Yesterday, 14 Sep 11, Supatra started her antineoplaston treatment and Punny and I started our training on how to administer the drugs. We were first shown our initial supplies and the dual infusion pump and then they proceeded to demonstrate how we need to flush the catheter line before administering or drawing fluids from it. We were shown how the tubes that lead to the pump and IV bags are set-up and how they initially set-up the dosage, flow rate and dose time on the pump. We were a little surprised at the amount of antineoplastons that Supatra would need to carry around along with her pump apparatus. The nurse then told us that today's IV bags were actually small ones because of the small dosage they are starting her on and that when she reaches her optimum dosage she will need to carry around a 1000 ml IV bag for one component of the antineoplastons and another 500 ml bag for the second portion. A tube from each of these bags then gets put through each side of the duel pump and is attached to her catheter tip. This is a lot of weight for a six year old to carry around and I thought she would be able to place all this stuff into a small child's backpack and carry it on her back but that is impossible now especially as she will be feeling poorly for the first number of weeks once on the treatment. The pump comes with a shoulder bag in which the IV bags can be stored as well but this bag is rather cumbersome as well and too heavy for her to carry. For now we have to carry the bag as Supatra trails along beside us as the IV tubes are only about 3-4 feet long.
Today Supatra also had her dressing change and for the first time it turned into a drama show for Supatra as she became very paranoid as to what we wanted to do with her catheter and reaching towards her catheter area would set her off. We tried everything to calm her down and explain exactly what we wanted and intended to do in order to change her dressing but to no avail. She finally relented in letting the nurse use some alcohol swabs to soak the surgical tape on her upper chest incision but it was too painful for her and we could see that her skin was irritated by the glue from the surgical tape. I don't know why they use this type of tape especially on a child. The nurse managed to get half peeled off on the one side as Supatra screamed bloody murder, to the point where other staff members were coming into the room to see what was going on. But after this initial attempt Supatra would not relent and would not allow us to continue so while she was distracted I yanked the remainder of the one side up with little resistance and the fact that she hardly noticed it caught Supatra by surprise. She then allowed the nurse to continue to take the other side of the tape off and the nurse quickly continued with the larger derma tape covering the catheter exit area and excess catheter tubing with little resistance from Supatra. I can understand her fear as the skin was clearly irritated by both bandages. Once off the nurse proceeded to show us how to open the sterile packaging (we were all already wearing masks and sterile gloves) and take out the alcohol swabs that would be used to clean the wound and surrounding tissue area and then re-apply a derma patch (a large clear sticky bandage). So this was our first treatment and training day, all taking about 3.5 hrs and we were allowed to go home carrying this pump, IVs and hooked up to Supatra. Other than the dressing change Supatra was great and she looked on with a six year old's curiosity.
Once home we tried to figure out how we were going to move Supatra around the house and on excursions for that matter, with tubes sticking out of her. We let her rest on the sofa and watch a Disney movie while we all relaxed for a while. Of course Supatra is not our only concern and we do have her little brother Jason to look after as well. I should mention that since the last day of the cruise he has developed a cough and at first we thought he might be catching a little bit of a cold but the cough has now persisted for two weeks and we are thinking of taking him to a doctor tomorrow. Punny also got this cough from Jason and has been sick for the last week and a half and as of this last weekend I have been coughing as well. We now know it is not a cold as we have no other symptoms. Jason has been vying for attention and he looks so sad when I drop him off at the babysitters house. He definitely does not like coming home to our apartment as I think it is too small and does not allow him to run around very much. Of course he has to also be careful around Supatra and we are extra vigilent because we don't want him to yank at her catheter nor the tubes for the antineoplaston infusion. We have bought numerous toys for both Supatra and Jason in the hope that they will feel more at home but Jason I think will take some time to adjust to his new surroundings.
15 Sep 11
Today we learned a little more about the pump set-up and how to prepare the IV bags of antineoplastons. The bag preparations can take some time as there is air in them and you have to tap them with your hand or another object in order to get all the air bubbles to the top and then you prime the IV bags using the pump until all the air and bubbles are out. This can take some time and once finished you then continue to prime the IV tubes to get any air bubbles out from them before connecting to the persons catheter. Its too bad that they can not manufacture these bags without the air in them as this would make things a lot easier. We were also shown how to draw blood from the catheter and what we needed to do for this. I should also say that along with the blood draws we also have to keep a running record of fluid intake and outtake. We measure the outtake by means of a plastic pot that goes underneath the toilet seat and when Supatra urinates we take the out-put measurement outlined on the side of the pot and record it into a log. the fluid intake (both medicine and drinking) must be within about 200cc's of each other. We must also monitor her sodium consumption as the antineoplastons is a high sodium solution and can cause swelling in the brain. We have also been given some Decadron steriods that we can inject through her catheter if she develops symptoms from too much soduim or if the symptoms come on slowly then we can start her on her normal oral steriods to reduce swelling in the brain while at the same time the antineoplaston dosage would either be reduced for a period of time or stopped all together. If something like this happens they then re-evaluate Supatra's treatment and decide whether to continue on a lower dose and take more time in increasing the dosage to the target amount needed for her condition.
Supatra sat through the whole training session without problem and just watched as they extracted blood from her and asked questions. At one point as they were taking the second vile of blood she stated in an excited voice "don't take too much, don't take too much and leave some for me". I understand her angst but had to laugh. We upped the dosage today as per the schedule they gave us and her dosage will be increased each day for several more days then it will tapper off and be increased more slowly at a point were most patients tend to start seeing side affects. So far everything is good with Supatra other then her complaining of itchy skin on her back and chest. This could be an early side affect but according to the doctors it is usually associated with a skin rash which she does not have. While in the training phase we will have to go to the clinic on the weekends as well. Tomorrow it is my turn to change tubes and IV bags and set-up the pump for the next 24 hrs. Punny will get to change Supatra's catheter dressing and draw some blood. Then the plan is to alternate so that every other day we get hands on trianing.
Today I also went out to look for a small trolly bag that Supatra can use to pull her pump and IVs behind her but that can also be used as a backpack later or when needed. I found one but it is still a little big for her but bought it anyways to let her try it out. She likes it! However, I will check a few more stores tomorrow to see if I can get a better one still.
I also took Jason to a local doctor's clinic for a check-up and was told he has a slight chest infection and that it is starting to affect one of his ears. She gave me an anti-bacterial perscription for him. Hopefully this will make him all better and he will start eating more and sleeping better.