Back Surgery

December 1- Back on October 20^th when the KTVX Channel 4 television news crew was doing a short documentary on the Newborn Intensive Care Unit (NICU) at Primary Children’s Medical Center, we were told that Sarah had been included in a few of the shots, but no one would say whether or not she would actually be in the documentary.  They couldn’t even tell us when or if it was going to be aired.  The answer came during the week.  There were a number of commercials during the week previewing the show that was to be broadcast tonight.  Sarah was in every commercial.  The program was titled, “Born on the Edge”.  Sarah’s story wasn’t told, but she was being held and fed by one of her nurses who explained more about all the sick babies that were in the NICU and the care being provided by the nurses.  There were some good shots of Sarah.  The program made you appreciate how ill some of these babies are and how blessed we are to have a hospital so close with the skills and knowledge to save many of them.

Sarah has been doing extremely well.  She’s off her oxygen and eating well. She’s been gaining some weight too.  We wish she didn’t have to go in for another surgery, but we’re preparing ourselves for it.  It’s not for another 2 weeks.  She will need the approval of her cardiologist before the surgery can actually take place.  That visit is scheduled for the 11^th.  She really does need the surgery, so hopefully her heart will allow it.

December 11- Had an appointment with Sarah’s cardiologist today.  She had an X-ray and an ultrasound of her heart.  There were no surprises and most importantly, no heart congestion.  He thought that she was doing very well and gave his approval for her upcoming surgery.

December 16 – Sarah’s surgery is scheduled for tomorrow, so they needed to have blood drawn today.  She cried at the poke, but that was all.  They took it from a vein in her arm.  Fortunately, it went well and we weren’t at the hospital for very long.  After we got back home, Sarah’s grandfather (my father-in-law), a close neighborhood friend, and I gave Sarah a priesthood blessing to help both her and her doctors get through the surgery tomorrow without complications.  Her mom and I also started our fast for her tonight.  In addition to all the prayers, it’s one of the only physical ways we have to show our faith and serious desires to have the Lord bless her.  It brings us comfort as well, knowing that we are trying to do our part, as little as that may be.  Our meager efforts only show our faith.  The Lord does all the significant work.  Sarah had to start her fast from formula as well, although hers wasn’t voluntary.  She couldn’t have anything but water after 2:00 a.m.

December 17- They don’t like to have the babies go for too long without food, so they are scheduled for surgery first thing in the morning.  Sarah wasn’t the first on the schedule, however, and we didn’t need to be at the hospital until 8:30 a.m.  We were a bit frustrated to learn that Sarah needed to have another blood draw.  The one done last night showed a low platelet count and they needed to know if that was an anomaly or if that was something they really needed to deal with.  A low platelet count would mean a lot of extra bleeding. 

The lab technician assigned to do the draw tried to find a vein in her right arm, the opposite arm from the one used last night.  He couldn’t find one that he was comfortable with, so he tried the arm they did last night.  He inserted the needle and missing the vein, started moving the needle around in her arm hoping to find it.  This went on for 30+ seconds with no success.  Sarah was screaming in pain, and he started crying too.  He was clearly frustrated and I’m sure, feeling a lot of stress.  He finally withdrew the needle, but after about a minute, he tried it again in the same arm.  Still no success.  I know that he was doing his best, but at this point, I was pretty frustrated and tempted to have him stop.  He called another lab technician for help.  She was obviously more experienced, or talented, and successfully made the draw the first time using the right arm, the one he couldn’t find a good vein in.  She made it look so easy. 

We thought that we were finally done with all the poking only to learn that we were just starting.  A different nurse or lab tech, not sure which, had to do a bleeding time test.  An automatic device stabbed two small knives into her right forearm.  A timer was then started to see how long it would take to stop bleeding.  It took 6 ½ minutes, which is normal.  We were told that this was all precautionary testing. 

