Unexpected return at Strong

And here we are again back on the blog.

First I would like to thank everyone for their support once again we received lots of messages very quickly.

Honestly I would have preferred not having to start but fate decided otherwise. We have a new test that will make us even stronger. We were accustomed to our little routine, and here now we must cope with the reality of the disease that is not always easy to deal with.

Let’s start with a brief summary of Florian's situation in recent months. As you all know, it was back to college, in August. He is in a house with several people who are super friendly. He continued his engineering course in physics.  Of course since he did not have enough to do, he worked in an Irish pub as "busser". For the clueless like me, the "busser" clears tables, takes care of the tables, and ensures that the glasses are filled with water .... In short not too hard work. He did tell me that no he was not hired because of his red hair.

Regarding his chemo, he had it once a month, with mostly lumbar punctures. In addition he has to take daily pills of chemo. Until a month ago, everything was fine. At this time, he began to complain of stomach pain, nausea, and vomiting.

Last week, he had a little temperature and cough, typical of a regular cold. He took drugs for the usual cold and by Friday it was already better. In addition to his doctor told him to stop his chemo pills in order to help curing his digestive problems. It worked pretty well and he was feeling much better, didn’t have any stomach problems either. He studied and took all his exams in the meantime. He had exams the whole week and the last was pretty complicated was on Monday.

Monday night he started having a fever again. Tuesday morning his fever was up to, 39C (102F), he called me at 7h00 in the morning, which was a day off for us (November 11th). Because he already had to go to Srong for a chemo anyway that day, his doctor told him to come anyway to see what he had and he would not have chemo. All day I followed his updates that were not great, he was lying in his bed. But as always, he answer s answers don't worry everything will be fine. The evening was a 40C (104F), and we decided to go to Strong emergencies.

So here we are in the US and the distances between the cities of a region are not the same as Belgium. Therefore 10:00 p.m. I left  towards Buffalo: 2h30 drive. I arrived in record time even though Florian had called me midnight to see where I was, the temperature was still rising. Quickly loaded Florian in the car and half past midnight departure for Rochester, 1 hour trip now. His friends took care of him amazingly well and had prepared his bag with everything he needed to fight the fever. Kudos to all his roommates.

During the trip, I had to turn on the air conditioning in the car all the way per Florian's request to keep him cool. As a reminder to all, we are upstate NY and it has started to get a bit chilly, we had snow yesterday and then today on Tuesday during the day it was 19C (66F).

Anyway I had my nose frozen but we would we not do for our kids. We finally arrived to Rochester at 1h30 am. Like all emergencies, it's the crazy show. Even more with Ebola it's a real interogation to be sure that we haven't travelled abroad.

At this point, Florian couldn't take it anymore, he was exhausted. Fairly quickly we were able to check in: all we had to say was fever (which they took seriously since he did have a 40C (104F) accompanied by leukemia, so a neutropenic fever, we were directed very quickly to the "critical care unit" were we moved him into a separated "room". At this point it's 2:30am, they ran all the possible tests, radio, blood test to determine what it was: atypical pneumonia, distributed in all of the lungs rather than in a localized portion of the lung. They imediaticely gave him antibiotics, painkillers, and paracetamol to lower fever. Florian was exhausted. He was feling pain everywhere: muscles, bones, head. He had pains at his lumbar puncture in his spine.

For my part, I was sitting on my little plastic chair. I have learned that it was possible to sneak a 10 minutes nap without falling down on the side. That day, I had finished the floor and baseboards in a room for the kids, painted the walls, cupboards plus all the usual chores of good mother. Anyway, I had been busy and I got up early. Going to sleep earlier that day would have been appreciated.

Finally around 6:00 am, they tell us they are waiting on a bed to become available in the cancer center where we always go. At 8:00 am, he was transferred to a chamber of transition while waiting until the other one becomes available. His fever was still high and he was shaking uncontrollably.

Wednesday morning, he was finally transferred to a regular room of the cancer center. They took care of him and put all the necessary tests and devices. Florian began having difficulty breathing as if he had asthma. Even talking became difficult. He had to stop at every word. When he coughed, it was like he was choking. They had to give him an oxygen mask but as the day passed by, they had to increase the oxygen concentration. His heart rate was pretty high too. In short, it was as if he had his 200m butterfly swim race constantly. Throughout the day, several doctors and their teams came to see him: haematologist, pulmologue, intensive care, infectious disease,.... They ended up giving him a CAT scan. There was a physician (Florian did not really like him) who said he did not expect at all was that they saw the CAT scan. It was much worse than on the radio. Not very well thought out way of announcing it!!! In the end, it is only one of twenty doctors. Florian was very stressed on Wednesday due to his breathing problems, this announcement did not really help at all. He had multiple sensors to measure his oxygen and heart rate. Whenever he saw that the numbers were not too good or the alarm sounded, he would stress even more meaning he breathing did not improve.

Finally in the evening around 22:00, they decided to transfer him to intensive care and give him a tracheal tube to connect to a respirator. His oxygen level was not high enough and his organs risked not receiving enough oxygen. They speak of acute respiratory distress syndrome (ARDS). It is the body's reaction to an infection. His lungs are filled with inflammation and the exchange of oxygen with the blood wasn’t occurring as well as it should have. Sorry for the somewhat simplistic explanation, medical professional can feel free to points out what is inaccurate.

