04-03-12 – END OF DAY 6 – CPMC/CHONY PICU – 29-25-6

Apr3

Faith is again on a wean of O2 & NO along with other medications. She was removed from the Heparin drip and started on her long-term anti-coagulant (Lovenox). It’s a twice daily injection but she did well on her first one. We will give the injection through a small port so she doesn’t have to get stuck every day.
Her ultrasound of her legs yesterday showed that the clots are “dissolving” and her body is forming new paths around the clots. Both are good signs. She is also now allowed and encouraged to get out of bed.

We expect her to stay in the ICU through early next week. She will not be coming directly home after the ICU. We along with her doctors have decided that she needs to go to a rehabilitation hospital. She has been “sick” for over 5 weeks now (she started with a “virus” on 2/28). She has obvious weakness, has regressed a bit on speech and has some “drug” issues to get over. We always said after the experience we had with Jonathan after his series of surgeries and hospitalizations that if we had to do it again we would go the rehab route. The hospital will most likely be Children’s Specialized Hospital in New Brunswick, NJ.

How are we going to pull this off? Well it’s 40 minutes from Sue’s work and 1:35 from home. Sue will stay with Faith after work and overnight, I will come down in the morning and stay with her during the day. Sue must return back to work on Tuesday the 10th (No more sick/personal days left). We’ve considered FMLA but don’t think we can continue to take the financial hit. We will make it through as we always have.

Glad things are quiet now and hope they keep that way through the weekend with no more surprises.

I’m starting a website www.faithsfolly.com so I can stop doing updates to various places, not everyone has or wants Facebook access. I’m in the process of backfilling the new site now and will let you know when it is ready. It might be another month before Faith finally gets home so I want all her friends and family to have access to updates and some good news.

04-01-12 – END OF DAY 4 – CPMC/CHONY PICU – 27-23-4

Apr2

Quick update and recap for those on the e-mail list:

  • Faith is stable, breathing on her own with just some Oxygen(O) and Nitric Oxide(NO). They have started to wean her off the NO. NO is used as a vasodilator to open the blood vessels of her lungs.

  • She is awake most of the time on very light sedation to keep her comfortable and in the bed and to also make sure she keeps her IV’s in along with the oxygen on.

  • She has restarted the Methadone/Ativan wean for the narcotics she was on from her last stay in the ICU.

  • The team is meeting again on Monday 04-02-12. They are going to order another Ultrasound of her leg to see what the clot looks like there and if it has changed any. Based on that the FINAL decision on surgery/conservative approach will be selected.

  • Presuming everything stays status quo the plan will be to switch over to the new anti-clotting drug Lovenox over the next several days in preparation for going home

  • We will be working with Hematology to determine if this was a pre-existing bleeding/clotting disorder or not and therefore determine future treatment.

This entry was posted on April 2, 2012, in Status.

03-31-12 – END OF DAY 3 – CPMC/CHONY PICU – 26-22-3

Apr1

The Good

• Faith is breathing on her own. She is breathing a mixture of O2 and NO which is therapeutic and helps keep the blood vessels of the lungs open and flowing.
• Starting about 7PM on Friday her “distressed” breathing pattern changed to a more normal one, less labor and a slower rate.
• Sedation has been cut quite a bit:
o Reason 1: One side effect is a slower/irregular heart rate which she started to have on Friday/Saturday night. Resolved after reduction in sedation.
o Reason 2: It’s for her comfort and compliance, as long as she is comfortable and is willing to mostly cooperate with what needs to be done we can use less.
o Cute story. Her nurse and I were doing something Friday night with her and she was struggling and got her nasal cannula out of her nose (Still taped to cheeks). I saw her hand headed for it ready to rip it from her face, stopped her and told her no. A few minutes later same circumstance, I wasn’t quick enough to get the hand. To both of our surprise she used her little fingers to push the prongs of the cannula back into her nose. I guess it helps and she gets it.
• NO vascular surgery. There is currently no benefit that outweighs the risk of either thombectomy or putting in a vascular filter.

The Bad

• We are suspicious that she had a bleeding/clotting disorder before surgery and before the central line was ever placed. Parent intuition. The ICU attending shares our suspicion. While not pertinent to current care it will affect future care.
• Now that surgery isn’t an option they will be transitioning from Heparin to a longer lasting more stable form called Low Mollecular Weight Heparin (http://en.wikipedia.org/wiki/Low_molecular_weight_heparin) specifically Lovenox (http://www.drugs.com/lovenox.html) . This is going to mean daily injections (2 a day) for the next 3-6 months.

The Ugly
• NONE — Lets keep this empty!

Treatment:

• Sedation much lower than before, more waking hours, eating by mouth and keeping active but in bed.
• Changeover from Heparin to Lovenox.
• O2 with NO
• Continue Wean from narcotics withdrawal from prior encounter at ICU

03-29-12 – END OF DAY 1 – CPMC/CHONY PICU

Mar29
The Good

• No intubation or ventilation today, calmer minds prevailed and kept Faith on just O2 via nasal cannula
• They have started Nitric Oxide (NO) therapy. It’s a gas that acts as a vasodilator opening up the small blood vessels of the lungs.
• Cardiology was by and did another echocardiogram and compared to the study done two weeks ago. No changes, no signs of pulmonary hypertension or any obvious abnormalities. They were concerned that she might be going into heart failure if the clots in the pulmonary arteries were causing a significant increase in pressure.
• Faith is resting nicely on a new sedative that is giving her a much more controlled experience than last time without the rollercoaster ride and frequent breakthrough.
• We are a bit more positive on a good prognosis after speaking with a doctor we met recently and formed a good relationship with. He also happens to be the directory of the PICU and has a 10yr old son with Down’s Syndrome. The other docs in the PICU also took notice when he visited Sue& Faith this morning which helps keep fires lit under the right people.

The Bad

• The folks in vascular surgery may wish to intervene by placing a vena cava filter (http://www.radiologyinfo.org/en/info.cfm?pg=venacavafilter). The idea is to prevent any further clot from her leg breaking off and landing up in lung or creating a severe blockage to the lung or elsewhere.
• We are still not aware of the root cause of all the clotting, was it just from the central line site or was there some pulmonary embolisms forming earlier that contributed to her original respiratory event? Could be related to Trisomy 21 (Down’s Syndrome)
• Respiratory rate still high and difficult to keep pSO2 (peripheral saturated O2 levels) levels adequate, may eventually require intubation & ventilation.
• Pulmonary still believes there is an upper airway obstruction causing interference with her breathing. The exact anatomy has not been identified yet.

The Ugly

• She might be experience pain from two sources
o The DVT (Deep vein thrombosis http://www.mayoclinic.com/health/deep-vein-thrombosis/DS01005/METHOD=print ) in her left leg is usually painful
o Pulmonary Embolisms (http://www.mayoclinic.com/health/pulmonary-embolism/DS00429/METHOD=print) are usual detected when people report chest pains.
• We don’t really have a means of detecting this and she cannot accurately report to us
• Even if they do detect pain, they are very reluctant to introduce narcotic pain killers as they will suppress breathing and her respiratory system. The current sedation should offer some analgesia.

Treatment:

• Sedation
• Heparin Drip to keep clots from forming, thin blood & help dissolve smaller clots.
• O2 & NO
• Methadone/Ativan/Lasix/Steroids

Things are changing hour to hour. If there is a significant event I will update FB otherwise I’m going to keep to a single update each day.

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

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.