Silas is home!

Silas was discharged late Tuesday evening, which almost did not happen. Like everything with the hospital, it was a mess. His prescriptions were faxed the day before to the only pharmacy in the area that can compound his meds. The pharmacy delivers to the hospital but somehow there was a mix up and they were not even received as if 5:00 pm on Tuesday. The pharmacy closes at 6:00 and I had to drive through rush hour traffic to get there 2 minutes before they close. Also during this time, I left Silas with the doctor and nurses who kept him with them at all times. Even though it is their job and they are trained, this made me very nervous. But I wanted to go home so badly and I knew it was what I had to do to get us home. He was discharged, but still his diagnosis is unknown.

Not having a diagnosis is making things very difficult for scheduling therapies: physical, occupational & speech. There are waiting lists. A child is placed on the list according to their diagnosis. Well then. This child has had NOTHING for 5 years! Hardly any medical treatment, he was not even fed properly. I would say his need is pretty urgent for therapy! The receptionist at the OT office actually hung up on me. She said I am not supposed to call for an appointment, they call me. Well, I was just following the instructions on my discharge papers.

All of the other follow up appointments are also difficult to make. Appointments are not available for months. That is also making me angry. Silas needs medical care now.

He is still having the muscle spasms, but they are not as bad. I can most of the time find a position for him that works. This often results in me holding him much of the day. He can not be on his back at all, sitting up or laying down. But he can not lay on his stomach, he just had his g-tube placed. The doctors have no idea what disorder he has. And although I know they did many routine tests, I feel as if enough was not done. I suggested an MRI of the spine, but they did not think it would help. I feel like he is not a priority and the pain he is having does not matter to the doctors. I just want them to find out what is hurting him & stop it, completely. Not just lessen the spasms.

I have started looking into going to another hospital. Cook Children's in Dallas has said they will look at his records and let me know if they think they can do anymore for him. I have to find a neurologist that will not just give up after the routine tests. Also, a neurologist that will listen to what I say and spend more than 5 minutes with him before dismissing what I observe is happening every day. If there is anyone out there that knows of a fabulous neurologist, I am open to suggestions.

Things are going overall pretty well here at the house. We are still trying to get organized and routines set. I know things will get better when we can figure out what Silas has and treat it completely. We are putting up our Christmas Tree tomorrow and attending service at 3:00pm. This will be our first outing, the whole family, what better day than Jesus' Birthday to have our first outing?!

Merry Christmas to everyone from our family! 

All 5 boys under 1 roof!

A Lot of Catching Up...Part 3 What I have put together

PART 3:

Throughout this hospital stay, my eyes have been opened so much. I pieced together so many things that happened in Ukraine. So much I did not share with the public because I did not think it was of any importance or that I just forgot and am now remembering. Silas did not have these spasms in the orphanage. Why? He was on some sort of medication. What it was, we will never know. Why were we not told he was medicated? The wonderful Nancy once again had to help me understand this. In their beliefs, Silas was not worthy of a family because he is non verbal and immobile. When she said this to me, I started putting so many things together. Although I do not want to believe that, because I do not understand how anyone can not love his sweet little face. He did not ask to be put on this earth nor is it his fault that he is the way he is. His life is just as precious as every other life. And he deserves even more love than those of us that are “normal,” not less.

I am going to go back to October 17. This was our first DAP appointment. This is where we were told Silas was not available to be adopted due to his paper work being changed. It took a few times for me to understand why he was not available. My brain was just not working. And I want to clarify this because I have seen cases of ignorant trolls twisting stories when they hear a family pursued a child that was not available. And I am aware of trolls lurking around my blog, so I will explain why he was not available and why we pursued. In Ukraine, children under 5 are only available for international adoption IF they have a certain special need. There is a list of about 12 and these needs have special numbers assigned to them. The approved needs have numbers from about 80.2-something I do not remember. His was changed to a number that was like 80.0. I was told it was an accident. When our paperwork was filed in August, everything was clear for us to adopt Silas. Sometime after that and before our DAP appointment, I was told a different doctor saw Silas while the director was on vacation. That doctor was the one that accidentally changed the code, making him unavailable for international adoption before he turned 5.

