Unfortunately after a great start to the Christmas holidays, things took a severe downturn.
Tomas woke up on the 30th with pains in his stomach that he said were a 9 out of 10 (this is big coming from a kid that rarely acknowledges pain) and throwing up. He wasn't able to move without serious pain, so Kristine called the emergency medical number.
The response was that it was probably just stomach flu (gastro) and to wait it out and see how it goes. After Tomas threw up again a few seconds later, we decided to take him to the hospital.
Kris raced Tomas in and I waited at home with Alana and Cameron. I expected a quick visit: "Yep it's stomach flu, here's some meds off you go", so I was surprised when I got a message from Kris asking me to come in about 4 hours later.
When I arrived, Tomas was being rushed into a CT scan. His heart rate was tachycardic (super fast), around 150-180 beats per minute, his blood pressure was low and he was in a lot of pain.
The scan confirmed massive swelling around his pancreas and he was rushed to IVA (intensivvårdsavdelning or the Swedish equivalent of Intensive Care Unit (ICU). He was given a epidural for the pain, a central-line IV directly into his neck, two IV lines in his arms, catheter and NG (nasal-gastric tube). Through an additional arterial line in his arm they were able to directly monitor his blood pressure, blood oxygen and pulse rate
The confirmed diagnosis was acute pancreatitis. Pancreatitis is a severe swelling of the pancreas, the organ responsible for creating digestive enzymes and insulin/glucagon to control blood sugar levels. It can be more common in older patients, but is very rare in teenagers (the median age is about 61-62 years old).
The main causes of pancreatitis can be alcohol consumption, gallstones, high fat or calcium in the blood, some medications, some genetic/congenital defects or autoimmune diseases. Over the next few days Tomas underwent more scans and hourly bloodtests, which ruled out all of these causes. The doctors were unable to pinpoint a cause, but one of the doctors did mention that Sweden has seen an increase in teenage pancreatitis cases recently, so it may be environmental or even viral.
Pancreatitis is a severe condition and the distress signals sent from the pancreas can cause other organs to leak fluid and go into 'distress' or fail, so it was important to continually monitor Tomas. There is no 'cure' for pancreatitis other than to let the body recover and maintain a balance. Tomas was given over 10L of IV fluids to help flush his body and the doctors then kept a close eye on him, balancing out what his body needed - low on salts - provide saline IV, high heart rate - provide heart control meds etc. It was really just a case of helping his body as much as possible.
Tomas spent the first 5 days in IVA. We chased around chasing up medical histories and Kristine stayed with Tomas in hospital while I visited during the day and spent the evenings with Alana and Cameron. While Tomas recovered, we kept the family in Australia updated with regular updates - this may be the best way to show the progress here also:
30/12/23 - Day 1:
Just saw doc - is pancreatitis. They want catheter and maybe a nasal tube but it’s rest, fluids and monitoring at the moment
At this point we were still discussing whether he would need to stay in overnight. He'd been given quite a bit of morphine but was still in pain and throwing up regularly. He ended up holding onto a sick bag for about a week - calling it his "friend".
He ended up with the epidural at 11pm that night, which at least helped reduce the pain. The central line was added around midnight also.
31/12/23 - Day 2:
Part 1:
They are calling Lund to discuss other possible causes. The doctor said they will keep the monitoring up.
Said they will chase a few other possible causes but they may never find one. He said they are just flushing, monitoring and pain relief for now. He said there are still risks it could go another way but he’s in the best place and they are doing all the right treatments, it could just take a while until he settles.
Part 2:
They have ruled out gallstones, cancer and all the big causes. That’s good news, but also a bit frustrating as they don’t know the cause and there is no specific treatment.
They are still filling him with fluids and monitoring.
This usually sorts itself out in time but can take week(s). Until then there is a risk that the pancreas can mess up other organs so he is not out of the woods until it settles.
At least one more night in ICU and then if he settles a bit more he will prob have a week in the main ward while they monitor and pump him full of liquids.
They don’t have any idea why it happened, narrowing to three possibilities:
1) it just did, no reason
2) genetic issue
3) digestive tract issue.
Either way they will do more assessments when he recovers as it won’t help the recovery now.
At this point we were just focusing on getting Tomas well again and still hoping there would be an obvious cause - an obvious cause meant that at least we would know what was happening.
The doctors and nurses were really good with two exceptions - first they were really struggling to find an IV food for Tomas that wasn't dairy based (due to his dairy protein allergy) and secondly there was one of the night shifts (a temporary holiday filler team) that we nicknamed the Team Grumpy. Tomas had some dry skin on his lips and picked at it. Kris noticed that he had blood coming from his mouth and called on the normal call line (not the emergency one) and they came and looked at it and then said "That's not really a strong reason to call us in" (See Jan 5th details). Luckily we only had them for two nights and Tomas received great care for the rest of the time. When he was in IVA we were provided a small room that we could sleep in (Kris stayed for these days and I visited during the day) and in the following wards we were given a bed in his room so we could stay with him at all times.
