Wisdom Heart

Hi everyone. Sorry I missed posting for a couple of days. Thanks for the comments. It is really nice to hear from the people reading this.
So I left off with Sophia's welcome home party. It was really great, but Sophia seemed tired and slept through most of it. Looking at photos from that time now it is evident how blue she was. But at the time it was not.
The next morning we had a routine follow-up appointment with the cardiologist. He immediately said he thought she seemed bluer than she was at discharge from the hospital. He had some trouble getting an accurate reading of her O2 saturation (I explained O2 Sats in one of the children's hospital posts). I guess he didn't have the tiny probes they used in the hospital and he was having a hard time getting an accurate reading from Sophia's tiny fingers. He made a guess based on her color and suggested we go to the emergency room as a safeguard.
We went to the ER at the children's hospital and they hooked up the monitor and got a really low reading (50s). And decided that she should be admitted immediately. They established I.V. access and gave her oxygen and we were sent to the PICU (pediatric ICU), since Sophia's was no longer considered neonatal we did not go to the NICU this time. We had been out of the hospital just a couple of weeks at this point.
They determined that she would need surgery right away, but not immediately. They had decided they would do the Blalock Taussig shunt I mentioned before. They scheduled it for the next morning. All we could do was wait. Of course, if she got any worse they would operate immediately.
They explained the procedure to us and we signed all the authorizations. They explained she might need to be put on a heart/lung bypass machine that would function as these organs while they operated which would increase the possibility of complications.
The PICU was a slightly different environment than the NICU. She had a private room, but it was pretty open. The protocol to get in to the ward was similar to the NICU. The thing we noticed right away was that there seemed to be greater access to the doctors than in the NICU.
The next morning Sophia was prepared for surgery. She would have to be intubated and a ventilator would breath for her while she was under the anesthesia. The surgery was about three hours and everything went great. She did not require the heart/lung bypass machine. When we saw her, she was on the ventilator. She had a feeding tube down her throat. She was extremely swollen all over (from all the excess I.V. fluids she had received in the OR). She had about a three inch incision down the middle of her chest held together by staples. Just below the incision was an 1/8th inch diameter tube about 10-12" long with a bulb on the end that allowed fluid in her chest cavity to drain. She also had a catheter to collect her urine (she'd had a catheter in the NICU also).
Now we had to wait for her to wake up so the ventilator could be removed. Sophia had a real tough time with this. If I remember right, it was at least a couple of days before they even attempted to extubate her. The belief was that she was relying on the vent to breath for her. They called this "riding the vent." One of her doctors thought that she might breath on her own if it was removed . The analogy they used was "she would fly" without the vent. I think this was a comparison to a bird leaving the nest. This attempt failed miserably and she had to be reintubated the same day when it became evident she was not going to breath on her own.
She was given some respiratory treatments, medications and more time.
While she was on the vent, she had to be suctioned regularly to keep the airway clear and keep the vent working efficiently. This was a tricky thing and was quite scary to us. Sophia had what was explained to us as reactive vessels. I am not sure I remember the cause. But what this meant was that every time she was suctioned she would "clamp down" and her O2 sats would plummet. One time they dropped to about 35% which was terrifying to us and I think shook her nurse up quite a bit too. But, eventually she was able to be extubated and a new series of challenges presented themselves.
She was getting regular doses of narcotics to manage both her pain and to keep her sedated, which was especially necessary while she was on the vent. Mainly because of this reactivness I mentioned above. She received alternating doses of morphine and fentanyl. Once she was extubated these doses were tapered off in order to make her a little more alert. After these drugs were discontinued, it became apparent to us rather quickly that Sophia was not well. She couldn't sleep, she cried inconsolably and she was noticeably agitated. When we explained this to the nurse and suggested that we thought it was related to the narcotics, she said she seemed fine to her. The next day (this had continued through the night) a new nurse came in and noticed immediately that Sophia was exhibiting signs of narcotic withdrawal. The nurse the night before had been instructed to watch for this and report to the doctor any changes in her behavior. She had ignored our suggestions and not reported any of this to the doctor, who was not happy. In fact, he was noticeably angry. However, Sophia was started on a withdrawal treatment immediately that consisted of a methodone/ativan taper. It was a 15-day program. It was obviously not easy for us to accept that Sophia was a drug addict and not even 2mos old.
The next big obstacle was feeding and this has been a challenge to this day. Sophia went into surgery eating a normal volume of formula from a bottle like any other baby. After surgery she was not able to eat from a bottle and has not since. I can discuss this more in future posts. But the thing I will say here is, Sophia was discharged from the hospital with a feeding tube in her nose (NG tube) and a feeding pump. And after doing a swallow study it was determined that Sophia would receive nothing by mouth. Like I said, I will post more on this issue later.
Here is the summary. Sophia received a B-T Shunt. Her surgery was very successful and her recovery was quick.
She had many complications associated with narcotic withdrawal and a feeding disorder which did not exist prior to surgery.
After about a month of hospitalization, Sophia was finally released.
This is a very quick summary and I have left out much of the details. But, I will gladly answer any comments regarding parts of this I did not cover well. Just post them to the blog and I will respond.
More later-Michael