We were given a few options: come back after Silas' 5^th birthday (which was a month and a half away), accept a referral for another child and possibly add Silas if his paperwork could be changed (they were pushing us to accept a healthier child in another region), accept no referral and wait to see if Silas' paperwork could be changed, which could take a few days or a few weeks. While in the appointment, we were shown other files of children and even a video. The video was of another boy with CP. He was just learning to walk. We were told he was better off than Silas, as his CP was mild. Also I was shown the file of a Deaf boy. Even with my Deaf Ed background, I still wanted Silas. I was told “It is only a still picture you have seen. You can not love a picture. You have not held this child. You can not love him.” Oh, but I do! I asked to see the file of “Orion” who I knew was at the same orphanage. We had considered him as a second child but wanted to assess Silas' needs first and be sure we could meet his needs. I was so distraught, one of my facilitator saw that I clearly could not make a decision. I agreed to go across the street to a little pizza place and sort things out. I wanted to speak to Nancy. Its so funny that it my knee jerk reaction was “I want to talk to Nancy.” As if she were my mother. Instead of “I want my mommy” “I want my Nancy.” lol (She has really been that wonderful throughout this process. I still run to her with issues I have related to the adoption. I will likely never stop pestering her. Sorry Nancy!) One of the other facilitators stepped away to make a phone call to the director. She came back and told us that the director agreed to have Silas' paperwork changed in the morning and if we accepted “Orion” we would be allowed to meet Silas at the same time. She also said that we must understand that Silas' condition is severe. She said to me “he is not working.” I know I must have given her a crazy look because she then said “that is just how they say it here.” We accepted the referral for “Orion” and would meet him the following day.

On our way to the orphanage, our driver picked up our facilitator. She turned to us and said that the director is very happy we are interested in “Orion” and that he is thriving. Nothing was said about Silas. When we got to the orphanage, we were given so much information on “Orion.” The director knew so much information that I suspected that he knew the parents. He knew how many times the mother had been married, that the father was a big man like my husband, their jobs, etc. (“Orion” was André's name given on RR. I will refer to him as André from here on out.) When André entered the room he was a giggle box and I was in love. The director played with him and showed us how he could give 5. He clearly loved André. Next we had a “off the record” info session on Silas. We were told not nearly half as much info, which could have been because they did not have it. One thing that was repeated was, he has had therapies but has not responded. He was brought down. He was clearly frightened and did not know what was going on. He constantly looked around for familiar faces. He was not used to leaving the walls of his groupa. He is not mobile, so he does not get outside time like children that can walk. I noticed he is so observant! He looked at everyone, wanting to know who they were. Another thing I noticed, the director had stepped back. He had NO interaction with him at all! He was not at all happy that a family wanted Silas. Those few brief moments with him were so precious to me and I was very grateful that the director allowed us to meet him.

We had our second DAP the following week and accepted our referral for Silas. We also decided that we would petition the court to adopt both boys. We could have, at this point, chose only one. And I think our facilitator was surprised that we still wanted Silas after having visits with him, but we did. As devastated as I was at our DAP appointment, it was truly a blessing. We would have never met André if Silas were not available. The orphanage was like a fortress and mingling with other children is not allowed. Silas did not have these issues in the orphanage. Something was done to prevent, no matter what it was, we should have been told.

Now, fast forward to Gotcha Day. The director gave us 3 bags of medicine for

André. NOTHING for Silas. As a doctor, he should know that stopping medication suddenly (especially the type that he was likely on) could cause serious withdrawals and even death. Let me just remind you that whatever he was on was so strong that this child has a tolerance to anesthesia! That is sickening! He could have at least let us know what he was on. Then we could be prepared. Also, after we came down with the boys, he grabbed André and posed for a picture with him. He did not offer to take a picture with Silas. We left the orphanage and only saw the director again until when we signed over the boys' bank accounts to the orphanage. The following day was when we tried to have our facilitator call him to find out what meds Silas was on and we did not receive a return call.

