Tuesday, September 27, 2011

Everything We Should

I've had a hard time posting the last few weeks. In a way it seems as though I lost my "voice". There certainly hasn't been a shortage of things to write about, a lot has transpired since last month. Delaney has undergone "routine" G-Tube surgery, we've been able to employ more help at home, I've returned to work and we've experienced a series of events that have challenged our spirit and really wonder what the future holds for us.

On August 5th we brought Delaney in for her G-Tube surgery. We were nervous of course, we never know how she will respond to medical procedures and the stress of traveling to and from the hospital. I was even anticipating that if this surgery went well, and she tolerated the anesthetic we might have to seriously look at other surgeries. The surgery went well, there were no complications and when we saw her right after the surgery we were surprised at how good she looked. We held her and had to be careful with the tube site and all of the other stuff hanging off of her. It was so nice to see her face again without tube in her nose. It was a very bright visual that made us feel a little more normal. They sent us to a recovery room on the pediatric floor. It had a similar feel to the room we had on the postpartum floor, only we were sharing the room with someone else.

As Delaney began to awaken more she started getting really agitated. We had seen this before and explained to the nurse that we would probably need some Valium to help her along with pain meds. Initially we thought the meds were working but as time wore on her heart rate became increasingly of concern. She was rising up into the 180BPM range and soon ended up above 190 even over 200. Her breathing became labored as we had seen so many times before, we were getting nervous since the meds apparently weren't working. This made the nurses and residents very nervous as well, to the point where it seemed that every passerby was intent on "saving the day". It really felt as though we were losing control over the decisions that needed to be made. While some of this needed to be taken out of our hands there were many key observations that we have made over the previous months at home that were essential being ignored by the medical staff. To be brief, after everything they tried and being shifted to and from the PICU, we wound up staying in the PICU for four days. This was supposed to be a routine surgery with a 24 overnight recovery. Our poor daughter really struggled on this and needed close watchful care just to go home again. In many ways for Lindsay and I, it felt like being back at Children's Hospital again. There were times as we waited by her beside not knowing what would happen next, and feared that she might not make it.

Some interesting connections were made while we were back at Beaumont. So many nurses who knew of our story or were involved with us directly. We saw the nurse who performed the chest compressions, he seemed reluctant to make eye contact. Everyone seems to handle things differently I suppose. What was more important was that we actually ran into the doctor who was on call that night when we rushed Delaney to the hospital. It was a little difficult at first and we were a little apprehensive but felt it necessary to flag her down and ask a few questions. We managed to get some answers that don't necessarily take the pain away, but puts to rest our concerns that malpractice was the root of our problems. All these months we hadn't really known everything about what happened that night. We knew she coded and needed CPR, but we never fully understood the chain of events that got her there.

If you recall, Delaney was stable in the NICU after she had been evaluated in emergency that night. We were asked to go to the family waiting area while that prepped her for transfer to CH. During that 30 minute window we knew that they would have to intubate. We also knew that they had to give her a sedative along with the other meds designed to open up the blood vessel which was causing the coarctation of the aorta. What we didn't know was that it was the prostaglandin that truly caused her hear rate to drop this needing the CPR, and that this was necessary by hospital protocol, they had no other choice but to handle her transfer the way they did. There was also the possibility that when they intubated her it struck the vagal nerve which could have caused a drop in her heart rate as well. Despite the CPR and the oxygen which was present, Delaney suffered brain damage which might have been prevented, something we ask ourselves about every day. So we asked her also about "cool cap therapy" and wondered why that wasn't utilized or offered. The simple truth of that is that it is not standard operating procedure and Beaumont considered it experimental and were focused on her heart and the transfer to Children's. It was just not within the norm of what is done in those situations.

