SO MUCH xxx.
We received a copy of Jason's trust bank statement today. We are very touched by the donations we have received into the bank account from friends, family and even people we don't know. Some of you have pledged a monthly amount and we are very grateful to you all. Also to those that have paid into the PayPal account [email protected] and those that attended the Barnyard Fundraiser. That money has been added to the trust funds. We are able to pay for Jason's Neocate, pump sets, medication and therapies for two months. THANK YOU SO MUCH xxx.
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On Friday Jason's urology surgery was scheduled to sort out his "plumbing" problem. What we were told and thought he had was a blockage (the urethra needed to be dilated) and a circumcision as the skin was tight. Whilst in hospital for the 40 days we needed to check if his kidneys were refluxing as this is what appeared on the ultrasound. In order to check they needed to insert a catheter and do a dye test by inserting the dye to see whether the kidneys were refluxing. Anyway the "in house" urologist that was meant to do the procedure broke his collar bone the day before the procedure and another stand in urologist had to do the procedure. He advised that when he tried to insert the camera he couldn't get the camera up as the hole was too small. So this is what we were told that he needed a circumcision and the urethra dilated. So on Friday this is what we planned to do. The surgery and thereafter polygamy. Luckily the urologist was able to do the procedure on the same day as polygamy to avoid two admissions. Everything was going nice and smoothly. We managed to get to hospital by 6:30am. Everyone was early and on time. Jason was given his premed, the doctors were given the necessary blood tests that needed to be done. Unfortunately the premed didn't kick in before the procedure but Jason was ok with putting Woodie to sleep and then himself. Luckily he has gotten use to the nebulizer mask so putting the mask on his face didn't scare him too much. I left the operating theatre knowing that the procedure would be about an hour. I decided to go downstairs to have breakfast. I wasn't even half way through my breakfast and the urologist had found me. I said to him "gosh that was quick" and he said to me "no there is a problem". My heart sank WHY can't things go smoothly for us!!! Anyway whilst trying to stomach my breakfast he explained to me that after putting Jason under and before starting the procedure he noticed that Jason has "hypospadias". The "stand in" urologist failed to mention or see this and this was news to everyone and of course put a stop to the whole procedure. The urologist was very angry and embarrassed that this was not picked up when the "stand in" urologist did the cystoscopy. I can't say I was angry, I was more in shock that poor Jason had gone through an anesthetic for nothing, only to find out this when it should have been picked up three weeks ago. BUT what can you do, this is what happened. NO good getting angry and worked up over this when there is nothing you can do. So unfortunately this is SO much bigger than the procedure we were about to do. We now have re-constructive surgery to go through. Hypospadias is a birth defect in boys in which the urethra (the tube that carries the urine from the bladder to outside the body) does not end at the tip. Instead it ends on the underside. The urologist advised me that he does not do this kind of surgery, it is more complicated and only certain surgeons are trained to do this. He has advised that the operation is not urgent, it is more cosmetic and can be done in a few months to a few years. Dr Shaik who did Jason's Nissan and peg placement would be the paediatric surgeon to perform the procedure. Bruce and I don't want to wait too long, we will make an appointment to see Dr. Shaik and discuss the procedure and take it from there. If the procedure is not done there will be complications as Jason reaches puberty. We will see what Dr. Shaik says, I trust his judgment and know him well. I believe that it should be fixed as soon as possible in the next few months and not wait to long, depending on Jason's health and what Dr. Shaik says. So poor Jason came out of theatre kicking and screaming for half an hour like he usually does. We managed to start polygamy at 10am and that went smoothly. What didn't go smoothly was at 6pm when polygamy was finished I was then told that not all bloods were taken and done and therefore they needed to re-poke him and take more bloods and needed a fresh morning urine. So we had to poke him again at 6pm to do certain tests but some of the tests couldn't be done as they are send away tests and can only be done on a Monday to a Thursday so have to be done the next polygamy admission in three weeks time. I had to take a fresh early morning urine on Saturday (wasn't impressed with that). What a frustrating day for me and everyone involved. As most of you know any theatre procedure