After thinking about all of this, I realized that what Nancy told me is true. Because Silas can not walk or talk, they thought he was unworthy of a family. Or they wanted a healthier child to be adopted instead. I can not tell you how ANGRY this makes me! I look at this sweet face and think that I almost did not have the chance to have him as my son because of their stupid beliefs. He turned 5 on November 29. He would have been transferred shortly after. I know this, he would not have lasted a week! He was so incredibly malnourished, in the orphanage he did not have the use of his voice. In the past week, with the nutrition he has been getting, he now can use his voice. I have videos to prove this! I am so glad I fought for him that day at the DAP appointment. Even through this hard time of him being hospitalized, I could not imagine the rest of my life without Silas, or André, or D.J., or Tage, or Maben. 

The director posing with André

My Sweet Silas

A Lot of Catching Up...Part 2

Silas was admitted to the hospital on Saturday, December 1^st. We waited 3 and a half hours before a resident doctor came to see us. I was angry! He was having these awful muscle spasms. His body arches backwards. He holds his breath until he turns blue from pain. Imagine having a Charley horse throughout your entire body. A small Charley horse in my foot is enough to make me cry. I have videos of these episodes and you can see the muscles contracting in his body.

Silas also had a rash. It was no big deal. He did just move from across the world into a new environment. The resident doctor on duty was more concerned with the rash than the spasms. She wanted to test him for I do not even know what before giving him anything for the spasms. She ordered an epi pen, gave him benadryl, ran tests etc. We waited hours. During these hours, I watched him stiffen and twist in pain. I finally called to the nurse's station for someone to come see him. About 6 people came and watched him have these spasms and turn blue. One was the respiratory therapist who put an oxygen sensor on him and watched his saturation drop to the 70s. I overheard her tell another resident doctor that she was not ok with this and if nothing was going to be done by the resident she was sending him to another floor. They were then discussing their statuses in colors and the resident assured her that his assigned resident doctor was doing something about this. It took about an hour for the medicine to be ordered. Once he got it, he settled down. The next morning he was in pain again. I pressed the nurse button twice over 35 minutes, nothing. Then someone came in to draw blood. She told my nurse that I needed her. I asked the nurse if she had been told I called for her 3 times, she said no.

The following night had the same pattern. He actually builds a tolerance to the medicine very quickly. It took forever for an extra dosage to stop the spasms. Again I watched him in pain for hours. A resident finally came and ordered him the extra dosage. It became a pattern. He would get the extra dosage & it would work once. During the day he would be given the normal dosage, which throughout the day its effectiveness decreased and really bad spasms happened at night. This pattern repeated itself until Dec 12 when he had a new medicine added to his regimine at bed time.

On Monday, December 3^rd is when we saw almost every specialist in the hospital. We saw a couple of neurologists, an ENT, a geneticist, physical therapist, occupational therapist, speech therapist and each doctor had an entourage of about 6 residents with them. Later on in the week we saw a GI and an opthemologist. We saw several of the same type of doctors. Each time someone new comes in they start asking health history questions. I tell them I have no history. They still proceed to ask things that I can not answer. Such as pregnancy questions, birth questions, etc. It is annoying. Any information I was given in Ukraine is mostly wrong. We are starting from scratch here with a five year old.

A geneticist was consulted because it is suspected he does not have CP and instead has a chromosomal abnormality. He has several characteristics, including his tiny frame, that point to this. So, genetic testing and metabolic tests were ordered. All metabolic tests were normal. We are still waiting on results of genetic tests.

