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  • New sci C5-C6, pls help with questions

    My brother had a diving accident in shallow water in Kuwait on the 7th May (C5-C6), he was in ICU in Kuwait for 2.5 weeks, operation was done 5 days after the trauma. We have transported him to Kazakhstan (he is from Kazakhstan) last week and he is still in ICU, on ventilator. They are still trying to stabilise him, he is on adrenalin - having low BP. He re-acquired pneumonia again, his right lung was collapsing in kuwait. Doctors here says he is in extremely critical condition. He seems to feel his legs at the moment and couple of days ago i noticed movement of his left leg, he says he can do it himself sometimes, other times he feels it as a reflex. His arms a moving a little, but no hands movement, although he feels touch in his palms. I had so many questions and learnt a lot from this site. Thank you all for being here and helping each other.

    I have a question about bed pressure/ulcers matresses, one of his doctors recommended we get one. Can you please advise what is the best one to get. Im based in the UK, so can order one either in the UK or States. He doesnt have any bed ulcers yet as far as i know. Also pls let me know what are the best bed ulcers cream and whether we can use them before having bed ulcers. Also, what are the good hand and feet splits we should get (there are so many of them - im lost). Thanks so much.

  • #2
    Welcome to our site. We are sorry that you had to find us, but glad that you did.

    Creams and topical applications to the skin will do nothing to prevent the development of pressure ulcers (the correct term for "bed sores"). They are caused by pressure deep under the skin, not from the surface of the skin. A pressure reducing mattress will help, but most critically, both for his lungs and his skin, is that he be religiously turned at least every 2 hours, and that his skin be inspected with each turn. Are there family members with him who can assure that this happens? Nutrition is also critical, especially enough protein. Is he on tube feedings?

    I am surprised that the hospital would require you to purchase a pressure reducing mattress rather than provide one. Does his health insurance not cover this? They are very expensive. I can recommend a low air loss mattress (LAL) as the best if his skin is still intact. They should be used with no sheets or linens underneath him, ideally, especially not any waterproof bed pads, as air flow across the skin is an important way that they function.

    In the USA you can often find these mattresses used on eBay. They are expensive, ranging from $5000-8000 (USA) new, and of course require a compatible power source (they must be hooked up to electricity at all times). The Invacare MicroAir 3500 is a dependable product, as is the Joerns/Triline TxCair Plus.

    Please come back and ask more questions. We can help.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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    • #3
      Hi Adema, I am sorry this has happened to your brother. Please keep us posted on how he is.

      Comment


      • #4
        Thanks so much for replies. Spoke to his insurance company in Ireland, they said will cover mattress costs if prescribed by the doctor, will speak to doctor tomorrow to get a presciption for this. Kazakhstan is a developing country, not much available there, i even couldnt buy feet splints there! Looked at Invacare MicroAir 3500 is and the Joerns/Triline TxCair Plus - both are not power compatible for Kazakhtan (read Europe sockets). Can you please suggest Europe made mattresses similar to the ones you mentioned so they are power compatible?

        On nutrition - can you please reccommend what to get him - what type of protein and other nutritional support? He is on feeding tube. In Kuwait he was on nutrition but in Kazakhstan they make us cook for him (beef/chicken soups with rice), and then grind it in blender/mixer so this can go through the tube. I was shocked. Not sure whether this is a good approach. Please advise what i can get for him to get him on a right nutrition. Many thanks!

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        • #5
          Spoke to KCI just now, they are offering LAL Thera Care Visio mattress for GBP 5,800, they are saying this is the best in the UK, and also not many US products available in the UK and EU. Have you heard about this LAL Thera Care Visio mattress? Does it worth what it costs? Also, i noticed alternating pressure are cheaper than LAL, what are the advantages of LAL? do they make a big difference to alternating pressure ones? Thanks

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          • #6
            Sorry, typo, it is spelt TheraKair Visio

            Comment


            • #7
              The KCI product looks like it would be comparable. I am unable to tell with the very limited information on the KCI webpage though.

