The feeds are up to 40mls an hour and TPN 20mls an hour. Tomorrow we stop the TPN and the peg feeds go up to 60mls an hour. We will see how his stomach reacts to that. I am really hoping that I am wrong but as I said to Dr. P this is what I have been dealing with at home. Feed him, his temperature shoots up, he starts gagging and almost instantly poos. It's crazy. BUT I mustn't jump the gun and lets see what tomorrow brings.
Woodie goes everywhere with Jason Last night temperatures started again 38.6 and continued throughout the day. Also loose stools are back and the tummy "alien" where his stomach makes a noise and you see the movements from one side to the other. To me my "gut feel" is that it is the feeds, the peg feeds. He has been fine until we increased the peg formula feeds so to me his body is rejecting the feeds. I could be wrong but this is my gut feel. He was wheezing last night and very chesty this morning. This could also be a reason. Dr. P ordered more bloods and a blood culture to be done. The full bloods came back with nothing unusual infection wise but Dr. P seems to think it is a secondary infection as the mucous that is being suctioned out of his nose and throat is yellow in color. We have changed meds a bit and added another antibiotic for this. Besides the temperatures today he seemed fine. He had physio this morning and this afternoon and is sounding a lot better.
The feeds are up to 40mls an hour and TPN 20mls an hour. Tomorrow we stop the TPN and the peg feeds go up to 60mls an hour. We will see how his stomach reacts to that. I am really hoping that I am wrong but as I said to Dr. P this is what I have been dealing with at home. Feed him, his temperature shoots up, he starts gagging and almost instantly poos. It's crazy. BUT I mustn't jump the gun and lets see what tomorrow brings.
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Our little man is doing really well and tolerating his feeds great. We haven’t had any issues. We have increased the PEG feed rate to 40mls an hour and decreased the TPN to 40mls per hour. Slowly but surely we are weaning him back onto his formula feeds via the PEG and he is doing really well. His chest is getting there slowly as well. We had to do physio and suction twice but every time it is getting better and better. Dr P is happy with things and said we must just continue with the plan. Jason can ONLY have water orally and that’s it. It’s
strange for me to process this as Jason was asking for some “milky” today, which I made him some milky and gave it to him in his sippy cup. I was scolded for doing that. Mommy made a wrong move there. Unusual for me to stop him from taking anything orally. BUT we continue with the plan. Tomorrow we are up to 60mls per hour PEG and only 20mls per hour TPN. Yay getting there. It’s nice not having so many poo nappies, very strange indeed for me but GREAT. Jason also said a 3 word sentence today which was a miracle in itself. This morning I was channel hopping trying to find Mickey mouse for him and after looking for a while Jason suddenly opened his hand, reached out to me and said "let me try" as clear as can be. It was AMAZING I couldn't believe what I was hearing :-) I have had a lot to process today. Dr P doesn’t want Jason to return to school. He said that his immune system is too bad and he is just going to catch infection after infection and continue to be admitted for these infections and be on antibiotics constantly. His immune system cannot fight these infections and he gets it too bad where he has to get admitted. Jason is such a social butterfly and LOVES school so I don’t know how this is going to go down. It makes me really sad that he cannot go to school. The other thing is where to from here. Who do I find that can look after Jason during the day so that I can return to work to help with the finances. I know one on one attention will be good for him and he will benefit but who do I find and how much is this going to cost. From my little investigation it is a big monthly expense. The other thing is WHEN can I return to work. Every day that I am off I am losing out on money but I guess that is out of my control. It would be nice if we didn’t have the problem that I had to work but we do, I need to help pay the bills at the end of the month. The blood results have finally came back for the MLPA subtelometric screen after 2 years of waiting and the results are normal. I am trying to process this as well. Normal is great but then we are no closer to finding a diagnosis for Jason. I did know that this test if it came back normal doesn’t mean there is nothing. This is why the micro array analysis test was suggested by the Geneticist but now the Geneticist is saying that an array test could still be done but the problem is she has not seen Jason and the concern is advising the inappropriate test on the basis of limited information. So in other words it would be better to meet Jason. Unfortunately they are in Johannesburg a flight away so this isn’t something that we can do right now. I would also like to correspond with the immunologist as I feel his immune system is top priority at the moment. I am hoping that we can correspond via email through our paed and myself and she can direct us in the right direction as far as tests and treatment. If she needs to see Jason we would have to fly to Cape Town but this is something that is important and I feel top priority. So my head has been spinning today and for me an emotional day. It’s hard for me not to look at our situation and feel hopeless right now. I don’t know what the answers are but I guess we have got to take it one day at a time. God is in control of the situation and God has a plan for Jason and for us. First step is to get Jason healthy and home and we can take it from there one day at a time!! As you all know feeds started today via the PEG set at 10mls an hour. Well we have done 10 hours and have to give his tummy a 2 hour break. I am happy to report that this has gone down well. We have had two tiny poos if you can call them that and NO gagging. I know it’s a little amount he is getting but shew for us not to have basically any poos in one day is HUGE. I don’t think we have ever had this. So a HUGE step in the right direction.