The first neurologist that saw him said he was having withdrawals. They begged me to get info on what medication he may have been on. I told them that it was impossible. I could not even get a response from the director while I was still in Kiev. Because I have a wonderful online support system of fellow adoptive parents, I turned to them. I asked if they knew what possible meds he could have been on. I was given a list of possibilities of hard core anti-psychotics and sedatives given to adults! These are being given to babies and children in orphanages in Eastern Europe! The doctors tried to do a test to see what he may have been on, but it was too late.

He saw an ENT for blood behind his ear drum. They actually had to wheel a huge microscope up to our room to look into his ear. He also had a CT scan of the ear to be sure he does not have a broken bone in the ear. It turns out some blood vessels popped while on the plane.

That Monday Silas also had a swallow study done. It was determined that he was not aspirating food. The next day he had an upper GI done and everything looked fine and was going into the correct pipes. On Wednesday he had an MRI. We hoped to get many answers from the MRI. We only got an answer that he had atrophy from loss of oxygen during birth (which sounds like CP to me) and that his brain growth is consistent with a child who was born premature.

On Friday (Dec 7) Silas had an endoscopy done. The next guess for his pain/spasms and arching was reflux. Well, everything looked fine. The doctor did suspect H. Pylori from the scope and he was correct. The biopsy confirmed he does have H. Pylori. He is now on antibiotic treatment for that. The GI doctor also made sure to mention something else. Silas was difficult to give anesthesia. He explained that he was given medication appropriate for his weight. Silas was still breathing over the machine that was supposed to be breathing for him so they had to give him extra anesthesia. This is how heavily medicated he was in Ukraine! He has a tolerance to anesthesia! This is so sad that this happens.

On Friday (Dec 14) Silas had surgery. He had a g-tube placed, a nissen (common with g-tubes), circumcision and the doctor also found a hiatal hernia that was repaired. He has begun getting feeds again and is doing well with them. He has been resting very comfortably with very minimum spasms since Friday. The pediatrician suspects he could finally have a proper dosage of medication or he could be restful due to some left over anesthesia.

These episodes, spasms, whatever we call them are puzzling to everyone. It is basically “ Charley horses” throughout his entire body that get so bad his back arches until his whole body turns into the shape of a “C.” He is on several different medications to try to stop the spasms. It has been a cycle. The spasms start out spread out during the day and get closer together and more intense at night. This really bothers me for 2 reasons 1. his doctors during the day do not see the spasms at their worst. 2. The night shift is awful here! One night when he was having the spasms, I called a nurse. I asked her “Could you sit here and watch this for hours?” Her response was “I have been a nurse for 25 years.” Well, congratulations on becoming so calloused to children's pain, but I will never be ok with watching a child suffer! Then to make matters worse. The resident doctor on duty for the night comes in and tells me “He will never be normal. So I am ok with his oxygen saturation s going into the 80s.” So, because his brain does not function like yours and mine, he does not need 100% oxygen? He would fit right in if he lived in Ukraine! Another doctor does not believe he is in pain. Well, then what is it? I KNOW he is in pain! I am beginning to think that I understand what is going on more than what they do or they do not believe me. I just do not know what treats it. His muscles spasm, contract. I feel them when I hold him all day long! That is what is causing this. I have spent so many nights researching what this could be and can not find anything. They have actually been under control since the surgery on Friday. I am not sure if something is working or he is still quite woosie from surgery, as he is sleeping a lot. We will see. The spasms are the last thing that we have to get worked out before we can go home!

I would like to say that not all of the staff here has been bad. There are many that have been absolutely wonderful! All of the daytime doctors that are on the team assigned to him are so wonderful! Even one doctor who is no longer on this floor came to check up on him. There are only a few that make being here seem unbearable at times. But there really are so many that are wonderful!

There is a lot I have to say about what I have put together in my head about so much that happened in Ukraine and here in the hospital, But I feel it deserves its own post. So, there will be a part 3 to this update. Silas is napping so I should be able to post it by tonight. Thank you to everyone who is concerned for Silas. And know that André is doing great! He loves American junk food: pop tarts, spaghetti o's, cocoa puffs. Even some healthy foods such as yogurt. He is amazing and I can not wait to get home to be with all of my boys!

