One Step Closer

Ilias underwent his mictie cystogram this afternoon, somewhat later than planned, because of a miscommunication somewhere between the children’s ward and the radiology department.

Upon arrival in Radiology and the removal of Ilias’ nappy, the radiologist was surprised to find that a catheter had not yet been placed. After a brief exchange with our nurse, we left with Ilias and made our way to the department where this unfortunate adventure had all begun last Wednesday afternoon. There, two nurses soon appeared and proceeded to insert a catheter into Ilias’ bladder via his tiny penis, an experience that was as gruelling for me as it was for my little boy. Easy to say, I know, as someone who had only to watch, not actually have it done to him, but the experience caused me quite some distress. There’s no experience that compares to the agony of watching your child in pain and being unable to help.

Back in Radiology, the mictie cystogram itself was much less of an ordeal. Sarah and I donned lead overcoats to protect us from the radiation — no such luck for Ilias, of course — and he was hooked up to the bag of contrast fluid, which was then slowly pumped into his bladder.

Sarah and I watched on the screen, as the fluid diffused to fill Ilias’ tiny bladder, colouring it black in the process. The liquid itself had no colour, but whatever it contained showed up black on the screen.

To my inexpert eye, the fluid appeared to remain entirely within the bladder, but I’m not a doctor, so we waited for the end of the procedure. With all of the necessary x-rays taken, the balloon holding the catheter in place was deflated and Ilias began to pee, causing the catheter to be ejected from his body, which denoted the end of the procedure.

We had expected to have to wait until the evening for the results of the test, but they were so unambiguous that we were immediately informed that nothing unusual had been found. The relief and happiness I felt at hearing this news is the greatest I have felt since Ilias was born, almost four weeks ago. I can’t describe how elated I felt.

We returned to the children’s ward and, within half an hour or so, the paediatric nephrologist turned up to discuss the results of the examination.

It was good news, obviously, and meant that, at this point, his infection could be attributed to sheer bad luck. Exactly how it occurred, we’ll never know, but we’re told it almost certainly occurred internally, in the bowel or possibly via the bloodstream, but almost certainly not via a nappy full of excrement, as I had originally thought.

This isn’t quite the ‘all clear’, however. We’re told that the original infection carries a risk of permanent kidney damage, which could lead to a lifelong dependency on medicine against high blood pressure. We won’t be able to establish whether this is the case, however, for a further six months, at which time the nephrologist wants us to come back for a nuclear examination, which involves injecting radioactive liquid into the body and observing how it clings to the kidneys. You can imagine how eager we are to inject radioactive material into our son’s body, can’t you?

Ilias’ infusion needle failed this morning. Rather than place another needle in his body, he has instead been switched over to oral antibiotics. The danger with these is that he becomes sick with diarrhoea or vomits some or all of it out. If that doesn’t happen, there’s a good chance that Ilias will be discharged from hospital Tuesday afternoon, but we’re not counting out chickens until they actually hatch.

Eloïse and Lucas have gone to bed this evening for the sixth night without their mother. Before this derailment of our lives, they had never spent a night apart from her, or even in a different room. They both miss Sarah and Ilias very much, but are proving very resilient in the circumstances. Eloïse tells me she misses Ilias the most, because she has known him only a short amount of time.

Indeed, it’s pitiful that Ilias has now spent a quarter of his short time on earth in residence at the hospital. What a way to start out your life, pricked like a pincushion, pumped full of antibiotics and with a pipe rammed down your pisser. Having a thermometer stuck up your arse several times a day is almost light relief by comparison!

His first three weeks at home now seem distant, overwhelmed by the drama of the last few days and the deep impressions made by his new surroundings, invasive medical treatment and the fears and concerns that have beset us.

My two visits a day to the hospital are now part of the daily rhythm of life. I feel as if I’ve been making that same journey for weeks. Today, I actually only went once, because I stayed from 11:45 to 18:15, so there didn’t seem to be much point in going back.

Tomorrow, Eloïse, Lucas, Sarah’s folks and I will head to the hospital after lunch; possibly for the last time. We hope to hear in the course of the afternoon that we can take Ilias home. I don’t dare focus on it, just in case there’s a setback that prevents it from happening, but I hope that the family won’t have to spend another night apart.

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Temperature Normal

Ilias sleeping in hospital yesterday

The good news is that Ilias is doing well.

The results of the urinal culture came back yesterday and showed E. coli bacteria in his urinal tract. This was as suspected.

We’re hoping he suffered just a fluke and got some poop in his piss pipes, but he’ll be undergoing a mictie cystogram tomorrow afternoon to make sure that he doesn’t have any anatomical defects that may have precipitated the issue.