I traded places with Kris so she could go home and have a shower, get a change of clothes and see the kids. By 4pm the extreme tachycardia warnings has finally cleared from his vitals but his heart rate was still 130. His blood pressure settled back into the healthy range also, which was a relief.
That evening Tomas woke up for about half an hour, asked for his phone and made sure to do his Duolingo Swedish lesson - the green owl would be proud.
I headed home around 5pm and caught up with a friend for some distracting board games and to see the fireworks at Vasträ Hamnen for New Years Eve. We didn't really feel like celebrating, but it was a good distraction. As always the fireworks were crazy and we almost felt like we had to dodge them going off as we walked to the habour. In one case a set of fireworks hit the balcony of a building and several were set off in the middle of the main street.
For the next few days the important stats were his vitals: blood pressure, heart rate and blood oxygen as well as urine output. Since he had taken so much fluid in to keep hydrated we needed an equal amount out and it was slow going as his body reacted to the infection. Kristine and I had quite a few back and forth messages about quantity output. Before bed time a cardiologist checked in and gave Tom a med to slow his heart rate down a little to try to get it back to a normal level as it was still 130-150 beats per minute.
By midnight his heart rate was back to 117 - still fast, but not as bad as 150.
1/1/24 - Day3:
The first day of the New Year started with Tomas' blood oxygen levels going down, so in additional to all of the other pipes and tubes, he had a high-flow oxygen nasal pipe added. The pressure in his belly dropped from a 19 to a 2, which was a really good sign that the fluids were starting to clear out and the swelling was going down, as well as being a big relief for Tom.
Part 1:
Inflammation markers are down, small infection markers, but they showed up with an all areas invite- they are there, but could be from a low grade infection, dealing with the germs in the hospital or the inflammation may have invited them.
Looking positive to a transfer to a general ward tomorrow.
Tomorrow they will also probably reduce the epidural meds to 4mg to help him stay awake for longer.
Part 2:
Tom’s doing well- he had a very sleepy day today. His abdominal pressure measured at 2 during the day, it was at 11 last night so it is a huge improvement.
His pain levels are down, and his heart rate is slowly decreasing. They are using medication to help bring it down, so we will see what tomorrow brings with that.
The aim for tomorrow is to move out of the ICU, down to an intermediary ward- halfway between ICU and regular wards, I suppose we would call it the high dependency ward. To make the move, he needs to be stable overnight and show more improvement tomorrow.
2/1/24 - Day 4:
This day we had a bit of a scare. Kristine received a call from a doctor saying that Tomas would need further spleen surgery as he still had a bleed on the spleen. Kris was confused as Tomas hadn't had surgery and we didn't know anything about a spleen problem. It turned out the doctor had the papers for the wrong Tomas. He was very apologetic and had to complete a stack of paperwork over the breach.
We were able to stop the blood pressure meds as Tomas' BP was holding steady - great news as it was one less drug for him. He managed to sit up a little and drink some Powerade which was good, but he was still very sleepy. The meds kept the pain at bay, but also made him sleep a lot more.
Blood pressure is holding steady at the right rates, so today Tom came off the blood pressure medication.
Heart rate is getting closer to 100 beats per minute, no longer taky, and has needed no medication to keep it stable this afternoon.
Tom managed to sit up with an awesome support pillow for two sessions today (1 hour, and 30 mins), and managed to stand for about 30 seconds holding onto me for support.
Still needing the epidural for pain relief, but has been pressing the top up button less frequently.
Lab results from this morning (the one with the big tests in it) showed the inflammation markers are continuing to drop, and the infection marker which will show up with inflammation is holding steady. The infection marker is not at a level that is causing concern.
The low grade fever seems to have subsided, with Tom just feeling hot and sweating a lot, but his body temp is remaining stable.
The hospital managed to Uber Eats some nutrition in from Lund that does not contain any dairy, and is running that through the NG tube. His stomach is taking it well, and is processing it!
The bloods taken at 10pm showed a dip in his sulphide, magnesium and potassium, so they are being run overnight.
All told, progress is being made in the right direction, and they are still waiting on a room in high dependency for Tom, so he will stay in the ICU until a bed comes up.
He is getting irritated at the tapes, hoses and wires, so it is a great improvement!
3/1/24 - Day 5:
The plan was to try to move Tomas out of IVA into the Acute Vårdavdelning (Acute Care Department).
Morning report- overnight was good, but o2 dropped a bit, so is on a mask now rather than pegs (high flow was taken off yesterday afternoon).
He is very sleepy still, but is sitting up and has asked to have a shower, so they are getting him ready to be put in a shower chair now, and they will shower him and wash his hair.