is scary and you have to prepare yourself mentally for it. It's not nice on the child going through it and everyone waiting to hear the news. I just can't believe poor Jason had to go through an anaesthetic for nothing but what can you do, what's done is done!! I still stand by my saying that "everything in life happens for a reason". For the urologist to break his collar bone when he did for us to have to go through another procedure three weeks later. Who knows why but I guess it was meant to happen this way. We will go and see Dr. Shaik and take it from there. I also saw Jason's dietitian. His weight was 15.6kgs. He has lost a little and the dietitian and I spoke about some ideas for weight gain. She is going to do the sums and get back to me. What we are going to try is add some duocal to his neocate and also introduce a soya yoghurt during the day to introduce oral feeds as well as add calories. Oral feeds is something Bruce and I feel VERY strongly about. The idea is to get him off tube feeding but at this stage we need to listen to the dietitian and doctors. The neocate is the perfect formula to give his gut a rest and heal. It is a hypoallergenic infant formula for cows milk allergy and multiple food protein intolerance. It is also designed to heal the gut and restore the villi. Jason's gut needs to heal and be restored. The villi are a very important part of the digestion process. If the villi are destroyed and flattened (as in Jason's case), proper absorption of nutrients is compromised. The continued malabsorption of nutrients would obviously contribute to many problems. So for now we need to stick to the really expensive neocate. We will also add glutamine to his diet which also aids in healing of the gut. We obviously have to be very careful with concentrating the formula as what happens if the formula is too concentrated the body naturally thinks that it needs to draw extra fluid to compensate this and this too can aggravate the diarrhea. In Jason it's difficult to add extra calories as he does not tolerate volume (100mls at a time) and then have to be careful of the diarrhea issue. Otherwise Jason is doing well, the first week of "home schooling" went off well. He is enjoying his mornings with "E" and getting lots of one on one attention. We started speech and OT on Thursday. The therapists were pleased with their sessions and said they were pleasantly surprised how he did after spending 40 days in hospital. He is getting his energy back, he isn't as fast as he was and tends to tire easily but he will get stronger. He is very happy to be out in the fresh air enjoying going to the beach an playing outside with his doggies.
Holding Nicoles hand
Our little man is doing very well and such a happy chap. Happy to be home with his family and little sister as you can see. Such a wonderful, protective big brother. On Monday his caregiver/teacher started and all is going great. She is really lovely and her and Jason are getting along just fine. I am back to work again which is lovely to have some adult time now and to know I am earning some money too. I trained "E" on Monday and Tuesday and she is happy to help with feeding Jason via the Peg as well. At the moment he can only tolerate 100mls at a time. This is a huge help and we are so grateful to her to be brave enough to help feed him as without the help he would lose out on feeds and much needed calories. During the mornings they do puzzles, play dough, drawing and outdoor activities. It's great that he is having that one on one attention and learning while I can work during the mornings. Yesterday when I got home there was a picture they had drawn and you can see the little face he drew with the eyes, ears, nose and mouth :-). Mommy was so proud. While we were in hospital we were lucky enough that Jason was SO spoilt from everyone and received lots of educational toys, crayons, drawing books etc. I have also asked E to encourage him to eat and drink if possible and yesterday he ate a "cow moo" cheese triangle :-). Tomorrow we have the urology procedure which will be a circumcision and urethra dilation to help with weeing. We weren't aware until our hospital stay that there was a problem and he had a blockage. So tomorrow first thing he will have his little operation and thereafter polygam. Please keep him in your prayers for a smooth, pain free procedure. We will also do bloods and a urine test to check if all is ok and to make sure the protein in the urin isn't too high. The kidneys will be checked out at a later stage. While in hospital tomorrow we will also see the dietitian to review things and see how he is doing weight wise. Today we start speech and occupational therapy again. It's been a while since he has been able to go to therapy so we are very pleased about this. It's wonderful to have our happy little Jason back and we are so grateful that we got over this rough patch. God is great and thank you to every one of you for your prayers and support for Jason and for us!!
Loving the beach and sunshine!
