September 8, 2011 For those of you following the story of little Sonya and her Rex Shunt operation in Chicago last week, her Mom sent me an update this morning.
As you know after over 11 hours of surgery with Dr. Superina at Children’s Memorial he was only able to do a Mesocaval Shunt instead of the Rex Shunt as many attempts to do that were met with clots which disallowed it from working. Now the problem is whether or not the Mesocavel Shunt is actually working and they will not know anything for a day or tw0. Sonya’s INR blood is fluctuating too much so they are trying to understand this more. Dr.Superina has ordered an ultrasound to see if they can figure out what exactly is going on with her system. They are concerned with her levels because she is still bleeding from her incision, and she has also been bruising. Another grave concern is the fact that she still has gastric varices and she could also be at risk for bleeding again.
Sonya also continues to have digestion and reflux problems. She could not eat the regular formula or baby foods, and had trouble keeping anything down. The nutritionist in the hospital gave her a special formula called EleCare formula and it seems like Sonya is able to digest that. They provided Tatyana with 6 cans supply of this formula, which was covered from an emergency fund from the hospital. They also gave here a Warfarin supply for 2 months, which was covered from the same fund. Tatyana will still have to buy liquid Omeprasol for her, and it is expensive at 184$ for 300 ml which is her monthly amount. She still needs to buy formula and Coumadin plus other medications to take home for 2 months after when she leaves and she does not know how she is going to pay for it at this point. They are going to stay in Chicago one-month post-op for follow-up, so they will need funds for food. She also mentioned that they would need to purchase warmer clothing; however Shelly has rallied some people from her Facebook who will provide in that regard. Shelly also will be donating her profits from the sale of an on line women’s speciality store and here is the address for that: http://www.mythirtyone.com/shellyhart/ all orders in the US will be shipped directly however orders to Canada will have to be shipped by Shelly herself.
Also a big thanks to Shelly for setting up another important site just today for donations to families of children with PVT/Rex Shunts – check this out: http://www.everribbon.com/ribbon/view/1399 (I can see this directly helping not only Sonya’s family but many others in the days/years to come).
Please continue pray for Sonya’s needs – first of all for her health problems and secondly for financial issues that have arisen from her recent discharge.
When I first saw this latest picture of Sonya which Tatyana sent me early yesterday morning, I could not help but be struck by the by the hopefulness in her eyes. The physical toll this child has endured has been unimaginable, but she seems to be very resilient and this is cause for joy. The progress she has made is due in part by the skilled hands of Dr. Superina, and all the doctors and staff at Children’s Memorial. I also believe that prayer has been the undergirding force behind her progress, and along with Tatyana I want to thank all of you.
Is Sonya out of the woods yet as far as her condition is concerned? Unfortunately the answer is no for now as there are some complications that will be monitored closely for awhile. Here is Tatyana’s latest message …
We had a rough day on Thursday- I would call it a gastro-intestinal crisis! The NG tube was removed on Wednesday and she could even drink Pedialites and everything seemed to be okay, but on Thursday doctors wanted her to start eating, but that was not to be so she started vomiting again. She was cried all the day long and they decided to put the NG tube back. So we had another bad night beginning Thursday to Friday. She continued to vomit and was feeling very bad. She was very tired also and was not interested in any activity- even music therapy. She was not even reacting when I left her with volunteers as I had to go to where I was staying for half an hour- just to pick some needed items. When I returned, she was crying because she had seen me- it was a reaction, even though negative.
Sonya was moved up to the 5th floor at 7 p.m. on Friday after 5 days spent in ICU. They removed the NG tube, so she started feeling better and even smiled once to me. She slept well this night, and I believe that from now on she will recover sooner, having more rest and feeling less stressed. Please continue to pray for stomach as it seems to be very sensitive still. She vomited a little this morning (Saturday), and started crying again. They crush her pills (blood thinners), but they irritate her empty stomach. I was always try to protect her sensitive tummy by giving her omeprazole which reduces acid production and I keep her on diet. Now they are giving her Aspirin without any protection and she continues to vomit. And – the varices are still there, so they have to think about protection from bleeding. This is a major concern that I wanted to share with you. She is still so very weak and tired, having almost 11-hours of abdominal surgery, being 5 days in ICU where she was bothered every 20 minutes, and never getting any rest which she needed the most.
