Sunday, December 16, 2012

A Lot of Catching Up...Part 2

Silas was admitted to the hospital on Saturday, December 1st. 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 3rd 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

1 comment:

  1. Oh, wow. I am so, so sorry your family has gone through so much -- Silas's condition would have been scary enough without the callousness of the medical personnel you're having to deal with!

    I know that Katya's family ( great success working with Dr. Ben Carson. Another RR family with a neurologically atypical daughter was able to see him as well. Would it be possible for Silas to have an appointment with Dr. Carson?

    There's also a great international adoption clinic at Tufts in Boston.

    It does seem that Silas has some facial features of Fetal Alcohol Syndrome. Many kids with FAS are also born premature. Possibly this might have something to do with his condition?

    Thank you for these updates! I'm so relieved that Silas and Andre are with your family -- you obviously care about them a great deal. :)