15 Days ...

Originally posted on my "old" blog ... November 12, 2010 ... although I added extra information at the end ...  and appropriately this is being scheduled to post on my son's birthday ...

My five year-old son spent 15 days in the hospital, including two surgeries, six in-room procedures and countless tubes, IVs, pokes and other fun things ... so here is the entire story.

First off, I will preempt this by telling all my lovely readers that my middle daughter has a history of chronic illness, and usually when these kinds of things happen, they happen to her. My son does have a history of Reactive Airway Disease (RAD) and has had pneumonia three times, but two of them weren't bad at all and the third was associated with lab-confirmed H1N1 last fall. He did end up on in-home oxygen with that one, and they talked about hospitalizing him, but never did.

So, here is the story of our little adventure this fall ....

On Wednesday October 13, my cute little five year-old boy started off a cold with some sniffles and a little bit of a cough, but nothing seemed too bad, according to his dad (sidebar- my kids go every other month and every other weekend between their father and me, October was their month with their dad). Saturday morning his dad started getting more worried about him, he was spiking high fevers, throwing up almost everything he ate (including medicine), and had a really good, unproductive cough ... Sunday morning my son was taken to urgent care, they said that he sounded clear, his O2 Saturation was in
the low 90s, which isn't bad ... they told my ex-husband to take him home and get him some rest, that it was just a virus, the normal thing that us parents here over viruses, and of course; if he's getting worse or not better in a few days, take him to his normal pediatrician ... well Tuesday, October 19 I had the kids for dinner, and he was just not himself, he was lethargic and coughing almost constantly, his dad and grandma told me he was actually doing better than he had been ... but that night he took a turn for the worse, a fever spiked again, his breathing became rapid and labored ... so Wednesday morning my ex took him to the pediatrician ... where he was bouncing around the office, and his lungs sounded clear, but the pediatrician didn't like his respiration rate and sent him for a chest x-ray .... what they found looked something like this:

This isn't my son's x-ray, but one that was remarkably like his ... it's called a white-out, and basically means that his right lung wasn't really working at all ... the pediatrician called my ex-husband and told him to drive him straight to Children's Hospital that he might need surgery, but he definitely needed to be at the hospital, he then called me ... about 10 minutes later I received another call from him, telling me the pediatrician had called him again and that our baby boy needed to be taken by ambulance, instead of driven to Children's ...

So, that's what they did, they went by ambulance to the hospital ...

Whether luck or fate played into the fact that my boyfriend was here visiting during that time I don't know, but he came up to visit me on the nineteenth, and was able to drive me and be my main source of support through all of this, and I am grateful he was here ... so he drove me to the hospital where we actually beat the ambulance ...

In the ER, his vital signs were okay, the doctor said he "didn't sound that bad" after listening to him breathe ... he said he would have the nurse come in and start an IV, go check out the x-ray and be back in twenty minutes or so, he came back about a minute later and said "ok, that x-ray is impressive" .. and told us he was going to arrange for a room for him on the pulmonary floor and called in surgery for consult ... surgery came and looked and decided it wasn't "bad enough" for surgery right then ... a few hours later we were moved to the pulmonary floor ...

Over the course of the night, he became worse and worse, he was sweating constantly, coughing constantly, his O2 sat kept dropping and an early morning chest x-ray came back worse as well, it looked something like this .... you could no longer even see his ribs on the right side ...

The PICU team was consulted and he was moved to the PICU ... within an hour of being there the PICU team decided not to wait on surgery and to insert a chest tube themselves to see if they could get some of the fluid out of his pleural sack ... so he was intubated and put on a ventilator ...

Smiling through the pain just before moving to the PICU

They tried to get fluid out of a chest tube, but weren't successful, so they called in pulmonology ... he then had the first of two bronchoscopies ... where they looked at the inside of his lung and sucked out some bad junk from the inside, but they still knew there was stuff on the outside as well ...

While he was on the ventilator, he would "choke" ... the ventilator and his airway would become clogged with mucus and such, they would have to bag and suction him ... that was the hardest thing for me, of everything he went through ... watching his entire body rise and fall when they bagged him ... watching his eyes water when they suctioned him .... knowing it was all for his good and saving his precious little life ... but still scary as all hell

In the PICU ... he had a ventilator, the feeding tube, two IVs, one central line, an arterial blood pressure monitor, a foley catheter, EKG monitors, suction for the ventilator and his O2 monitor ... a lot of tubes and gadgets for such a little boy

His two chest tubes

... the next morning his chest x-ray wasn't any better, after boat loads of antibiotics, and all sorts of other things they had done ... so they took him into surgery and did a procedure called VATS (video-assisted thoracopscopic surgery) ... they cleaned out what was a large empyema (basically a large abscess between the pleural sack, or lung sack for layman terms, and the lung itself ... a large pocket of pus and other loveliness, from the pneumonia in his lung draining out into the sack) .... they left in two chest tubes to continue to let fluid drain ..

During his bronchoscopy

Immediately after he came back from surgery he was given another brochoscopy ... to, again, check the inside of his lung and suck out what they could ... the pulmonologist was very satisfied with what they were able to get out this time, saying that they were able to free a bunch of plugs and that it should help him a lot to get air back in the lower portion of his lung .... 