              Ideally, his tube feeding should be with a high protein formula that is designed for someone who is totally dependent upon tube feeding and that has the appropriate protein, fat, and vitamin/mineral content. Additional fiber is often also needed. Common solutions used in the USA are Jevity, Ultracal, Osmolite, and Ensure. Most of these come in special higher protein formulations, or those for people with diabetes or renal failure. At this point in his injury, he should be getting roughly 2500-3000 calories daily; more if he is running a fever. We always consult with a registered dietitian about selection of the tube feeding formula, the rate, and also lab tests that should be done regularly to determine if his protein levels are sufficient.

              Here are some guidelines in selecting a formula:
              Standard enteral feeding products provide about 15% protein, 55% carbohydrate, and 30% fat calories. The protein content can range from 6% to 25% of the total calories. The lower protein formulas are intended for renal insufficiency and the higher protein formulas for burns and trauma. Formulas with more than 300 mOsm/L osmolality may cause diarrhea.
              Source

              Continuous feeding with a slow continuous drip is best initially (rather than bolus feeding), and care must be taken to avoid giving it too fast. We usually start at 50 cc./hour and work up from there. Feeding too fast can cause vomiting and aspiration...very dangerous. It is common for people with his level of injury to have extremely slow stomach (gastric) emptying. Residual amounts in the stomach should be checked every 4 hours, and should be fewer cc. than the hourly rate. A small bore feeding tube (such as a Dobhoff) is preferred over a Salem sump type tube, and if long term feeding is required (more than 3-4 weeks), a gastrostomy or jejunostomy is preferred. This can usually be done percutaneously (PEG tube). Long term use of a nasal gastric tube puts him at risk of dangerous sinus infections, is uncomfortable, and looks awful.

              (KLD)
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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              • #8
                Thanks for reply and advice. As an update, my brother is still in ICU, he has got a non-sugar diabeties (not sure if it is a right terminology), meaning he produces more that 7 litres of urine per day. Not sure why this is the case, doctors dont explain. Any ideas why? They have done a scan of the head - no abnormality there. He also unfortunately acquired another infection - Pseudomonas aeruginosa (blue pus bacillus), so on increased doses of antibiotics. It doesnt get easier unfortunately.

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                • #9
                  I assume the pseudomonas infection is in his lungs, correct? Is he being maintained on proper VAP (ventilator associated pneumonia) precautions? This includes taking nothing by mouth, keeping the head of the bed elevated to 30 degrees at all times, and oral care with an antiseptic such as chlorahexidine and brushing every 4 hours.

                  When you refer to "non-sugar diabetes" I assume you are talking about diabetes insipidus. This is a problem that is not due to SCI, but can occur often in brain injury. It can also be associated with hypercalcemia (high blood calcium levels) which can occur following SCI, esp. in adolescent or young adult males. It is usually a temporary condition, but can be very dangerous if not properly managed.

                  DI is a disorder of the hypothalamus area of the brain (right next to the pituitary gland) where it is not excreting enough anti-diuretic hormone. This is also the area of the brain that controls thirst. While increasing his fluid intake to keep up with the urine output would appear to be the correct way to go, that is NOT how it should be treated.

                  The best treatment is the use of DDAVP (vasopressin) which is a drug that is usually given with a special nasal inhaler. It is also available in a pill form now days. Other drugs sometimes used include chlorpropamide, carbamazepine, and clofibrate. Dosage and fluid intake should be adjusted based on the sodium and osmolaity level of the blood which may need to be checked several times daily.

                  Here is some more information on DI:

                  http://www.nlm.nih.gov/medlineplus/e...cle/000377.htm

                  (KLD)
                  The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                  Comment


                  • #10
                    Thanks so much for useful information. Docs gave him medication to help with diabetes insipidus, he seems better now, less urine, they say about 2 litres today. He started having bowel issues though, they had to use tube through his nose i think to clean up his stomach as food is not being digested (he is not on tube feeding anymore, they started giving him harder type of meal to chew etc), and doctors say that the reason he is having bowel issues is that his stomach is paralysed and thus he cant digest. I asked whether this is a temporary problem but no clear answers. Do you know if this will stabilise and improve over time? He didnt eat for the last 2 days, he feels sick and very weak. Doctors say that we should not bring anything to eat till tomorrow lunch time. Mum say he lost lots of weight.

