Ups and Downs

We celebrated making it out of the ICU to the regular cardiac floor only to learn that Jordyn would need another heart cath. shortly after so we ended up right back in ICU. Every time it felt like we were getting close to going home something would happen to set us back or so it seemed. Before Jordyn could get her heart cath. she spiked a fever and had to be put on antibiotics. The doctors suggested a PICC line (peripherally inserted central catheter) would be a good idea for Jordyn and she would be able to keep it whenever we got to go home. They put her to sleep and tried to place a PICC line in her arm with no success and also her neck with no success. That was very frustrating, her veins were very small and I could see where they poked her and tried to get the line. Plus, putting her to sleep created a risk every single time.

The doctors decided Jordyn could wait a little while before her next heart cath. because things were going well. I asked could we get transferred to DC Children’s because I really wanted to go home or at least be close to family because Boston was 13 hours away. There in DC she could get a central line placed, work on gaining weight, and just watch her vein very closely. It was just an idea at that point.

That same day Jordyn took her feeding tube out so the doctors gave her chance to see how she would eat on her own. She did a good job. She ate a bottle plus all of her meds! 3 days went by that Jordyn had been eating by mouth and 2 out of the 3 she gained weight (they weigh babies by grams every day to make sure they are gaining weight). I was so happy because she was back up to 9lbs which was her weight when we go to Boston. Around this time, she had also learned how to stick her tongue out 🙂

Jordyn got an EEG over night to check and make sure she was not having seizures. Some of the nurses were concerned because she used to roll her eyes back, smack her lips, and was very stiff sometimes. She had always done this so I was not concerned plus babies do a lot of weird things sometimes but it was definitely better to be safe than sorry. The EEG came back showing that she was not having any seizure which was great but the next day she still had more testing to go through to look at her veins again in preparation to go home.

A couple days later Jordyn’s lung scan showed that she was not getting blood flow to her upper lungs meaning her veins were closing again… the next step was to get an echocardiogram and a CT scan to confirm and if they were closing a heart cath would be needed immediately. So the next day she could not eat before the tests so she was crying and hungry which truly broke my heart every time I couldn’t feed my daughter because I could not explain why mommy was not giving her something to eat. Whenever she had to get anesthesia she had to fast for hours but you cannot tell a baby that so it was very sad to me.

That day Jordyn had a pretty rough day. The doctors saw that her veins were worse than they thought and her heart was working extra hard. They had to put a central line in her neck and then open up all of her pulmonary veins with the balloon catheters. She had to go back to CICU. She had a breathing tube for the time being and they had to paralyze her with meds because the sedation drugs weren’t keeping her still and it was too dangerous for her be moving a lot with that breathing tube. They mentioned lung transplant again that day but we kept praying we wouldn’t have to go that route because of her weight and also the success/failure rate for pediatric lung transplant I wanted that to be a last resort. As of then she was back on the road to recovery after another heart catheterization.