On another note, it began to snow. We ended up with fairly heavy snow for the rest of Tomas' stay.
Ready for the move to AVA, Tomas had the drip lines removed from his arm, giving him a bit more freedom. He kept the central-line, NG tube, catheter and Oxygen connections.
Random Aside:
While I was home, I also chased up an annoyance that we had. We had subscribed to a TV service for extra sports channels and paid the first month. A short time later we had received a collection notice from a collection company for an overdue payment, complete with fees. We'd never seen a bill, but I paid it anyway. After getting back from visiting Tom, I got another collection notice for this month. I called the TV company and it turns out that they had used the address from when we were here in 2016 and had been sending all our bills there, despite us setting up an address when we subscribed and having updated our address in the Swedish systems. The address was fixed up, but we were still liable for the overdue fees apparently as it was our issue.
Daily update:
Tom graduated to the high dependency ward today!
He managed to have a shower (with help) and was awake for about 6 hours straight. He had his arterial line and one other cannula removed. He is starting to expel a lot of the 10L of fluid that was pumped into him, he only has about 4L left to empty out.
All his electrolyte levels look good, and the inflammation markers are still dropping.
The continual dose of pain relief has been lowered, meaning that Tom is having more waves of pain, but they seem to be lessening as the day has gone on.
In all, he is doing really well!
4/1/24 - Day 6:
This was not a good day for Tom. A big difference was moving from IVA to AVA. The AVA was setup as a transition, most people only spent a few hours there, however Tom would spend about 5 days. Most of the staff were great (except Team Grumpy), but there were issues in finding food he would/could eat. Tomas has sensory issues with soup, but that was all they had to offer him and they couldn't find dairy free IV nutrients. He was also sent for an MRI and made to fast, which included taking him off the pain meds. The MRI was delayed and when they got him there, there were further delays while they called in someone who could disconnect his IV lines. The test itself took quite a while and then there were delays in getting him back to the room and reconnecting his pain meds. Tom was getting sore, Kris was getting frustrated and it was not a good time all around. Fortunately there were a peer support nurse, Tove, who had helped us when we first came in. She stopped by to see how things were going and Kris unloaded all of her concerns. Tove promised to help sort it out and things got better from here on. As I mentioned, the big issue is that AVA was only supposed to be a temporary stop so they weren't really set up for long term stays, and the staff was filler staff while the main crew were on holidays.
Another frustration was that his test was at 3pm, but we got no results. Kris asked when the nurses came around at 9pm as was told that we wouldn't get results as the MRI team doesn't work at night. It wasn't night when they did the test, but this led to more delays. As a result of Tove chasing up, NG feed was restarted for Tom and an anesthesiologist was brought down to help get the pain back under control.
Daily update:
Hard day today.
Tom was fasting from midnight due to needing an MRI today. There was no scheduled time for it to start with, and it ended up being scheduled for 2pm, and he had it done at 3. So there are no results from it yet.
Moving around has been a super sore process for him today, with spiking heart rates when moving, and struggling to maintain his O2 without oxygen support.
This evening we were told he could start to eat again- but it was a broth or strawberry jam- both things Tom won’t eat. So we are struggling with that a little bit.
On the bright side, his intestines are working!
Tonight, after the anesthesiologist had visited for the fourth time, the epidural pain medication was finally caught up (from being stopped for nearly 3.5 hours with the MRI), and he has been sleeping well since about 10pm.
Tomorrow we will try again with food, and hopefully something takes his fancy!
Tom woke up a few times in pain. It turned out that epidural wasn't put in as deep as it could be, but they were able to get the anesthesiologist to tweak the values and fix the pain so Tom could sleep.
Kristine also wanted to make clear that she rated the Chicken Caesar Roll from the hospital Presbyran (news agency) a clear 0/10. They also had a buffet salad bar, which I was definitely not going to eat from - who has an open buffet salad bar in a hospital foyer?!
5/1/24 - Day 7:
Tom woke up today vomiting, which is never a good way to start the day (and no he hadn't had any of the chicken caesar roll.) He did start to feel a bit better after this, which was good. His heart rate spiked while he was vomiting, but settled to 86 bpm, which is a big improvement.
More snow fell and the outside temp dropped to -10 degrees. I was due to return to work on the 8th, but messaged through that I would need an extra week off to make sure Tomas recovered well. Work were very supportive, which helped a lot.
There were two small tests done today, firstly they lowered his oxygen inflow to check if he could keep his blood oxygen levels up, and secondly they clamped his NG tube. The tube had been dual purpose - firstly it had been used to feed him but it’s main purpose was to help drain bile and pancreatic fluid from his stomach. After a few hours (it ended up being most of the day) they would unclamp the tube. If there was no drainage of bile/pancreatic fluid then he would be able to have the NG tube removed. Something Tom was very excited about.
