications with her Kasai operation. We were told she is becoming very itchy; a common sign that she will be in need of her liver transplant sooner than later. The itching is caused by chemicals being left in her liver that were left unprocessed and making her skin feel itchy. Additionaly, Sophie is feeling a bit yucky and keeps sticking her tounge out of her mouth as is she is trying to get stuff out of her mouth. All signs of her liver possibly having issues.

Though we thought her Kasai operation was working well and her liver levels were dropping, we learned today that her levels are not droping enough and we will not know if the Kasai worked till she is 7-11 months old.!!! So again we wait and wait. However, we know Sophie needs a heart operation and they are having a issue finding her fourth heart valve. As such, we were told Sophie would need to take care of her heart before her liver transplant could be performed. Since she needs her heart operation before two years of age to live past 30, we are assuming they will be doing her heart operation soon since her liver seems to be getting worse??? or so we think??? who know at this point.  Next week we are off to the cardiologist to see where Sophie stands on her heart.....and we wait!

03-10-09

         During the past two days we have been staying in Georgetown Transplant Center again due to Sophie getting a bad viral infection. Besides some dehydration and a little spit up, Sophie is doing better and is back home tonight where she can sleep in her bed and we can get a good nights sleeping our home. You know the hospital is becoming a second home when visitors can come to the information desk and they know where Sophie is without looking her up. Also, the nurses and doctors love to see Sophie and get a kick out of her smiling and laughing now.    

After the stay in the hospital, we still have no answers on her liver transplant other than her levels are not where they want them to be at this point following her surgery. We will just hang in there and keep praying that Sophie will hold out long enough and the timing will work for her to get a liver.

04-06-09

Today we received a call from Sophie's Cardiologist who stated they will need to proceed with Sophie's Heart operation to fix the hole in her heart. All we know at this time is the preoperative appointment will be this Thursday in Fairfax. We will update the site as we progress through this process.

04-21-09

During today's visit we learned several things to come. First is Sophie may suffer from her heart operation causing her liver to fail sooner; maybe as soon as months following the surgery. Second, Sophie will not be able to accept a living donor and she will need a transplant from a complete liver. Third, she needs to be in the 50th % in weight for her age and she is in the 3% group for now. Thus, she is back on her  feeding tube and we need to fatten her up and get her chunky for her heart operation in the next two weeks. So no good news for now. Hope to have some happy news soon.....

5-5-08

Today we visited Fairfax Hospital to get Sophie through her preoperative testing and prepare her for her surgery. Originally she was supposed to be getting her surgery first thing in the morning on Wednesday, but we have been told she will have to wait until Thursday because she will have residual dye in her blood and they need to wait till it is all out. At the present time we are not so worried about Sophie's heart surgery as we are about her liver failing from the surgery; this has been seen in similar cases.

The good news for now is Sophie is on the transplant list just in case her liver begins to act up. Were hoping things go well and look forward to providing you with good news in the coming day.

5-6-09

        Today was the best day to date. Having been preparing for Sophie's surgery, we planned to remain in the hospital for about two weeks so they could perform open heart surgery and account for any side effects or possible complications. Prior to doing the surgery, Sophie had to get a "CATH" procedure where they placed a catheter into her veins and looked at her heart from inside to better see the hole and prepare for the surgery. In addition they injected her blood with a dye to see where her circulatory system was at; this is due to her reversed organs throwing things a bit out of order inside.

During the procedure, we were informed Sophie's test showed the vein they had been looking for and that it was in the correct place, just hidden from view from the cardiogram. When looking into her heart, they also learned the hole they were preparing to to fix with the open heart surgery was actually smaller in lower in the heart allowing for the hole to be fixed with a titanium plug. As we waited, the surgeons used the catheter to implant this metal device into the hole in Sophie's heart by threading it through the tube in her veins. We also learned that Sophie's main artery that should run from her belly button to her heart makes a loop around her body and zig zags across her chest???? Well, at least it works.

On Thursday the 7th, Sophie came home and returned to normal life. Having dodged the open heart surgery, we just have to await the liver transplant. And we wait.....

This is what a happy little girl looks like!!!

6-29-09

As most of you know, we have spent the last month testing Holly to be Sophies donor and give Sophie the smaller of her liver lobe. Today, we learned that Holly will not be able to give Sophie her liver because Holly has a gene that makes her prone to bleeding and having some sort of clotting issue. Due to this recent discovery, we now need to find a living donor that has a type B+ blood type. Don't know what we do from here, but I assume we wait untill Sophie gets really sick and begins liver failure and reaches the top of the transplant list. Lets pray she isn't too sick at that point to get a transplant. For now we pray.......

7-16-09

       On 7-14-09 Sophie was admitted into Georgetown Hospital and diagnosed with Hepatopulminary Syndrome. This is a medical condition in which Sophie's lungs cannot process enough oxygen through her blood and starves the body. They feel the root of the condition is caused by her liver failing and causing her lung vessels to restrict. This being said, there is hope Sophie can recover from some of the issues associated with this once she gets her liver transplant. At the time, Sophie will remain in ICU until we get further information. There is a strong chance Sophie will remain on oxygen until her transplant and she will most likely be kept here till the operation. Time table was said to be from 3-8 weeks. We hope to know more soon and will keep updating her site with new information.

7-17-09

This morning we learned Sophie will be kept at the hospital awaiting transplant. Her condition is poor due to her breathing issue and she will need to get her transplant soon in order to reverse the breathing issue. There is no exact timeline for the operation but Sophie has been requested to be moved to the top of the transplant list for our area. Regardless, those interested in being a living donor and who are serious, will be considered, however, they need to be persistent in the testing process to be taken seriously and to be approved by the board. I have been told it is hard to get donors approved if they are not related to our family!!?? Additionally, we cannot get involved in the process and the donor needs to be proactive due to the many ethical issues reviewed and considered during the process.