What a beautiful picture, our little man enjoying the beach the first day home. Bruce took the day off to spend it as a family for us to be able to enjoy being a family again. Jason was so excited to be on the beach, he didn't stop smiling. It's been great for all of us. SO nice to be free again. 40 days in hospital is such a long time to be confined to such a small space. Our little man was so good. Not many kids will do well in a tiny hospital room for so long. Anyway it's great to be home, great to be back with my baby girl and my husband. Great to go to the toilet without having to hold the door handle to avoid someone walking in on you. Great having a bath without worrying about another parent walking in on you. BUT most of all great seeing Jason free and happy. His little personality is back, his little giggle is back. How is he doing, well he isn't 100% right yet. The gagging is back again so we have had to take feeding a bit slower again. His stomach is still not right, big noises and that peristalsis movements - the alien is back. So from being able to do 200ml feeds back to 100ml feeds. Yesterday I had to go for my follow up appointment with the ENT and he started with bad gagging. It was very frustrating for me because I couldn't leave him at home and I couldn't go immediately either. I found it very frustrating as all bad memories returned. I thought he was better and this brought me back to reality and reminded me that I need to take things slowly. It reminded me that although we have gotten over this hospital stay Jason isn't 100% right yet. On Friday we have polygamy which is a day procedure. I am seeing the urologist on Tuesday to discuss the operation and we will see whether to do the operation on Friday with the polygamy or on a separate day. I am nervous about the procedure but I know it needs to be done. Jason has had this problem for a long time and we need to sort this out. Once this is done we can investigate the kidney problem. Going back to hospital for the day isn't going to be nice for Jason or for myself. The thought of having to poke him again for a drip and bloods kills me but what can we do. I just continue to pray for our little man and pray for healing. I need to get back to work soon as well. Jason isn't allowed to return to school because of his immune system. We have been looking for someone to look after and teach Jason from home while I go to work. Unfortunately we were not able to afford someone qualified as our budget does not allow for that. Hopefully the person we have chosen will be good for Jason and will be able to spend time with him and teach him colors, shapes, numbers, draw etc so I can go to work to help pay for the bills. It's always a worry trusting a stranger to look after your child. This is Jason's future that is in this person's hands. I have prayed about it and we just have to trust and believe that this person loves Jason as much as we do and really takes her job seriously and helps Jason grow and thrive. I guess time will tell. Some things are out of your control and you have to put your trust in complete strangers and believe things will be fine. I really wish Jason could return to school, it's something that I feel very strongly about as he loved school and loved playing and interacting with the other kids. I am very sad that I have to keep him out of school but he will just get sick and we will just end up back in hospital with infections. He has got combined immune deficiency which affects his ability to fight both viral and bacterial infections So we still have a lot of things on the cards in the near future. A lot of new and scary things but we just have to take things one day at a time and see how we go. After 35 days in hospital plus the 5 days prior our discharge day finally arrived. Today was the final IV dose of day 7 of the one antibiotic. The other two we were able to change to an oral dose. Both doctors were happy that Jason has had his 7 day course and there was no reason to stay. Jason's temperatures had returned to normal and the feeding was going well.