Hopefully things will improve for us since we are here. Thank you for your concern for us.
Scroll down for earlier posts on Sonya’s operation …
August 31, 2011 Update Sonya
As per email from Shelly earlier today, I am posting a message she received from Tatyana regarding Sonya’s current condition. Sonya has rallied somewhat, but still is being monitored closely…
“I’ve seen your incoming calls but couldn’t answer. We’ve had a very rough day and night. Only now she feels better. She was extubated yesterday at 2:30 p.m. and was having trouble with breathing. She has pneumonia and needs oxygen all of the time, they tryed to reduce it’s volume but she turned violet in a seconds and her saturation failed.
Also yesterday she had problems with pain control. Since she has been extubated and they were not sedating her anymore, she was very restless, and has been moving and crying quite a bit. She became tolerant to morphin really quickly and we’ve seen the side effects such as breathing depression and agitation. Doctors didn’t really want to do anything about that until the new doctors from the pain control team came and observed her crying. They switched her to another drug and as soon as it started working, she felt more comfortable and was even able to sleep. But as you know the nurses are going back and forth all af the time and they kept waking her up all of the time to draw blood, check her IV lines, and to take her temperature etc. It is hard for her to have a long, healing sleep. I have been there beside her most of the time, keeping her from harming herself, wiping off her precious tears, pushing the PCA button every 8 minutes or so, singing songs to her, or trying to do at least to comfort her.
Today they removed the NG tube and PIV. The arterial line started leaking so they had to remove it because arterial bleed is dangerous, and a fast way to loose blood. So she’s got only one PIV,CIV nasal oxygen catheters, and has a pressure measuring manget on her.
She is drinking juice with water now and looks happier then a day before”.
Tatyana is very tired and emotionally drained. With Sonya now being able to drink juice and even looking happier, maybe Tatyana will be able to get some more rest. As we continue to pray for Sonya, let’s also remember Tatyana and her family back at home.
Until next time,
August 30, 2011 Sonya … After Surgery
It’s now shortly after midnight here where I am, and I want to update you on Sonya’s operation which took place early yesterday morning. Shelly Hart was able to spend the day with Tatyana while she was in surgery today and again I and other’s are most grateful for that. In Shelly’s own words I have copied and pasted 2 posts she made on Faceboook a few hours ago.
3 hours ago …
“Headed home. So thankful for the opportunity to meet an amazing woman who went to extraordinary lengths to save a baby that nobody wanted, in a country that viewed her as “damaged goods” and told her to leave her to die. Most of us dealt with medical problems with our birth children, but this mother CHOSE her, knowing the rough road ahead. I am utterly amazed by her compassion and faith”.
4 hours ago …
“Sonya is finally out of surgery after 11 1/2 hours of being under anesthesia. Dr.S tried 5 times to connect the shunt, but it clotted off almost immediately every time. He ended up doing a messocaval shunt which is the least desirable, but …is open and flowing. She is stable and Tatyana is anxiously awaiting to go to ICU to see her. They left her intubated for now to give her little body a break. Please pray that Tatyana will get rest and have strength to care for her and for Sonya’s quick recovery. It has been a day with tears of joy and tears of disappointment, but God is in control regardless if the outcome”.
Thanks again Shelly for your compassion and care for Tatyana yesterday. Also want to thank everyone else for praying and for your words of encouragement for Tatyana through Facebook and otherwise. Please continue to remember Sonya and Tatyana at this time. I hope to speak with Tatyana later this week. I’ll keep you all posted.
The much anticipated appointment with my Gastroenterologist has come and gone (over 2 weeks past). In a prior post I mentioned that my doctor had been away for a year on a study leave specifically regarding Portal Hypertension. She studied at both The University of Barcelona (Spain), and also at the Yale School of Medicine in New Haven, Connecticut. For myself personally I had hoped to at least learn of any new developments on the Portal Hypertension front, but unfortunately in my case, that was not to be. All being said, I have decided to hold off on posting my personal thoughts until my next post as I would like to dedicate a few more lines on the subject than what I rightfully should do here. So as promised I will address some of the specific questions a few of my bloggers had for my Gastroenterologist in which I was able to ask her on my last appointment.
