When you are dealing with science and prayer it is sometimes hard to differentiate where your trust lies. Certainly I am praying for Alli to have relief, but I have to trust in her doctors to help bring her that relief through various tests, treatments, medications, etc.
Over the course of the past few weeks we have really struggled to keep food and medicine in Alli and at times she just looks down right miserable. That isn't even an exaggeration. We are feeding Alli 2 oz. at a time every couple of hours in hopes of just getting her minimum daily requirements in to help keep her hydrated and help her tolerate her seizure medicine. We haven't been able to figure out what is causing her discomfort - is it seizures? is it respiratory? is it digestive? Her symptoms haven't been consistent and we have played with the variables every way we can think of to help alleviate the situation. So, earlier this week, we had our monthly check in with Dr. Blumenthal, our GI specialist. Given our most recent struggles with Alli's ability to tolerate food he suggested that we have a ph probe done during Alli's 48 hour EEG. A ph probe is dropped through her remaining free nostril in to her stomach and measures the stomach acid to determine the extent of her reflux. In order to run the test she has to be off of reflux medicines for 5 days and they will give her 2 apple juice feeds. Now, I have never thought Alli had reflux, but I do follow doctor's orders and have given her 2 doses of reflux medicine every day since she was admitted to the hospital back in November. Therefore, watching her spitting up/projectile vomiting get worse over the course of these weeks, I was very hesitant to pull her reflux medicine. What if her vomiting got worse and she dehydrated? What if she couldn't keep her seizure medication down? What if I was wrong all along and she really does have reflux and this is the one thing that is helping her? How could it possibly be safe and ok to pull reflux medicines in a child who was already spitting up/projectile vomiting on a regular basis? I actually articulated all of these things to both our neurology nurse, Gigi, and our GI nurse, Janet. I also went so far as to suggest that they just admit Alli to the hospital, pull her meds, and keep her there for monitoring, as I was sure this would be a disaster and she would be dehydrated and in some form of constant state of seizure due to all of the circumstances mentioned above. So, yesterday I pulled her reflux medicine in the morning and she has now gone almost 36 hours without it. Since then we have noticed a reduction in spit up and she has tolerated all 3 rounds of medicine. I am hopeful that this pattern continues as for the first time, in a long time, she seems much more comfortable to me. She is still having intermittent spasms and we will address those this coming week, but for the time being, she seems more comfortable and that was all I really wanted.
So, how does trust fit in to all of this and to whom do I assign responsibility for what has transpired over the last day and a half? Well, earlier this week, I specifically prayed that the Lord would inspire both Dr. Blumenthal and Dr. Flamini to be able to work through this and help Alli. They in fact are very good friends and honored my request to consult with each other and with both GI and neurological impacts considered, they decided this test was the way to go. So, I had no other recourse but to trust that they made the right decision and that the Lord would take care of us. Either Alli would tolerate the reduction in medicine ok, or that He would make it such that we could get her treated quickly and safely, if necessary, over the weekend. What was the obstacle to trust? Fear. I was afraid that this decision would result in a situation that I couldn't handle and would cause Alli further distress. So, how do you balance overcoming the obstacle to trust and doing your job as an advocate and making sure the doctors hear your concerns and take them in to consideration? I find myself questioning our doctors all the time. When you're dealing with so many specialists for 30 minutes at a time, it is hard to make them understand what the full picture looks like outside of their office. I have no doubt that every one of them wants to help Alli (and probably go halves on a hit man for me) and I usually leave with some additional suggestion for treatment or medicine, but what I really want is for someone to look at her full picture and try to connect the dots. Someone who can look at her cardiac tests, neurology tests, GI tests, and medicines, and try to correlate what is responsible for what is going on with her so ultimately we can provide her with a safe way to not feel miserable all the time. In this instance, I asked my questions and communicated my concerns and at the end of the day was left with the decision of the people who I have to trust have Alli's best interests at heart and have been inspired to make the ultimate decision. So we move forward confident in that decision and face the fear associated with her treatment, and so far He is taking care of us, most importantly Alli.
Living away from family is hard. It always has been. I enjoy Atlanta, but miss being surrounded by family and friends from home very much. We were fortunate this past week to be visited by my cousin on her way back from Florida and our dear friends Raylene and Len Yarnell. We had a wonderful visit with Angela and Steven. Raylene and Len showed up just in the knick of time with that feeling of home. They stayed with us for two nights and I have to say, they left us better than they found us. Samantha and Len were fast friends and Raylene was a much needed source of motherly support for me during a very trying week. We love having company, even when times are stressful and hope to have many more visitors.
Samantha is doing well. She is challenging at times, but we are working through it. She continues to be quite the little baker at school and brings us biscuits and pumpkin bread almost every day. The ducks in our local park have really enjoyed her biscuits (which can often resemble hockey pucks), but we keep the pumpkin bread for ourselves. It is really quite delicious! She enjoys referring to herself and others as 'Sweetie' and 'Sweetie Pie.' It is quite humorous when she refers to adult men this way.
So, coming up this week, we have a cardiologist appointment on Tuesday, complete with Echocardiogram, the 48 hour EEG, and the ph probe. It should be quite a week and hopefully one that will bring us some answers regarding Alli's seizures. Oh yes, and let's not forget our PT and OT appointments. Never a dull moment :)
Have a good week!
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