The MRI results came back confirming no gallstones, or digestive issues. They also found no signs of autoimmune disease. So the test was good at eliminating possible causes, but didn't help get any specific answers.
 |
| His vitals had started to settle also |
Tonight was the night that Kris had the run in with Team Grumpy:
Gah, team grumpy are back on tonight 🙁
I’ve asked for the IV fluids bag we were told about 4 hours ago, after I had to call them in because Tom wiped his mouth and came away with blood.
I hit the call button then helped him to stay calm and to start removing the blood. Turns out that when he peeled the dead skin off his lips, he took live tissue with it- inside both top and bottom lip.
(This was even more of a concern as Tom was on blood thinners at the time)
By the time team grumpy got in, I’d stopped the bleeding and worked out where it was coming from. “It’s not really a strong reason to call us”
Sure the actual reason wasn’t that big, but neither is “I can’t reach my water cup”.
It’s not like I hit the emergency square, it was the call button!
The NG tube ended up staying in overnight as we weren't keen on Team Grumpy doing any more than they had to.
Daily update:
Today was a much better day than yesterday!
MRI results came in, nothing conclusive, so the big issues have all been ruled out as underlying causes. This is great, because we know that it isn’t gall stones or anything like that, but mildly frustrating because we still have no underlying cause. It may be the case that we never really know what caused it in the first place.
Tom had a rough night with trying to control the pain, the drs and his body played catch up until about 3 this morning, when a tweak in medication and an increase in dosage finally cooperated for relief.
Tom’s heart rate has continued to fall (second day with no heart medication), and he is getting better at maintaining his oxygen levels for increasingly longer periods of time.
The NG tube has been cleared to be removed, but we have to wait until the supervising surgeon is free- it should come out tomorrow, the poor guy was slammed with calls to the OR all day.
Tom has been given the go ahead to drink as much as he wants, so sports drinks are his chosen poison, and he has managed to drink about 150ml today, most through Mum being mean and making him take sips, but later this evening he was voluntarily drinking small amounts.
We still have not had much luck with starting foods, he managed a tiny (half a teaspoon) bit of jelly, but we think the NG tube is restricting his want to eat.
Most of the body swelling has gone down, leaving some impressive bruising, so that is being monitored closely.
As much as Tom is being encouraged to sit up and start to move around, today was another day of sleep- most likely to do with the zero sleep overnight.
Fingers crossed for more improvements tomorrow (and less tubes!)
6/1/24 - Day 8:
The NG tube was removed today and Tomas was happy and able to drink. He also requested watermelon and jelly to eat. Having the NG tube removed was a massive improvement and Tom found a lot more energy. I wrote the daily report today as Kris fell asleep:
Daily Report from me today, as I think Kristine is asleep: Huge improvement from Tom today - he had his NG and oxygen removed and that freed up his face.
He managed to stay awake for most of the day (a huge improvement over his previous limit of about an hour). He didnt need to use his pain button (but he is still getting a regular doses).
He started to regain a lot of his sense of humour and was able to joke around and it was really great to see him laughing again.
Still some time to go, but a huge improvement today.
7/1/24 - Day 9:
Tomas had a visit from his friend Leo today which perked him up a bit, and Alana and Cameron stopped in for their second visit. I then took them out to Svagatorp to do some shopping and let Tom rest.
Daily update:
Another good day today! Tom has eaten watermelon, cherry tomatoes, ice cream, and a third of a chicken and mayo roll. He has also drunk about 750ml of fluids.
He had Leo come in to visit today, which really lifted his mood.
With any luck tomorrow a few more of the monitoring cords and cables will be removed, and they are looking at starting to reduce the dosage of pain meds into the epidural.
Being a Sunday, we have had no other info coming from the surgeons or doctors, so maybe more info tomorrow.
8/1/24 - Day 10:
Today Tom was moved to the children's ward - which gave the benefits of his own bathroom as well as a TV. Oh and a clock. Within 10seconds of arriving he had me remove the batteries to stop it ticking. He already complained about the beep machines, or yap machines - the various pumps that continually woke us up with pressure errors or refill requests, so the clock was too much.
Daily update:
Tom is out of high dependency! He is now in the children’s ward 🙂
So the epidural was removed this morning, as was the rest of the monitoring equipment. It just leaves the central line and the catheter to go. With luck the catheter will be removed tomorrow.
From here, Tom needs to be able to eat, drink and void without issues and be up and moving around more to be able to come home.
Overall, a huge improvement again today, but the activity involved in moving wards and then having a shower has left him exhausted.
9/1/24 - Day 11:
Today added another complexity. Kristine had booked a conference in London mid last year and had flights and accommodation booked. She was planning to fly out early on the 10th, stay overnight, attend the conference on the 11th and then fly back home that night. She had debated cancelling to stay with Tom, but as he was really starting to improve, we made the decision that she should go and I would spend a few nights with Tom. These were the easy days as Tom had started to get some energy back and we played Nintendo and watched YouTube videos. He continued to improve and we were getting ready for him to head home soon. The biggest issue was his refusal to eat or drink the hospital food. Kristine made some lasagna but he just didnt seem to want to eat. This wasn't really surprising, but it was a necessary step for him to be able to go home.
