Sweet home...

We finally got home Sunday afternoon. Doctors left it up to us if we wanted to stay or go. Jagger was doing better and with all the coughing around us, we decided to go home and hopefully work on his recovery from there. Main thing really is to keep him hydrated and coughing. After laying in the hospital bed for yet another four days, his secretions pooled again in his airway so we just need to make sure he coughs them up and we standby with the suction.

Weekend is the worst time to be in the hospital. Nothing is really happening, the cafeteria has barely any food and mostly leftovers from the week and no hot water. It is as if all patients go home on Friday and return on Monday. Every time we are here over the weekend we wonder about this. I really shouldn't be complaining after the hospital and operating rooms I have seen in Africa with dirt floors, insect crawling everywhere, broken cots or thin foam mattresses on the floor. It makes me cringe every time I see it.

Jaggy is still super exhausted. After partying till 4 am the first two nights, he has been sleeping for two days straight. Occasionally he wakes up, looks at us with his big brown eyes, is content with what he sees and goes back to sleep. We of course take the opportunity to give him sandwich kisses which he seems to enjoy.

I am not surprised he is so exhausted. We all are. The last two weeks have been kind of rough. If I had the opportunity to sleep for two days, I certainly would.

Caption for the pic: Jaggy on the way back home. He never sleeps in his car seat!

The super bug

It is high time we get out of here. The longer we stay the more chance we all have if getting a hospital acquired infection. I always brushed this warning aside when the docs in the ICU told us we need to get out of here as soon as possible before he gets another infection.

Well just the other day I was reading about this superbug that killed several patients at the NIH hospital in DC (which I believe is also the site of the next Phase of the Epi trial). This bacteria was so persistent it survived vigorous isolation procedures, disinfection with bleach and even some of the plumbing was changed. It continued to spread killing 6 and infecting many others.

Reinventing the wheel and the dangers of technology

Seems like every day we reinvent the wheel because apparently it wasn't round enough the first time.

Everyday with shift change and a new nurse they somehow end up screwing up his schedule. Not sure if it's incompetency or the fact they rely too much on technology/ the computer. We do see a huge change in service compared to the ICU. During shift change they are supposed to give report to the next nurse but somehow I don't think this is happening here. It works well in the ICU. Not so well on the regular floor. We had everything from a nurse literally rushing into our room throwing his meds on the bed and leaving (no, not because there was emergency somewhere else) to nurses coming in wanting to give Valium or methadone again when he just got his last dose 1.5 hours ago. (This would never happen in the ICU. We had to beg the docs before to give Valium at 3.5 hours instead of the minimum 4 hour interval). Apparently the computer said to give it "now". Well this "now" was two days ago when we had to give an extra dose and ended up moving his 6 am dose to 4 am and hence the next one to 8. I know it can get confusing. At home we usually write everything down when it differs from routine because we end up forgetting what happened when, with all the other million things happening at the same time. Relying solely on the computer and no longer practicing independent thinking can be a very dangerous thing, especially in the healthcare setting.

I double and triple check everything at home (I had to throw Meds out before because I couldn't remember if I grabbed the right bottle and checked the label, because the bottles all look the same and the meds look the same). I expect the same at the hospital especially when they have a nurse AND a tech assigned to each patient. Honestly, every time we are on the regular floor we wonder If any studies have been done to show that having nurses AND techs actually improves patient care as we have yet to experience the benefit. To us it is more of an annoyance because it is another person constantly coming in and out of the room disturbing our sleeping angel.

This is why it is such a hard decision to come to the hospital, we can do so much at home with all our equipments, and while we always try to get admitted to the ICU if we must be admitted, this time since his breathing was OK (and it is usually why we come to ER), we had no choice but to agree to a regular floor admission.
And we truly saw the limitation of the "regular floor" for Jagger, simply put, he is way too complex for the regular floor!

Sleepless in...

We are still at the hospital. Everything was ok until about 4 pm. Jagger got a breathing treatment and then was super excited and awake. This turned to major agitation and whining around midnight and lasted till 4 am despite Iv morphine, motrin and extra Valium.
He was arching like crazy and his muscles were super tense. We thought maybe he is hungry since he has only gotten Iv fluid since wednesday afternoon so started some pedialite. I actually thought his magnesium/potassium levels may be low due to the fluid and nutrient loss but those where apparently normal. But I am still wondering if he needs extra of that since he has so severe cramps. His Iv nutrition which had been ordered for the night was never made so we had no choice but to try the g-tube feeds. He eventually fell asleep a little after 4 am. Who knows maybe he was hungry or the Valium did the trick.

