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03-29-12 – – CPMC/CHONY PICU

Mar29
Brought Faith to Pediatrician who said she needed to go to ER was concerned about swelling of left leg and her labored breathing. Really no choice of ER’s except back to CHONY.

When we arrived at CHONY Faith was displaying significant signs of Respiratory distress and were fast tracked right into a room and were blessed with some very good Doctors & Nurses.

So far she has had an EKG, Ultrasounds of both legs, CT scan of chest, x-rays of abdomen, chest & neck.

Diagnosis right now is Deep Vein Thrombosis in the left leg where her central line was from the previous PICU stay. More significantly and concerning is significant bilateral pulmonary emboli which means partial clots in both main branches of her pulmonary artery and some further down as it gets smaller.

In the time it took me to drive home to wake and tell the kids what was going on they have decided to intubate and ventilate again. Her heart and lungs are working very hard right now to do their job, by using the ventilator and sedation both will be less stressed. They have also started a Heprin drip to prevent any further clots from forming. Vascular surgery has been consulted and believes at this time that more conservative measures are prudent vs. surgery (thrombectomy) to remove the clots surgically.

Obviously the situation is very serious but we remain positive about the potential outcomes, the next several days will hopefully be the most enlightening as to where the path leads us next.

This entry was posted on March 29, 2012, in Status.

03-24-12 – FINAL HOSPITAL UPDATE – CPMC/CHONY PICU – Total Days since ER 18

Mar24
Na na na na, na na na na, hey hey hey, Faith is home!

They never made it to a quiet room outside the ICU last night but it was still a quiet enough night. Not that Faith slept much, too interested in watching movies on her new iPad.

She is home though, on about a half dozen medications which she seems to be taking every 3 hours but they taste much better at home. She is managing very well without any breathing support, no CPAP (even when sleeping) and able to maintain her O2 levels with just good old air.

She is very weak, going to give Mom & Dad a good workout carrying her around for the next few days and up and down stairs. Her personality is definitely shining through all the rough edges of her physical appearance. Her narcotics wean goes into the second week of April, can’t wait till she clears of all that, she will feel so much better.

Lots of good sleep for all tonight (I hope). Thanks to all. I will have a more formal thank you when I can think straight and not forget to mention all who have been so supportive and helpful in these past few weeks.

This entry was posted on March 24, 2012, in Status.

03-22-12 – Daily UPDATE – CPMC/CHONY PICY – Week 2 (Day 14)

Mar22

I’m going to do a brief recap for some that only get weekly updates (e-mail list) please ignore the verbosity.

• Faith was removed from Ventilator on 3/19/12 Day 11. She transitioned from BiPAP to CPAP to Nasal O2 to now periods of breathing room air when awake and out of bed.

• She has been sitting in a chair, using the potty, walking a bit and generally liking sitting better than lying in bed.

• She started to take some clear fluids today (water & juice) So it’s safe to say that both input and output are mostly functional again.

• They removed the NG tube (stomach sucker) today and her IV in her arm failed so down to just one tube ND (feeding tube) and some wires.

There are still some significant issues to overcome before coming home:

1. She still has a very rapid and shallow breathing pattern at times (as high as 70-80 bpm) and looks distressed.

2. We are not sure how well the T&A surgery helped with her Obstructive Sleep Apnea.

3. Not sure what her O2 support requirements are for Day & Night

4. She is coming off of some very significant doses of opioid drugs that were needed to keep her sedated when on the ventilator. They have already had to back down off of the first day wean reduction because she is showing signs of withdrawal (tremor, cold sweats, nausea, rapid breathing, yawning, excess saliva production, eyes dilated to almost full & 1,000 yard stare at times)

5. She may be suffering from some ICU psychosis (http://www.medicinenet.com/script/main/art.asp?articlekey=7775&pf=3&page=1)

No talk of discharge yet, our gut on this one is not before the weekend.

This entry was posted on March 22, 2012, in Status.

03-20-12 – Daily UPDATE – CPMC/CHONY PICU – Day 13

Mar20

Another good day.

Highlights:
• Faith was moved from BiPap to CPAP. She should be on there for another 24 hours until they trial her off of it.
• Food by mouth starting Wednesday if she is ok while off of CPAP. That means she would be able to get rid of the ND and NG tubes in her nose 🙂
• Today her arterial line and central line were removed 🙂 a new IV had to be started 🙁 so they had IV access for medications, 2 lines out 1 line in.
• Talk of possible discharge from the ICU rather than having to go to the floor!! All depends on her Oxygen requirements…maybe by end of week 🙂
• Still going to be a long recovery at home. She needs to continue on her narcotics wean (Ativan & Methadone) to prevent withdrawal symptoms. Weakness, possible speech/swallow issues from ET tube
• Pulmonary recommends we use CPAP on her when sleeping for as many hours as she will tolerate (going to need lots of prayers on this one, tolerant isn’t in her vocabulary)

Picture after “bath” and shampoo and letting Mom do her hair

This entry was posted on March 20, 2012, in Status.

03-19-12 – Evening UPDATE – CPMC/CHONY PICU – Day 12

Mar19

The picture says it all; she wants OUT and has been through hell.

Faith went into the OR around 10AM and was out by 10:45. Everything went very smoothly. They ended up using a sedation that kept her just under a bit while not interfering with her breathing. She is staying on that for the next 24 hours. The ENTs said that everything looked good when they scoped her, but want to keep her on steroids for a few more days to keep swelling down etc.

She is currently on BiPap (assists with both inhaling and exhaling) and will move over to CPAP (inhalation assistance only) over the next day or so. Her progress on getting out of the hospital will mostly be based on how much Oxygen assistance she needs. She is going to have a longer recovery at home. She was intubated and on a ventilator for 11 days (Jon still has the family record of 21 days). We know she is going to be weak and are weary about any feeding/speech issues it may cause. Jon needed so much therapy afterwards but he was only 10 months old when it all happened so wasn’t very developed.

Time will tell, we take it day to day. We are prepared for at least another week in the hospital, 2-3 more days in the ICU and then a regular floor for the duration (fingers crossed).

If anyone knows of a place to rent an iPad (Wifi) (That doesn’t want the full retail price as a deposit) let me know. She is going to be a trick to keep entertained. Currently she is watching her Dora/Diego/Spongebob Netflix videos on her iPod Touch which isn’t close to ideal. I also want her to be able to do some more meaningful tasks as she can.

I’ll update once a day from now on with some progress pictures

This entry was posted on March 19, 2012, in Status.