Daily report:
Not much to share today, as Tom had a pretty quiet day resting.
He did manage to drink just over a litre of water today, and managed to eat some corn chips with salsa for lunch. He also had some home made lasagna for dinner.
There was talk of getting a physio to come and see him to start rehab for movement as he has been laying down for 11 days now.
We should hopefully see slow but steady improvements from here.
10/1/24 - Day 12:
Kristine's flights went well and she landed fine in sunny London. Tom and I played video games and I managed to get him to eat and drink a little. The big news was the removal of the catheter, which Tom was super happy about.
11/1/24 - Day 13:
Today we had a visit from Tom's friend Leo as well as Cam and Alana.
Update on Tom:
The last few nights, Tomas has been in the children’s ward with a TV, Nintendo and YouTube. The catheter was removed yesterday, leaving only the central line in his neck.
He’s continued to improve well, drinking and starting to eat, thanks to mums lasagna.
He is slated to be heading home tomorrow, pending a final blood test.
Still no answer as to what caused it, but they have slated a few follow up visits for tests.
It’s been a long run, but will be good to have him home again.
12/1/24 - Day 14:
Today was a friday and one day short of a fortnight since Tomas had gone in to emergency with a sore stomach. His central line was removed in the morning and we were free to go home around lunch time.
It was a big relief to have him home, and he immediately jumped onto PlayStation to play Fortnite with his friends.
13/1/24 - Day 15:
It turned out our relief was short-lived. Tomas was very flat today and ended up opening a window to put his head outside in the snow to cool down. We keep an eye on him until the afternoon when he suddenly drew a 40 degree C temperature and we raced him back to emergency.
By the time we arrived he had shivers and shallow rapid breathing. He was immediately raced into a room and give IV paracetamol for the fever and sent for an x-ray. His heart rate was back to 150bpm and he was very pale and hot. At 3am Kristine went home to sleep and at 5am we finally managed to get the x-ray done and relocated to a different children's ward.
Here's the update I sent to Kris at 6am on the 14th just before I tried to get some sleep:
Looks like it’s a minor infection on his lung. They aren’t super concerned as he still has really good oxygen levels. They are treating it with antibiotics and expect it to clear up without issue.
There is also a little bit of shadowing around the pancreas, they think it might be a bit of fluid but are going to get the surgeons to check it to be sure.
The doctors were pretty positive about it and happy with his vitals.
I’m going to try to catch a bit of sleep and we hopefully get an update from the docs/surgeons tomorrow. He is fasting now as a precaution.
14/1/24 - Day 16:
Today was a day of blood tests and checks. Tomas was very lethargic and had shivers and sweats. I had to message work that I would be off for another week as it seemed unlikely I would be in tomorrow.
Tom was given lots of antibiotics (mostly IV as he wasn't able to keep any pills down), and had a drip placed in the back of his hand.
Daily update: Just when you thought Tom was better and back at home!
After getting home on Friday, Tom had colour and energy, it was great! On Saturday he woke up pale and very lethargic. We put it down to needing to have a slow day after the excitement and energy expenditure of coming home. We monitored him across the day (made phone calls trying to find out what we should be watching for in case we needed to go back and get something checked). In the afternoon a bit of a fever had started to creep in, and Tom had vomited once. We made a checklist ourselves (medics on the phone were not much help) of what conditions would need to be met before we took him back in.
By 9pm, his fever hit 39.5, so back to hospital we tracked.
With all the testing they have now done, we know there is inflammation around his pancreas again, and he has a mild case of pneumonia. IV antibiotics were started somewhere between 11pm and 2 am to combat that.
So now we wait again. The antibiotics need 24 hours to show any improvement and everything else is being watched carefully. It looks like it’s at least another few days in hospital for the poor chicken.
It turned out that fluid in his lungs (likely from the pancreatitis causing organs to leak, in combination with lying down and not moving for two weeks and the oxygen tube had formed pneumonia in his lower left lung. They weren't super concerned initially as his blood oxygen levels were fine (97-100%) but his temperature kept crawling upwards, being knocked down by paracetamol and then creeping back up again.
15/1/24 - Day 17:
The fever broke over night and Tomas returned to 37.9 degrees temperature, but woke up soaked in sweat so bad that we had to change his clothes and sheets. There was some talk about moving him to Lund Hospital or back to the children's ward we had previously left, but instead we stayed in Children's Ward 2 , which is the infectious diseases ward, where we were in an airlocked room.
