There and back again - the prequel (Day +616)

Howdy fans of der Starke. And so we have finally gotten around to updating the blog. With all that has been going on in Max's world over the past two months, it is fair to say that we have been very busy. In fact 'very busy' would be greatly understating the matter. The good news is Max is out of hospital, his skin looks as good as it has for a long time and he's been having a grand old time reacquainting himself with his ever expanding fleet of toy cars. 

Since we last wrote (sorry to keep you hanging!) Max has had a 'permacath' surgically implanted to facilitate the photophoresis therapy (Mr Hose Mark II), begun photophoresis, been discharged from hospital, diagnosed with an infection which required daily IV doses of antibiotics at home, readmitted to hospital when the infection wasn't responding to the antibiotics, underwent a two week course of stronger antibiotics in hospital, discharged again, diagnosed with the same infection and readmitted to hospital, began another course of antibiotics, had the permacath removed as it was deduced that it was probably harbouring the infection, in turn temporarily suspending photophoresis, and finally, discharged from hospital again for the third time in two and half months. Meanwhile, Bee has not been too well herself and our renovation, which we started the very day Max was first admitted, continues at a cracking pace. Very busy indeed.

Max first admitted in Emergency...before the fluid boluses blew up his body.

So let's go back to where we last left you. Max was still in ICU and he was just about to commence photophoresis. At the time of writing the last blog, because we weren't out of the woods by any stretch and we didn't want to alarm anybody, we didn't quite convey how perilous Max's situation had become.  As you may remember, Max was admitted to hospital with a very high fever on a Wednesday. By the next Monday, the fever had gone but his breathing function was slowly diminishing, as evidenced by his falling SAT (Oxygen Saturation) scores and so he was admitted to ICU where he was put on a BiPap breathing machine. Still, nothing had turned up in the tests and all the doctors were at a loss as to identifying what was causing Max's ill health. Over the course of the week, his breathing function had deteriorated further and showed no signs of improving. 

On the BiPap machine 24/7!

On the Friday night, due to exhaustion on Bee's and I's behalf, we decided to, for the first time, spend the night away from Max's side and to leave him alone with the nurse. Unlike other wards, ICU is not really set up to accommodate parents staying overnight; there are a couple of chairs to sit on and that's it. No pullout bed. No bench seat. This is understandable for many reasons, one of which being that in ICU each patient has their own nurse, so there is always somebody by the child's bed.

At 6am on the Saturday morning we got a phone call from a doctor in ICU to tell us that Max's breathing had gone downhill overnight and that the morning's x-ray showed that his lungs were getting 'cloudier'. They claimed that they really had no other choice but to intubate him (i.e. insert a tube down his throat and into his lungs to help him breathe). Bee was the unfortunate one to take the call but I was able to hear every word the doctor said on the other end of the line and the ominous tone in which it was delivered. Worst wake up call ever.

We quickly got dressed and ran over to the hospital where we were further briefed by the doctor on why they were intubating Max and what the procedure entailed. We then each gave Max a kiss on the forehead and wished him luck before we were ushered off to a waiting room and told to wait about half an hour. After 40 minutes, no one had visited us so I headed out to the nurses station to see WTF (what the freak) was going on. As I was walking to the station, the anaesthetist who assisted with Max's intubation was walking away from Max's room and towards me, but talking to someone in another room as he walked. "That was hairy,” he said in the tone of someone who had just come from a very, very hairy situation. (I don't think he recognised me - the father of the child in the middle of the said very, very hairy situation - otherwise you would have hoped he wouldn’t have been so candid). Anyway, it’s probably not the best thing to hear as you’re waiting for news of your child. Cue more WTFs.

At the nurses’ station, I was told to wait just a few more minutes. Eventually, the doctor came to see us and explained that despite intubation being a regular, ‘every day’ procedure, it had been hairy and complicated by the amount of 'gunk' that had got in the way of them inserting the breathing tube. Although a straightforward operation, the patient's lung muscles are switched off during it, with oxygen supplied by somebody squeezing a bag at regular intervals to inflate and deflate the lungs until the tube is inserted. 'Gunk' tends to complicate the bag handler's job. The good news was that the procedure was eventually successful; his SATs were holding steady and although bombed out by sedatives, he was breathing comfortably with the machine. Seeing him again was a weird mix of both utter relief and shock to see him hooked up to the machine with a tube sticking out of his mouth.

Intubated...fluid all gone from his body...but still playing havoc in his lungs

The doctors explained that the purpose of intubating Max and putting him on the breathing machine was to give his lungs some help and recover a bit until whatever it was that was ailing him passed. What we knew was that he had fluid on his lungs, that the x-rays of his lungs were not flash and that the doctors where no closer to identifying the cause. Was it an infection? Bacterial, viral or fungal? Was it possibly Graft Versus Host disease manifesting itself in his lungs? Or was it something altogether unexpected? By this stage Max had had so many blood tests, xrays, ultrasounds, MRIs and CAT scans it was frustrating not to know what was going on but Bee and I had to keep reassuring ourselves that Max was in the best possible place to help him get through this.   

One of the MANY scans Max had.

The plan ahead, according to the doctors, was to gradually dial down how much work the machine was doing compared to his lungs and the percentage level of oxygen being given, making sure that his SATs held, until eventually Max was effectively breathing on his own again. Once this point was reached they could consider extubating him. 

The next two days, Max was pretty much out of it. On Sunday night he started to stir and was noticeably agitated by an itch that was attributed to the morphine he was receiving for pain relief. Although he was incredibly uncomfortable, it was reassuring just to see him moving around again.

Still intubated, but clearly not sedated as much as he should have been.

Monday arrived and it was a great relief to see the back of what was a pretty horrible weekend. From Monday, Max started to improve quite quickly.  With each day that passed the news was that his x-rays were looking better and that his breathing was improving. Each time the nurse dialled down the ventilator was a cause for celebration. They also gradually reduced his level of sedation and he was becoming noticeably more lucid. We knew Max had well and truly turned the corner during a Music therapy session on either the Tuesday or the Wednesday. I was helping out the music therapist, as she sang the ‘frogs jumping in the pond’ song, by removing little magnetic frogs from a board and putting them into a container in time to the music. Before I could remove the second frog, Max had reached up and snatched the frog and put it into the container. What a cheeky bugger!  (video to follow soon)

A Music Therapy session with Beth

On the Wednesday, after a bit of a delay, Max had surgery to put the line in his chest required for photophoresis. On Thursday morning, Max had his first session of photophoresis. On Thursday afternoon, after a while of sitting on 21% Oxygen and Max consistently beating the ventilator to each breath, the tube was removed and we were able to hear his sweet little voice again; Top Gear was on his DVD player at the time and his first words were ‘Watch this bit!’. Our Maxi, was back! On Friday we left ICU, after a stay of 11 days, for the relative home of the 6^th floor.

In Mum's arms again!

To be continued…

UPDATE: Here's a video of Max and the speckled frogs