At the beginning of December we were admitted to Driscoll Children's Hospital for a high fever. A couple of days later we learned that our heart warrior had Roseola, so nothing urgent.
On December 16th Addy started running a high fever again only that night her 3 year old sister was also running a high fever with croup. The 3 year old was much sicker than the baby.
December 22nd I just couldn't kick the feeling that something was wrong. I finally caved and took her to the E.R. but because I was still feeling like I was over-reacting (and I didn't want to jinx Christmas) I stopped at the pediatricians to have them check her oxygen levels. She was asleep in the car and I made them come out in the cold and check her. Her oxygen was at 69%, she is usually at 84-85%. I called Primary Children's and might have cried to the nurse, lol. She told me to book it or I could stop at the nearest hospital for them to life flight her. I chose to cruise and did debate on calling 911 for an escort (really, I was that worried). At the hospital I rushed her into a crowded room of anxious parents. I held her up and said, "I have a heart baby her oxygen is really low." We skipped right past all her peers. When they checked her numbers she was at 53%. I was sick! I'm so glad I followed those promptings to bring her in. She tested positive for parainfluenza4 (not the flu). Two days later we took her home on oxygen, a 1/12th of a liter and two days later we took her off... yay!
On the 27th I just couldn't shake that feeling that something again was wrong. I checked her oxygen levels and they were low again. We put her back on oxygen but noticed that she only needed it after walking around. We were enjoying a family reunion so we just kept an eye on her. We returned to her grandparent's house and in the morning I chased her up the stairs. She turned blue and was really struggling, I caught her oxygen saturation at 42%. I grabbed grandma (so she could drive) and we rushed back to Primaries. In the ER if she walked on the floor she'd drop into the 60s but if I held her she bounced back to the 80s. We had a sedated echo and didn't see too much concerning other than that she needs a cath (we expected this). The head of the single ventricle survivor clinic came to visit with us and was very frank that she most likely will need a transplant in the near future. She tested negative for any virus.
We traveled back to Texas and had one day home before an appointment with her cardiologist at Texas Children's Hospital. I had a gut feeling that we were going to be admitted (I even packed my clothes separately from my husband and kids). In the spirit of being optimistic though, I planned family outings in Houston. We waited, and waited and waited for her appointment and within minutes of seeing her cardiologist we were admitted, lol.
We had been inpatient for a few days and the doctors were making it clear that they didn't see any issues (she was in a crib). They came to send us home, clearly, not believing me (she didn't even need oxygen in the crib). I asked that we run her around the floor and check it again. They agreed and again she dropped to 55% oxygen saturation. That quickly ended the discharge discussion. They did an echo (it failed, she was too fussy). They did a CT (lousy pictures as she screamed the whole time, I was SO mad). They did a sedated echo and learned nothing we didn't already know. Next they did a bubble study. They had to put two IVs in because of her special heart and mommies heart couldn't take much more. The bubble study was the key. Addy has atrial ventricular malformations (AVMs). In other words her blood is bypassing her lungs, so they aren't carrying oxygen to her body. This also means that no matter how much oxygen I give her it doesn't bring her oxygen saturation up (the oxygen she is on now is helping with her slight cold). This is caused by the replumbing of her heart. Normally an enzyme is created as blood passes through the liver and prevents the body from making AVMs but in babies like Addy these enzymes aren't made. The solution? The next open heart surgery, the "Fontan." The problem is that the "Fontan" is typically done around age 3 and a half. She is WAY too young at only 15 months.
Monday morning, the 22nd the team came in and told us that it was unlikely that we would go home for some time. That afternoon the cardiologist came in and discharged us. Basically, we could do the same thing they were doing there. So, I rented a car and drove home. We will be going back every week to be monitored. When she has been healthy for 6 weeks we expect to have her in for a heart cath (it's not open heart surgery but still rough on our baby).
Now we are waiting for our follow up appointment next week to find out the game plan. Prayers are appreciated.