Silas after surgery

A Lot of Catching Up....Part 1

I hoped that my next blog would be a beautiful video of our Gotcha Day pictures. My wonderful friend, Amy, allowed me to borrow her camera and take it to Ukraine so that the pictures would come out great. They sat on her camera for about a week after we returned until she needed her camera back. My husband transferred them to my laptop. They have been sitting there ever since. Another wonderful friend of mine, Lindsey, brought me my laptop this morning.Today has been my first chance to do anything, and that is only because I am in the surgery waiting area while Silas is in surgery. I opened up the pictures to attempt to start a video. I just can not look at them right now. I KNOW that I should look at them with great joy, the day I finally broke out my 2 boys. Instead I feel anger and sadness. It is a day that I was lied to (not the first) but the day that started a series of events that lead me here, Children's Hospital, where I have been since December 1st. Only a day and a half after returning home with my boys. I will try to recall the details, but the purpose of this blog post is to update everyone on what has happened since we had Gotcha Day.

Tuesday, November 27 was Gotcha Day. We arrived at the orphanage at around 8 a.m. We were actually unsure if this would be Gotcha Day. When we pulled up, Niko said “yes, bring the clothes. We will not come back.” Before getting the boys, we had to go into the director's office to sign a bunch of papers. As we finished up paperwork, he handed us three bags of medication. The medication was powder and folded into pieces of paper. They were for André. He has a heart condition and the director was so nice to fill us about 3 weeks worth. How nice of him.
We first went to André's groupa. We were not allowed to go in and dress him. The nanny took his clothes and went in the bathroom area and dressed him herself. We waited in the locker room area. She came out and handed him to us. (I did get to sneak a pic of a little cutie in his groupa who seems to be the helper.) He was not in the best mood. Next we went to Silas' groupa. The nannies in his groupa allowed us to assist in dressing him. The nannies also allowed us to take one last pic of Silas with his groupa. Well, not everyone. Only the kids that could walk out into the hallway. There is a little boy listed on RR, Asher, that I have been trying to determine if he is in Silas' groupa. He has CP and does not walk, so he was not in the picture :(
After the orphanage, we were off for our medical appointment. On the way, we picked up another family. We first met them the day of our 2^nd DAP for Silas' referral. They had just arrived and were having their DAP appointment. It was so nice to see Vera with her little girl. The medical office was crowded. The examination was a joke! I watched the “doctor” examine Silas & say that he has only 1 testicle (I apologize, sweetie, if you come across this years from now.) But I need to make a point. The child clearly has TWO. You can see them when you change a diaper. All doctors agree here as well. After the medicals, we went to the Ukraine passport office to wait. And wait. And wait. For hours. We waited. In the parking lot. Apparently, the person who was to sign and stamp the boys' passports went home sick. And like everything else in Ukraine, no one else can perform the job. So someone was supposed to be taking the passports to the person's house or something. We finally got them. Unfortunately we did not get them in time for the U.S. Embassy to give clearance for the boys to travel the following day. Thank God I learned from when we had court not to book tickets until you know for sure you can travel. It would take until the next morning to get their immigration packets. Niko said in all of his years, he has never seen this happen. We went back to our apartment.
On this night, Silas began having some odd behaviors. He started spasming, badly. His entire body arched in pain. These pains kept him awake all night. I was chatting on FB all night with our wonderful stateside coordinator, Nancy, who tried to give suggestions. She suspected he was having withdrawals. This was not the first person to suspect Silas was being “medicated.” One of the first pics I posted, a very experienced adoptive mother, Renee, suggested he looked very medicated. Of course I was naïve and did not think the well respected Dr. Sasha would do such things. I saw what I wanted to see, my little boy perfect. HA! He did not fall asleep until after 5:30 a.m. And woke up a little after 8:00 a.m. Again in pain. Steve called our facilitator the next morning and asked her to call the orphanage director for some possible answers. It was apparent he was given some kind of medication while in the orphanage that we were not told about. No return call.