We had another full chest x-ray to check the pneumonia in his lungs. Tom was still pretty weak and didn't enjoy having to stand for the x-ray, but did well, and the scan confirmed the infection was limited to his lower left lung.
One fun thing that we found to keep ourselves occupied was the room clock. Unlike the one in Ward 1, this one didn't tick constantly so it was allowed to keep its battery. Instead it had an odd issue where the second hand didn't move until it ticked over a minute and the minute hand moved. At this point the second hand moved somewhere between 3-8 segments and stopped again until the next minute. To give an idea how exciting the stay was, Tomas and I watched the clock to try to find a time when the second hand stopped directly in line with the minute hand:
Unfortunately the doctors also found that Tomas had sepsis - bacteria in his blood. This can be very serious as it can spread the infection to other organs and lead to septic shock which can cause organ failure. Fortunately the antibiotic was keeping the infection suppressed, so it was present but not doing much other than making him feel ill.
Initially it was suspected that the sepsis had spread from the pneumonia, so the antibiotic was planned to be changed from the broad spectrum antibiotic to a more specific one. That evening we were told that the pneumonia antibiotic was not controlling the blood infection so he would have both the broad and specific antibiotics.
Daily update:
A day of mixed news.
It looks like the issues with Tom’s pancreas are settling, with the specialists in Lund saying that they don’t need to be as involved as they have been.
Scans have shown that the pneumonia is contained to the lower portion of Tom’s left lung, and he is on antibiotics to target that.
Unfortunately, there has been a bacteria detected in his blood, that does not respond to the same antibiotic as the pneumonia, so Tom is currently on two different lots of antibiotics.
The bacteria in the blood has been picked up quickly- he was on the broad spectrum antibiotic that they are using to treat it before they found it.
Tom has perked up a bit today, with the request for chicken nuggets for dinner, and when they arrived, he promptly demolished all 9 of them, with complaints that once again, Maccas ripped him off by not putting the sauce in the bag.
16/1/24 - Day 18:
Today Tomas was switched back to the specific antibiotic as it was found to be controlling the blood infection, just not at the 'extremely effective' level. The issue here was that the infection was being controlled but it wasn't the same bacteria as the pneumonia, so they weren't sure where it was coming from.
We had a bit of a rough start to the morning as the IV in Tomas' hand started leaking and needed to be removed. The nurses made multiple attempts to find a vein in his arms, hands and even feet, but were unable to get one. This delayed the morning antibiotics and left Tomas feeling a bit like a pin-cushion. Eventually an anesthesiologist was called in and with the use of an ultrasound managed to get a good connection to a vein in his arm. In addition to being used for the IV paracetamol (for fever), IV antibiotics and IV fluid, the IV was also used to draw blood daily for testing for bacteria.
There was a big concern that the bacteria could have settled in Tomas' heart - this is somewhat common with blood infections and can lead to big complications. Since they couldn't find the source of the infection, and Tomas had had a heart murmur (apparently fairly common with high fever) when he first came in, the doctors wanted an ultrasound scan of his heart. This gave an all-clear, with no bacteria found on his heart valves, which was a big relief.
I swapped with Kristine in the afternoon, here's a few of the updates:
They have decided to go with a very broad antibiotic now to get everything under control. She seemed confident it was affecting the blood one also. Doctors should come past soonish.
Tom is feeling a bit nauseous so they are gonna give him the anti-nausea meds
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Bloods taken and testing. If it’s negative they want to keep him for 2 more days until it’s clear for 3 straight. Will update as to how it’s going.
Was a bit of a miscommunication yesterday - the pneumonia antibiotic is affecting the blood infection - they have a scale of effectiveness - it wasn’t an extreme effectiveness but it is high so that’s fine for treating both - so he is getting the one antibiotic to address both at the moment- multiple doctors have been consulted
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Stomach doctor and surgeons have looked at his pancreas X-ray again and are happy that it looks like it’s healing well
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Doctor came past -
For lungs there is still a raised infection level BUT his white blood cell level is back to normal, which is awesome as it means that his body feels the infection is under control.
The blood bacteria sample has not grown anything yet which is great - it’s not designated clear until another 24hrs with no growth (still early days) but it’s a positive sign
The blood tests for the bacteria were interesting. They were taken every day in a flask that looked like a cocktail mixer. The doctors would then monitor them for bacteria growth. Depending on the amount of bacteria present the speed of the growth would vary. In the early days we were getting a result within a couple of hours, but now it was taking longer. They couldn't give a certain all-clear until there had been no growth for three days. So it was a wait and see and one of the few times we were hoping not to get updates.
Despite the good news, Tomas spiked back to 39.5 degrees C fever again and had to get back on paracetamol. The nurses believed it was due to the change in antibiotic.
Meanwhile, Kristine took Alana out to the Gekås shopping centre, which was surprisingly empty. They then returned home to find that the pump motor in the dishwasher had died.
