Everyday Miracles

Have you ever witnessed a miracle happen right before your eyes?

This past week, Mary has been in University Hospital, in Newark, NJ, battling RSV.  Things took a down turn last Thursday when Mary's lungs filled up with fluid, but Kate and I, not knowing she had RSV thought we could manage it from home, as we often do when Mary has a cold.  By 10:00pm on Friday, after near constant treatments for over 24 hours, Kate and I decided we could no longer manage it from home and it was time to go to the hospital.  Soon after getting here, and receiving the positive RSV test results, Mary's mucous started to increase even more and get very sticky and THICK!  Thank goodness for the amazing RT's here at UMDNJ, who are so skilled at deep suctioning and using the cough machine.  Mary kind of started to improve, or at least stabilize, so it seemed.  Then, by Tuesday evening, Mary lungs were SO full of THICK, STICKY mucous, we just couldn't maintain her O2 sats above 90, even while on 5 liters of supplemental O2.  I was certain we would have to intubate to get her over the illness.  Then, 7:00 am shift change rolled around, and in walks Heron, a 6'2", barrel chested, Respiratory Therapist from China.  A bit of relief came over me, as Heron has helped Mary several times in the past.  Heron, who happens to be an orthopedic surgeon in his home country, walked in the room, took one look at the sats (90% on 5 liters O2) and said with his Chinese accent, "Ryan, take her mask off and bag her, I do my best suction now, clear out lung..." So, I took the mask off....alarms started to sound...bipap-beep, beep, beep, Pulse Ox-Ding! Ding! Ding!, and Heron began to suction..... her numbers continued to drop...O2 80%, HR 118, and her lips went from pink to grey to pale-white as the numbers continued down, O2 70%, HR 90, finally, I insisted that I cough Mary, because I didn't want to see her heart rate drop any lower.  So I coughed Mary with the catheter still in her nose, and thick mucous came bubbling out of her mouth as her eyes came back to life and color started to come back to her face.  During this whole process, instead of being worried, I had a eerie since of comfort and the utmost faith in Heron and what he was doing.  Soon, as I saw the thick yellow and GREEN mucous start to slowly flow from Mary's lungs into the suction catheter, I felt as if I was watching a MIRACLE take place, right before my eyes.  The mucous flowed and flowed, slowly and steadily filling the entire suction tubing as Mary's numbers steadily rose up into the high 90's.  I absolutely knew that had Heron not cleared her lungs at that moment, we would have to intubate.  Heron returned every 2 hours that day to do the same procedure, each time clearing the mucous that had accumulated in her lungs.  And after each treatment, Mary would be completely wiped out; exhausted, but we all (including Mary) knew, this is what it would take to get us through the next few days and avoid "the tube" as Mary would put it.  That evening and the following day was more of the same, and again we were thankful to have Heron on duty.

Finally, last night Mary (and mom and dad) got a good night's rest and slept 5 hours straight without having to do a treatment. 

To the SMA families in the northeast who are hesitant to come to UMDNJ (Yes, the hospital where Dr. Bach practices) because it is in Newark, or you've heard horror stories (we did), or whatever.  I urge you to keep an open mind.  We've found the care here to be amazing.  In our opinion, nobody knows how to treat SMA (especially Type 1) patients better than this hospital.  Sure, it is in a bad part of town, and there aren't "comfy beds" or flat screen TVs on the wall, but the CARE here is FIRST RATE, and isn't that what you come to a hospital for anyway?? 

Lastly, please say a prayer for all of the sick SMA kiddos out there.  There are way too many not feeling well right now.  Also, say a prayer for the SMA Queen herself, MJ and she prepares for surgery tomorrow.

Mary Back in the Hospital

Hello! Wanted to get a quick update to everyone who reads Mary's Blog regularly.... unfortunately, Mary is back in the hospital again, after a visit in October with Influenza B (yes, we all had flu shots over 5 weeks before that).  This time, she has RSV(Respiratory syncytial virus)!!!
Mary had been battling what we thought was a little cold since last Tuesday, and we were managing it well from home, then on Thursday, she appeared to be over it, wanting to spend the entire afternoon off her biPap, no fever, normal O2 sats and HR.  Then, Thursday night, we awoke to alarms going off, Mary was de-satting, and was filled up with "junk" again in her lungs.  We continued to battle from home, but we quickly realized that this had to potential to exceed our "at home" threshold.  After talking with several of Mary's doctors throughout the day on Friday we made the decision to keep Mary at home for at least another night.  Well, shortly after we finished a thorough treatment, we put Mary in bed for the night.  I decided to stay in Mary's room and study, so that I could watch her numbers and suction her as needed.  No more than 15 minutes after going to bed, she started to desat into the low 90's and essentially nothing we did would bring her numbers up, so we decided to take her to the local ER.  Shortly* thereafter we were on the helicopter, once again, enroute to Newark.

Needless to say, Mary had a very rough night, she was exhausted, dehydrated, and generally feeling bad, she remained on supplemental O2 throughout the night.  At a few points we were fearful of yet another intubation.  But thankfully we were able to clear her lungs and avoid that (knock on wood). 
Mary had a much better day today, but as many know with RSV and SMA, we are not out of the woods yet.

Please continue to pray for Mary, and for Kate and I, and Mary's wonderful doctors, nurses, and therapists, to have the strength and direction to fight this illness.

Also, a special thanks goes to our nanny, Shelby for getting all of Mary's equipment packed up while we were at the ER and helping out with Jackson until my mom, Julie could fly in tonight to help out.