Around midnight, three doctors pushed his bed throughout the hospital (you can walk for kilometers) to go from the cancer center to the ICU. Usually it is the responsibility of "transportation" service but in this case it was the head of the intensive care unit that decided to escort him.

They took him to his room and got everything ready for intubation. They explained very well to Florian what they would do. Meanwhile we had to leave the room and go wait in a waiting room. Kirsten, Florian’s girlfriend was with me.

After two hours, they came to get us and everything went properly.

He was on a ventilator, it was obviously a shock to see him this way.

Next they wanted to establish a needle in his artery at the wrist to be able to accurately measure the oxygen level in his blood. Again back in the waiting room for 2 hours. It lasted quite a long time and in addition they failed to insert the catheter into the arteries. They tried in both arms. Apparently arteries can contract and make the insertion of the needle very difficult. Since the beginning of Florian’s disease it has been a real challenge to get a line to his veins. Usually you have to ask several people to get there.

At that time it was about 6:30 am Thursday. After my second sleepless night, I quickly went to take a shower and rest for an hour in order to come back to see the doctors around 9:00 am.

So Thursday morning we met the team of pulmonary critical care specialist. All highly skilled people as always, they told us that the state of Florian was serious and that he preferred to put in a coma so he doesn’t waste too much energy by coughing and moving. In fact, he did cough a lot and we could see that the tubes bothered him (as expected). In addition to an anesthetic, they gave him a paralytic drug in order to make sure he didn’t move. This way they can completely control his breathing and Florian is not going against the respirator. They always try to get him in a deep enough sleep just enough so that it does not realize that he is paralyzed because it can be really scary not being able to move if he was conscious. On the other hand they do not want to him to be in too deep of a since it can cause issues in the long term, yet another parameter to control.

After all the explanations, they decided to place the catheter in his artery’s wrist, which they succeeded that day. They also have up another catheter into his carotid artery to view 3 different lines to inject drugs. He already had his Mediport but it has only 2 inputs. I counted them and he was hooked up to 15 tubes!!! There are also electrical wires with sensors for measuring important vital data. They also inserted a feeding tube through his nose. This was once again a whole new operation that lasted all day. The tube was moving in circles in his stomach and was often not in the right place. They retried three times overall. Everytime they also needed a radio scan in order to see where the tube was as they progressed and check that it took the right path.

That's how we met a Hungarian who handled the radio, he had to take at least a ten shots with his mobile device. The guy wanted to talk about the good old Europe that he was missing so much. In short it was good laugh by sharing similar stories of integration of American culture: respect the swimming areas and not go beyond 1 meter of the buoys, or not to wear his Speedo and pose on beach like an Adonis.

In short we had a good laugh.

At 23:30 I went to get Raphael at the Rochester airport. He came directly from Raleigh and will stay for 5 days for now.

That night was pretty quiet compared to the previous two, I finally got to sleep a few hours on the sofa bed is in the room. According to Raphael who was sleeping in a chair Lazy boy style, it seems that I snore and I heard nothing when the helicopter landed just a couple of feet about Florian’s room.

Friday they decreased some drugs that promoted the exchange of oxygen with the blood in the lungs. They also took a bronchoscopy to get fluid in her lungs and analyze them to better understand the type of infection. At the same time they could see what his lungs his lungs looked like, although it doesn’t mean much since it’s inside the lungs and they aren’t able to see much but it didn’t seem too bad. Since they have to do cultures to identify the bacteria or fungus, it may take several days before we have the results but we have been receiving results as they come.

After the Bronchoscopy they decreased the paralyzing drugs in order to let him breath on his own again. He began to be a little more aware and able to move more and more, everything being relative.

During the night he tried to sit up, he had to remember to be sure he does not pull his tube.

Friday we also met a cleaner who came from Burundi and was very happy to speak French. Needless to say he kept coming and cleaning the room very thoroughly.

On Friday evening, Jacques and Raphael stayed with him because I quickly went to Marie-Laure’ sleep over with her tennis team who were already at home. Quite interesting to see the sessions nail polish, salon, karaoke,.... In short they slept very little and the whole basement was a large mattress.

All this time Kirsten had remained at Strong with us for support.

Saturday they mainly stabilized different parameters. They replaced his sedative with one that causes less hallucinations. In the evening he still continued to awaken but only half conscious. It's a bit difficult to know what he understands what he remembered, but we try to communicate as much as possible even if it's just to reassure him and tell him that you are there. Often we ask a question, first you have to be on the set with a yes or no answer but sometimes he replies with a shrug.

Sunday, the doctors came and informed us everything is still going well. I had the confirmation that the later they come around the better the sign. They start with the newcomers, then the most serious and then other cases. They came around noon, so it's a good sign. His cells are a bit low but that did not worry too much. Now his intestines must recover and kick-start back up and everything is good. As I said from the beginning to Florian and Raphael, it’s like plumbing: liquid is injected to increase the pressure, products are injected to reduce the size of the vessels to increase the pressure, the same for the volume of air, and I’ll pass on the details of his stomach contents.

Another interesting fact I just learned today: expanded, the size of the lungs is the same as the size of a basketball court.

I learned a lot about the blood during his treatment for leukemia and now I perfecting my training with regards to lungs and infections. In short I learn more and more every day.

So in summary, after this long sandwich, everything is following its course, it is on the right slope but it will take time, we must remain patient. Baby step as they say here.