Today was such a rough day. We had appointments at 8 a.m. with pulmonology and as we were getting the girls into their carseats, Sydney’s oxygen level started dropping pretty significantly. We rolled some blankets underneath her shoulderbones to keep her airway as open as possible and made it to Riley 30 minutes late. Dr. A. decided that even though the girls both have large amounts of saliva that are causing them to choke, he didn’t want to prescribe an anti-secretion medicine. This was kind of hard for me because they can no longer swallow their own spit and we’re having to continually suction them, which they hate.
After the appointment, I told our hospice nurse that I didn’t think car seats were a very safe option for us and asked if we could get ambulance transport to and from appointments. She agreed so we were taken from Riley to C. North for monthly Synagis shots. It took forever, but we finally got them and got home. It is so much work transporting two girlies with all of their monitors, oxygen and machines. They are now on oxygen full-time and when we take them off even just to change diapers or clothes, they drop to the mid-80s range.
When we got home, Sydney had developed a bit of a fever from the shot so we gave her some Tylenol and they were both fussy for a good 3 hours. I know some moms might think 3 hours isn’t that bad, but I used to be very lucky that they generally were not fussy babies so it is hard on me to hear them be so uncomfortable.
Dr. D. from developmental pediatrics called a bit ago to see if we would be interested in admitting the girls to Riley full-time. I’m just not sure this is the best option for us…health-wise, I don’t know that it would make much of a difference for the girls. They have pretty much all of the machinery they need here. Also, I think it would definitely take a toll on them and us physically and emotionally.
Jake and I have started to notice significant deterioration in both girlies. Just 3 weeks ago when Sydney was in the hospital and on the O2 monitors, she was able to hold steady at 96-100 percent oxygen saturation, and now she can barely stay in the 90s. I’m just so sad that it is all happening so quickly…much more quickly than I expected. It’s also sad because the girls are so much more tired because their bodies are working so hard. Their average heartrate while awake is between 160 and 200…it is taking such a toll on them.
Brook, I’m so sorry you are going through this. It must be hard to decide to hospitalize the girls or not. I don’t have anything new to offer you, but I just wanted to tell you I am reading along and think and pray for you every day.
Oh man, this sucks. I’m so sorry, Brook. Give the girlies a hug and cuddle from me and the boys. 🙂
Just wanted to send some BIG hugs and lots of love and prayers to you and your little ones!
I am so sorry things are moving so fast. It sounds like you have some great Hospice people with you. I think about you and pray for you daily. ((hugs))
Big Hugs! I know that you will make the right decisions about the hospitalization. You are a great mommy!
Prayers out to your family, you are doing so good for those girls!
Brook my dear…I’m sitting in the parent lounge at Children’s Hospital and agree with you that it is very physially and emotionally draining. I think you’ve made the right decision for now with the girlies.
I think of you OFTEN and wish I could hug you…you are so loved by so many. Keep the faith and know your girls have SO many prayers sent their way.
(Warrior moms unite…)
Brook,
I am new to this blog and want you to know from a parent that lost a sweet little girl 3 weeks ago you are so brave. I know how hard it is to watch our children suffer. Hang in there and live in the moment. My thoughts will be with you and the girls.
Thinking of you and those girls.
(((hugs)))
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I’m so sorry! I wish I could find the right words, but nothing seems fitting. I know these are probably to small for your girls, but maybe you could ask the doctor’s if something like this would be better than a traditional car seat http://www.adaptivemall.com/anincarbed.html I don’t have experience with this, but thought it might help?
Oh, I stumbled across your blog and my heart is so heavy for you. I am praying for you and your sweet little girls. You are so strong and an absolutely amazing mother.
Praying for you.