Wednesday, August 28, 2013

Busy Times...Days 4, 5 and 6

Monday, August 26, 2013:  Today was a very hard day for many reasons.  Today's the day Eli is going for surgery to drain fluid from his right lung.  It's more and more obvious that he needs this as the night and morning pass.  His sats are steadily declining despite being on the vapotherm.  He was satting in the low 80's/upper70's as he was taken to surgery.  His breathing was faster and labored.  He slept all morning but it wasn't a peaceful, restful sleep.  It was an exhausted, his-body-is-working-too-hard-at-its-basic-functions-to-stay-awake kind of sleep.  That's hard to watch. 

Today was also difficult because it's the first time Bryan and I haven't been together when Eli's having surgery.  It was a tough decision to make, but I think it was the right one.  Bryan went home with Zachary on Sunday and was with him after school Monday.  I'm not sure how much work Bryan accomplished during the day, but my heart hurt for him all day knowing how worried he must be. 

Eli's surgery had to be bumped from noon to two.  Transport came to get him about 1:30 and we went to the all too familiar preop area.  Dr. Harrison (anesthesiologist) came out to talk to me about his plan.  The thoracic surgeon (Dr. Ascioti) had come to the room earlier in the day to introduce himself and describe what he was going to do.  He came to the preop area as well and used a surgical pen to write on Eli's right side.  That was confirmation in front of me that they would operate on the correct side.  Then I signed the consent.  Because Eli's sats were so low, Dr. Harrison didn't want to give Eli anything to relax him until they were in the OR.  That meant I could hang out with him until they were ready to take him back, but then I had to walk away from my crying baby so they could wheel him into the OR.  I completely understood the reasoning (Dr. Harrison has taken care of Eli in surgery many times and we really like him), but it's still hard to do.  Then I was escorted to the main surgical waiting room and checked in at the desk.

From here my story takes an odd turn.  I had arranged to meet with someone in the waiting room because I had to sign some papers.  My grandmother passed away earlier this year.  Her house is being sold now and because my dad's name (who is deceased) was on the deed as well as my aunts and uncles, my sister and I had to be part of the closing.  I had received an email earlier with an attachment of what paperwork I needed to fill out.  Many copies would have to be printed and I would have to find a notary as well as fax back copies then mail the originals.  I emailed the lady and explained my situation.  She graciously offered to drive to Indy and meet me with the paperwork.  That way I didn't have to print, fax, mail, or notarize anything and I wouldn't hold up the closing proceedings for the rest of my family.  So as surgery was beginning on Eli, I sold 10% of a house!

After she left (she sweetly stayed and talked with me for a while because she knew I was waiting alone, but she had a long drive back), I was going to post the first update I had received from the OR:  surgery had started and Eli was doing fine.  When I logged on to Facebook, my newsfeed was full of comments and announcements about schoolkids in Washington.  Apparently some kid thought it would be funny to plant a note about a bomb in the high school.  As soon as it was found, students were evacuated to nearby buildings.  Zachary's school is one of the sites the kids were taken to.  The only info I had was from Facebook and I know it isn't a reliable news source, but it's the only source I had.  Most people were saying that it was a disaster as parents were trying to pick up their kids.  Some were saying that students were only being released to parents.  I was consumed with fear about where Zachary was and would he be released to my mom, which was our plan since I was in Indy and Bryan was at work.  I figured he was okay since the threat wasn't actually at his school, but I didn't know.  With one child on the operating table and not knowing the whereabouts of my other child, I fell apart.  I was sitting in the middle of a crowded waiting room trying to hide my tears.  I wanted to run across the hall to the bathrooms, but couldn't see and was afraid I wouldn't be able to stand up.  The surgical liaison saw me and came rushing over.  I tried to answer her question about what was wrong but have no idea what I told her.  Right then my phone buzzed with a message from my sister-in-law.  She is employed at the school that was evacuated to Z's school.  She had talked to his teacher who said Zachary had been released with my mom.  Relief flooded through me.  I was able to make my way to the bathroom where fresh tears started but were controllable.  Reluctantly I returned to my seat, surrounded by strangers who were sympathetic but also afraid to look at me.  I'm honestly not usually such a drama queen, but in those 20 minutes I had never been more miserable!  As a side note, I believe a juvenile has been arrested for leaving the false note.  From everything I've heard, the school system acted quickly and appropriately for such a situation and the police efforts were thorough as they searched the school.

About an hour later I was called back to the conference rooms where Dr. Ascioti joined me.  He said Eli did very well and should be able to breathe much easier.  His sats were already 90%.  He removed 350cc fluid from Eli's chest.  Three hundred fifty!  That's equivalent to a can of soda!  No wonder he was laboring to breathe.  Now I wonder how on earth did he stay above 80%?  He's one incredible kid.  Dr. Ascioti told me Eli was headed back to the PICU.  He was still intubated (on the ventilator) and had been given a bolus of pain medication and a paralytic.  Once in the PICU, the PICC team would place a line and then I'd be allowed to see him.  I went across the hospital to the PICU family room.  Sara (cardiac surgical nurse practitioner) came to give me an update that the PICC team had started and Eli was doing well.  About an hour later the hospitalist came to tell me I could see him.  As always, it was such a relief to see him again!  He was still intubated and would come off of that after he was more awake and trying to breathe some on his own.  His face was really puffy, especially around his eyes, but that's expected with the surgery.  He had two drains coming out of his chest that drained into a collection system.  The nighttime hospitalist came to check on him and see if I had any questions.  We were discussing how much fluid was taken off and he invited me to come see the chest xray.  I followed him to the physician's work area and he showed me before and after images.  It was really neat to see the images but also very sad to think Eli had to work so hard because of it.