I don’t know the English word for mictie cystogram, but they basically inject contrast fluid into his bladder via a catheter and wait to see whether any flows upwards towards his kidneys, which would indicate a bad valve. If that happens, he may need an operation, so we’re really hoping it doesn’t. Just watching them insert the catheter is going to be bad enough. Even the doctors will admit that it causes “discomfort”, which tells you enough.

Other than a possible physical abnormality somewhere, he’s fine, though. His temperature has returned to normal and he continues to drink healthily from the breast. Visually, at least, he is a picture of perfect health. Hopefully, the same is true of his plumbing.

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Once You Get On, You Can’t Get Off

Ilias developed a fever in the small hours of Tuesday morning. It was oscillating between 37.5 – 38.75°C, so we called the doctor’s post (our own doctor is on holiday) and agreed to bring Ilias in for a check-up. You can’t be too careful with such a young baby.

The doctor examined him, then told us he saw nothing untoward. We should keep an eye on him and make sure that he stayed hydrated. We agreed to call the next day with a status update.

Wednesday morning, Ilias’ fever was subsiding. It was below 38°C and steadily dropping by the hour. Good news, we thought; he was on the mend.

We called the doctor, as arranged, and gave him our update. He asked us to bring in a sample of pee, so that he could test it. Ilias wasn’t required to attend.

I biked the bottle of pee over to his surgery at 11:30 and noted that it was cloudy. The doctor made the same observation, then ran a test on it and informed me that there was a possibility that Ilias had somehow sustained a urinary tract infection. He made an appointment for Ilias with a paediatrician at the VU Medisch Centrum for the same afternoon.

The doctor’s manner as he wrote out the referral for Ilias was laconic, so I thought we were going to the hospital for what amounted to a second opinion. I expected the paediatrician there to look at the temperature chart we’d been keeping, see that things were quickly returning to normal, and send us home with the advice to keep an eye on things for a couple of days.

That’s what we expected. Here’s what actually happened.

After arriving at the hospital and registering Ilias as a first-time patient, we reported to the Paediatrics department, where we had the appointment. We were soon ushered into a room, where a female doctor joined us shortly afterwards.

This doctor informed us that she wanted to insert a catheter into Ilias’ tiny penis in order to extract some pee for a urine test. This was an unwelcome opening salvo and quite unnecessary as far as we were concerned. Fuck that!

We told her that Ilias can pee on command, which is true. We hiss in his ear and he starts to pee. You can scoff, but it has to be seen to be believed. He does this reliably.

Unfortunately, the doctor then partially undressed him to examine him with a stethoscope, causing him to pee a large amount into his nappy. This left him with nothing left to pee for the sample.

We continued to protest against the idea of a catheter and managed to buy ourselves some time with the jar of pee we had brought with us. The doctor was first afraid that the jar wouldn’t have been sterile when we used it, but we explained that it had been cleaned with boiling water and this was then deemed acceptable.

We were soon joined by a nurse, another doctor and a woman whose job it was to draw blood. Each began to chip in with observations and advice. The pressure on us was quickly ratcheted up and an obvious, concerted effort was being made to make us succumb to the will of the white coats.

The precise chronology of events becomes a blur at this point, because things suddenly started to move very quickly.

In my recollection, a couple of very awkward, painful and extremely stressful attempts at drawing blood came next. Ilias screamed and squealed like a piglet as the needle was pushed into his tiny vein.

After what seemed like an eternity, blood was extracted, the ordeal finally ended and we were sent to another building, accompanied by the nurse, to await an ultrasound scan of Ilias’ nether regions.

That was a relatively relaxed affair, by comparison, but turned up a slight thickening somewhere near the renal pelvis.

Back on the other side of the hospital, we were confronted with the blood and urine test results, which, together with the ultrasound, all confirmed the diagnosis of a suspected urinary tract infection. We were informed that the hospital wished to admit Ilias and immediately begin administering a course of antibiotics.

At that point, things started to take on a surreal element, as we found ourselves participating in what felt like a theatrical production with us cast involuntarily in the leading roles.

A heated discussion ensued. We stressed that Ilias’ fever was dissipating and explained our stance on antibiotics, namely that they wreak havoc on intestinal flora, particularly in such a young child, and are an absolute last resort, as far as we’re concerned.

After being given some time alone to consider our options, we were interrupted and politely but firmly informed that we actually had no options, so we may as well acquiesce and expedite the proceedings. We sought clarification, just to be sure there was no misunderstanding, but we had correctly understood their meaning. If we refused treatment for Ilias, steps would be taken to have our parental authority revoked, so that he could be treated regardless. Visions of being restrained by security guards or police officers began to flash in front of my eyes. I suddenly felt as if I was playing the role of a Jehovah’s Witness in some bad movie.