Needless to say we are all exhausted. Still haven't caught up on sleep from last hospital admission.

Sebastien and I have been eating only one meal a day. We are too tired to eat and usually sleep through breakfast and lunch. The little energy we have left, we spend double checking everything the nurses and doctors do. Usually we get a little break from caring for Jagger and doing all his Meds while we are at the hospital but with all the mistakes so far, we really cannot relax one second.

Let's hope tonight is better although the way things are going right now it may be another long night.

15 diapers and counting

I have changed more poopy diapers in one day than I normally would in one month.

Jagger is suffering from severe diarrhea and some vomiting which I think is due to the antibiotics he is getting to treat his pneumonia.
The diarrhea got so bad we had to take him to the hospital on Wednesday afternoon. He only produced urine once a day at this point and his stomach was extremely extended and he was swimming in poop every hour or so ( he did manage to poop all over myself, the nanny and the X-ray table).

As usual we got seen pretty quickly however because his labs all looked normal and according to the blood work not dehydrated yet, they didn't want to admit us because the hospital was full and he was not critical enough. (Omg, the ignorance we have to deal with sometimes). On the other hand they had no idea what to do with his diarrhea and I refused to go home like this. He was not producing urine, I was barely able to feed him and he continued to have major diarrhea. He needed to be on Iv to replenish his fluids. They finally admitted us around midnight and good thing we stayed because it took him about 1 day on continuous Iv to get back to baseline. I also stopped at least one of the two antibiotics which I think was the culprit and things seem to be improving (he had been on antibiotics already for 7.5 days so I am hoping all the bacteria are dead by now). Of course they took stool cultures and checked for rotavirus and clostridium difficile but all came back negative. Thankfully!!

We will likely be here another day or two. Still super exhausted from last weeks hospital stay. Sebastien once again had to come straight to the hospital from his business trip.

This time we were admitted to the general floor. I didn't argue because I knew Sebastien was going to be with us overnight. They are completely overwhelmed with his medicine schedule and 30 some doses he gets per day. Despite being here last week the computer system still had everything wrong and we always end up repeating ourselves fifty times. And even with our medicine schedule nicely typed up and copied for them they still managed to screw up a few things and give the wrong doses.

This is why we carefully consider benefits versus risk every time before we get in our car and drive to the hospital. I have started calling it the death trap because each time we actually get to leave the hospital with him alive is a miracle in itself.

Good morning sunshine

10 loads and counting

It is 2 am and I am still doing laundry. I have done over 10 loads in the last two days. Probably close to 15. It just never seems to end. Between our laundry, the sheets full of pee and/or vomit and Jagger's clothes which have to be changed several times a day, doing laundry is a never ending task. Of course since Jaggy is being held and cuddled 24/7 we usually end up with a fair share of his bodily fluids all over us. We are pretty used to this by now and are pretty much prepared for anything except for the latest situation. Antibiotics are causing jagger to have major diarrhea. However he doesn't poop on his own so yesterday we decided to give glycerine and despite several minutes of trying we used the vest to speed things along. Oh boy. What a mess. There was poop everywhere. Spilling out of the diaper. Both Sebastien and I stood there for a minute trying to figure out what to do. I know this is disgusting but it is our life. So Jaggy was literally swimming in poop. Of course I didn't think of using the disposal pads I took from the hospital so instead used every towel I could get my hands on. Big mistake because I was then stuck cleaning all the mess until 2 am Sunday morning. We somehow managed to wipe him clean but not without him protesting the entire time.
Anyway so the entire time cleaning up and doing the mountain of laundry slightly resembling mount Kilimanjaro at this point, I kept thinking of how lucky we are living in a place where we have running water, indoor plumbing and a washer and dryer in our house. During my travels to Africa, I have seen and met many women walking hours to the nearest river to wash their families clothes or stand in line forever at the local well to fill some jugs of water and then skillfully balancing them on their head while walking home. ( side note: I have also tried balancing/ carrying stuff on my head and have to say, it is harder than it looks but very practical and much less painful on your back. Maybe when Jaggy gets to heavy we can try that. Lol)
So the message of this post really can be summarized with this song: "Always look on the bright side of life....."