The diarrhea has always been with us. We have never had a solid poo and this is the reason why we have not been able to potty train as yet. This is something that will come with eating I am guessing. Being on a formula or pureed foods you aren't going to get normal stools. BUT with Jason he often has watery poos. The antibiotics doesn't help either. Even immodium isn't helping. The nurses found it quite funny that I was packing the car even before we were discharged. I told them that they would be helping me unpack if we weren't discharged. Well Dr. P was happy to discharge us as there was no need to stay any longer. The diarrhea is something that is going to have to improve with time and isn't something that is going to happen any time soon. Prof B was hoping to see us before being discharged but we will make an appointment to see him once the urology procedure is behind us. After the procedure and once Jason is free of all the medication we can investigate the kidney problem. I heard from medical aid today and they again have declined our request for them to pay for pump sets, bags and feeds. They have advised me to apply through ex-gratia which is another long process and more forms and quotes and letters. I think it is shocking how medical aid will decline our PMB request when Jason has a FEW conditions on their list. It' terrible how they will sit down and discuss our case WITHOUT looking at our situation, taking the time out to even come and meet Jason. They have approved 4 weeks of speech and 4 weeks of occupational therapy. We have been doing speech and OT for 2 and a half years now and they will pay for 4 weeks!! Oh well I am not going to give up. I will apply through ex-gratia. They are welcome to have a look at our monthly income compared to our monthly expenses and then tell us still that they cannot help. What I don't get is if they actually helped pay for Jason's nutritional requirements especially pump sets and bags they would save themselves and us money by avoiding hospital admissions in the first place. They are happy to pay for hospital admissions yet they will not pay to avoid admissions. It's crazy and there are a lot of South African families in the same position trying to feed their children with feeding tubes and medical aid don't see this as a life threatening condition. Our children don't eat, they have a feeding tube and if we don't feed them the right formulas they fail to gain weight, they lose weight, they get sick!! Jason is malnourished, failure to thrive even with a feeding tube and expensive formulas yet medical aid don't help. We are on our own. Anyhow it's great to be home with my baby girl and Bruce. On the way home I was watching Jason in my mirror and goodness it was lovely to see him smiling, his face was actually glowing. He knew we were going home. What a nice feeling for me and for him. Seeing him so happy brought tears to my eyes reflecting what he had been through and looking forward to being home. The first thing that Jason did when we walked in was run up to his baby sister and love her and the two of them played so nicely, the both of them giggling together. It was wonderful to see. Today has been pretty quiet. Jason is doing well. His tummy is still giving him trouble, griping, cramping and a runny tummy. I have spoken to Dr. P about it and he also feels that once Jason is off the antibiotics his tummy will be much better. They don't help even though he is on a daily probiotic. He is on immodium twice a day and nothing seems to help. BUT this is what we have been dealing with for years. It will come right in time. Hopefully tomorrow will be the final antibiotic dose on IV, all will go well and we can go home. We will see what tomorrow brings. I am NOT going to get all excited until I have been given the go ahead that we can go home. I am meeting with the urologist tomorrow as well to discuss Jason's upcoming operation. BUT all is good. As you can see in the picture Jason picked up a piece of pizza and put it to his mouth. He did this a few times with some chewing motions. He didn't eat any of it but remember for a child that does not eat a thing this is a HUGE step forward. He picked it up, got his hands oily and put food to his mouth :-) Mommy was so excited. Nothing like eating pizza with your child that doesn't eat. I do believe that ONE day Jason will eat. I have complete faith that he will and he will do it in his time. So happy!!! Otherwise not too much news today we just continue to have faith and pray for complete healing for Jason. I am so blessed to have such a wonderful family and soon our family will be together again. God has truly blessed me and I have so much to be thankful for. I really want to thank each and every one of you for all your continued support and prayers. You all have been with us every step of Jason's journey and I would like you to continue to pray with me for Jason and for our family This past month we have had huge progress forward. It hasn't been an easy month being in hospital for 40 days but hopefully it won't be 40 days and 40 nights he he. Our little man is doing well and on the mend. We are just waiting it out for the antibiotics and then hopefully we are out of here on Wednesday. His tummy isn't right tonight, he keeps complaining that it is sore and had two runny poos tonight. I am too scared to tell the doctors otherwise we will be here forever!! Hopefully it will come right with the immodium. We got to get home otherwise we will never get home. Jason can have symptoms forever.