Not only did we meet the doctor who was on call that night, but we also reconnected with the cardiologist who was initially undertaking Delaney's care. He asked permission very humbly to speak with us, and to see our sweet angel. He was so incredibly solemn when he entered our room. He almost sheepishly approached. He walked up to each of us and gave us a hug, he apologized profusely for not being able to help her. You could see the tears welling up in his eyes. He reached into his chest pocket and said, "you know that I love her?". He pulled out a sheet of paper from his pocket and shared with us that he prays for everyone that was listed, and pointed out Delaney's name. It's very hard to have hard feelings for a man who truly did his best and bears the burden of knowing that it wasn't good enough. He was so humble and kind that it just washed away the injustice, at least for how we perceived things that fateful night. I only wish that this forgiving moment would also be enough to wash away all of the challenges we have been facing as a family. Nevertheless, we felt so unburdened by this experience...to have questions answered means the world to us.

After a much longer period of time at Beaumont than we expected we finally had the clearance to return home, the best place to recover from surgery. We too had to recover. After many sleepless nights and worry it felt so nice to be home, but we came home with some new realizations that were very difficult to accept but necessary. Given how routine the G-Tube surgery was supposed to be, a 45 minute procedure with what was supposed to be a brief recovery, we learned just how fragile Delaney is. We essentially ruled out the possibility of future surgeries. Everything else that doctors have talked about for the coarctation and the VSD would require at minimum an hour and half to catheterize and balloon the coarctation. And up to fifteen hours to correct the coarc, this is not something that Delaney can tolerate and would likely lose everything that she's gained over these many months. If she would survive at all.

So we've been addressing her needs with physical therapy, occupational therapy, Feldenkrais, and Ki. We have felt that this low invasive approach would soothe her, develop her and give her the best chance to overcome all of this. What has been making this easier is that we've been blessed with the addition of in-home nursing care for Delaney. We have two fabulous nurses who give us 8 hours a day 5-7 days a week. This has made my return to work so much easier on me knowing that Lindsay wouldn't be left alone all day with everything that Delaney needs. We've even had the chance to go out for a couple of hours in the afternoon when I get home from work. A sense of normalcy at least for brief periods of time. Our nurses have surpassed all expectations and we are so comforted to know that they go above and beyond on a daily basis, holding her, reading to her, and all of the other basic care needs.

In the last three weeks we've been noticing that Delaney has had increasing difficulty at night and we've needed to suction a lot more. This has been exhausting and painful for us but even more to see this sweet angel struggle so much. We had grown increasing concerned and felt we needed to have her heart checked and took her down to CH to find out what may be happening. On September 12th, we took her in and had an echocardiogram done. We've seen this many times in the past months so we are no strangers to looking at ventricles and valves and all the different angles, all fascinating but this visit were were worried to begin with.

As the technician was moving through the different angles and pointing out different structures we saw something that was quite astonishing, the VSD had a significant amount of tissue that was apparently trying to cover the hole. You would have to think of this as sort of a netting or mesh as there is still a significant amount of blood which is passing over the septum. Still I was feeling encouraged. It was only a few moments later that what we had feared would happen materialized. They have an algorithm which calculates the blood flow passed the coarctation, this velocity which results would be compared to previous figures. As of that Monday it was clear that Delaney's coarctation has returned. The took blood pressures on all four limbs and found a gradient of 30, this was previous 10-15, this doubling since the last check. As a result of this there is less blood flow that is perfusing to her stomach and lower extremities. The more this worsens the more trouble she will have feeding and circulating blood throughout her body. While we were there they tested Delaney's stool for blood and unfortunately it was positive. In otherwise normal healthy babies this is sometimes is an indication of an allergy to protein, sadly for us this means that her stomach is failing. The pain and irritability that we've seen in her the previous weeks was likely due to this change in cardiac status.

This news is incredibly devastating to us, we have been doing everything possibly to give her the best chance of overcoming her challenges. To give her a chance to have as much quality of life as possible. What we now have to realize is that it's not always best to do everything you can, sometimes you have to focus on everything you should.

As I bring this post to a close in the last two weeks we have hunkered down and our focus is to cherish every moment we can have with her. We are doing everything we can do keep her comfortable and calm. We don't know how long she has, we've been told weeks or months. There are times that we've felt that it would only be a matter of days, yet she continues to surprise us and perhaps there are more surprises ahead. Some days have been more challenging than others but we hope that you will be here with us in spirit during this most difficult time.

B & L & d

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