For now we are getting moved into our room here and keeping ourselves busy with Internet and books. All visitors are welcome as one of us will be here at all times.  Hope you enjoys the pictures we are posting below.

7-18-09

Today we have learned little more about Sophies condition other than things seem to be more sever than we had previously thought. We have been told Sophies lungs are having difficulty and she should become better and her lungs recover once she gets her liver transplant. Furthermore, Sophies lungs will eventualy reach a point of now return where even the liver transplant would not help her lungs recover and her conditon would be fatal. Right now we dont know where she is in within the lung condition. We can only pray that she will get her liver transplant soon and her lungs will recover. And again we wait. .....more as we get it.

7-22-09

     Today we got some news about Sophie's condition and some sort of ideas where this thing is heading. First I would like to thank everyone for all you have done and are doing for our family. We cannot thank you enough for all the calls, visits and other gifts being provided to Sophie. During a brief conversation with the doctor, and I mean brief, we were told surgeons have been meeting to see what they can do surgery wise with the transplant operation. See, Sophie's organs area reversed and she only has one major arteries going into her liver when she should have two. Due to this unusual anatomy, Sophie needs to have some arteries changed, graphed, or fixed in order to make the transplant work. One thing that has been brought up is they may take her liver and small bowl out and do a multi-organ transplant where they give her small bowls and liver as a package deal!!! Some how it makes the operation easier and will assist in handling her strange vascular system. Either way there are no answers and they are still seeking living donors at this time.

     Currently Sophie is stable but they have not been able to maintain her oxygen levels leading to changes throughout the day. As long as she stays below 10 (scale of 1-10), we are ok. If she needs to go back to 10, then they will put her under and utilize a respirator. We are hoping her lungs make it till transplant. So, we are still waiting to see if she was granted the points needed to raise her to the top of the transplant list and have been getting little news. In fact, we get bits and pieces here and there but nothing solid. It like living your life third party and waiting for another's tragedy, a skilled surgeon, and another gift of life while you stand by idle unable to do much but wait and comfort your daughter. The only relief is that Sophie is too young to know what she is going through and thinks all the attention is great.

   7-23-09

     Today is the same,  Traffic on I95 is terrible at night and during all hours of the day, and living out of a gym in hospital rooms suck. Still little word on Sophie and her status on the transplant list. Last night Sophie's oxygen level began to fall again and we had to argue with the doctors not to put Sophie back in ICU. After some rest and relaxation, Sophie calmed down and her levels returned allowing her to stay on the transplant unit. Due to her oxygen needs, Sophie has now been placed into a bubble for the remainder of her stay/transplant wait. She has a little plastic tent that blows air into it for Sophie to breath and keeps her isolated with very potent oxygen. Hers is old so we are rigging it to stay up and keep Sophie from pulling it down and  laughing as she suffocates herself. Still, to her its all a game and she loves playing peek with a blanket.

       

7-24-09

Bad news. .....

    The national organ center or whatever they call themselves (UNOS) have denied Sophie's request for the 40 points. Right now she will remain at the bottom of the transplant list. They did not grant the approval of the points because they deal with the liver issues and not the lungs. They understand that the liver is causing her lungs to fail, but they are not taking the two issues into consideration. They see each issue as a separate issue. This is how the system works!!!! So, for now they will try to appeal the decision and wait for another answer. In the meantime Sophie continued to go up on her oxygen and there is no improvement in her lungs. They need to wait for her liver to go into failure to get her points up.... but by then her lungs will be too damaged and even the liver transplant will not help her survive.

    It seems the doctors here are very disappointed in the decision from the organ center and all they can tell us is, "Its bad news and were sorry." Well for now we will hope someone somewhere is a match for living donor........

7-26-09

    Today I built Sophie a new tent to live in. As you can see by the picture below the original tent was not doing the trick. Here she is thinking she has a new playroom!!! Lets hope the hospital lets us keep using it. The other optioin is sedating her indefinitely until transplant.  So far it has exceeded the requirements for her oxygen and the nurses and doctors seemed pleased.

7-27-09

    Today was a good day as we are starting to get some answers. The center has started testing someone to be Sophie's living donor; and man they move through the process. They say all testing will be done in two days. However, that's if the person is a match. With the testing underway, the doctors have begin to talk and discuss the surgery to come; if we have a candidate. The bad part is they still are not sure if Sophie can get a living donor and will be doing two MRI tests on her body tomorrow morning. With Gods help, they will be able to do the surgery and create a new vascular system to put the new liver piece in. If not, Sophie will need a multi-organ transplant with liver and small bowl connected. The down side is it will have to be cadaver organs and the list is very long. That being said, Sophie's vascular system will not last long enough to wait. Remember, I have been hanging out with a family who's' daughter has been waiting a year for liver/small bowl and has yet to get it!!! And they would get it before us if one arrived. So as we sit, it looks like living donor or its a no go at this point. We will know Wends......and we wait. Seeing the pattern yet?  And , "yes." were keeping the tent!!!

7-29-09

   Today was enlightening. First off, we got news that Sophie can be the recipient of a living donor. For those following Sophie's Journey, you will remember she had a weird artery going into her liver where she should have had two. Due to this one arteries, Sophie needed surgeons to split the arteries or replace the entire liver/small bowl. After having a living donor go through the test, we learned the surgeons can make the living donor work and (God willing) fix Sophie's issue with her liver.