He spent the next twenty-four hours in and out of consciousness, he would be awake and alert and nod his head and squeeze your hand, and follow directions ... the nurses were all amazed they said adults would never act like that while on a ventilator ...


Less than three days after being put on the ventilator, the decided it was time to extibate him, he was taken off the ventilator the evening of October 23 ... he was exhausted and drugged up, but the fact that he was no longer on a ventilator was very relieving to me ...

Off the ventilator looking at his ABC book with my honey

He was moved back to the Pulmonary floor the next afternoon .... where he remained the rest of his stay at Children's ... 


He was making very good progress and on Monday October 25, they took out his chest tubes, giving him the freedom to walk around his room, they were encouraging him to get up and move, saying that exercising and working that lung would help him get better ... he spent some time decorating his room, and blowing marshmallows with a marshmallow gun (a clever device to get them to exert lung power) ... he also was blowing on party blowers and spinning pinwheels ... 

Up and moving around his hospital room

His x-rays and bloodwork still showed signs of pneumonia/infection, and it wasn't getting better ... so there was discussion about what to do .. 


But then something else happened ... Wednesday October 27, his morning chest x-ray revealed that he had suffered from a tension pneumothorax ... his lung had collapsed due to air pressure from outside the lung ... his pleural sack that they had cleaned out from all the pus and gunk had filled with air and collapsed his lung ...


They tried to re-insert a chest tube in his room, but couldn't get his lung to re-inflate ... so he went in a few hours later for emergency surgery to place the chest tube and re-inflate his lung, by bagging him ... which I already told you all I loved so much ... I went with him into the surgery room and held his hand as the anesthesia hit him ... and then left him in the hands of skilled surgeons ... less than two hours later they were done ... and he was out and conscious ... and hungry ... he had ordered breakfast that morning, but between when it was ordered and when it got to him, he went NPO (nothing by mouth) ... because they knew the surgery was coming .... so all he wanted was the waffles he had ordered, so we ordered him fresh waffles, and he was able to eat ... but he was back to being confined to his bed ...

Things were pretty stable for a few days .... and then his bloodcounts revealed that his infection may actually be getting worse, so on Friday, October 29, they put him on two new antibiotics, one was Vancomycin, which is literally considered the drug of last resort in the antibiotic world, it is the broadest spectrum, strongest antibiotic available, and the other was an antibiotic designed to kill anaerobic bacteria, which is bacteria that live in low to no oxygen environments, which, for a while now, the bottom of his lung had been ... the combination of the two or one or the other was helping him greatly ... but he still wasn't going to leave the hospital in time for Halloween ... so he laid in his hospital bed, in his Batman costume, all day on Halloween, he was a great sport about the whole thing, and his sisters did extra trick-or-treating for him ... I had to cut holes in his costume so that the nurses could get to his IVs and his chest tube could sit properly, but he still got to be Batman all day ... 

Up and eating lunch on the couch/bed in his hospital room

By Tuesday, November 2, he was doing a lot better and they decided to remove the final chest tube ... he was now on oral antibiotics, room air and had nothing attached to him, except his EKG wires and oxymeter ... so he was somewhat free ... we were told they hoped he would go home by the weekend, but they wanted to be able to make sure he was keeping his oral antibiotics down and that his bloodcounts and x-rays were getting better ... we expected maybe Friday or Saturday, but on Thursday morning they decided he would be discharged Thursday afternoon ... so at 4:45 on Thursday, November 4, he was discharged from the hospital ... he had to continue taking an inhaler and his antibiotics at home, and saw his pediatrician on November 8, who said he seemed like he was getting better, not healthy, but getting there ... he will see the pulmonology specialists at Children's at the end of December to determine his long-term care .. because it's not just about him getting better from this ... it's about making sure it doesn't happen again ... 

All packed up to go home ... he acquired a lot of goodies at the hospital

He is lucky he is young, the pulmonologists say in post-pubescent people that something like this would leave them with diminished lung function for life, but at his age, it will probably all resolve itself within a year or two ... provided he stays healthy ... he was told to return to school as tolerated ... he went to school Monday for a half day, Tuesday he stayed home, Wednesday he went for a half day, Thursday he went for a whole day, but then Friday (today) he said he was sleepy and his stomach hurt, he stayed home, and slept until almost noon. So, his stamina is coming back slowly, but it is coming back. 


It is very hard to see a child go through all this, and he was amazing and brave and strong, and he is very sick of me telling him that, but outside of a few break-down moments, he really, really was ...


He has a road of recovery ahead of him ... and hopefully will be healthy the rest of this winter, but the thought of him getting sick right now is definitely frightening ...


Added June 1, 2012 ... we saw/consulted with one of the best pulmonologists in the country at National Jewish Health in March ... he told me that my son was much more ill than I was ever led to believe and said that in the hospital where he was treated he probably was one of the five most sick kids the entire year that lived and didn't have cancer ... while in the hospital my son had two VATS procedures ... I would learn this January that they only did seven of those procedures that entire year and that he was the only one that was ventilated at the time of surgery ... he is undergoing many tests to find out if there is something anatomically or genetically "wrong" with him that would make him so susceptible to this kind of illness ...

Home with his kitty, Loki ... they missed each other a ton!