Where everybody knows your name

Pneumonia, trachyitus & MRSA admission at Children's

Saturday 2:00am, our nurse Ivy wakes us with the news that Reuben is desatting, still holding in the 90s but for Reuben, a solid, late 90s man, it marks a significant change. She suspects pneumonia. By 2:15am we are in the car heading to Children’s and have been here ever since. We enter through the ER and, after signing the obligatory financial papers, are ushered to bed A in the trauma room, ironically the same bed Reuben was ushered to back on 12 July at the start of the 3 month admission, back then with pneumonia too.

I did feel myself well up at 8:00am, when we are told he is to be admitted, but perhaps it was more of a relief that finally, after Reu’s intolerance to food over the last 7 weeks at home, we might be able to deal with his health issues within the controlled environment of Children’s, our safe haven. He has thrown up at least one of his daily feeds a day at home and despite an Upper GI (gastrointestinal) study in early November showing no reflux (food coming back up into his esophagus), our studying and changing every variable that might contribute to the emesis, whether formula, rate or volume, have had futile results.

Lips I've kissed a thousand times

Looking at him, you would never know

We are assigned to a private room on the floor (not the intensive cares as I believe we have caught the infection early) with two patient spaces, but given Reuben’s contact precautions, predicating that anyone entering the room wears a surgical mask, cobalt gloves and yellow gowns, we have the room to ourselves. So I decide to stay with Reuben for the duration of his stay in Children’s, however long that might be, sleeping on the sofa in the corner as Jason drives back home at night. I can't bear to leave my little love in a big room alone with no one to hear his little coughs and what that might trigger. As said previously, on the floor, the nurse may pop in every couple of hours and the RT every 4 hours, but I know I need to stay with him and do most of the nursing myself, as it should be of course, the eternal suctioning as his body fights the infections.

In the wee small hours in that room, I feel like a patient myself at times, the nurses, RTs or Drs coming over to chat with me whilst I’m lying down on my makeshift bed and poking me out of slumber at ungodly hours with fluorescent overhead lights.

Reuben sleeps a lot during the day, he’s worn out and yet the flurry of new faces passing through the door with their yellow masks often raises a smile for him. I am continually tickled as Dr after Dr, decked in cobalt blue gloves, places a stethoscope to Reu's chest and Reu duly responds by grabbing the most desired blue finger of their hand, studies it and duly puts it into his mouth. He is so engaging with every new and strange face, maintaining eye contact where their mouths are disguised by the masks. Perhaps one very positive thing to come out of this experience for him; he loves familiar faces, but soo too enjoys the comfort of strangers, unphased by unfamiliarity.

By Saturday afternoon, Jason has made the return 25 mile journey back home and back to bring back Reu's favourite toys, which he has hanging from the overhead bars of his playmat, something which Jason and the nurse have erected over the hospital crib. It works great and Reu is content. I thought babies were uncomfortable with new surroundings, that it can disturb them because it’s a change of routine. I’ve never known Reu to be perturbed by any changes of routine and I think given all the social callings at Children's, he’s as happy as Larry here.

Making it feel like home

Over these days, I observe he is visibly and actively swallowing secretions or otherwise. This is a new development and gives us hope for future oral feeding, although we’re very aware that it can take months and years to counter the degree of oral aversion which has naturally overtaken him after 7 months of tube feeds.

I blow raspberries to him, and, imitating me, he giggles excitedly with a raspy laugh that emanates from the echoing chamber of his trach. We clap hands in front of him and he lifts his hands to the back of our hands and claps with us, a personal favourite form of entertainment for him. When physio visits, he demonstrates his improved gross motor skills by lifting his hand in prone position whilst on his stomach. Shelley the PT is clearly delighted with him re his progress since the PICU and NICU. She says the most lovely thing (which I'm only recalling now two days on) that Reu is a perfect example of nurture over nature.

Reuben makes so many people laugh and so many people engage with him here. They see his name on the list of admissions. He has social visits from nurses Stephanie and Rhonda and RT Wayne, along with the plethora of getting-down-to-medical-business visits from Dr Charlie (part social too), Dr Adhoot and Dr Burke admiring his "beer belly", all of whom we knew in the PICU.

Something so natural, so unnatural to me. I fall to sleep listening to my little boy's intakes of breath beside me.

Sunday: Reuben is kept on IV fluids and relaxes unawares into his new routine. The results of trach cultures are showing pneumonia, pseudomonas and trachyitus. Reu is being treated aggressively with 3 different antibiotics. He's been colonised with pseudomonas since the NICU and at times when his immunity is lowered, the critters come out and cause havoc for him. He's suffered much during the weeks at home with the constant vomiting.