Bruce and I saw the dietician today and she has given us the plan forward for the next couple of days. Tomorrow we increase the PEG feeds to 20mls per hour and reduce the TPN to 40mls per hour. Friday and Saturday we increase the PEG feeds by 20mls per day and decrease the TPN feeds by 20mls per day. If all goes well the TPN feeds will stop on Sunday and on Monday we will see if Jason can tolerate either oral feeds or bolus (PEG feeds without the pump). So eventually we will be where we were with Jason receiving 1500kj per day. That is the target. We had a bit of a rough time today with physio and another drip infiltrating. With physio we had to suction twice (morning and afternoon) which is extremely traumatic for Jason and for everyone holding him down. Today with the re-siting of the drip he went hysterical which he doesn’t normally do. Everything has just become all too much for him being poked every day and held down for suctioning. Everything Jason goes through I go through with him and it’s difficult and extremely traumatic for both of us. I look forward to Sunday when the TPN feeds are stopped and no drip is needed. We have finished the 7 day course of antibiotic so that is good as well. Now just for this nose, post nasal drip and lungs to clear. It is getting better but I have never had a chest and sinus infection last this long before. Hopefully that will stop soon as well as we need to stop all these traumatic episodes. Jason and I were spoilt rotten today. A friend of mine from far, far away (overseas) kindly arranged to have some Woolworths goodies and food delivered to me. I am extremely touched by this really kind doing, it really means a lot to me – no more hospital food YEAH. Tomorrow Jason and I plan to show his monkey how WE can eat a banana!! Another friend of mine came to visit us and brought Jason a whole bag of goodies and toys. He was so excited and hasn’t stopped playing with everything. I was also spoilt with some goodies but I am not going to tell what my special request was. The girls at work may have an idea :-) Bruce and Nicole are doing well. Bruce is doing such a fantastic job with our darling daughter. She is a year old and VERY busy. She doesn’t stop until she eventually passes out so she is keeping daddy VERY busy and daddy is doing an amazing job with her seeing to her needs. Shame daddy is also trying to work and coming to see Jason and myself carting things back and forth that we need. Shame I can see he is tired but what an amazing husband I have. We are both extremely tired and have our hands full. At the end of this when we home we really need some time out. Maybe a day or two off for Bruce so we can spend some time together and just have some time out to relax as a family. That will be nice. Anyhow it is late, this mommy is buggered and it’s time for bed. Thank you for all the messages, well wishes and prayers. I am reading them all and don’t get time to reply to everyone but just know that I appreciate everyone’s support. Please keep up the prayers for Jason. Prayer is powerful!! Night night We had a good night, Jason is looking good. Today we start feeding Jason via his feeding tube after 9 days of no formula or food in his tummy. Big day for us as we have to monitor that his body tolerates food again. They are going to start the rate via the pump at 10mls an hour. Tiny amount but they have to go slow to monitor the situation and make sure Jason doesn't have a reaction. We will be closely monitored by Jason's paediatrician and dietician. Please keep Jason in your prayers!!! I will keep you posted on how things go.
