steps forward, and steps back

Ginger writes:

I was riveted by this story on NPR today! This story is so amazing and exciting for what it could mean for many many people!

In less exciting news, Henry and Ian tested positive for RSV today. If anyone feels led, we would appreciate prayers that they would get better and avoid the scary complications.

On the bright side, they didn’t get it until now (as opposed to getting it as infants), but because they are ex-preemies and Ian is post BMT and post ECMO for respiratory failure, they are at more of a risk for complications.

making gingerbread cookies with the big brother

Ian eats his gingerbread man.

 

Henry thoughtfully nibbles his.

thank you as always for everything you all have done to encourage us…i know this is discouraging news for the Adams. we’re still hoping and praying for a peaceful Christmas! ~cnp

Back to “Normal”

The family is adjusting to life back home…with a sick baby. Sweet Ian is still weaning off of his drugs, has multiple dosages of different meds a day, and is incredibly weak and shaky. His little body is bruised from needles and the ECMO, and he is on steroids, making him constantly hungry, and causing his face to be  swollen, and puffy. Hasn’t been easy on mom and dad either.

Know what’s amazing? He manages to smile. He reaches out to touch your face, and he tries, despite his discomfort, to grin. It is the most beautiful smile i have ever seen. I love it, too, because we can see all his new teeth!

In spite of all this, he remains the sweetest, most darling little boy. Ginger told me today that nurses would come into his room, even if he wasn’t in their charge, just to see him. He was so beloved at the hospital!

you can see the ECMO bruising below his ear

This PICC line is in Ian’s arm indefinitely, at least while he’s still receiving Chemo.

PICC line description HERE

Above all, we are so grateful he is home!

Ian is having another Chemo treatment tomorrow morning. Please pray for that.

Another update tomorrow…~~cnp

January 16th Family Visit: Part 1

This is where they had Ian hooked up to the ECMO, the machine that ultimately saved his life! The hole has been stitched up, and is healing…but left behind a lot of bruising on his little neck.

Sometimes the tangle of monitoring wires and feeding and chemo tubes can get a little messy…especially with baby legs kicking them around.

Grammie Wren got to see her grand baby this weekend, she didn’t want to leave his side!

Every few hours Ian gets his lungs suctioned and undergoes respiratory therapy. His oxygen is generally looking very good! The treatments are just to keep his lungs clear and make sure he takes good, deep breaths.

January 12th Update from Ginger

“Tonight, Dr. G, the doctor who was here with us on the night Ian crashed and was placed on ECMO, stopped by our room on evening rounds. That night as he explained what ECMO was and why he thought it was necessary, he had told me “I can’t promise you that he won’t die.” Of course I know that no one can make that promise, but it really spoke of what a bad situation Ian was in at that point.

Tonight, Dr. G was beaming (and so was I) saying how great Ian is looking. He told me that “this is what makes my job so worthwhile”. He didn’t take any credit but told me he was so glad it turned out this way. Thank God for great doctors who keep their focus and composure when us parents lose it and great nurses who care for the patient and then entire family at the same time. Thank God for all of our friends and family who have been so good to us and most of all, thank God for Ian getting better.”

January 8th Update from Ginger

Ginger:

“Everything still okay; however, since coming off of the ECMO, Ian has had trouble maintaining his temperature and has had the low heartrate. Although his heart function has continued to improve, his heartrate stays low and that and the body temperature don’t really make any sense to doctors or “fit” with other things going on.
It cannot be attributed to any of the drugs that he is on and they have pretty much checked everything they can at this point. The doctors from the beginning could not really understand why he had respiratory failure, since his lungs were sick, but never looked bad enough in the chest x-rays to have needed life support like ECMO for the lungs.

I asked if the weird bloodwork -specifically the low hemoglobin (which is the red bloodcells that transport oxygen) could have explained his trouble saturating, but doctors have since given him many blood transfusions of hemoglobin and bloodwork has had normal counts for a while now. Yet he still needs a lot of support from the ventilator and didn’t tolerate much weaning of the oxygen settings yesterday.

Doctors here are very honest in that they may not have any answers for this, since they have checked on almost every possible explanation. They plan today to check his adrenal function, since one number on his thyroid function was slightly low today, when it was previously normal. They said this often can happen with very sick kids, which is what Ian is, but would investigate it anyway just to see if it yields anything. At this point the Endocrinologist is the only specialist who hasn’t been consulted on Ian’s case.

Please pray for either a mysterious improvement or answers (less likely) for the doctors, so they can help him improve. The important thing is that he is still stable on the ventilator.”

January 1st Update from Ginger via Facebook

Ginger:

“Thank you all for praying for us! Henry was discharged yesterday, and we had a very nice night with him and Caid with us. Ian received a “diagnosis” of HLH yesterday (which means they think that is what it is, there is not certainty still) and began higher dose steroid treatment and low dose chemotheraphy last night. The decision has been made to take him off the ECMO machine and put him on the ventilator, the surgeon will be coming later today (11:30 am AZ time) to do that.

Please pray for the transition and that Ian will continue to improve. We are very happy about this, since once he comes off of ECMO, they can give less drugs to him (he has been on heavy sedation and sometimes paralytic drugs to keep him from moving). I am very nervous about the withdrawls he will be going through. They will have him on methodone to help, but this is one of the things I am feeling very anxious about.”