I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. (Psalm 139:14)
Being grown in faith because of my daughters diagnosis of Trisomy 18, a rare genetic syndrome. This is my reality of loving Alyssa and the impact she makes in our family. I praise God for showing us His grace and revealing our human frailty throughout this journey.
Tuesday, May 11, 2010
THe common cold isn't so common for Trisomy 18 kids...
Alyssa has been sick with a cold since Friday. It came on quick and quickly affected her lung function and heart rate. Her O2 without supplemental oxygen while awake was down to the 80's (70's a few times) and her heart rate while awake but resting was at 220. She had a temperature of 102.6 at the worst point. Her sleep stats were worse. We had little sleep Friday and Saturday as we tried to manage things~ we opted to keep her home and manage since we have oxygen here vs. taking her to the hospital. With the aide of Tylenol, increased nebulizer treatments, chest PT, rest, hydration and good ole' fashioned cuddling things began improving. Still sick and miserable on Monday we checked in with Alyssa's pulmonologist( a phone call ; visit to come on Thursday) and pediatrician (an office visit).
We were cautioned by Alyssa's pediatrician not to take on too much of the burden when she is sick; in case she takes a serious turn for the worse as she wouldn't want us to feel responsible (parent's guilt) The doctors said this more kindly and was genuinely concerned. So when speaking with her pulmonologist office we were given some guidelines on when we should take her to the hospital. We were within these guidelines over the weekend; which gave me a measure of confidence in being able to read Alyssa's symptoms and manage them well.
Alyssa is still recuperating from her sickness ( a cold). She is wiped out, so no therapies this week just doctor appointments ones that would be a bear to reschedule. So off we will go to them with oxygen bag in tote.
An interesting side note; on Facebook their is a large community of Trisomy families, Trisomy 18 mommies and there's SOFT and Trisomy 18 Foundation amongst other forms of support. It's great to have such a wealth of support at my finger tips~ you get the good, the bad and hope from the connections. It's hard some times because you share in the sadness of others when a child is sick or has earned his/her angel wings but there is hope when you learn of a child using a particular therapy; has gained a skill, or has been born and is thriving.
With this sickness a fellow T18 mom had messaged me on FB..cautioning me not to overlook the possibility of Alyssa having a UTI (it could be worthwhile to have a blood drawl or urinary cath.) She has never had one to my knowledge and didn't have the usual symptoms. However I did mention it to Alyssa's doctor and surprisingly I was told it is not uncommon for UTI to manifest first as lung issues! Apparently when kids with multiple heath issues are fighting an infection; the infection takes the path if least resistance, which is often the respiratory system. Since the the respiratory system is not usually the first place to start in relating it to a bladder/bowel issue; the UTI goes unnoticed for a while which can cause big problems. Who would'da thunk that? So I'm glad to know this now, even though in this instance it wasn't the case for Alyssa. It is good to have bits of wisdom stored for future use!
Alyssa has also lost weight~ this occurred before her sickness. This is the first time ever that she has lost not gained. I am sure it is due to my fiddling with her g-tube feeds in hopes to getting her to eat more orally. There is a fine line between stuffing her to the point she vomits and meeting her caloric intake. So between this new sickness and wanting her to have some fat reserve(s) I am going to re-work things again. Hopefully helping her to regain what she has lost and find a food plan that will encourage continued weight gain while promoting oral eating.
So in the next week we have pulmonology; orthopedics, and an ENT appointment.
By the way May (Vera's mom) thank you about the heads up regarding different head gear for the CPAP machine. I did see the picture of the little girl (with SMA) and was able to get the headset ordered. Unfortunately Alyssa's nostrils are too small for the smallest size!! So when we go to her pulmonologist we will see what else we can do. Very frustrating.
Another source of frustration is that Alyssa's stander continues to be denied!!! So hopefully her ortho. doctor will offer more assistance by writing a detailed letter of medical necessity.
Here's when being small isn't the best of all~ladies
Till next time~~
Oh by the way check out the latest SOFt newsletter; a picture of Alyssa is in there. So cool! It's a overall good issue too!!