Today was a bit of a rough day for Jason and for mommy. It started with yet another infiltrated drip and puffy arm but luckily we caught it early so it wasn’t too bad. Shame my poor sausage had to go through another re-site of the drip. This time they decided to go to the foot. They are lucky mommy wasn’t sitting there this time as I would have said no ways (very bony in the foot). But I think at the end of the day it may last longer than the ones in the arms and hands. So Jason now has a bandaged foot. He isn’t too worried about it, takes it in his stride like he does everything else.
This morning we had physio, his chest just isn’t clearing as nicely as we would like it to. The phlegm is loosening up but Jason isn’t coughing it up and out like he should so it is just sitting in his throat which isn’t good. This afternoon’s physio he wouldn’t cough for us at all so the physio and I decided it was necessary to suction his nose and the back of his throat. NOT nice to hold your child down while he screams and cries “daddy, daddy, daddy”. Awful but necessary to clear and we got some really thick secretions out that really helped him breath and clear the airways a bit. He is still very wheezy, I can hear while he is sleeping now. I saw the dietician this morning as well and we had a chat about the plan forward. I must admit the plan did shock me. I knew they were starting peg feeds tomorrow but goodness I didn’t realize how slow they were going to start. They are going to VERY slowly wean Jason off the TPN (vein feeds) and onto peg (feeding tube feeds) into the tummy again. They are going to start the peg feeds via the pump continuously but set at 10mls an hour!! Yes 10mls an hour!! That’s like 2 teaspoons an hour! Shocker for me and made me think of Neonatal ICU days when Jason was a new-born prem baby weighing 1kg. I guess this is the same thing we have to make sure that he is tolerating the feeds into his tummy and they want to take it really slow. Like super slow. I understand and I get what they are doing and I agree with the plan but I guess it really shocked me and made me realize the seriousness of the situation. I know it is serious but reality just hit I guess. The reality of how sick my little man is and the reality that we are here for much longer. This is going to be a SLOW process. It’s good we are going slowly I know. So mom had a bit of a wobbly and tough day processing all this. I was hoping that by the weekend we would be home but this isn’t going to happen. We are here for at least another week. Straight away my mind races and thinks about Jason, about Bruce, about Nicole, about home, about money, about the fact that we are stuck here for a long time living separate lives. Bruce and Nicole that side and Jason and I this side. It’s hard not to worry about finances when I am missing out on money every day that I don’t work. We raised that R8,000.00 at the Barnyard Fundraiser which was fantastic as that will cover a month’s supply of feeds, pump sets, syringes and therapy. But now my salary that would cover medical aid and help with our normal monthly expenses we don’t have. It’s crazy I put so much effort into the fundraiser and that money is going to help but now we are short anyway. As Bruce and my mom said there is nothing we can do about it. We cannot control what happens and we just need to stay focused and concentrate on getting Jason better. I was reading a bit of my Joyce Meyer’s book today called “Never Give Up” and she was talking about stop worrying about the past. The past is in the past and focus on the now, focus on the future. It is true but it isn’t easy to forget what you have been though. The past does have a lot of negativity for us and worry for us – Jason not eating, Jason having terrible diarrhea, Jason gagging and vomiting and dehydrating until we have to get admitted eventually. It’s not easy to forget that but I need to focus on what lies ahead and stop worrying that this will happen in the future. I have the assistance of Jason’s paediatrician and dietician and they are working together and no matter what happens they are here to make the decisions and they are here to see what happens when we start feeds tomorrow. We are in the right place and we are getting the assistance and help that we need. Who knows what the future holds but we will take it one day at a time and not focus too much on the too far future. One day at a time!!! We had a good day today. Jason is looking SO much better. He is chatty, he is happy; he is getting out of bed. All the signs that he is on the mend. His chest is still pretty bad but we are now having physio twice a day and the secretions are loosening nicely making him cough a whole lot more. The diarrhea - I was about to report that it was non-existent today but he has just done a massive one and we have had to change the bedding again. It always seems