Jason was admitted into hospital paed ward on the 18th September. He was having his usual symptoms - fever, nausea, gagging, runny tummy, couldn't take anything orally and eventually we could not manage him at home. We had started oral antibiotics but with not taking anything orally we were not winning. He was dehydrated and needed a drip for fluids and to see his doctor. We spent 5 days in the paed ward. His diagnosis was Enterovirus which was detected on the nasal sputem. Both his covid tests were negative. He was really sick with it, feeding anything orally was a big problem so we started TPN feeds straight away. We know from experience that Jason takes forever to be able to feed orally. Whilst in hospital he had a chest and abdomen xray, lots of bloods, antibiotic, TPN and gut rest. Eventually Jason turned the corner. Thumbs down became thumbs up, he wanted my cell phone to play on, he started accepting oral feeds and started asking "when we going home". The doctor and I were happy and comfortable that Jason would be ok to go home.
This was Monday. We both had to re-do our covid tests which really annoyed me. We knew we didn't have covid! But hospital procedure, we both did the covid rapid tests. We waited in the car in the shade while Jason slept on the back seat. About 30 minutes after testing our paed phoned. He said we have a problem (me thinking no isolation beds) but no Jason's test was positive and mine negative. This would mean we had to get admitted into the red zone, the covid ward and it was entirely up to me if I wanted to be with him or not (at the risk of me getting covid). It was a no brainer for me. I would definitely not send Jason alone. He needs a care no nurse can give him. They do not know Jason and his complex problems. So from protecting ourselves from even normal infections, never mind covid we were now the "infected ones". From avoiding normal wards and going into isolation to going into the covid ward, it was quite a shocker!
I choose to document Jasons Journey due to the fact that I can go back and refer to the difficulties and infections Jason has. We are on day 10, the day you need to get to where you are no longer an infection risk.....
Day 1 : High care covid ward...
We got discharged on Wednesday afternoon. Jason was doing better, he had stopped gagging, he had started drinking his pediasure, we had turned the corner and ready to complete his recovery at home. Well unfortunately that didn't last. As we got to the car on discharge he started gagging. We got home and he had a fever. The last few days he's had persistent fevers, chills, goosies and gagging. It just went from not great to worse. He managed 2 pediasure Thursday and Friday, 1 on Saturday and none since then. On Sunday his tummy started going wild in there and loose like water. I thought it was the antibiotic or other gut bacteria so we changed to Flagyl antibiotic.
Jason was gagging with fevers day and night and on Monday morning I messaged our paed to admit us again. He needed a drip for fluids and IV meds to control the pain, fevers and gagging. We had to both do our covid tests AGAIN which I felt was so annoying as we knew we didn't have covid but hospital protocol we did the darn tests again. We had to wait an hour for the results with Jason sleeping in the back seat of the car not well at all. So I was waiting in the car in the shade and our paed phoned. He told me there's a problem - I thought damit no isolation beds! No it wasn't that. Jason's covid test came back positive! Mine was negative. Absolute shocker! How? Where? When?
So this is a whole different ball game, we are the "infected ones". Instead of avoiding the red no entry lift we are going into the red no entry lift. Instead of isolation to protect Jason from viruses and bacteria, we have to protect others from us. We are in the covid ward - full PPE. I can't leave the ward due to exposure. It was quite frightening and overwhelming at first but honestly my life is always overwhelming with Jason's condition. It is scary knowing he has covid. More like unbelievable actually. We have been so ridiculously careful with him but this just proves you cannot avoid covid! I always said most of us would get it but Yo I didn't think Jason would. I was still in denial, hoping the PCR would come back negative but that too came back positive last night.
How is he doing? He's doing ok. He's being closely monitored in high care, he has the same symptoms that he usually has - nausea, gagging, chills, goosies, loose tummy. I am hoping he's on the road to recovery and won't get worse. He was a lot worse last week gagging day and night and more settled now. He is sleeping a lot but he is on a lot of meds which will make him sleep. I don't know when or where he got covid so we don't know how long he has had it. He has only been in hospital and home. We have been very careful. So we are monitoring him carefully, done bloods, his chest x-ray was good. We started TPN feeds last night and today we have started polygam. Hopefully polygam will help him fight this as well.