    In the meantime, I have been speaking with other parents going through similar situations and teaching them how to start their own website and the process for starting a medical account. I have been surprised at how much people don't know about this transplant world and the amount of information that doesn't get out that should be out there. In the meantime, you may see other families referenced on the website who need help too; I will refer to them as Sophie's Friends.  Together, "us" parents have began to act like kids ourselves...goofy at times dealing with all the stress. Meeting people from all walks of life and professions, we come together under the love for our children and share our stories. We have even gotten to know security officers, parking attendants, cooks at the restaurant, and most importantly the bartender at the hospital bar!!  Even the delivery drivers from local eateries know us!! Thinking of getting a shirt stating, "My kid goes to Georgetown." There are some cool T-shirts at www.cafepress.com where they sell cool donor/donate life shirts.

7-31-09

    Today we spent the day watching Sophie as she appears to betting worse. Her oxygen levels seem to be dropping fast when she is taken out of her tent. In the past week she stays about 70 percent when she gets out of the tent, but yesterday she was in the 40's!!! We pray Sophie is not getting worse and she can remain clam till her transplant. Everyday she become more active and try's harder to escape her tent. She pushes, stands, and pulls at her door to get out. Since she gets board, she gets frustrated and cry's, carrying on for hours. The issue is she us literally killing herself and her vascular system. Even with the tent, it is only days till they will sedate her and put her on a respirator at this rate; she is to active for her own good. Again....we wait and pray.

YES.....I see the pictures and I am not a bad parent because my Girl hits the pipe for her hit of "O," and I allow boys in her bed at such a young age.........FYI..I keep the lights on and don't leave the room. I chaperone!!! Never know when a dirty diaper might ruin their fun.

8-9-09

WE HAVE A STRONG MATCH FOR TRANSPLANT!!!

Today we have some more news about Sophie and her condition. As we stand, Sophie seems to have a slight fever and the doctors are working on figuring what is causing the fever. Since we now have a person ready to be a donor, we need to find out if Sophie can go to surgery or not. If Sophie has a virus, then it could cause issues with her transplant; if its a bacterial infection we need to get it cured before transplant. So, this being said she is getting her blood tested tonight and hope to know tomorrow. Hope to have goo  news soon.

8-1-0-09

Today we met with the surgeon and doctors involved in Sophie's treatment and had the chance to ask questions and speak about the current "process" behind the scenes. After several minutes all our worries and concerns were addressed and we were enlightened with how the process is moving along and people are being tested. Special thanks to the staff for looking out for us and scheduling the meeting as it was a breath of fresh air and we feel assured everything is being done that we can do.

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Otis165lbs7yrsNeapolitan Mastiff

Sheltered MOMMA's boy!

Jimmy95lbs8yrsAmerican Terrier

Another MOMMA's boy....

8-15-09

Yesterday was Sophie's transplant surgery. She went into surgery with her living donor, Stacey Shepherd, around 8:00 in the morning where they were in the operating room until 3:30pm. After surgery Stacey was doing great and having a conversation as she exited the operating room. This being said, she came out great and went through the surgery without any issues. During the procedure they removed a piece of her liver and placed it into Sophie, leaving Stacey with a 6 inch scar on her stomach.

Sophie on the other hand, came out of surgery leaving the doctors a little puzzled. Though her surgery went well, Sophie puzzled surgeons with her anatomy and her veins in her stomach. Sophie had severe scaring on her liver and due to the previous operation the intestines had bonded with her liver. In addition, Sophie was much sicker than previously thought as her liver was in very poor condition and hard as a rock as it was described to us. This was unusual because all signs with her blood showed the liver functioning well and her breathing issues being "not so related to liver failure." Again, Sophie surprises people. For now, Sophie is in her room recovering and her new liver is working well. Upon returning to her room, it was immediately noticable that the new liver was working as her color was back and her feet would turn pink immediately after pushing on them; this was not the case for the last few months.

For now Sophie will be on a respirator for the next few weeks until her breathing comes back to normal. We have been told it will be a bumpy road and her body will need to get the vessels back to normal for her to breathe and process oxygen again. IF......Sophie recovers from the breathing issues, we will wait 30-40 days and then start to see improvements. For now she is sedated and breathing by machine. But, compared to her condition prior to surgery, we are feeling good and going in the right direction. It has become clear that if surgery didn't occur when it did, Sophie was down to days until she was in real big trouble. Today Sophie is looking better than she has ever looked!!!!

More to come soon............enjoy the before and after transplant pictures. 

8-16-09

Today Sophie is doing better. Her breathing appears to be stronger and her system seems to be getting more oxygen as her blood oxygen tests are rising. It is still to early to determine if her lung issue is getting better or if she is just recovering, but we are glad to get news and see improvement on her part. As far as her operation overall, Sophie is experiencing some leakage from her liver/intestines from the operation. Currently its not a big deal and they expect its from the hook up to her new liver and it will heal itself over the next day or two. In the case that it continues to leak, surgeons will be going back in to correct the issue. Almost over the hump....If Sophie does not improve today with the leak from her liver by days end, we are looking at another surgery tomorrow afternoon where they will go back and explore where the leak is coming from. We are hoping this is not the case and she continues to make progress.

Stacey on the other hand is doing great. She is off her IV fluids and the main line into her neck has been pulled out. Upon coming to see her today, we found Stacey walking around the unit stretching her legs. One correction I need to make is that Stacey is not in the ICU. She has a regular hospital room and is able to visit and sit around. Mostly she is here for observation and daily tests for her slivered liver and pain management.

If you visit, just call my cell phone to find us as we are bouncing between Stacey and Sophie within the hospital. Please keep in mind Sophie is only able to see immediate family and children cannot visit her; this includes her own sister!!!