Otherwise besides the above he is fine. His drip in his foot infiltrated so at least he can walk again. Dr. P said to leave the drip tonight and only do it tomorrow when the next IV antibiotic is due. These antibiotics don't help with the tummy either. Need to get him right and off all this medication. Poor child!! Today Bruce decided to keep Nicole off school as she was coughing too much last night and didn't have a great night. So I went and spent the day with Nicole and Bruce spent the day with Jason in the hospital. A break for Bruce. I have had the easy task, it's Bruce that has been running - he he. Nicole is a darling, we had a great day together. It was nice to play and giggle with her. Nice to have my baby girl alone. She is full of beans though and Bruce has had his hands full!! Today was also nice to be able to cook for my family again. I made Bruce, Nicole and myself a nice stew. Nice to have my own cooking again :-) beats hospital food. Nicole and Bruce loved their food. Bruce even sent me a photo of her clean bowl and said she ate a whole bowl and her bowl for school was all ready for her as well :-). What a husband, bag all packed, food ready for her in the fridge. It's quite cute seeing how he dresses her, chooses her clothes, knows which clothes she likes and doesn't like. He seems to know her better than me now. A whole month away from your baby is a LONG time. Anyway we are almost there, two more sleeps and we are out of here and home with Bruce and Nicole. Got to get our lives back on track. I have to sort Jason out with someone to take care of him as I need to get back to work!! I am blessed that my work pays me per hour so if I don't work I don't feel like I owe them anything. No work, No pay but it works both ways. Tax time soon and I need to get moving! Actually need a holiday but what can you do?? Well it's time for bed. Mommy had a busy day with Nicole and it's time to get some sleep. An early night is in order!! Now isn’t that a happy face?? Jason and Woodie have been re-united after a few weeks of being apart. Woodie had gotten dirty from being accidentally put in the hospital washing with all the blankets so he had to go home to be cleaned and disinfected. BUT the two of them are very happy to be re-united. As you can see Jason is looking a whole lot better. Dr. P and Prof B are happy with Jason’s progress and happy to see that he is looking so well. They are just a little worried that the 5 day course of antibiotics will not be enough and have therefore decided that 7 days will be necessary especially since he has a feeding tube and they don’t want to risk the chance that this virus/bacteria or whatever it is isn’t killed once and for all. So we are here until at least Wednesday or Thursday to complete the antibiotics. Seems like the days keep moving on for us. I was hoping today then on Saturday we thought it was Monday and now it’s Wednesday or Thursday. Oh well as long as Jason is getting better and we kill this thing, that’s the main thing!! I had another long chat with Prof B. about Jason, his condition etc. He advised that the kidney problem is something that we do have to attend to and do further testing for but what he would like done is first the urology procedures, the circumcision and urethra dilation, allow Jason to recover from that and once Jason is healthy and off all medication he can do further testing. The medication would affect the test results therefore we cannot do anything now. He advised in 2 to 3 weeks to do the urology procedure. Give Jason some time to recover and then when he is healthy to do that but not to leave it too long either. Otherwise today was Mother’s Day. Happy Mother’s day to all you special mommies out there. The love of a child, wow isn’t it such a different kind of love? You will do ANYTHING for your children no matter how young or old they are. They are forever in your heart and mind. I managed to spend some quality time with Nicole at home a bit. Then some time with my own precious mommy and this afternoon spent some time with Jason and Bruce. I had a great day and was spoilt rotten. I am picking up weight with all the chocolates, biscuits, cake and biltong while being here. Ouma Huipie popped in to visit us today which was a lovely surprise. Jason, myself and Nicole were spoilt rotten – naughty Ouma!!! Anyhow that’s all my news, not too much to report today. The best news ever is Jason is doing well and we are on the “Final Countdown” to going home :-) Ahoy mateys!!!! Our little man is looking and feeling a lot better. We haven't had any temperature spikes since 5pm yesterday afternoon. Feeding is going well, I am even managing 200ml bolus feeds and therefore we can get some catch up growth. It's amazing what the right formula can do!!! I can actually see Jason's cheeks and legs have started to fill out. A huge difference from where he was last week. The formula is pricey but at least we will get a nice discount and at least it is staying IN and not coming straight back out. Jason's colouring in his skin is looking so much better as well. Not so white and transparent. His eyes aren't as dark underneath and he is just looking so much better. I was really hoping that we would be home tomorrow for Mother's day but Dr. P told me that the one antibiotic he is on for the Candida only comes in IV form and we therefore have to stay for the course which is minimum of 5 days. We are on day 3 today. I was a bit disappointed as I would have liked to have spent Mother's day with both my children together and Bruce but we can celebrate all these things when we get home. Besides things are going so well what's another few days. As long as Jason gets better, that's the main