Monday: The Gastric Emptying study, originally booked for 12 December (we were having issues with Reu having to suffer another 10 days of throwing up whilst awaiting this study) is conducted.

Gastric Emptying

The procedure is undertaken by nuclear medicine physicians using radioactive chemicals to measure the speed with which food empties from the stomach and enters the s`mall intestine. We have suspected delayed emptying of the stomach due to Reu's vomiting and abdominal fullness after eating. There's always a strange irony about such procedures, Reu wearing an xray jacket to keep us from being affected by the radioactive materials in his stomach.

It's reassuring to see an improvement since May's GE study in both reflux and emptying. Back then, he was diagnosed with GERD, gastroesophageal reflux disorder, with delayed emptying. Today the results are normal gastric emptying of 62% at 60 minutes and 64% at 90 minutes. The lower limits of normal gastric emptying are 45% and 60% for 60 and 90 minutes respectively. During the 90 minutes, Reu has no episodes of gastroesophageal reflux. This is great news. Perhaps the positive benefits accrued from the cardio bypass have meant that Reu’s digestion system has also improved or perhaps he has just matured. Whatever the position, one thing is clear: the fundoplication operation in May, laparascopically (keyhole) undertaken at the same time as his Gtube, in which a part of his stomach was wrapped around the lower end of the esophagus, thus preventing fluids from traveling upward, is clearly not doing its job. My understanding is that you can get a little spit up even with the fundo, but Reu shouldn't really be able to burp, let alone throw up half a bolus feed.

Reu's starts to bleed from his trach when suctioned with an 8Fr cathetar, an alarming sight at first so we call the Drs in, but with constant coughing, it's not surprising.

Tuesday: We try Reu on 10ml feeds, increasing to 30ml feeds which are tolerated. We try 24hrs on the hospital’s feeding pump, 75ml over an hour, 3 times during the day and then continuous feeding at 40ml per hour for the 12 hours he sleeps overnight (honestly, he’s an easy baby). The cranial facial team come to visit and we discuss plastic surgery to correct his right ear which can be done at age 5 and surgery to correct his right eyelid which Reu would benefit from in the short term as his eyelashes often irritate his eye. The department has interests in every aspect, drawing in a variety of disciplines including pulmonology, dentistry and surgery.

The secretions continue to flow and no damn will stop them, which is evidence that his body is fighting both the viral and bacterial infections.

Hear from Gwen from the Deaf Programme with get well soon messages after we've cancelled our appointment for Wednesday. Fellow expat and friend Vanessa calls too offering support. Always great to hear from her, helps buoy me up! Martin Stitts calls and I don't even think to ask if he won at Venice, too busy hearing about him schmoozing with Judi Dench. Funny I can look out the window and see his film school.

Hospital room with a view of the Hollywood Hills post wildfire and the American Film Institute. These hills and mountains can be seen from our apartment in the marina

Wednesday: Today we try to rule out another variable, our Kangaroo Pump from home. We rig it up and try the same feeding schedule from yesterday, 75, 75, 40 continuous and he tolerates all the feeds. Reu is given the OK to go home, the pneumonia being sensitive to the 1 new antibiotic via his Gtube (gastronomy tube) and the other 3 antibiotics being administered intravenously, have been stopped. The fact that it can be administered via Gtube means that we can continue to treat Reuben at home. We take Reu for a stroll around the hospital garden, bedecked with a huge Christmas tree, Santas and decorations. The Santa Ana winds are back and the weather is gloriously warm outside. I haven't left the room since Saturday, so it's refreshing for both of us to get out.

First snowflake

About to eat Santa's beard

Reu in his open sleigh, wearing a surgical mask to protect other children with low immunity, and his new sunglasses, admiring the Christmas decorations in the garden

Thursday: My night, after 4 back to back episodes of Project Runway (we don't have a TV at home so I'm not sure how to deal with my new found addiction), consists of Reu coughing briefly at 12am, 2am, 3am, 4am and 5am and each time I rush over to him, arriving just in time to save him vomiting a flood of secretions. I sleep heavier than a giant, yet have become acutely tuned into Reu's little cough, awakening at the merest suggestion of irritation. At 6.30am, the Dr comes in and wakes me up from a pitiful night's sleep to ask how the night's been. By the afternoon, we are home to continue his recuperation there. As Dr Charlie says, the hospital is a "cesspit" of germs. Reu and I cosy up in my bed at 5pm (yes, I've decided, it can be done and I'll take that lesson home!), knowing there's a truly huge Christmas tree which gobbles up half our apartment awaiting our tree trimming celebration tomorrow. The scent of pine filters through.