The rest of the family are in isolation. We had to move very quickly on that. I am fine, Bruce and Nicole are fine. I am negative but have to be careful in the covid ward. Bruce and Nicole have no symptoms. Bruce and I have had our first vaccination. We are due for our second but we have been in hospital so just haven't gotten around to having it yet. We all have our covid vitamins now just in case.
Please keep Jason, Bruce, Nicole and myself in your thoughts and prayers. This is obviously a scary time for us given Jason's condition but we are keeping positive and keeping the faith that we will get through this.
Day 2...
Our paed seems happy with him. There is obviously a concern about covid secondary worsening. The thing with Jason is we don't know what day he is on. Has he just got this or did he have it earlier last week. We don't know. As Bruce and myself were saying today. You never know, Jason could also be asymptomatic and getting over his enterovirus infection from last week still. With covid everyone is different. It's easier when a patient gets an infection, tests positive and you know what day you are on but Jason has been sick this time round since the 18th September so it's difficult to say. His infection levels are ok, his bloods are good from yesterday and his chest is sounding good.
He did sit up today and say "are we going home tomorrow". The nurse was quite shocked as it's the first time he has spoken. Dad did promise him an Xbox game when he gets home so he's trying desperately to get home 🤣.
I am doing okay just battling with headaches. I normally get daily headaches anyway but wearing this PPE outfit and N95 mask is not easy. The mask is thick, uncomfortable, hurts your ears and head and this yellow gown is like a thin raincoat but yo it's hot. On the arms you can see and feel water droplets from perspiring.
I have to say these nurses are AMAZING. To wear these outfits and masks all day every day must be so challenging. I'm hot and I'm not even moving around! I'm amazed at their nursing care for their patients doing long 12 hour shifts and really they don't get the recognition like they should from us as a community. What these nurses have been through with these covid waves has been so traumatic. Losing patients and colleagues. We see it on the news and on TV but I'm seeing it first hand now how they come in day or night, work in these stressful circumstances with these PPE outfits and they're so patient and caring. These nurses need to be recognized!!
Day 3...
He's looking flushed today with those blotchy red patches doing their rounds on his body. His fever is rising that causes these reactions for Jason. Unfortunately with fevers and gagging we can't feed him orally. We need to up his nutrition intake as his keytones in his blood is high due to lack of nutrition. So we need to increase the TPN feeds and hopefully try some oral feeds today 🤞. With upping the TPN we have to keep an eye on the drip as it's harsh on the veins.
Whilst Jason has covid his symptoms are the same as any other infection he has had. We just have to be extra vigilant.
Hospital Day 3 continued...
Today was a thumbs down day but ended off with a thumbs up and Jason looking a lot better 👍. He struggled with gagging and being uncomfortable between trying to sleep just to feel ok. Yesterday he was a lot more content BUT tonight he's looking good and peaceful.
His paed came tonight and is happy with things. I wasn't happy with the drip as it was looking red and looking like it was on its way out so he took blood to repeat bloods and did a new drip.
His vitals have been absolutely fine, chest good, a little snotty and a small cough plus odd fevers causing the gagging. Hopefully the polygam will kick in tomorrow and he will be feeling much better. Once he is and the gagging stops we can start some oral feeds and hopefully head on home in a day or two or three.
Our family have been blessed with lots of messages and offers to help. Bruce and I have had to learn to lean on others this time as we don't have a choice with the covid diagnosis. One special friend brought me shampoo and conditioner yesterday, one special friend dropped off clean clothes for us and fetched the washing which is a huge help and the ladies at my work clubbed in together and arranged a care package of food, drinks and snacks for me. It felt like Christmas getting a parcel 🤣. I ordered from Woolworths last night and Bruce and Nicole got their delivery today so they were very chuffed with their parcel. This gave Bruce a bit of a break as he just had to microwave the veggies and the chicken was cooked. Hooray for Woolies meals. I think Nicole is enjoying daddy's meals better 😋.
Day 4...
Our paed came last night and we re-sited the drip and did a whole lot of bloods. His CRP levels are normal which is good but he has other inflammatory markers that are elevated. His potassium is low so we started potassium last night. His urine culture came back and two bacteria cultured. This could also be from contamination of the area not being totally clean and sterile though.
During the night last night he had two very big watery stools which resulted in us having to change him, the bedding and giving him a bed bath. We have sent a stool sample for testing.