17/1/24 - Day 19:
Tom slept well and did not have any fever overnight. The snow really picked up, whiting out most of the outside and falling quite deep. The canals near our house froze over.
I sent a quick update to Kris at 10am:
Fever is gone, CRP infection values are down, but they still got some bacteria growth from the last blood samples so they are doing some tests and checks.
He’s perked up a lot today - eaten some Oreos and drink some water - so good improvement
CRP is the C-Reactive Protein levels that are used to check for infections. The liver releases CRP into the blood in response to inflammation. Normal levels of CRP is 0.9mg/dl (milligrams per deciliter). 1 -10 mg/dl is considered a moderate elevation, and greater than 10 mg/dl is a marked elevation. Tomas spent most of the time about 50 mg/dl meaning a severe elevation, which indicated an acute bacterial infection.
Kristine made him a huge pot of lasagna and then braved the snow to bring it in:
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| Back yard |
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| Front yard - do you see the well camouflaged bike? |
We had a physiotherapist visit, who suggested some breathing exercises for Tomas and encouraged him to make sure he was up and walking. So, we set a goal that every time the clock hit quarter to the hour he would walk for a few minutes. This was important as it helped clear his lungs.
He managed a shower, but this left him exhausted and he slept for most of the afternoon.
The nurses took a temperature reading and it came out low, 35.6, which could be an indication that his fever was now going low temperature, but a second (in-ear this time rather than underarm) came back normal.
Since his numbers were starting to come back into the normal range, it was now important to figure out where the infection was coming from. The two main suspects were the spinal fluid (from the epidural) or the heart (from the central line), both of which would be serious. An MRI was booked to check his spine and another heart scan was planned.
Todays update:
As with the last few days, a mix of good news and bad news. Good news is that the pancreatitis seems to be under control still and healing well and the pneumonia is under control - infection markers are down from 75 to 50, fever is gone and he is eating and drinking.
Bad news is that we still have some infection present in the blood. It’s suppressed at the moment so under control, but they don’t know where it is coming from so they haven’t been able to kill if off. He’s scheduled for an MRI tomorrow and maybe another heart scan to check to see if they can find the source of the infection. There’s also the chicken/egg question of if the infection caused the pancreatitis or is a symptom of it, or just a hospital stay side effect.
They aren’t super worried at the moment as the bacteria is suppressed by the current antibiotic, but they can’t fully cure it until they work out the source
His CRP was down to 50mg/dl now, which is the low end of severe.
18/1/24 - Day 20:
For the first time in ages, Tomas woke and wanted something for breakfast. Kris gave him a cinnamon roll and a few minutes later the doctor arrived and said they wanted to send him to Lund for a heart check and when had he last eaten. Unfortunately the check needed him to fast, so it was postponed until tomorrow. The ultrasound checks they had been doing for his heart had showed all clear, but some of the view was obscured by his lungs so they wanted to to a TEE (transesophageal echocardiogram) where the sonar probe is fed down the throat to monitor the heart from behind the lungs.
But, unfortunately that would now be delayed until tomorrow. The MRI was still on for today though. This time, it was done quickly and all finished by 10:30am
Strangely, when I arrived to swap with Kris at midday the room was still empty. It turns out the the transport back to the room had forgotten about them and they were still stuck down at the MRI and had been for 2 hours. The MRI nurses noticed they were still there and made some calls so they were eventually brought back up to the room.
Alana and Cameron came in for a visit, with Alana saying goodbye to Tom and me as she would be flying home tomorrow. We'd hoped that we all could see her off at the airport, but I ended up staying overnight with Tomas and Kristine went home with her to get her to her early flight tomorrow.
The bloods were still coming back negative for bacteria, but it hadn't been long enough to sign them off as clear. The MRI came back clearing his spine for infection and the heart scan was planned for tomorrow.
Kris ended up with a nasty migraine and went home to sleep
Daily update:
Tom had his MRI today and got all clear for infection sites on his spine and back. Tomorrow he goes to Lund to get a heart ultrasound. From there we have three paths:
1) if his blood cultures are negative and his heart is clear of infection then he needs to stay clear for 3 days and will be released on the weekend
2) if his heart is clear but the blood still has bacteria then they believe it should clear up in a week and he should be home midweek
3) if they find any bacteria around his heart he will need a central line again and IV antibiotics for several weeks to a month.
Fingers are crossed for option 1 or even 2. Two previous ultrasounds of his heart were clear, but this will be an internal ultrasound which is more effective. His blood culture from today (10hrs ago) is still negative, but can take a few days to be deemed fully clear).
He has a lot more energy and colour back in the cheeks, as well as being able to play Nintendo.
Fingers crossed for tomorrow, we should have a few more answers and a way forward in the next 24hrs but it looks positive so far.
Once he is clear of the infections he will have done checkups regular to keep track of the pancreas and make sure it heals well.