Please help!!!!  Due to Sophie's condition, we have to change our life style including self dispensing hand sanitizers at the entrances to our home, modify our HVAC system, and consider changing carpets. With Sophie's unusual condition and her liver transplant, she is very susceptible to infection and organ rejection. With the slightest cold being life threatening, we now need to have our dogs adopted by someone who will care for them. If they cannot be adopted in the next few weeks, we will have to send them to the shelter. Please help us find a family as they are wonderful animals and very laid back and friendly. They can be described as loving couch potato's. Both dogs are male and about 8 years old. They come with all their supplies, leashes, collars, electric collars, and feeding/living supplies. Here are some pictures of them showing off for the camera.

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Savana in the room next to Sophie with her condition.

9-3-09

Today Sophie remains in critical condition but is showing signs of improvement. Her ventilator settings are lower and the percentage of oxygen in her blood is not considered toxic to her allowing her lungs to heal somewhat. Still fighting and with the will of an army, Sophie is hanging in there and taking on everything coming her way. It seems her little body is again fighting an infection and we hope it doesn't affect her recent improvements.

Keeping her happy, Sophie is now listening to classical music and lays next to a CD player with music playing just a foot from her little ears. They say she can hear it and it will make her smarter. Hearing this from the doctors I sleep at night with the volume turned up a little louder and my pillow facing the radio...no results yet for me but over time I hope it helps me too! Everything else is still the same and we have been told this could take yet another three weeks until we see signs of improvement.

9-4-09

Today has proven to be a real blessing by divine design. Today's plans were set in place two days previous where I was going home and Holly was to stay with Sophie. Furthermore, Savana (Sophie's sister) has never visited Sophie following her surgery. Making it even more weird, Stacey Shepherd was to be at home all day completing some work via computer. This is where things get weird...

During the previous days, we had made plans for The Pangretics, Volpes, and Bices to visit during the evening and by chance I decided to visit Sophie and Holly tonight and finally let Savana see Sophie. Furthermore, Stacey called me while on my way to the hospital and decided to join us in a visit to the hospital. Upon arrival we met with Ryan, Jamie, Kim, Joe, Darren, and Rebecca in the room and made plans to eat with our favorite cook Peter across the campus...off we went following a short visit.

Once dinner was underway, Ryan gave a short Speech about Kim and Bice and their recent struggle with their daughter who passed away; her offered a toast in her honor and spoke of their strength and family. Meanwhile, Peter got a few bottles of Champaign and glasses for a second toast. For a while we spoke of Stacey and Sophie's Birthday and mentioning how Stacey was the reason Sophie was here today to celebrate her first Birthday.  Following the speech, we were presented with a large gift bag for Savana where she unwrapped a tiara and a new purse. Savana was recognized as being a wonderful sister and crowed as the princess for the night. She stood while we placed the tiara on her head and clapped while she put her new fake make-up on and organized her new purse.

In celebration for Sophie's birthday, Holly was presented with Sophie's present. Holly opened a little jewelry box where she found a small necklace with a beautiful birthstone representing Sophie's month of birth. Furthermore, during the presentation we were told it was for Sophie and Holly was wear it until Sophie was old enough to have it passed to her. With all being said and gifts exchanged, it was a very emotional night with some very close friends. There was no way to explain how Stacey, Savana, and I all came together during that evening when all plans and schedules were against it, but we did and it made for a very memorable night.

Thanks to the Pangretic's, Bice's, and Volpe's for making a very special evening after a very trying week.

9-5-09

Happy 1st Birthday Sophie!!!!

You made it you little fighter!! We love you...

      Today we celebrated with a Elmo cake made by Robin Lilly who is Alex Bakers Grandmother (See Sophie's friends). Robin is a professional Wedding cake  designer and made Sophie's cake and brought it to the hospital for her the day before her birthday. During the celebration we ate cake in the presence of Sophie and sang Happy Birthday to her!!! The day ended with Sophie and another day getting a little better.

9-6-09

After several days of watching and waiting, Sophie has decided she has scared everyone enough and appears to have made up her mid to start getting better. over the previous days, Sophie has allowed her ventilator settings to drop in half and went from processing oxygen in the 70's to the 97% arena. It appears her lungs are improving and she is getting some much needed healing in her lungs. Although she is still in critical condition, it appears Sophie's health is improving and her chances of pulling through are getting better. Every day her health becomes a little better and today was the first time she opened her eyes in three weeks and grabbed our fingers.Still sedated heavily, She was able to know we were here as her numbers were showing a strong reaction when we spoke to her.

At this time Sophie is getting stronger and recent test show her bellirubin levels on the rise. At this time they are worried about it but feel they can fix it with another simple surgery or procedure. The thought at this time is there may be a small blockage in her liver or in the area where her liver drains into her intestines. Either way they can fix it. The major issue here is her lungs and as it looks today they are getting better. One thing at a time while we walk to the light at the end of the tunnel. More to come as we learn where we are heading next.

9-8-09

Sophie is about done with the ventilator. Today Sophie seems to be improving enough where they are considering taking her off the ventilator first thing tomorrow morning. Since her drastic improvement beginning just last Monday night at 0200, Sophie seems to have healed her lungs and getting strong enough to breathe on her own. Furthermore, at this time they are not planning to give her a tracheotomy to help her breath.

If and when Sophie comes off the vent, it seems she will have to stay in the hospital a few weeks until they will give her the all clear. We are hoping we will be able to hold Sophie in the coming days and cannot wait till she is up running around again. We know she will need physical therapy and additional help learning to eat again, but coming from where she has been its little hills to travel over.  Hope to have some more good news soon!!

9-11-09

Hello and good news. So far Sophie has been off the ventilator for three days and is                         doing well. Having been on some serious pain medications she is now going through withdrawals as her dosages are being cut back. She has gone from liver recovery to rehab in two days. I have never seen a      baby in withdrawals before in the hospital and the truth it is scary!! Her eyes are wide open, looking stoned, and she gets agitated by the smallest things. Adding to the issues, every time she tries to cry she cannot and makes feeble attempts to scream while only emitting a weak scratchy whisper.