A lot of bloods have been done and the main cause of concern is the low potassium. Low potassium can be for a number of reasons. The obvious one is dehydration but after being in hospital on iv fluids and giving iv and oral potassium it should have increased more than it has. The levels were tested last night, this morning and tonight and not much difference.
The diarrhea wasn't too bad today so I'm not too concerned about that.
Our paed came tonight and shame he spent an hour and a half with us. Examined Jason, checking everything, going through his bloods and urine results, monitoring him by watching him and his vitals. Deciding what meds need to be taken or stopped. He's worried about the potassium. We are going to up the oral potassium and we will see how that goes. He has added meds for the sinus and mucous. His cough is sounding chesty. We have been nebbing 4 hourly but think we are starting chest physio tomorrow. We don't want that chest to get bad. We are repeating the urine test with a clean fresh urine sample and will see those results.
Otherwise he's doing okay considering he has covid. We just have to keep monitoring his symptoms, treat those and keep a very close eye on him.
The rest of the family are all doing fine and no symptoms. I am at risk being in the covid ward but I'm trying my best to be as careful as can be. I'm getting more settled in this ward and getting use to things. The nurses here are lovely, kind and caring and it's amazing watching them work with very ill patients caring for them like their own family ❤.
We have had so much love and offers from many people offering to help and dropping off things for me and Jason ❤. My work ladies have been amazing. I received a lovely parcel today with some snacks, drinks, treats, nappies, wet wipes and the cutest dinosaur cuddle toy for Jason.
Shame our paed is finally home, it's 10:30pm and he messaged to see how Jason is. What an amazing man. We are so blessed.
Day 5...
This morning when I did his saline rinse, his nose was very clogged and discolored whereas yesterday it wasn't as bad and clear. His gag is now more a wet cough. The physio came today and gave him chest physio and also suctioned his nasal passages for a specimen to be sent off for testing.
The stool test showed no positive result which is great news so this loose stool must be covid diarrhea. It is easing off and the plan is to slow it down if it doesn't.
The repeat bloods were done this morning - full blood count. His potassium has gone up slightly by 2. Not as much as we were hoping for but hey it went up at least. His sodium is also low. So he's on meds for those two things.
We have another doctor on Jason's case who will be assisting with his input with the current covid infection as well as an opinion on his long term care. This doctor has a lot of experience with covid patients and a lot of ill patients requiring parentral nutrition (TPN) and enteral feeds (feeding tubes). Jason has a complicated history so another specialist is most welcome.
We saw Jasons nephrologist this evening. He checked in to assist with the renal (kidney) issues as well as assist with the electrolytes and minerals. The protein creatinine level has gone up to 1116 which is alarmingly high but as the prof said he expected that due to the covid. He checked on Jason and went though all the test results.
Regarding gastrointestinal issues Jason is having and has had his while life, our paed will be contacting a specialist surgeon for his opinion to see where to from here.
So it was quite an emotional day for me. Today was the first day I didn't have it all together and that's ok too. This is certainly an emotional roller-coaster and not the best place to be. I am holding it together but at the same time emotionally and physically exhausted. Exhausted yet not getting much sleep. I have also started with a snotty nose and the headaches are there 24/7.
Plan from today... is to take things one day at a time, to pray, trust in God and trust the doctors will also have a breakthrough in Jason's case.
We did have a beautiful moment today at the hospital. There was an arranged buss of people - famous people that came to the hospital in a double decker bus and put on a performance for the nurses, doctors, hospital staff and patients. We could see the bus from our window and hear the music. It was very special. I had such a beautiful moment with Jason. We were listening to it and I just held his hand listening to "Africa by Toto" and prayed out loudly for him. The tears rolling down my cheeks. I just prayed for healing for Jason (and our other patient here with us) and wisdom and a breakthrough for our doctors. It was a beautiful moment.
You know also being in the thick of this pandemic on the other side with these doctors and nurses is so surreal. The numbers are down but don't be fooled - protect yourself and your family and give these doctors, specialists, nurses and hospital staff a break. They are tired, they are working long hard days where they're getting short breaks and most often are being called on their days off to assist. It was lovely to see the unity of these staff members outside enjoying the performance and feeling normal for a change.
