At our last routine visit with the cardiologist, Abby's oxygen saturation levels were dropping again. Apparently, the obstruction she went back to CHOP to try and clear up, is still causing some problems. Abby is growing much better than the average HLHS baby, and as a result, she is "outgrowing" her shunt faster than her doctors would like. As a result, Dr. Castro wants her on oxygen therapy 24/7 to try and put off her second surgery as long as possible.
The average time frame for the Glenn (second stage of the three surgeries she will need) is 4-6 months old. However, without the supplemental oxygen, she would need that surgery right away. Unfortunately, even though she has grown well, the rest of her organs are still developing, especially her lungs. The doctors want to keep her on the oxygen to give the rest of her body and organs time to develop further. This gives her a better chance of making it through the next surgery successfully. They are hoping she makes it to 5 months, which would put her next surgery sometime in late May/early June.
So, on Tuesday we went to the PICU at Jersey Shore University Hospital to get her dosage figured out. I thought this would be a quick in and out kind of thing. WRONG! We were there 8 hours. It was more stressful than I though it would be, and definitely showed me how far superior CHOP is to any other hospital in the area.
After 8 hours, our travel oxygen tanks finally showed up and they sent us home. A home respiratory therapist met us at home to set up the giant oxygen condenser in the living room. It has 50 ft. of tubing attached so I can walk Abby around the house without dragging a tank around with us. They gave us some travel tanks for when we go out, but the idea of toting around both girls and a giant oxygen tank, is pretty daunting. Anna is very interested in all the equipment, but is doing better than I expected keeping her hands to herself.
The hardest part for me is seeing Abby's beautiful little face with the nasal cannula. She looks like such a normal baby, it is very easy for me to forget that she has a very special heart. The oxygen makes it impossible to forget, and sometimes that just makes me sad.
This is definitely a concerning setback for us, but we are doing our best to keep a positive attitude. I just hope she doesn't need the extra oxygen after the Glenn, and that I somehow manage to figure out how to get around town with the travel tanks. I guess it's time to buy that double stroller!
The average time frame for the Glenn (second stage of the three surgeries she will need) is 4-6 months old. However, without the supplemental oxygen, she would need that surgery right away. Unfortunately, even though she has grown well, the rest of her organs are still developing, especially her lungs. The doctors want to keep her on the oxygen to give the rest of her body and organs time to develop further. This gives her a better chance of making it through the next surgery successfully. They are hoping she makes it to 5 months, which would put her next surgery sometime in late May/early June.
So, on Tuesday we went to the PICU at Jersey Shore University Hospital to get her dosage figured out. I thought this would be a quick in and out kind of thing. WRONG! We were there 8 hours. It was more stressful than I though it would be, and definitely showed me how far superior CHOP is to any other hospital in the area.
After 8 hours, our travel oxygen tanks finally showed up and they sent us home. A home respiratory therapist met us at home to set up the giant oxygen condenser in the living room. It has 50 ft. of tubing attached so I can walk Abby around the house without dragging a tank around with us. They gave us some travel tanks for when we go out, but the idea of toting around both girls and a giant oxygen tank, is pretty daunting. Anna is very interested in all the equipment, but is doing better than I expected keeping her hands to herself.
The hardest part for me is seeing Abby's beautiful little face with the nasal cannula. She looks like such a normal baby, it is very easy for me to forget that she has a very special heart. The oxygen makes it impossible to forget, and sometimes that just makes me sad.
This is definitely a concerning setback for us, but we are doing our best to keep a positive attitude. I just hope she doesn't need the extra oxygen after the Glenn, and that I somehow manage to figure out how to get around town with the travel tanks. I guess it's time to buy that double stroller!
5 comments:
Oh Alison, I'm so sorry for this set back. It breaks my heart to see your beautiful little girl with tubes in her nose. What a cutie though. Hope things go well and she off after her next surgery.
thinking of you guys. give us a shout if you need a hand when you're out and about.
We came home with oxygen after Gavins first surgery. I know what you mean by "its easy to forget they are heart babies". Every heart baby website I have seen the children are absolutely beautiful. Even when Gavin was born I said "oh, he looks great, there is nothing wrong with him!"Gavin had his second surgery at 3 months, he turned 4 months while we were there. But we will pray that Abbys second surgery will be put off as long as possible. She is so cute, even with the oxygen!! We think of you daily!
Oh, Ali... she is so beautiful.
She is so alert and bright eyed.
I know it is hard to have the reminder there all the time, but that little girl is stronger than most of us are.
It will be just fine.
Wendy
Oh, Ali
I am thinking of you all.
LOve, Fefe
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