For now she continues to be recovering well and it is expected she will be going through withdrawals for another week or so and continue recovering from her lung damage (resulting from the time being giver 100% oxygen) for another few months. As always...thanks for everyone's support.

     Being September 11th, I would like to thank all those serving in the military and lawmen/fire rescue for their service. Without our nation having such a courageous fighting force with unselfish and dedicated soldiers, we would not have a nation with the ability to provide the services and heath care we are so accustom to. At minimum Sophie would not be here today. Thank you for your service and your commitment to this wonderful country as your sacrifices make it all possible! God Bless as the victims of 9-11 protect you from above with their maturing angel wings!!

9-15-09

Hello all,

Sorry for the wait with updates but I have been having some difficulty with my new email account and am in the process of getting a Google Group put together where people can subscribe to Sophie's email updates and receive emails on a regular basis. More to come when I have it up and running.

In Sophie's world, she continues to get a little better each day but progress is still moving slow. Today she decided to take out her main artery line in her neck and begin playing with it while the nurse were franticly trying to stop the bleeding. Sophie on the other hand is still going through withdrawals and being in her drugged state thought it was quite funny. I noted the nurses were not laughing! other items on the Sophie list will be to add stitches to her drainage tube from her belly, cut the excess stitches from her inner stitches poking through her tummy, and continue lowering her oxygen.

Today we still reside in the ICU unit and are awaiting to get Sophie to the transplant recovery rooms down the hall when she gets off the high flow oxygen; this could take weeks! Hope to have the email group up and running this weeks.....

Our living quarters for the past few months including air bed, sink, counter, and the much needed portable table with cell phone.

Sophie after she fell asleep following the removal of her central line. Don't be fooled as she is only resting till she can pull other tubes and wires out of machines and herslef. The tape on her right neck under her ear is where she had her central line.

9-19-09  

 

What a wonderful day today. Not only do we have great weather, but Sophie is up and playing with toys and only her IV and her oxygen tube is attached to her. Sitting up and playing, Sophie is throwing things from her crib and trying to grab everything in her bed to include my ears and nose. The physical therapist thinks Sophie is doing great and she seems to be very strong considering her recent condition. I have to say she is giving us a run for our money as we are now fighting to keep her amused and are considering tying her up in her bed!!

The past few days have been a much needed improvement in her condition as she is now able to sit up and play and her oxygen in being processed in her lungs. Doctors still think she has a slightly collapsed lung and are pushing her to move and play. Sooo, Sophie forgot how to use a binky and eat. She thinks everything is funny and like to bite my fingers hard enough to break the skin!! Among other things, Sophie has also forgotten how to sleep. Somehow during the transplant surgery they removed that work from her vocabulary and the medication gave her recollection of the process amnesia.  It's like having a newborn that never sleeps and thinks the medical equipments only purpose is to keep her amused and watch the liquids squirt out when she pulls them free, pulls them out of her, and they throws objects across the room. Hope to have news about Sophie moving into her new room across the way and out of the ICU!!

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9-25-09

       After a few great days of Sophie improving, yesterday she began having liver rejection issues. Organ rejection is something she will fight for years to come and she will do so with medication and steroids.

During the recent issues, Sophie began to have her liver levels rise and her activity decreased a little. As we were told, Sophie was not given a strong dose of steroids following her surgery due to her breathing issues and therefore received only a small dosage. After weeks recovering, her immune system became a little stronger and discovered the new liver in her little body; being a foreign organ the body attacked it!! From here, Sophie was given a strong dosage of steroids and her level of rejection medication was increased stopping the rejection. Today she is doing much better and her system seems to have normalized. Also, her drain tube in her stomach is getting ready to come out tomorrow!!

With the new liver from Aunt Stacey, there also comes new life styles for Sophie and our family. If you have been following Sophie's story, you know she has 5 spleens, not one as in normal anatomy. With this condition, Sophie's immune system is weaker than most and she has a much lower level of protection per say. Adding to her fight against infection, Sophie is taking anti-rejection medication for her liver which further suppresses her immune system to keep it from attacking her new liver and a strong daily dosage of antibiotics. The longer she has her liver the less her body will try to attack it. And....we have not even mentioned her damaged lungs which will no doubt lead to future lung issues and sensitivity issues to everything you can imagine. Did I mention the anti-rejection medication also blocks the skins ability to block UV damage from the sun and increases her chance for skin cancer over 100%!! And it causes damage to kidneys which most likely leads to kidney transplant years down the road!! And who knows what else.

Living in such a big world, little Sophie will be under attack every day by thousands of little viruses and bacteria that can cause her infection and immediately threatening her liver. We have been told that any temperature over 99 degrees leads to her being admitted into the transplant center for immediate observation as it is a possible sign of infection and possible rejection; no chances are taken with transplant children. This being noted, we have had to make some changes around the house, to include among several: no shoes in the house, I change clothes at work, no sick kids allowed, no kids besides Savana for a while, Hepa system??, central air modifications, no more doggies, all carpet replaced, hand cleanser at every entrance, and an assortment of other changes. Yep, were turning a new page in our home. I think of the USA television show "Monk" often as I order things for the house. In addition, Holly and I are going to try getting away from processed food and get more natural food into the house meaning more visits to the famers market and I will start bringing home road kill to cook..just kidding about the road kill!

So how is Sophie doing today?? Well, She was slated to go home today but she has extended her stay in her new room. For those visiting, we are now in the larger original room with our own bathroom and sleeping area. Sophie continues to scream, laugh and play on a regular basis. If you consider 9am to midnight every day!! They have to knock her out with medication at night to get her sleep.  Considering all things, she isn't doing bad for a baby the doctors had all but given up on two weeks ago and came to the conclusion she wasn't going to make it. Oh yea, they waited until yesterday to tell us that tad bit of information; too bad we all too aware of that information and vividly remember that night. Go Sophie! Go Sophie!

