Healing

Maybe it was coincidence. I never really watch television except an occasional program on public television. But while I was with Sarai in the hospital I was struggling and needed a mental distraction. I turned on the television and watched a program called Dr. Phil. He was giving advice to families who had faced trauma and grief from the sudden and unexpected death of a loved one. I didn't catch the whole episode, but enough of it to enjoy some of his insights, though I found some phrases or suggestions like you have to "move on" a little too insensitive. But I could sense he was sincerely trying to encourage healing in these people's lives.

His show ended, and then Oprah came on. I really don't watch these shows, and it was so odd what topics were being discussed. This episode featured a mom who had made the terrible mistake of leaving her baby in the car too long, resulting in the death of the child. I honestly don't remember this specific case, but don't tend to be quick to condemn. So I felt a sense of understanding in watching and listening as she described her experience with grief and how she is working on healing.

There has been so much happen in this last week. My last post was from the hospital. Today I am writing from home. I had a very sick little girl who is still sick, but healing.

I can't describe what it was really like to be there again. We've been in that hospital three times before with her and wondering what was going on and never really getting answers. It is where Bridget and Dominic were with so many tests to try to understand being performed and still we are unsure why they had their crisis events.

They were at least able to find some things this time. And yet, there are still things left open-ended. We already know how doctors want to help but aren't always able to. I held my little girl and just wanted to know -- is she okay? Is she going to get better? Is there something more than the respiratory illness that they have found?

Tests did come back confirming that she had a carnitine deficiency in addition to the respiratory illness. Some may not even have any idea what that means, but I was already somewhat familiar with this condition. It is one that was suggested to me early in my pregnancy with Sarai. It is something that specialists wondered about Dominic and Bridget having. When Sarai was in utero, they told us we'd need to test her for this when she was born. Because if she had this, it was easy to treat with a daily supplement, but left untreated the child would be susceptible to the same cardiorespiratory distress that Dominic and Bridget had had. We had indeed, tested her, but at the time the results did not look concerning. Now, however, she indeed had low carnitine levels.

I wonder about this diagnosis and how long her levels might have been low. The doctor feels comfortable with the theory that it is only a result of her being ill for so long and not eating well. But I am not so sure. The doctor feels that this is related only to the illness and not some underlying metabolic disorder. Yet he also conceded that there is just so much doctors don't know and that there is still a possibility of something else. And where you read of the deficiency causing encephalopathy, I find yet another term that I've heard discussed before.

They decided that a feeding tube was a good idea for Sarai. So they placed one. That sounds really simple, and usually it would be. But for some reason it wasn't so simple. The nurse tried to place it and was unable. Another nurse tried to place it and was unable. They called the charge nurse in, and even she was unable. The doctor said we should take her to radiology in the morning to have it placed. The next morning, the nurse came in and tried to place it. She tried and tried, just as the others had. Sarai was very upset by all of this. The nurse was perplexed and said that in the nine years she had been working, she had never been unable to get a tube down. Another charge nurse came in. She was finally able to get it in, the trick being to leave the stylet inside. Here she is after that first tube was placed, still not feeling well at all.

Later they were suctioning out the secretions from her nose and throat. She really doesn't like that at all. She was very upset, and afterward I was holding her and trying to comfort her. I realized there was milk bubbling out from her nose and mentioned this to the nurse. She came over and we wiped it away, just to have more milk appear. She left to get the charge nurse as milk continued to bubble out of her nose. As the charge nurse came in, the end of the tube suddenly popped out. This was where the milk was coming from. Of course, this meant another attempt at putting down a tube. And with all the difficulty of placing the first one I was concerned about doing it again. However, they used the stylet again and were able to place it in just a matter of minutes. Here she is with the second tube, and starting to feel a little better after having had the carnitine supplement, the continuous feeds, an IV going, and generally starting to fight off the illness that they say started this whole thing.

Unfortunately, Sarai coughed that tube up when they had to bug her again. So yet another tube was placed. And fortunately this time the stylet trick worked again. She was continuing to seem to improve as well. Everyone was so excited when they were finally able to see her awake and even a little intersted in playing. She was even somewhat interested in food, though not quite swallowing much. So she would let it fall down the front of her shirt, which you can see in the next photo of her sporting the third feeding tube.


Sure, the doctors and we are all glad that Sarai has made good improvements. It was so upsetting to see her so sick and not seeming to get better those first couple of days. And while I am so glad to be home and so hopeful that she is healing, I still feel quite nervous. There are still thinks that have the doctor perplexed, just like the last three times she had been there. Like the strange breathing episodes she would suddenly have that looked bizarre and yet her vitals would stay in a good range through:



So many unknowns, and yet I hope she really is healing. It is so scary, though. I felt like I was working on healing after Dominic died, and then suddenly the wounds of grief were ripped apart with Bridget's death. To say it hurt so much is an understatement. Last night as the alarm kept going off with low heart rate, I tried to imagine it was just the feeding tube pump alarming. It is hard to think she is okay when there is still so much healing left for both her, and healing left for my mind to do.

It was nice to spend the day at home together again yesterday. I try to stay focused to enjoy the sunshine in spite of the shadows. We are so grateful for each moment. I think she is just absolutely beautiful, even with the tube.