Audra wanted to know what my doctor had to say about heart rate during exercise for patients with Portal Vein Thrombosis (PVT) and Esophageal Varices. She takes Propranolol (10 mg twice per day) to lower blood pressure. She also takes a diuretic to prevent ascites. In response to Audra’s questions my doctor said that it is not recommended to engage in exercise that would elevate the heart rate to dangerous levels which would counter the role of the Nadolol to lower blood pressure in order to prevent bleeding from the varices. She did not say that exercise for PH patients was a bad thing at all, but that it should be moderate in nature. She suggested walking as a good alternative to an intense cardiovascular workout such as running or aerobics.
Audra also asked will esophageal varices continue to develop after several bandings, or will they eventually be completely eradicated? Unfortunately the answer to this question is something none of us really want to hear. Yes varices will develop after banding, and no the varices sometimes will not be completely eradicated! (These very same questions had crossed by mind and I know many of you also). In the event that patients (myself included) who are on high dosages of anti-coagulants and evasive measure are taken to band the varices after a bleed, there is the added risk that bleeding would not stop from the site where the varices were removed. When the varices “slough off” after banding there would remain ulceration and this is where the bleeding would likely continue.
Cheryle sent me an article from TheNew England Journal of Medicine in turn that her own doctor from the Mayo clinic had originally sent her. The article entitled Mesenteric Venous Thrombosis primarily deals with the subject of “onset pain”, but really does not deal with the condition of “chronic pain” as associated with PVT. Cheryl wanted to know how doctors are treating patients with chronic pain associated with Portal Vein Thrombosis and it associated side effects. Well, I am sorry to report that my doctor did not shed much light on this subject, but only stated that this type of pain is extremely challenging to treat because of it being vascular in nature. I know of more than one person who I have met since I started this blog, who are on Fentanyl patches to combat the pain. Fentanyl is normally used for breakthrough cancer pain, and it is considered to be one of the highest forms of prescription medication one can take to combat pain. From personal experience, when I get onset pain my prescribed medication (Codeine) and a few other “natural remedies” help a little to take the edge off. Codeine is an opiate used for its analgesic, antitussive, and antidiarrheal properties. In prior posts I have mentioned that soaking in a warm tub, taking a few drops of Oil of Peppermint along with honey in a cup of warm water, plus the pain medication can help soothe the pain. When the pain is severe enough though, nothing can touch it, so unfortunately I usually have to ride it out until it subsides. I know this is not the case for many of you, and my heart goes out to you … just wish I had more answers?
Cheryl (not the same Cheryle as the above) wondered how long it would actually take for varices to develop? Unfortunately my doctor stated that the time frame was short and that varices could develop within weeks. On a side note, Cheryl has herself been referred by her own doctor to my doctor here at the University of Alberta in Edmonton. As with many of us Cheryl also has endured much, and in many ways her condition is extenuated by the fact that she also suffers from Lupus. For Cheryl’s sake I sincerely hope she gets more answers concerning her individual health needs and I pray that her condition will continue to improve in all respects!
As I was writing this post, I was reminded again with a sense that this information is not at all positive for many of you. No one likes to be the bearer of bad news, but by sharing this information I want to remind you again that you are not alone. It is very easy to get down about the realities of this illness – I’ve been there! In my next post I will update you on my prognosis, but at the same time I also want to share at little more about “the hope that is within me”. That hope keeps me going despite the hard realities of what can happen when one has a dangerous condition such as portal hypertension.
Thanks to Greg from Minnesota for forwarding the following 2 articles concerning Acute Hepatic Encephalopathy and some possible new treatment options.
The following article represents data from 2 studies presented by the UCL Liver Failure Group to the American Association for Liver Disease (AASLD) regarding OCR-002 (L-ornithine phenylacetate) at a meeting held in Boston in November of 2009. Ocera Therapeutics, Inc. of San Diego, California holds the licensed exclusive, worldwide rights for the development and commercialisation of OCR-002. OCR-002 has the potential to reduce ammonia, down-regulate inflammation, lower oxidative stress and reduce portal hypertension in a preclinical model of cirrhosis. UCLB (UCL Liver Failure Group Present Two Studies at the Ame
This article presents data also from Ocera Therapeutics on AST-120 in Patients With Hepatic Encephalopathy At The European Association For The Study Of Liver Disease held in April of 2009.