thing!! We received another 20 pound donation today. Thank you SO much, every donation goes towards buying Jason's Neocate, pump sets and feeding bags. Because Jason is immunodeficient we cannot take any chances by cleaning and sterilizing the pump sets and bags. We use to but have been advised NOT to as Jason is at risk of infections. I still have to work on getting prices and buying these supplies for when we are discharged. While we are here medical aid is paying. I have added a new tab on the left called "Jason's monthly expenses" to give you all an idea of Jason's needs and the expenses. I still need to get prices for a few things. I saw Dr. P and Prof B today. They are both really pleased that Jason is looking so much better. The herpes test was negative so Jason does not have herpes. They had to rule it out as it was a concern for them. Otherwise I had a long chat with Prof B today. He really is amazing, he is a Professor (kidney specialist for short) and wow he is so knowledgeable and even though he is a Professor he is so down to earth and so patient and kind and answers all my questions and explains everything so nicely. I have been worried about Jason's Kidney problems. The Prof explained to me today that he cannot do any further tests to test Jason's kidneys as all blood and urine tests will have false readings due to all the medication he is on. We will therefore have to look into this once Jason is well and off the antibiotics. For now the medication that he has put Jason on will prevent further damage. As he said we are lucky that we caught it now and not later in life where the damage is irreversible. Jason has had this all his life, it was picked up on the ultrasound when he was still in my tummy. Unfortunately this was overlooked and not investigated after Jason was born. The Motilium medication he has put Jason on will help to treat the nausea, vomiting and gastroparesis and it is also known to treat reflux. He has received a response from the pediatric Gastroenterologist in New Hampshire Hospital for Children. We will call him Dr. S. Well Dr. S has a whole lot of questions and has asked for further medical tests and reports to be sent to him for further investigation. He has a whole lot of questions which Dr. P and Prof B will have to answer and hopefully we will get further information regarding Jason's gut problem. I hope they action on this fast while we are here!! I must say being here in hospital for this month has forced the doctors to live our lives for a change. It has been a good exercise for them to see what we go through with Jason on a daily basis. Anyway it is way past my bed time. I must really get some sleep. For those of you celebrating Mother's day tomorrow. Happy Mother's day to all of you!! xxx
A happy face this morning
I thought it was time for a makeover. I hope you like the new website. I quite like the colors and thought it was time for a change seen as though we are having lots of change in our lives and change with our little man. Last night we had a night of NO fevers which was fantastic. A nice peaceful night without any problems. I still have a very restless night with the nurses in and out checking Jason's temperature and changing antibiotics and checking this and that. I had to laugh this morning, actually it wasn't funny at the time though. At 5:30 am the nurse came in and after being woken up so many times in the night I was becoming a bit grumpy. The nurse said to me "shame are you feeling sick" (because I was still in bed). I said to her "No it's 5:30am in the morning, it's still dark outside and I am trying to get some sleep. I think she got the picture and I wasn't disturbed for the next 2 hours. Great news again, this morning Jason's dietician came to see us and we weighed Jason and he has gained weight nicely by being on Neocate. When we got admitted he was 14.3kgs and today he was 16kgs. The dietician and I didn't believe the scale even after making Jason get on and off 3 times and we made the male nurse go and fetch the other scale in maternity. That scale also said 16kgs. SO how fantastic is that?? Yay for Neocate. He has been tolerating the formula really nicely I even managed 3 bolus feeds of 200mls at a time and he NEVER manages 200mls at a time. This will make our lives a whole lot easier if he can handle 200mls at a time and we can maybe fit in a extra feed during the day for weight gain. We obviously want to get to a stage where we are back to oral feeding but for now while we are in hospital and trying to get him better we will stick to the plan of the Neocate feeds and once he is better and we are home we can go back to oral feeds again. It's great that the Neocate won't cost R450 a tin at least and we will get a nice discount. At least that will help with our monthly expenses. We only had two temperature spikes today but thankfully tonight his temperature is normal. We just continue to pray that Jason is healed so that we can go home. I am REALLY hoping that we can go home on Sunday as Sunday is Mother's day and I would REALLY love to spend the day with my two children and my husband. So GOD I know you are listening, it's time. Our stay here is done and it's time for our family to be back together again. No more drips and bloods for Jason, it's time for him to run around the garden and play with the dogs and go to the beach and play with his sister. Time for mommy and daddy to be back together too. Thank you for all the love and support we are getting from everyone. I read each and every one of your messages. I don't get a chance to reply to all of them but I am reading them all and appreciate all the love and support xxx |
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