to be night duty that this happens. The night nurses are starting to get a complex. Today during the day he was absolutely fine. We have increased the rate of the feeds from 40mls per hour to 50mls per hour but surely that wouldn’t make such a big difference. We are still giving the buscopan for the stomach cramps and pains. His stomach is still making a lot of noises and bubbly. His bum has healed nicely from the terrible rash he had. The drip infiltrated again today unfortunately. This is the 5th time we have changed drips in the 6 days we have been here but that’s what happens when you have a drip in both arms/hands and such fragile little veins. Luckily Jason is so good with having his drips done – poor sausage. We had polygam last night so that should help him with his immune system fighting the infections. Jason had a good night sleep. Mommy didn’t sleep much at all. With polygam you always get bubbles in the line and the machine beeps when there are air bubbles so I was up quite a bit with that. My slow leak in my air bed turned into a fast leak so I often ended up on the cold hard floor. I was up pumping quite often. I guess those chocolates from my work didn’t help with that. Thanks guys!!! Bruce has come to the rescue and brought me a new bed. What a husband!! Speaking of chocolates our boy ate a chocolate today!!! I handed him one and he sat there merrily chewing on it. Unfortunately silly me chose the toffee one and the toffee got a bit stuck on the roof of his mouth and teeth and he didn’t like that which caused him to gag a little. BUT he ate something and that in itself is a miracle :-) He also drank a lot of water with his sippy cup today. Today I got a huge fright and this is a warning to those of you that have children with pegs. This afternoon when I was going to bath Jason, on his peg I saw these little black spots that looked like eggs or like black strawberry pips. I called the nurses and my heart sank. I thought here we go again Jason has something else now, something has laid eggs there or he has some sort of bacteria there. We called infection control to have a look and then Dr. P came to look between his patients. Thank goodness all it was is the losec medication that had leaked out of the stoma site. Because he has lost so much weight his mic-key feeding tube is a little loose now and stomach contents does leak out. So this was his medication that had leaked out. Phew thank goodness for that. I was worried something else was brewing. Anyway our little man is on the mend. Every day we see improvements, every day he is getting stronger. We have been here in hospital for a while but at least Jason is getting the medical treatment he needs and the paed and dietician can monitor him and see exactly what is going on. When we start feeds at least we can monitor the changes. I do believe we will see a change in Jason, I do believe one day we will have a miracle and Jason will be healed and start eating. My faith is very strong and I believe God is in every situation. We may not think he is and we may question “why me”, “why do I have to go through this”. Well it’s not up to us to question God’s plan for us. The devil is there to destroy but God knows us, our spouses and partners, our children, our parents and our siblings from the top of our heads to the tips of our toes. He had plans for us before we were even born. Some of us go through suffering through illness, financial difficulties, marital or relationship problems. Life is tough we don’t know what lies ahead tomorrow. Tomorrow could be a really good day or tomorrow could be a really terrible day in whatever you are going through. BUT have faith, trust and never lose hope that God is with you in every situation. I have a lot of questions and concerns for the future for Jason and where we are going with things but I do believe and I do have faith that God will guide us in the right direction. He will open doors that need opening and he will close doors that need closing. He will direct us to the right doctors, to the right school, to the right therapists and specialists otherwise he will perform a total miracle. Miracles do happen and I will continue to keep the faith no matter what happens. I am seeing a bit of progress. Baby steps but progress. Last night was again rough with the amount of diarrhea we had to deal with. It's crazy the amount of fluids he is losing when he is getting nothing in his tummy. You would think the diarrhea would stop!! Anyway last night we had to change the bedding twice and I must have changed Jason 5 or 6 times. The nurses were concerned and phoned the paed at 2am - shame poor Dr. P, what an amazing man, he never stops working. He puts his everything into his patients. BUT I am glad he got that call because the nurses were concerned and I have been concerned for a few days as well. This call helped with action!!