                    As for his pneumonia, his temp seems ok - 36.7 - 37.2 C, not sure how they are treating him but will tell my mum to brush his teath and ensure he is elevated in bed by 30 degress.

                    He is off the ventilator for the last couple of day or so i think. Doctors say may be best to transfer him out of ICU to normal ward but they havent decided yet. He started swallowing and coughing, but coughing is very weak at the mom. He says he can feel his legs and arms, he know positioning of his legs. I truly hope this is positive sign but also afraid to hope for too much.

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                    • #11
                      His sensation is a very good sign. If he has feeling at his anus, he may be considered an ASIA B injury. It is also good that he is off the ventilator.

                      People with SCI, esp. in the upper thoracic or cervical levels, are subject to decreased GI system motility. True gastroparesis is rare, but stomach emptying can be slowed. A medication called Reglan is often used to help with this temporarily (as this usually improves somewhat with time). True ileus, where the entire GI system motility shuts down is a temporary condition that is usually self limiting, but if it goes more than 3-4 days alterantive IV feeding (TPN = total parenteral nutrition) should be considered as he is also in a state of catabolism where his need for calories and protein are much higher than normal.

                      Now that he is ready to leave the ICU, he needs to have plans in place to go to an appropriate specialty SCI acute inpatient rehabilitation hospital. Has this been discussed or arranged? The sooner this happens, the better.

                      (KLD)
                      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                      Comment


                      • #12
                        Thanks for your reply. They started using medication to help digesting, however they didnt prescribe Reglan yet, i told my mum to speak to docs about it. He is also having severe pain in his shoulders and doesnt let any one to turn him for the last two days. Mum was trying to convince him that he needs to turn but he is not listening. We are afraid of bed sours but dont know what to do. Do you know if shoulder pain is normal in his situation (C5-C6) as he seems to move his shoulders himself time to time. Should we still move him despite him saying no? Should we address it with other docs? His ICU docs do not care much that he is not being turned in bed.

                        On accute rehab - his docs saying he will stay in this centre for some time but in normal ward. They have PT and he is already getting some PT and gentle massage. Unfortunately, he is in Kazakhstan, and this centre is the biggest one in the country. They dont have anything specific to SCI. There are some centres in Moscow which we plan to take him to but they are more of an active rehab which he is not ready for yet as docs say. Thanks so much for helping out with questions.

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                        • #13
                          The pain is very common, and unless he gets medications and also works through the pain with range of motion exercises and therapy, it will get work due to adhesive capsulitis. It is critical that he do this, as his shoulder movement right now is the best function he has. If he gets a frozen shoulder or elbows, he will loose that function. Medications such as gabapentin (Neurontin) or Lyrica are especially helpful for nerve root pain like this.

                          Similarly, he MUST turn. A pressure ulcer now will prevent him from going on to a good acute rehab program, and will impair his skin strength for the rest of his life. Is he on a specialty mattress yet? Even that does not do enough that turning is still not needed.

                          (KLD)
                          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                          Comment


                          • #14
                            Adema, I am so sorry you needed to find us here but glad that you did. I hope and pray that your brother will listen to you and receive the help that you offer. That he will trust you, that he will understand that you only want what is best for him. That the pain caused by turning every two hours and moving his shoulders will be helpful and good for him in the long term.

                            I have friends who live in Almaty, Kazakhstan. I understand a bit about your situation there, you and your family will be in my thoughts and prayers.
                            Last edited by Still Learning; 06-06-2010, 06:03 PM.
                            The IceDragon Avatar best represents my constant Freezing yet Burning Pain...not to mention all the other sensations that come with neuro pain

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                            • #15
                              Hi Adema,

                              I'm very sorry you guys are going through this right now. I had a diving accident which resulted in a c5/6 injury in a foreign country as well, so I can relate.

                              It was confusing at first figuring out exactly what my injury had affected. The diagram below will help you understand what muscles he can still fully use and the ones that may be weak [c6 level which is wrist extension]. Also, if he begins definitively using muscles below his injury level this is a great sign!



                              Push him hard in the next few months towards recovery and independence. These coming months are key, not only to his physical recovery, but to his state of mind.

                              I hope his complications improve very soon. Take care and keep us posted.

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