We are hoping to get Sophie home next weeks and have her back in a clean, sanitized, and organized home! I have never wanted to get back to work so much in my life and the thought of sleeping in my own bed again sounds wonderful. As for Savana, she will miss the ongoing party and endless spoils as she adjusts back at home.  Here are some pictures of Sophie today while playing with Savana in her new room. Hope to have good news soon.

9-30-09

Sophie is coming home Friday!!! During the past week they have taken her off her oxygen and she no longer requires it to maintain her oxygen levels. Currently she is still fighting some medication withdrawals and is having some difficulty getting to sleep at night. After all these months she is down to just a feeding tube in her nose and an IV. Tentatively speaking she should be home on Friday as they are working on getting her anti-rejection medication balanced between rejection and organ damage.

       At home construction on the house continues and the HAVAC system is getting cleaned with the hopes we can add a HEPA system to the house to help protect Sophie's damaged lungs.

Once we are settled back into the house, we will be planning a party to celebrate Sophie's return and recovery. At this time Sophie cannot be around other children or adults for months in fear she may contract a cold, virus, or bacteria. Anything at all and she will be readmitted to the transplant ward for observation. I figure by now we should just get condo by the hospital for our family! There is no telling how long it will take until Sophie can be a normal kid and play with others, go to the mall, or grocery store, but it ranges from 6-12 months. Keep in mind Sophie was born with an already diminished immune system and her organ anti-rejection medication only weakens it more.

       Good news is she survived and she will again be home with our family. After watching small children pass and never go home in rooms around us, I am thankful for her recovery and looking forward to being a somewhat normal family again. Not to mention getting back on a normal work schedule.

See you all soon.............

10-3-09

      

SOPHIE CAME HOME SAT NIGHT!!!!!!!

         Saturday night around 10pm Sophie was released from the hospital and driven home with her family. After hours of waiting, Doctors agreed Sophie was well enough to be sent home and was released with her medications and all her belongings. It seemed almost unreal as we were packing up her stuff and getting all the paperwork ready for discharge...almost like we had been living another life or in a different universe the past few months.

         After packing Sophie's belongings and getting the wagon loaded up to take things to the car, I noticed the entire transplant ward went quiet. There were no nurses at the desk and all the rooms were closed. At first I didn't think much of it, but as we turned the corner to leave, the entire hallway was lined with nurses and doctors on both sides cheering and clapping for Sophie! Everyone was giving her hi-5 and saying good bye for now. Holly was crying as were several of the nurses. It was very emotional for everyone as Sophie was the underdog the entire time and she wasn't supposed to be going home by all practical medical knowledge. At that moment my 20 pound thirteen month daughter was my hero! She had endured so much in the past few months and came out smiling and laughing at all the nurses waving her arms and feeling better than she ever felt her entire life. I only hope she will one day look back at all the pictures and realize that she is capable of overcoming anything in this world!

       After a short walk to the car...still escorted by some nurses saying goodbye, I buckled her in and began looking over her medication! One bottle of anti-rejection medication = $1,200.00, and that was just one of 10 medications. I was again thankful for health insurance but I need to buy stock in that company!

Upon getting home Sophie was up and crawling around the house. Yep...she went in barley sitting up and came out crawling; she surprised even the physical therapists! After a hour or so of adjusting her bed, getting the feeding machine set up, and organizing her medications, it was Sophie's bed time. What I didn't expect was Savana throwing a temper tantrum because Sophie Pie couldn't sleep in her bed. Savana wanted Sophie an her room and when Savana went into her room, Sophie yelled and made every attempt to crawl into Savana's room. The next morning they were both playing on the floor in the family room and Sophie was laughing a mile a minute. Lungs and liver both working great.

       Today Sophie went back to the hospital at Georgetown to get her blood tests and her check up. She will be going for blood work and checkups twice a week for the next year or so they tell us. It seems like a small price to pay for having her home with the family.

So far Sophie has beat this battle and with medical technology and faith she will continue to recover and avoid being part of the 30% or so who need second transplants. Not to mention Stacey didn't give us a receipt or a warranty on her sliver of liver! Guess beggars cant be choosers!

       Thank you for everyone's support, visits, and acts of kindness while we were living in the hospital. We cannot thank everyone enough and we are thankful for having friends and family who cared enough to travel the road with us. We are truly a blessed family and will never forget anything throughout these past few months.  Most of all, thanks to the Sheriff's Office for allowing me the time to be with my family while I was going through this family hardship. Throughout the entire time they offered complete support and allowed me to be with my family unconditionally. I was the only father on the transplant unit who was able to stay with my family the entire time; no one could believe that I was a cop, but rather I was self employed or owned my own business. Thanks to all at the office and in the court system who allowed me the time to be with Sophie through her transplant.

       So from here we continue going through the daily routine of medications and hoping to avoid any major infections or rejection issues. If all goes well Sophie will be able to make her rounds and visit people in about three months. Back to work Wednesday for me and time to get back into shape, too much food and TV time on the air mattress in the hospital.

10-10-09

         Its been a week since Sophie has been home and we are doing well. Sophie has been back to the hospital twice for check ups and both times her medication and her vital checked out great. Since returning home Sophie has been crawling and grabbing everything she can get her hands on. We have never seen her happier in her young life and for the first time she has not cried at all and enjoys being a baby. With things going well and the the house coming together, Sophie is going great but she is still far from getting the all clear and has years to go until things begin to stabilize. For now we will enjoy every day and soak up all the good stuff! With Christmas around the corner we are looking forward to a great holiday and spending lots of time together. 

