The bottom line is that the surgery went fine and Madison is doing well, but it was a long road to get through the day.
The day started with Synagis shots for all the kids. Because preemies have immature respiratory development, they are at very high risk of catching something nasty (RSV) during cold and flu season. Term kids can fight it off, but for preemies it can be fatal. So, insurance pays for something called Synagis which is about $1,000-$1,200 per shot. The kids will get it monthly October through April for their first two flu seasons, which should give them enough time to catch up with kids their age with respect to respiratory maturity. Anyway, it’s an intramuscular injection that goes in the thigh, so as you can imagine the kids were not fans. Lots of red faces and crying, especially by Chloe who’s head looks like a big, ripe tomato when she cries a lot. They had to weigh the kids, by the way and Chloe was 9 lbs 13.5oz, Noah was 8lbs 8oz and Madison was 8lbs 6 oz. In case you were counting, Madison put on 10oz in the last 7 days; good for her.
After the pediatrician’s, it was back home to drop off Noah and Chloe, and Julie and I continued on to Children’s Hospital to check Madison in for surgery. We walked in the door at 11:20am (remember that time) for our 11:30am check-in dealdine.
The paperwork went fine and by noon we were back in pre-op getting ready for her 1:30 scheduled surgery. For those of you who have been fortunate to avoid hospitals, they have these things called “procedures”. They must be followed without exception. In the words if Colonel Jessup of A Few Good Men, “marines follow orders or people die.” I think that is the basis for this. Anyway, we are waiting around, answering questions, filling out waivers and consents when I hear the nurses debating some recent change in policy. Under the old policy, anesthesia would put in the IV and start the antibiotic after the patient was sedated. But under the new policy, the antibiotics need to be given before the patient gets anesthesia. Since it takes an hour to administer the IV antibiotic, they better get started on that.
Putting in IVs on newborns is a special skill because their veins are so small. It takes a while to find a vein, and when you do it’s a 50/50 shot at success Half the time, they can’t get it started and they need to do it all over on another vein. Such was the case with Madison. They poked, stuck and prodded but after two tries (and quite a while), they got the IV in.
But wait, it appears there was another change in policy, right? One nurse seems to remember that patients need to get Benadryl and an antacid before surgery as well. OK, we’ll have to administer that before the antibiotic can start. To make a long story short, it was 2pm before all of her pre-operative medications were administered. That finished, we kissed her for good luck and headed down to eat lunch.
It was well after three, when we realized we didn’t have an update. Usually they will call every hour to let you know how things are going. Close to 4, and we still didn’t hear anything. So, I headed up to the surgical waiting area to inquire for some news. Turns out there was an update, but they told the receptionist not to bother us with it. The update was, “she went under the anesthesia just fine. They started the procedure at 3:18 and would be giving us updates every hour.” OK, we can start to tell this will be a long day.
Time ticks by, until around 4:30 we get another update. They are still doing the procedure but things are going fine. No sense as to how far along they are or when they will finish.
Finally at around 5:30, our surgeon came out to tell us everything went really well. He was able to connect the cyst to the ventricle that has the catheter in it. For an added bonus, he was able to connect a smaller cyst as well that he never intended to touch. Finally, he used a needle to drain 6cc of fluid from the fourth ventricle, which is the space we can’t really go after until Madison is larger. We’ll do an MRI tomorrow (Saturday) and another in a little over a week to see if the fourth changes size. She was still waking up from surgery, but her breathing tube was out and we could see her soon. Yay!
So we go back into recovery, and Madison looks a ton better than the last time she had surgery. This procedure took about half as long, so that is not surprising. What is surprising is when Madison stops breathing and her oxygen saturation drops to 40%. We had been warned about this behavior. Preemies and former preemies sometimes have an odd reaction to anesthesia whereby they hold their breath for a while. This never happened to Madison on any of her prior surgeries, so it catches us a little off guard. The PACU (post anesthesia care unit) nurses get her to start breathing again and she is back to normal. 10 minutes later she does it again, and the PACU pages anesthesia. The anesthesiologist shows up, and on cue Madison stops breathing yet again. One more time, and they will put the breathing tube back in to make sure she is supported. The anesthesiologist explains again to us not to worry as this is a known preemie reaction. Small consolation. By this time its 8pm and Julie has to head home to help with the other kiddos.
In the meantime, the PACU nurses are debating what to do next with Madison. She can’t stay with them all night, but they have orders to send her to a normal hospital bed which they don’t feel comfortable with either. When she does stop breathing, her oxygen plummets so quickly they feel she needs intensive care. So, they call the NICU (neonatal intensive care unit) to get her a bed. It would probably only be for the night, and she would be transferred to her original bed once she stabilizes. After a hour or so back and forth with the NICU, it’s decided that she is too old for their ward but she can have a bed in the PICU (pediatric intensive care unit). The PACU nurses call PICU, but there are no beds. There is a solution however. They can move a more stable patient from the PICU to the regular bed originally designated for Madison. They’ll call us back when Madison can come up.
While this is happening, Madison is getting stronger and stronger, and actually drinks 3 oz of sugar water and 2 oz of breast milk. Two hours pass, and the PACU calls the PICU to get a status. “how is she doing”, the PICU asks. “She has been fine lately”, is the answer. “Really”, says the PICU, “in that case she probably shouldn’t come here. We’ll send someone down to evaluate her.” In the meantime, Madison has fallen asleep on my chest; it’s clear any PICU evaluation would not lead to her admission to the PICU. An hour later, still no sign from PICU. By this point, Madison is clearly stable and all of the intensive observation we were hoping to get out of the NICU or the PICU was provided by the PACU nurses who are now way, way into overtime. By taking so long to make up their minds, the NICU and the PICU effectively got PACU to do the job.
So, the PACU nurses decided she is probably OK to go to the regular hospital bed at this point. But wait; since there is a change from PICU to the regular ward, they need an order from neurosurgery. Page neurosurgery and wait. Finally, the order came through. PACU calls the regular ward with the order, but it appears their last bed was taken by a last minute transfer from the PICU (sound familiar?). Finally, a room in the regular ward was made available…at 12:30am. We were stuck in bureaucratic, procedural limbo in PACU for about 6 hours.
We got Madison settled at about 1am, and after feeding her some formula, I decided it was time for me to grab dinner. Sadly, the line at the all night counter at the cafeteria was way too long for my patience, so I went back upstairs, ate some Sugar Babies and went to sleep. Tracy, the nurse assigned to us, was great and quietly took care of Madison ‘s 3am feeding so I could get some shut eye.
As I write this on Saturday morning, Madison is doing fine. We had the MRI, but we don’t have the results yet. She is eating a ton, and her eyes are crossing a lot less than before the procedure. Hopefully the doctors will give us good news and we won’t have to be back for a while.