Anyway I wanted some action today after last nights pooing, how can one little body poo so much with nothing in it? The TPN drip infiltrated during the night again so his whole arm was puffy with fluid this morning. This upset me and when the nurses came back to say they are going to re-drip I said to them no they are not, not until I have spoken to Dr. P, spent some time with him and the dietitian. I needed answers after 6 days in hospital I have been battling to see progress forward with my little man. So anyway this morning I saw Dr. P and the dietician together which was good. They were able to plan together the way forward. They have decided that they want to continue with the TPN feeds until about Thursday and slowly start introducing PEG feeds. Wean him off the TPN by reducing the rate of the pump and slowly increase the rate of the peg feeds. I agree with this and think it is a good plan forward. They have repeated Jason's bloods so are keeping a close eye on his protein and electrolyte levels. Even with the TPN and the drip his protein was low and his electrolyte levels were low. Not surprising the amount of poos he had last night! I did manage to get my long chat with Dr. P about all my concerns. It was good that my mom was here with me as well and he was able to explain things to me and my mom and my mom could also ask some questions as well. He advised that the pooing is more than likely as a result of a combination of the Klacid medication which is treating the sinus and nasal congestion, post nasal drip and bronchitus as well as the amount of mucous that Jason is swallowing which is aggravating his gut causing him to poo more. I guess this makes sense. So he has stopped the Klacid and added immodium to slow the gut. I still question this as to me last nights pooing was ridiculous and today we only started the TPN feeds late this afternoon so he went without feeds the whole day and we had NO poos. I guess time will tell as now we have started the feeds again and we will be able to keep an eye on this. We have also started polygamy tonight so hopefully that will help boost his immune system. As far as a way forward with Jason and where we are going as far as treatment and a diagnosis. We could go to Chief Albert Luthuli Hospital or Red Cross Children's hospital but as he says are they going to be able to help Jason, are the right doctors there to see Jason? Jason has complicated history and complicated problems and we will need to spend weeks in hospital in order for them to review his case and do the necessary tests. The technology here for testing isn't the greatest but we don't have the finances to just fly overseas and get a quick fix and do the necessary tests. I have more questions than answers right now. My mind is racing with what to do, how to do it, how are we going to afford it, who do we see etc. Dr. P is also concerned about school for Jason, he is concerned about the risks involved with him going back to school and the bugs and viruses he will pick up there. As he says he sees "normal healthy" kids coming in for all sorts of admissions and with Jason being immunodeficient and prone to catching everything it's not good having him with so many kids. BUT what can you do. This is something Bruce and I need to discuss and decide on. We have lots of decisions that need to be made in the future but I am relying on God's guidance and God's protection. I know that God will open the doors that need to be opened and close the doors that need to be closed. I don't know when I can return back to work but God has also always provided for us. For now Jason is my main priority and we need to get him healthy and strong. What that will take, I don't know but as I said I am relying on God's guidance and I believe the right people will cross our path, finances will be provided for, progress will be made. This is a LONG slow process but a necessary one and one that I am prepared to wait here in hospital for. We are in good hands and this is a positive step for the paed and dietitian to help with reviewing what is going on with Jason. Otherwise Jason is looking really good today. He is comfortable, he is happy and I am starting to see the old Jtjie. Every day gets better. We need this chest to clear but we are doing all the necessary things for that to happen. Nebbing and physio is helping. Today my mom came to visit and the girls from work. Jason loved all the attention he was getting and all the presents. Even mommies presents he thought was his. It was AWESOME to see him look at my chocolate Ferrero rocher and put it to his lips and have a taste. A good sign indeed!!! It's hard to believe we have been here 5 days already. 