10-15-09

         Thursday the 15th Sophie was checked back into the transplant center at Georgetown again due to her liver tests coming back poor. During this episode Sophie was showing signs of increased liver enzymes and blood tests were all over the place. During further tests it was thought she had a block in her liver ducts and surgery was again mentioned. As part of her treatment, Sophie was given antibiotics and other medications for possible infections that mimic similar symptoms. Well, after a few days of living in the hospital it was discovered she had an infection in her stomach possibly due to leakage from her liver where they cut the surface during transplant.

         After a few days it was discovered Sophie had an infection as the result of her intestines being connected to her liver; this is the practice of fixing the biliary disease where there are no bile ducts present to make the natural drain. Today, October 10th, Sophie is coming home. She will be taking additional medications and will continue to visit the doctor two-three days a weeks to get her blood work and liver functions tested. We will continue to keep our fingers crossed as Sophie is far from being in the clear and her body is still healing from the original transplant surgery. 

11-17-09

WOW....what an improvement the last month has been for Sophie. First off, she is healing really well and she is already being lowered on her medication meaning her dosages are being lowered and her blood test are getting better every day. Yesterday was her last infusion of Cytogam!! Cytogam is a medication they flush her blood with to help in the anti-rejection treatments. Sophie was getting two dosages a month with each dosage being about the size of a coke can and costing about $10,000.00!!!!! Yep, that's right......$10K. Topping it off, each visit takes about 8-10 hours because she has to be checked into the hospital for the treatments which last about 4 hours...not to include lab testing and seeing her transplant doctors.

Now here is the big question??? Why is it that they place a kid like Sophie on house arrest and isolation due to the flu and other airborne germs which can make her very sick, but then make you sit in the lab for hours waiting with people sick, coughing, and breathing all over each other in a very small seated area? And if they need to check you in, you must first go to the emergency room and get through the crowd while waiting in the waiting room...need I tell you how many are suffering from the flu in D.C. this time of year. Just food for thought that makes us ponder things@#$%/ .

At home Sophie is now learning how to eat and is getting very proficient crawling around the house and pulling herself up on the toy box and other vertical objects that look interesting to her. She has figured out how to use the baby walker and is now starting to make headway with high speed crawling and spins when redirecting herself. I have to say every day is a new miracle because she has far surpassed every doctor and therapist's expectations!! Without looking at Sophie's scars on her stomach and her feeding tube, you cannot tell she is different than other kids her age.

For now we are continuing to take Sophie to the hospital every week for blood testing as it will be years till we can let our guard down reference organ rejection. At night Holly still gets up at least three times a night to give Sophie medications and another three times to stop her feeding pump from beeping and making noise when it runs out and the line becomes clogged. Thank you all for keeping up with Sophie and her recovery from her transplant. I will be getting some new pictured on the site soon and hope to have a open house once she gets off isolation. In the mean time, enjoy every little miracle we are blessed with!

12-9-09

    Today Sophie saw her cardiologist and was given a clean bill of health. her heart has been healing great and the hole is being covered by the titanium plug just great. At home Sophie is beginning to pull herslf up and cruise on her own. It should be a matter of time until she starts walking, suprising all the doctors and the physical therapists. Otherwise, all blood tests are showing positive results meaning her liver is still working and rejection is not an issue at this time. Here are some recent picutes of Sophie adjusting to her healthier lifestyle..........Merry Christmas and happy Holidays

2-21-10

In recent events, Sophie has been having some difficulty with her blood results leading to more testing and hospital admissions. As of today's date, we are awaiting results from Sophie's most recent tests where doctors biopsies her intestines and her stomach for issues with recent allergic reactions. 

Most may not have heard about Sophie's most recent admission, but she spent about a week in the hospital after suffering a very severe allergic reaction where her her lips and skin swelled to the point of blocking her airway. Today we still worry about the reactions, and we really have no way to tell what causes them as Sophie cannot be tested correctly for allergies with her immune system compromised with the anti-rejection medication and her polyspleenia condition. Our best course of action is to watch her very closely and keep an epi pin in her bag.

Another issue arising was the fear she was having rejection issue because her blood tests were coming back very high. Currently they are not sure what is going on and think it could be a blockage in her liver bile ducts. As such, Sophie had another MRI this past week and we are awaiting the results. If she does have a blockage, it can be treated through another surgery, however, we are not getting ahead of ourselves too soon.

Otherwise, Sophie is enjoying life and running around (crawling) like she owns the place. We continue to feed her with the feeding tube as she doesn't like to drink and we are planning to start taking her to a feeding clinic in Charlettesville at UVA for help in this matter. Hope to have more news on the test results and I will try harder to keep this website updated. Hope everyone made it through the blizzard of 2010!!

3-10-10

Results are back and it seems Sophie's tests are all good and the hospital has no idea what happened. We'll take the good news and are heading to UVA this week for feeding and eating evaluation with the staff. And.....................drum roll..................drum roll..................................drum roll....................

Sophie is eating and drinking out of a cup and....................................

TODAY SHE TOOK HER FIRST STEPS WALKING ACROSS THE FAMILY ROOM!!!!!!

Needless to say we have been blessed to get to this point where she can get rid of her feeding tube and start acting like a normal little girl. And Savana loves having a little sister who trys to keep up with her. With the feeding tube gone, I can stop looking at people and stating. "What!" As people stare at little Sophie like she is strange. Little do they know what she is all about.

5-2-10

So here is the update everyone has been asking about through emails and calls.....

Recently Sophie had been admitted to the hospital (last week) for another liver infection. It seems Sophie is prone to a specific type of liver infection because her liver was not from a related donor. To clarify this, Stacey is like family; however, her organs come from the Cummings DNA and not the Nelson DNA. For this reason, children like Sophie have infections related to this type of liver transplant. Furthermore, Sophie has a biliary duct obstruction.