Unfortunately for Sarah and our elevated stress levels, we weren’t finished yet.  A third nurse or lab tech came in and said they needed more blood.  They couldn’t use what had just been previously drawn.  By this time, I’d had enough and objected.  Could they really be that incompetent?  They explained that the anesthesiologist wanted an electrolyte study done which couldn’t be done on the sample already taken because there wasn’t enough.  Apparently, the study request was made after the earlier blood draw.  These people really need to learn to communicate better and more effectively so they don’t have to put these poor babies in so much distress, let alone their parents.  So once again, she had a needle put into her right arm.  Fortunately, it went quick and simple.

Sarah was given a shot in her leg in preparation for surgery.  It was supposed to make her sleepy.  The anesthesiologist came for her right before noon.  He explained the surgery to us, including his role and all the standard risks involved.  He then took her off to surgery.  At 2:45 p.m. we got a call in the waiting room saying that they were just finishing up and that we should wait for the surgeon to come and talk to us.  She never came.  At 3:45 p.m. we decided to go to the Pediatric Intensive Care Unit (PICU) where she was supposed to go after her recovery, to see what they knew.  We found out that Sarah had been there for about an hour, but no one bothered to tell us.  What a day!  

She was pretty much out of it still, but she cried out in pain with every touch or movement she made.  She was awake enough to take 2 oz. of apple juice.  They started her on a continuous Nubain (semi-synthetic opioid analgesic) drip for the pain.  The neurosurgeon finally came and informed us that everything went really well.  The fat lipoma was much larger than expected, but she got most of it without any problems.  Some bone had to be removed from some of her vertebrae in order to get to the lipoma.  She used a laser to cut it away from the spinal cord, which is more precise than a scalpel.  She didn’t think there would be any problems in the future, but only time would tell.  

Because of the nursing shift change, we didn’t get to stay very long.  I did get to hold Sarah right before we had to leave.  It was a little awkward, since the surgery was on her back and I really didn’t want to put any pressure on it.  How do you hold a baby in your arms and not put pressure on the back?  Thank goodness she was on some serious pain medication.  We hated to go home, but there was really nothing else we could do for her tonight.

December 18- Sarah did really well today.  She was taken off oxygen and had the catheter to her bladder pulled out.  I guess they needed that so they could measure her urine output to make sure she was staying hydrated and to determine her kidney output.  She’s eating again and took almost 4 oz. for me tonight.  She had a slight fever, but didn’t appear to be in much pain.  She appears to be tolerating this whole thing really well.  She actually looked pretty good tonight.

December 19- Sarah slept most of the day today.  She was moved out of the PICU into the infant ward.  When I got to her room, noticed she had been put back on oxygen and she was saturating above 90%.  That’s a normal oxygen level for most people, but not for Sarah.  With her heart problems, her average is closer to 82%.  She really doesn’t need to be above that according to her cardiologist.  So, I pulled it off and shut it off at the wall.  No need to pay for what isn’t required.  I had to explain to the nurse that she shouldn’t be saturating so high and that it was normal for her to be at a lower level.  Fortunately, it was the nurse that made the initial call rather than the doctor, so she had no problem leaving it off.  I stayed with Sarah in her new room most of the night.  She was pretty wound up the whole time I was there.  I don’t know if it was because of pain, or if she was just extra fidgety.  She didn’t act like she was in pain, she just wasn’t very comfortable I guess.

December 20- They tried to get blood from Sarah this morning, but after four attempts they gave up.  Either Sarah is an extra difficult case, or they just don’t have very good technicians.  My wife showed up soon after the attempts and was not happy when she got the report.  She is very sensitive to all the poking they attempt to do, so she went straight to Sarah’s cardiologist and had him cancel the order so that no more attempts would be made.  It worked.  Sarah’s neurosurgeon gave her a final checkup this afternoon and then released her.  Everything went really well and recovery was right on track.  Sarah is HOME and here to stay for a while.  We were really blessed that everything went so well with no complications.  It’s pretty amazing to me how fast she has bounced back from all these major surgeries, despite the problems that still exist.  She’s a pretty special girl and most certainly, she’s being watched over by her Heavenly Father.