Saturday, May 3, 2014

Surgery, then back home away from home

Wednesday morning we had to be at the hospital at 7am for Jacob's surgery.  We arrived and made it through the preliminaries pretty quickly, finally settling in to the Interventional Radiology for our final wait.  We met with our doctor, his nurse practitioner, and anesthesia. Meanwhile Jacob played with a new puzzle (his favorite thing) that the nurse gave him, as well as various toys and the awesome bubble machine.  Luke was pretty impressed with it too!

Finally it was time, and Jacob and I headed into the OR with the team.  His anesthesiologist was amazing, and this was the least traumatic "go under" he's had.  The anesthesiologist was talking to him about how he was going to go into space on a rocket ship and there wasn't a lot of oxygen there so he would need to wear a mask.  We were all going to count down together and then yell "blast off" as loud as we could.  And that's exactly what we did! A room full of surgery staff all counted down and yelled "blast off" at the top of our lungs for a scared two year old little boy to yell his blast off into the mask as non-traumatically as possible.  No holding him down or anything.  I held him and once they kept the mask on, he fought for a minute but quickly went out.  We laid him down on the table and I kissed him and left him in their capable hands.  This is always the hardest part for me, and it was this time too, but not as bad as usual, with the ease that he was put under.  I am very thankful for this compassionate, creative anesthesiologist. 

We settled into the waiting room, receiving updates every 90 minutes from the surgery liaisons.  All went well, and our doctor came out around 12 when he had finished.  He was very pleased with how things went.  The work he did last time was successful, as when he injected dye into the area that invades the pleura (lung lining), it did not go through.  So all the extensive gluing he did last time effectively sealed up that area, and there was no new growth.  That was a huge victory, as the pleurisy that results from treatment in this area causes the worst pain for Jacob.  So we had hope for a smoother recovery.  He was able to treat an extensive area this time, even extending his work onto the lesions on Jacob's back.  He is hopeful that maybe it will take only one more treatment in July to get him where he needs to be.  After they got his paralytic reversed, and got him extubated, we were brought to recovery where he was resting peacefully.

He looked much better this time compared to last time.  Much less swelling in his face, and no blood in his urine.  Since he had so much trouble with that last time, they started giving him bicarb during the case to hopefully prevent this complication, and it worked.  His urine output was a bit low however, so he still required several saline boluses in addition to his maintenance fluids.  He only occasionally needed oxygen, which was a great change for him.  They also loaded him up with pain medicine, since he had such a tough time upon awaking last time.  Again, success, because he woke up calmly and quietly.  He woke up and told me he was scared, and I climbed in bed with him and held him, and he went back to sleep.  But none of the terror and pain like last time. 

We stayed there several hours where he would wake up at intervals and talk to me.  Sipped some juice, and told me when he was hurting.  He was so brave and I was so proud of him.  

Late afternoon we were moved to a room.  He did well throughout the evening, was in some pain, but not unmanageable.  He had a decent night, but did throw up the small snack he ate during the night.  Morning came and he looked pretty good, and ate some breakfast.  They had turned off his IV fluids during the night and changed his pain medicine to PO, but things quickly went south when he threw up his breakfast and his pain meds.  A couple hours later, he threw up again, his next dose of pain meds.  At this point he was really hurting and very weak. 


The doctors quickly made the decision to put him back on IV fluids and narcotics, and try to get him back in a good place.  With these plus a dose of Zofran for nausea, he went to sleep for a couple hours.  Upon waking up, he perked right up and even felt up to a walk to the playroom. 


He played there for a bit but tired quickly and was ready to go back.  He was hungry and wanted to eat some dinner, but afterwards started to get sick, and needed another dose of Zofran.  At this point the doctors decided that he needed to stay another night.  I was disappointed, as I really thought we would get out, but I knew that this is what he needed.  He did well through the night, and they turned off his fluids and switched back his narcs to PO at 4am.  He did well, kept his breakfast down, got up and was playing, clearly ready this time. 

Our room had a little alcove that looked out over the courtyard, which was the perfect spot for Luke to play.  By this time, Jacob was anxious to get out of bed and join him.



We rattled the cage a bit and managed to get discharged around noon.
After picking up his prescription, we went back to the Yawkey Inn in time for lunch, and a much needed nap for all parties.  The 4 of us slept til after 6pm!  We went down to the kitchen and made some dinner, a much welcomed change from the past 2 days of hospital fare.  The boys played in the playroom a while, and we headed back to our room, watched movies, and stayed up late (after our long nap).  We got up this morning, had breakfast, visited with some friends we made on our last visit, and since it was such a beautiful day, went outside and played on the porch. 



The Yawkey Family Inn, as I said last visit, is beautiful.  It truly is a refuge away from the hospital.  It was such a relief to get back here after being in the hospital.  They truly try to make you as comfortable as possible, with plenty of space to relax and the boys to play.  I am so thankful to have such a restful place for our "home away from home."  We fly home on Monday, so will spend the next day and a half resting, possibly getting out a bit if Jacob feels like it.  Please continue to pray for him as he recovers.  Though not as bad this time, he still has some pain, and requires pain medicine to keep it under control.  He also tires easily, and doesn't have his appetite back yet. 

Thank you to all who gave this week in the "Give a Pint for my Half-Pint"  Blood Drive!  This cause means so much to us, and the on site drive at SBC Wednesday gave me something positive to think on during the long hours of waiting.  We are so thankful for all who took part.  I haven't been able to get away from my boys yet to give, but am hoping to do so tomorrow at the blood bank here at Children's Hospital Boston. 

Please pray for Jacob's full recovery, so he can be back to his usual Jake self, and enjoying "today's miracle."  Love to all of you...