In trying to explain this type of blockage, one must imagine a liver as a potato with two straws coming out of it and plugging into a large noodle; this would represent the liver plugging into the intestines via two ducts allowing the liver to drain into the intestines...this makes your poop that dark brown color!

In Sophie's case, she received a liver transplant because she was born without the tubes going into her liver and therefore her liver was unable to drain into her intestines causing the liver to back up and poison itself. If you recall, Sophie had the Kasai procedure where they tried to connect her intestines to her liver and make a duct, but it didn't last long leading to her early transplant.....and the liver poison causing her lungs to almost stop working.  When Sophie got a piece of liver from her aunt Stacey, she was giving the part of the liver with the liver drainage ducts allowing her liver to drain correctly. This was the main cause of Sophie's problem.

Today, Sophie continues to get infections in one of her drainage ducts causing her liver to drain slow and keeping her liver from operating correctly. Basically, if they cannot get the liver draining correctly then Sophie's liver will poison itself once again. For now she takes medicine and other drugs to fight the infection and keep the liver draining somewhat. However, in the very near future Sophie will need another surgery where doctors go back into her liver and fix the bile duct that is obstructed.

In the mean time, Sophie spent about a week in the hospital prior to us leaving on a short vacation to the Outer Banks where we were graciously provided a beautiful home on the beach for a week....of course we invited Aunt Stacey and Uncle Mike. While at the beach Sophie was on a central line (PIC) line in her arm where Holly gave her injections every three hours or so. It sounds easy, but it was quite the chore.

For starters, this line goes directly into Sophie's arm where it plugs into her main artery and held in place by stitches. There is a wrap that goes over the tube and then secondary wraps over the original wrap for added safety. Prior to every injection, Holly needed to put on sterile gloves, pin Sophie down, wipe everything off with alcohol wipes, plug her in, and then make sure the line was feeding correctly. Not to mention flushing the line before and after and cleaning everything again at the end. Needless to say, if you tough the line going into her artery without sterile hands, the chance of infection in about %99. Not to mention Sophie has little immune system to start with. And........Holly was up all hours of the night to watch each injection for a half hour.

And how did the injections get delivered you ask? Well, there are these little balls that look like clear baseballs with a tube in the middle. Once they are allowed to drain, they release the medicine at a controlled rate until its empty..This takes about a half hour. Then we take a large IV flush line and flush fluid into Sophie's arm where it keeps the line from getting clotted.

And the line clots! Upon arriving home from a 4 day vacation, Sophie's line did get a blockage stopping the medicine from getting into her. Well, it was 9pm admittance to Georgetown Hospital and a release early in the morning after getting the line working again. I think this made it the third admission to the hospital for Sophie in the last few weeks. So for those wondering about Sophie's medical fund.....it definitely helps as we pay the admission co-pay each time she gets admitted! But one day my lottery ticket will win...I hope!

As for our vacation, Sophie had fun and spent time running on the beach while amused with the sand and the birds. I have placed a few pictures of our vacation here with Sophie enjoying her time on the beach. I know she looks a little over covered in the sun, but the anti-rejection medication strips Sophie of her natural ability to block UV rays and makes her 100 times more suceptible to skin cancer than you or I.

I almost forgot the pictures from Sophies UVA feeding clinic....it went well and they kicked her out becasue she was eating everything in site!

Updates flow from the oldest to most recent. Please scroll to bottom for the latest news

7-14-10

Well………..here is the next bout with Sophies medical condition. At this time Sophie has spend some time in the hospital whereas most of it was intermittent through the month of July. During this time the doctors continued to seek out the culprit for Sophies rising liver functions. During the process interventional radiology placed a tube into her stomach in an attempt to route it down her intestines and check the connection between her intestines and her liver. After several attempts during the procedure, the doctors pulled back from the procedure and advised us they were unable to perform the test due to Sophies intestines being too scared from the transplant surgery and the previous Kasai operation; pushing the tube may have caused her intestines to rupture.

After a week in the hospital they again tried through interventional radiology where they went through her stomach and directly into her liver with a large needle. During the procedure, Doctors said all the conections from the surgery were great and things were following as needed. This being said, now were all perplexed as to whats going on.

Currently, Sophies liver tests seem high and they don’t believe it’s a rejection issue. Today, 7-14-10, Sophies doctors have met with several liver specialists to determine the best route to find the issue. I have a feeling were going into the hospital again and will be spending more time treating Sophie like a little guenie pig.

On another note, we will be celebrating Sophies second birthday this coming September 11th from 11am to 5pm. For those who remember, Sophie was asleep when her first birthday came around as she was still fighting for her life and praying her lungs became functional. Being her second birthday, we are praying she will be out of the hospital and are looking forward for all to attend. The invitation is an open one in which we ask all people who supported Sophie and her cause to please come out and enjoy the day. We will several large bounce tents, games, and other activities. Food will include burgers and hot dogs (Sophies favorite) and were working on having either live music or a DJ and possible face painting and ballons!

           Were hoping for a great show up and are asking any gifts be given as a “Toys R Us” or Target gift card and/or donation to her medical fund as were are already running out of room at our house for kids stuff; Were hoping to get Sophie a swing set in the back yard with some outside toys. The party will be held at the Lions club in Aquia Harbor just off the Garrisonville exit (143) in Stafford Virginia. I will have more details to come along with directions and specifics.

8-19-10

Alright folks...were getting better here. At the present time they stil dont know whats causing Sophies liver function tests to rise, however, her tests have gotten better and were in the clear for now. Seems whatever was causing the issue has stopped and there is now hope we will be avoiding another surgery in the future. Currently we are planning Sophies party which can be seen on the homepage.

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