Hospital evening Day 5
Last night was a good night. Jason was settled and rested well. His tummy is still working quite a bit so we are giving him meds to slow that down now that we know the stool test results and no viruses or bacteria are present.
He's still having these persistent fever spikes which makes him start gagging, coughing and feeling unwell.
He is looking a lot better. I forgot to add the positive of yesterday was he managed some oral feeds - 1 peptamin prebio and half a pediasure. Today I need to try encourage oral feeds as we need to improve his nutrition to help with the potassium and sodium levels. With the TPN we have to run it at a certain rate which isn't much as Jason's veins can only take so much.
Here's hoping for an easier, restful, good day today.
Day 6...
The potassium is still giving us a problem despite oral and IV potassium. The doctors have increased the dose again.
His tummy is still very watery. We are giving him imodium to help.
The two bacteria that were picked up in the urine culture are a problem. They are antibiotic resistant which means they are hard to kill and only respond to certain antibiotics. The doctors have changed the one antibiotic.
Fevers are still spiking causing Jason to be lethargic, gag and be very uncomfortable. I was happy that when the paed was here his fever spiked and he was able to see Jason's response to a fever.
My eyes are battling to stay open here. We will be doing a blood test at 1am so I better get some sleep. All in all a good day was had with lots of discussions with the three doctors.
Last night Jason had very watery diarrhea. We had to change him and the bedding 4 times. We are not sure if this is your topical covid diarrhea or if it's the new formula.
Seen the one doctor this morning. He's happy with things, happy that Jason is looking better than yesterday. He is happy the potassium has come up a little and happy with the course of antibiotic. Jason still has a long road. We are looking at at least 5 days for the potassium and antibiotic.
I also had a runny tummy this morning plus my sinuses are a problem. I am also extremely tired but I'm not sleeping much at all - 4 to 5 hours a night and it's broken sleep too. I have done another covid PCR test and will see the results tonight.
Essentials are a problem here but a work colleague is dropping off a nice curry for me today and she is kindly getting me more nappies and wet wipes.
I must go have a snooze while I can - exhausted.
Day 7...
We are struggling with the nutrition to get the right formula for Jason that is not going to make him feel sick. I have always said Jason has gut issues and when he's sick it always affects his gut making him nauseous and gag. We have had this his whole life. He has formula because he can't or won't eat properly and the formula is the best option for calories.
Yesterday he did quite well with the new formula but with the diarrhea during the night last night we were concerned it was the formula. We decided to alternate formulas and see how he tolerated that. I wanted to give him a feed today - his new formula but he didn't want it so I gave him a yoghurt instead. His next feed I said to the nurses ok I am going to feed Jason now, please look at him now. His vitals are fine, his fever is fine, he's sitting up and watch TV. He was absolutely fine. I gave him the formula and not long after that he started a reaction. He started burping, his ears went red, his tummy bloated and started making noises, he got lethargic and started gagging. He then slept for quite a long time and woke up later ok. I was pleased that his paed was here to see the reaction at least.
So this morning after the runny tummy I decided to rather test again. My sinuses started on the 29th, I've had bad headaches and tired. I normally have headaches and I thought the PPE outfit and mask was making it worse. I also thought the tiredness was because I haven't slept properly in weeks. 5 - 6 hours plus interrupted is not much sleep. So I did a covid PCR and the doctor phoned me. I thought he was phoning me about Jason but it was to tell me that I had covid. I feel ok, have sinuses, terrible headaches and tired but when you are a mom spending weeks in hospital with a sick child this kind of is how you normally feel. Sleeping on a chair or pull out stretcher and getting disturbed so much is normal. Headaches and tiredness is how I feel on a daily basis without covid. It is quite surreal being in the covid ward with a sick covid patient. What can one say? It is one of those situations where you can either laugh about it or cry. I choose to laugh about it.
Anyway I better get some rest. At least I don't have to wear my PPE outfit and mask to sleep. I still have to be careful around Jason as we could make each other's symptoms worse.
Day 8...
Last night he had one very loose stool where we had to change him and the bed - like water. He did have a fever in the night which caused gagging and discomfort. His oxygen levels dropped during the night to 88 to 83 and the nurse decided she wasn't happy so put him on oxygen for the night. We believe this was due to the sedative meds, which we have stopped.