Tom was given Movicol, a laxative, to help clear his system, but he wasn't able to drink it as the flavour made him spit it back up every time. It had been an ongoing problem with it, he hadn't been able to drink it the entire visit. Late last night he went to toilet and came back proudly saying "You can pour that Movicol down the drain now."
He played a little bit of Fortnite online with Cameron on the Nintendo and we got to sleep around 1am.
19/1/24 - Day 21:
Alana headed back to Australia this morning. It was sad to see her go, but much easier this time than when we left as we know she is doing well in Australia. Hopefully we can get her back over again soon when Tom is better.
At 10:30 we were told that Lund was ready for us. Then we were asked if we had transport organised. I was a little confused as we were still patients and hadn't been released. Kris was napping after getting back after dropping Alana off early so I asked them to organise something. I didn't expect an ambulance, but thought that we'd have a transport van or similar.
Nope. A taxi was called for us and Tom had to get dressed and walk to the front of the hospital where we needed to wait in the snow for the taxi. Fortunately the ride was uneventful and we got dropped out at the entrance to Lund Hospital.
Our next problem started there. I was given no directions on where exactly to go, so we went to reception. There was a sign that read:
We wandered aimlessly for a few minutes before a nurse noticed us looking lost and directed us to the children's heart ward. They were waiting for us there and Tomas got a room, where he needed to wait an hour until his first check. The doctor wanted to do another external ultrasound first to help speed up the process when they did the TEE. I got to watch the process and asked what they were looking for.
Apparently when there is bacteria in the heart it congregates on the heart valves. So they were checking that the valves looked smooth and didn't have any growths on them and that they were moving as expected. The external ultrasound looked good, but the doctor reminded me that it was only 50% as good as the TEE.
An hour later and we were ready for the TEE. Kris was on her way from Malmö with the car and I got to follow Tomas into the operating theatre where he would be sedated for the examination. We were both quite nervous - bacteria on the heart can be pretty major and the other tests had ruled out most of the other possible causes. The doctors told me that the scan would take about 15 minutes and if all was good he would be out and in recovery by them. If there was anything detected, they would install a new central line ready for him to receive more antibiotics and this would take an additional 45 minutes. So my panicked dad brain noted the following - around 15 minutes all is good, around 45minutes to an hour, things were bad.
I got set up in my lovely scrubs and got to sit with Tom while they sedated him. They told him to think good thoughts and he fell asleep saying "playing rugby, playing rugby, play...."
Once he was asleep I was ushered back into the ward to wait. I started a timer on my phone and paced. Kris arrived with lunch but I was too nervous to eat.
When my timer ticked over to 30 minutes, Kris and I started to have to discuss plans for the next few months in hospital and a very sick kid.
We were able to leave about 6pm and Tomas requested Max Burger on the way home to celebrate. Everyone got their orders, except for me. I ordered a standard chicken burger and got someone's special order - a chicken burger with grilled halloumi, pickles, 4 rashers of bacon and avocado. It was... interesting..
Once Tomas was settled back in, I headed home and Kris stayed the night.
The update from Kris that evening was:
Blood cultures are still clear 🙂 in the clear for his O2, which is really good.
CRP levels are still dropping.
Home by Sunday hopefully, with an adult length antibiotic schedule. Which means that he can go home, but keep the iv in and come back for antibiotics each day.
The adult length antibiotic schedule meant 10 days of IV antibiotics.
Kris also posted the following to Facebook:
21/1/24 - Day 22:
At 11am, Tom had a visit from the doctor. His bloods were still clear so he would be able to head home by 2pm after his antibiotics.
Still no growth on the culture 🙂
Need to watch for pain, fever, him not being himself. If any of those, bring him straight back to the ward.
Antibiotics in hospital every day this week.
Be careful of fatty foods so it does not upset his pancreas
At 3:30 they arrived home and we had this update:
Daily Update:
It’s a few hours earlier than normal today.
We have Tom home!
He will need to go back to hospital each day this week for IV antibiotics to keep on top of the nasties that he has.
The blood cultures have come back clear, meaning that they have not been able to get the bacteria to grow since the 18th.
We just need to watch Tom and take him straight back if anything is off.
Hopefully this is the end of it all!
Speaking to the doctor last night, she was saying that there have been more than the usual number of teens hit with pancreatitis lately. Under 5 cases is high for a year, but it has been more than anyone would expect to see, so there is research going into a possible viral or environmental link that could have caused it in so many teens recently.
So for now it is daily visits to the hospital for IV antibiotics until Tuesday when he reaches 10 days and can hopefully have the IV removed. Then he is on oral antibiotics for a week or so. There's still some fluid and necrotic tissue on the pancreas, so we have quite a few tests and scans over the next few months, but he has his energy back and is home so a great result all round.
Alana also arrived safely back in Australia and was already settling in well - so everyone is finally back where they should be!
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