When Eli was more alert and starting to fight the tube in his mouth, the hospitalist said they could try to extubate him.  At 9:04pm he was successfully extubated and he did great.  He was on the vapotherm again and that would be weaned as the night progressed.  Eli slept really well Monday night.  It was a peaceful sleep and he was so sweet to watch.

Tuesday, August 27, 2013:  Today was a much slower day.  Eli did very well through the night and that led to a good day Tuesday.  During rounds, they decided to keep weaning his vapotherm and try him on regular oxygen.  He transitioned to regular oxygen in the late morning and actually had higher oxygen sats with that.  Because all that fluid was off his lungs, we could actually get a real idea of what his lung sounds were.  Before the surgery his lungs sounded very clear but that's because all that fluid was a buffer that masked the real sounds.  After surgery his lungs were crackly and wheezy.  That's consistent with the pneumonia diagnosis and now we can actually hear it!  He was started on breathing treatments every four hours.  The respiratory therapist brought in a cute mask with a dinosaur on it, but that didn't make a difference to Eli.  He hates wearing that mask.  I think it reminds him of being put to sleep with a mask for the thoracentesis he had last week.  Even though he cries throughout the treatment, he lets us hold the mask over his mouth and nose and he takes the full treatment.  It is definitely making a positive difference for him because he has a productive cough now.

Eli actually slept the majority of the day.  It was again the peaceful, restful sleep his body so desperately needed.  Initially we had plans to get him up a little so he could loosen up some of the junk in his chest.  However, as the day went on and we realized how tired he was, it was decided (mainly by Eli!) that sleep was what he needed.  Everything else was moving in a good direction and he was discharged from the PICU back to his cool Peyton room on the third floor. 

One concern we had throughout the day was that his abdomen was distended.  After we got back upstairs it was even bigger.  I've actually never seen it so big.  The skin was stretched so thin it was shiny.  Because he was so distended, he couldn't keep his sats up.  The size of his belly was preventing full expansion of his lungs.  He hadn't had a bowel movement since early Saturday morning, although he also hadn't had much to eat since then either.  An xray was ordered to make sure there was no obstruction.  It did not show an obstruction but did show a lot of gas.  During the day he had already been given two doses of Miralax with no results.  A glycerin suppository was given late last night.  He must have passed some gas through the night because by morning his belly was a little softer and smaller, although still distended.  Other than that, he had another peaceful night's sleep.

Wednesday, August 28, 2013:  His belly was still distended today but he did have a little bit of an appetite.  Throughout the day he's had several Goldfish crackers, some Wheat Thins, a few bites of apple, half a grape, a few ounces of milk, a few sips of water, and a some bites of a fish stick.  Three times I've gotten him into a sitting position which he maintained on his own for a few minutes, then several minutes longer supported by some pillows.  He is still very tired and very weak.  He didn't have enough energy to feed himself.  I fed him all but two of the Goldfish crackers.  I had to hold his bottle for him while he drank.  The boy is exhausted and it's showing.  One time he held his bottle but his hand was shaking too much to lift it to his mouth.  That was hard to watch.  I know he'll get his strength back as he heals from this.  For now I'll just enjoy getting to feed my baby again because I know Mr. Independent Eli won't let that happen once he's ready to do it himself! 

He slept most of the day and watched bits of movies.  Because he still hasn't had a bowel movement and the belly is still so distended, he is now getting the glycerin suppositories every twelve hours until we have results.  Results = poop. 

He has taken his breathing treatments much like he did yesterday.  He verbally protests but doesn't actually fight them.  He is still on 1L of oxygen and his sats are typically 94-97% which is an increase from Tuesday night.  I love those numbers!

What's Next?  There's more testing to be done.  So far, any blood cultures taken have been positive for staph aureus.  Eli is on Cefazolin (IV antibiotic) every six hours.  We haven't discussed how many weeks that will go on because we still need some of those other tests.  In the next few days Eli will probably have a bone scan to see if there's any infection settled in his bones (specifically the sternum).  A tagged white blood cell study is probably coming up as well.  His pacemaker still needs to be interrogated to see how dependent on it he is.  I'm not sure of the order of tests and I don't think the docs have set a plan for him yet.  The first order of business is to get him recovered from Monday's surgery and over the pneumonia.  Those things have to improve before we can do some of those tests to ensure we don't get false results due to the healing process.  I think it's very likely that once those tests are done, we'll be told for sure that his pacemaker has to come out.  Once that happens I do not know what kind of time frame we're looking at to be hospitalized, but it will be a long time before we get to that point.  I think we can safely say he'll be here for a couple more weeks at least.  

Specific prayer requests:
- for Eli to poop!
- for Eli to get the rest his body needs to heal, to gain energy, and get stronger
- for Bryan and I to stay strong and find ways to keep our family together despite the distance
- for Zachary as he has to be stronger and more understanding than any five year old should be.

Thanks to all of you for reading and caring about Eli and our family!

No comments:

Post a Comment