We saw the dietitian, the physio and his paed today. Diet wise we need to try give him what we can. Mainly pediasure if we can and she's ordered another feed to try. The paed was happy with how Jason was looking. He arrived just as Jason's fever had increased to 38. He had physio which he loves and the physio suctioned his nose. There was not much in his nose.
I am still convinced it's the gut causing the problems. This was video was taken now when he suddenly changed again. This is just one of many times this happens. You can hear the tummy at the end. Now you can't feed with someone feeling like this. I did manage to give him half of my soup at lunch which he seemed to like.
Tonight I'm getting an early night. I am buggered! I am feeling ok. Just sinuses, headaches and tiredness.
Last night went ok. Jason did settle after that fever but the night nurse said he hardly slept. Every time she came in he was awake - shame. I slept as I took a sleeping tablet to try and get some rest. I probably snored so much and kept poor Jason awake.
So far today is a thumbs down day. He's very nauseous, gagging, uncomfortable, had a fever. When he's like this there's no chance of any oral feeds but the dietitian has upped his TPN rate as she could see he's struggling today. Obviously if he is ok later I can try give him some pediasure or the new milk but there's nothing worse than force feeding your child when they want to vomit. The problem is if he feels better, I try oral feeds then he's sick again.
Jason is on covid day 8 and I tested positive on Sunday but my symptoms started on Wednesday last week. My symptoms are mild at least.
Today things are getting to me. It's very frustrating emotionally. Hospitals are frustrating at the best of times but throw in covid for both of us and a covid ward. I can't even leave the room to have a breather or fetch anything from downstairs, go to pharmacy, go buy a samoosa or fetch my jacket from the car. Whatever I need doing I have to make a plan. Bruce can't even help as he and Nicole are isolating until Friday. But we have been really blessed by so many people offering to help us. My good friend has been helping with fetching and carrying our washing back and forth. So many have dropped off food for me, snacks and drinks for me or nappies, wet wipes and a toy for Jason. I have just got a delivery of freshly squeezed juices to give me a booste - how thoughtful are people! I still have my taste and smell and thought oh dear but the green spinach and pineapple was nice!
As our physio said to me yesterday we are very lucky we got covid now when it's quiet. There are just 3 of us here but when the other waves hit it was busy and ICU was full. So I must count my blessings and be grateful that I was able to be with Jason from the beginning.
I just hope and pray Jason turns the corner soon so we can go home. 8 days in high care and 7 days in paeds prior is exhausting. I miss my husband, I miss my baby girl, I miss my bed, my food etc.
Yesterday was one of the worst we've had. Jason was just nauseous, gagging and uncomfortable from the morning. He was so nauseous I was not able to even try feed him orally.
We went for a chest and abdomen xray so the doctors can see what was happening in there. The chest is fine but the abdomen is showing multiple gas-filled dilated large bowel loops. Lots of gas which must be awful.
Last night he was clearly in pain. His stomach was bloated, his pupils dilated, gagging, burping, nauseous. His blood pressure was very high which we think is due to pain. The paed was with him for about an hour and a half last night so he could see what was going on.
He eventually settled in the evening, had a watery diarrhea and his drip infiltrated.
This morning he is a little better than last night.
Day 9...
He was a lot calmer today. I can only say it's because the stomach pain was better today. He was still a bit bloated but nothing like yesterday.
The vein infiltrated last night so we were left without fluids and feeds. The doctors decided it was time to put a CVP line which is a central Venus line inserted into a large vein in the body. They placed Jason's in the shoulder. He was sedated with dormicum to relax him and also a small amount of general anesthetic. The procedure was about 40 minutes and it was done in our room. I was given the option to stay or leave. I chose to stay to watch the procedure. At least we won't have veins infiltrating every 2 days and don't have to poke him for bloods all the time. Jason fell asleep and woke up nicely and the procedure went well.
We did try 2 oral feeds today with a new special elemental formula that is specific for conditions where there is severe impairment of the gastrointestinal tract. The body does not have to work too hard to break it down in the gut. I would love to know how much one costs 😳. I know these special formulas are pricey. He tolerated it ok considering his tummy is still bloated. He did gag a little and did throw up a little as well but I think it was a choke more than anything.
It will be interesting to see how he is tomorrow and how the oral feeds go. At least we have the comfort that he is on the TPN feeds and is getting nutrition in the vein.