10 days of hospital with a 2 day break in between. Phew getting far too comfortable and settled in here. Jason is doing fine. After last nights rough night he is absolutely fine, it's mom that battles with the after effects. Children are amazing they just bounce back and Jason was absolutely fine today. I managed to see two of my good friends today while I had my hospital break with Nicole. It was nice to have a bit of normality and nice to be able to chat about other things besides hospital stuff. Jason was very pleased with the toys his godmother brought for him to play with. He LOVES his new aeroplane and has even gone to sleep with it. I tried to put it on the table after story time but he was having none of that, he had to hold it and is sleeping peacefully with his aeroplane in his hand. Woodie tucked next to the aeroplane. His nose and post nasal drip is still giving him trouble. His chest is sounding much better so that is good. Now to get rid of this mucous that is causing all the drama. I didn't get to see Dr. P but he saw Bruce and everything is good. He went through the test results with Bruce and Bruce is happy that he is being very thorough with Jason making sure EVERYTHING is tested. According to the bloods we did last night his protein levels are low but this is something we will discuss with Dr. P and the dietitian tomorrow. Bruce said that Dr. P would like to start PEG feeds tomorrow night. So this is a good sign. I am sure everything will go smoothly and if not we are in the right place. Still lots of mucousy poos happening. Strange that he is still pooing so much even with nothing in his stomach. We will see how that goes when we start feeds. Jason's other drip decided to give in today as well but luckily finding another vein wasn't too bad today. He was very good, showed the nurse which vein to use and didn't make a sound. I am not sure what happened last night. I guess it was from being woken up to taken to the treatment room and taking so long being prodded and poked and then the sterile gowns and masks while changing the TPN feeds that frightened him. Quite an ordeal at 12pm in the middle of the night. Think my blow up bed has decided to give in. Seems to have a slow leak. Last night I ended up on the cold floor twice. I am not sure if it's a leak or I didn't have the seal closed properly. I guess I will know in the middle of the night tonight. May end up in bed with Jason later :-). If it is a leak I am off to the shop ASAP. An uncomfortable mom is a grumpy mommy. Well speaking of which it is time to hit my blow up bed and catch up on some sleep. Night Night all xxxx What a terrible night. Jason's TPN feeds drip infiltrated causing the tissue in his arm to swell and he woke up crying in pain. We had to re-drip which took about an hour to find a decent vein. Managed to find one in the hand thank goodness as they started looking at his feet (a lot more painful in the foot because of being so bony). My poor baby boy screamed and cried for about an hour and a half eventually crying "daddy". Breaks my heart for him to go through so much and there is NOTHING I can do about it but go through the motions with him. Concerning that there aren't too many decent veins left as he has two drips, one in each hand and these don't last much longer than a few days. Little hands and arms have pin pricks and bruises all over :-( The vein that they did find isn't in the best position on his hand (by the thumb). Hope it can hold out for a while.
Mommy is looking and feeling finished this morning. Time for some breakfast and then to face reality and freshen up for the day. Jason is looking a lot better this morning. We had a bit of a restless night last night. His stomach is still making terrible noises and cramps and he tossed and turned quite a bit. Also with 3 hourly nebbing and antibitotics during the night the nurses are in and out. You never get much sleep in a hospital but we try and catch an afternoon nap when we can. His nose and chest is giving us a bit of a problem at the moment. His nose is very congested and he is battling to breathe. Dr. P has added Acc 200 and singulair sprinkles to help. Shame his mouth is very dry and always open because he can't breathe through his nose. I am giving him water regularly and spraying his nose often to try and clear it. This is taking quite a while to clear and we have been nebbing for a few days now. Hopefully tomorrow with the added meds it will be a lot better. Feeds via the vein are still going fine, nothing new to report there. He is still having a lot of poos even without food in his tummy which is crazy but while we are here at least all these things can be recorded and checked out. Not like me having to go home with the problem. This time I am adamant that the doc and the dietician are involved when we start introducing food again. They need to see what is going on instead of leaving me to it and only returning when he is dehydrated. Time will tell I guess. Otherwise not too much news to report, Bruce and I swapped places today, he spent the day with Jason and I spent the day with Nicole. I managed to have a little afternoon sleep while she slept and have a decent shower instead of a splash in the bath worrying that one of the other parents are going to walk in on you because there is no lock on the door. Jason seems to have a bit of separation anxiety now. I think this is because of me leaving him alone in the hospital when I went to the fund-raiser. If leave his sight now he starts shouting "mommy where are you". Yesterday when I left him sleeping and ducked out to the shops when I got back he was awake and very upset shouting "mommy, mommy, mommy". I guess we are always together now day and night as well but I hope he gets over this because he has never had this before. I am doing fine, I seem to do better when I am at the hospital with Jason. When I am not with him my mind starts to race and worry about him and think too much about things. I guess being IN the situation you don't get time to think about things and worry but if you are out of the situation it's another story. |
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