At this point, it dawned on me that they thought Ilias might actually be going to die. When I said as much, the language the doctors’ used became steadily less flowery until they admitted in no uncertain terms that, yes, he might die if we didn’t act soon.

It was a lot to take on board. After all, just a couple of hours previous, we had been of the opinion that our son was shaking off the remnants of a two day fever and was almost back to normal. His behaviour was that of a healthy baby. It was rather hard to accept from the assembled group of people that he was actually so direly in need of treatment that a court order might be necessary in order to guarantee that he receive it.

Fast-forwarding somewhat, we consented to the treatment, which was to have been my decision anyway, irrespective of the duress. Sarah strongly felt that she had been pressurised into the decision, which she had, but I was too alarmed and afraid by then to feel much indignation. I just wanted my son to remain alive.

Multiple failed and very painful attempts were made at putting in an infusion needle, but they just couldn’t tap into one of Ilias’ minuscule veins. He screamed and writhed in pain at each intrusion of the needle into his tender young flesh. It was absolutely fucking heartbreaking to listen to his helpless, tortured squeals. Every nerve in my body was telling me, as his parent, to get up, kick the shit out of these fuckers and end his torment there and then.

Cutting a long story short — I need to sleep — Ilias has been admitted to hospital and now has an infusion needle in his scalp, after the previous line in his foot also failed following a single infusion. He is being given an infusion of wide-spectrum antibiotics three times a day.

Sarah is with him 24 hours a day and he — and thus she, too — is expected to remain in hospital for at least a week.

Today (Thursday), Ilias no longer has a fever and appears to be a perfectly fit, healthy baby. From the doctors’ point of view, though, they got to him early and he is responding to the treatment.

It will be a few days before the blood culture reveals which bacteria are present in his blood. At that point, they’ll know whether he has been on the most effective course of antibiotics, or whether they’ll need to start him on a new course of more directed medicine. Some antibiotics can be administered orally, others have to be given intravenously; so, depending on how well chosen the current drugs are, and whether or not any new antibiotics to be taken a few days from now can be given orally or not, the duration of Ilias’ stay in the hospital will be determined in due course.

That still leaves the question of how he developed this infection in the first place. No anatomical abnormalities were found during the ultrasound, but a close inspection of his valves has not yet been conducted. It could be that one of these valves is leaking fluid in the wrong direction. Equally, it could simply be a case of extraordinarily bad luck, with a fleck of faeces having found its way into Ilias’s urethra, possibly via a particularly full nappy.

There are tests that can be done to determine the presence of faulty valves, but these haven’t yet really been discussed. It’s still early days.

Eloïse and Lucas have spent their first night without their mother, which, all things considering, went very well. The whole family, including Sarah’s mum and dad, visited Ilias and Sarah in hospital today. Naturally, that’s a trip we’ll be making every day until we can bring them home.

I’ve left out a lot of detail from this story, but with a wife and mother in hospital and two children to care for at home, there aren’t enough hours in the day at the moment.

I’m keeping an album with photos of Ilias’s stay in the hospital. The photos don’t make for very pleasant viewing.

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Pain

Which would you rather have? A root canal that lasts for three hours or your in-laws coming to stay with you for three weeks?

I’m lucky enough that I get to have both: the root canal yesterday, the in-laws’ arrival tomorrow.

On a more positive note, I don’t have cancer (as far as I know).

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Road Test

Ilias had his first bath on Thursday. Newborns have a uniquely lovely smell, a scent that supposedly aids bonding, so we like to let it sit for a week or so after birth. He was looking a bit flaky, though, so we decided it was time for a bath to spruce him up a bit.

He wasn’t terribly impressed with the baby bath, but a couple of days later, Sarah put him in the shower sling and took him under the shower with her. He seemed to really like that and didn’t mind the water spraying all over him.

Today, we took the children in the car and went to the Amsterdamse Bos, more specifically the goat farm there. This was an important confirmation of the new car’s ability to seat the three children in a row with with plenty of room to spare. Lucas and Ilias were in ISOFIX child seats, with Eloïse seated on one of the collapsible booster seats that we had built into the outer seats of the second row.

The real test, however, was for Ilias. How would he cope with being driven in the car? Neither Eloïse or Lucas had enjoyed their first journey, that’s for sure. Even now, it’s always touch and go whether Lucas will manage to keep the contents of his stomach on the inside.

Well, I’m pleased to say that Ilias currently leads the board in the easy car baby stakes. He didn’t wince, either on the way there or on the way back. Perhaps he was too distracted by his big brother and sister staring at him (at this young age, he faces backwards in his car seat).

Before we went out, I managed to catch some nice shots of Ilias sleeping.

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