On Wednesday, November 28, we prepared to leave Ukraine. Steve was able to go to the U.S. Embassy and pick up the boys' immigration packets. I stayed at the apartment with the boys. Our flight was at 5:55 am on Thursday. Our driver, Niko arrived a little after 3:00 a.m. We were flying with another adopting family until we reached Chicago, which I was very happy about. Sherrie's daughter is older and so sweet and beautiful! Sherrie helped out with Silas if I had to use the rest room or we had to give Andre his medication (2 people required at first but now we have it mastered to 1.)We had a flight from Kiev to Frankfurt then from Frankfurt to Chicago and Chicago to New Orleans. Thursday was Silas' birthday and he would be home on his birthday! (or so I thought)
Silas continued to have these episodes on the plane. I tried changing his position and everything I could think of. In Chicago, it got bad. For the first time he turned blue from holding his breath due to pain. Chicago was a nightmare period. We almost missed our flight due to the ridiculous amount of times it is required to go through screenings. On the flight, we were booked in 4 separate seats. Really? A three and five year old with special needs in separate seats from their parents. We had to wait until we boarded the plane to rearrange. Also, we paid for 4 tickets but only used 3 because of the rearranging. One older couple put up a little fuss because they wanted to sit next to each other and moving would separate them. UGH!
When we arrived to New Orleans, we went straight to Children's Hospital. Silas' episodes were getting so bad, we knew it could not wait until the doctor appointment I had scheduled for him the following day. From Tuesday morning to Thursday night he had a total of about 4 hours of sleep due to the muscle spasms causing him so much pain. In the ER, an xray was done and he had a huge mass in his rectum. There were many other tests done as well. He was very dehydrated and was re-hydrated with fluids. We all just thought this was spasms from CP. They gave him Valium and sent us home at about 2:30 am. I was very surprised he was not admitted just with the diagnoses of failure to thrive. He came home 17 pounds on his 5^th Birthday. My oldest son was born 10 pounds 1 ounce! We went home and Silas slept until it was time to wake up the next day.
On Friday, November 30^th we had an appointment at the International Adoption Clinic at Children's Hospital at 1:00 in the afternoon. Well, I thought it was an International Adoption Clinic, which is how it is listed in the directory. It is just a typical clinic and there is not really any type of extra experience with international adoption. To be honest, I do not think anyone had any experience with international adoption. Even to this day when I mention to nurses, doctors, etc. that I took them to the International Adoption Clinic here, they look puzzled. The visit was a very detailed visit. The boys were given thorough examinations. They were even able to get us in at the cardiologist. This was done for 2 reasons: 1. to determine what kind of surgery André had 2. to determine what his meds were. The cardiologist was great. They also had blood-work and received vaccinations. The visit was very long and we did not arrive home until 8pm.
On Friday, there was something else that happened. Silas stopped eating. It was as if he did not know how to eat. He just bit on the nipple. He did know how to eat prior to this. In fact, he was eating really well. I have no clue why he just stopped. By Saturday morning I decided to bring him back to the ER.This child has no reserve and can not afford to miss any meals. We were admitted to the hospital Saturday, December 1, 2012.
I think I will end this post here and make the hospital visit its own post. I have made this one long enough and there is so much to say about being at the hospital. It has taken me 2 days to write this one, so please bear with me. Silas just had surgery yesterday and the only reason I am able to take the time to blog right now is because he is resting. I will try to get the rest up ASAP.
In the mean time here are some recent pics. I have been staying at the hospital with Silas and my husband has been at home with the other 4 boys. I am unsure of which one of us has the heavier load lol

Silas 12/14/12 just before G tube surgery.

André loves American food, including Cheerios.

Tage & André

Maben teaching André how to drive. lol

Silas' first Hanukkah gift ever from Grandma & Grandpa.

D.J. comforting his new brother after surgery.