Wednesday, August 7, 2013

Overdue Update

Most of you know Eli was discharged from the hospital back in June.  June 4th to be exact, which was seven weeks after the pre op day for his big 'ol Fontan the next day.  When he came home from the hospital, we knew he still had a pleural effusion.  The pleura is a thin membrane that lines the surface of the lungs and the inside of the chest wall outside the lungs. In pleural effusions, fluid accumulates in the space between the layers of pleura.  Eli battled with effusions throughout this post op recovery.  These are very common after this surgery, so we were prepared for him to have them.  We were not prepared for them to still be a nuisance almost four months after surgery. 

His first couple weeks at home were pretty uneventful.  Well, uneventful as in his breathing wasn't labored, we had no issues with his newly implanted pacemaker, and basically no surprises.  What was eventful was adjusting to his new medication regimen, including being on oxygen anytime he was asleep and all the equipment that goes with being on oxygen (and trying to keep oxygen on a two year old), getting back into some sort of a routine, resuming nighttime feeds of a special formula that could only be at room temp for four hours but had to run for nearly twelve (meaning mom or dad was up several times a night to add formula and administer nighttime meds), and adapt to the low fat diet he had to be on for several weeks to fight the effusion.  Not to mention, trying to adjust to being at home after spending seven weeks in the hospital.  Eli started having night terrors (which NEVER coincided with a formula addition) and he still has them sometimes.  He did that after his second open heart surgery and it's lasting longer this time.  That makes sense to me because he's older, he remembers more, and he was in the hospital for much longer.  

After things started to settle into somewhat of a routine, one night we noticed he had a fever.  I don't remember exactly what the temp was that night, but it was well over the temp we were told to call the doctor about.  The fever broke after one dose of Tylenol, but it happened again the next night.  And the next.  He was pretty normal during those days but spiking fevers at night.  Of course our family doc was on top of it, but since we had an upcoming cardiac check up, we waited to see what they wanted to do.  The cardios told us if it happened again to take him for lab work while his fever was high (and before administering any meds to bring it down).  So the next night, I carted Eli off to the hospital about 10pm when he spiked his fever.  He had two cultures and other blood work drawn.  The cultures came back negative, but some of the other lab work was kind of off. 

As oddly as the fever spikes began, they subsided.  What we were left with were random, daily low-grade fevers.  For the most part they didn't seem to bother Eli much.  His oxygen saturation levels were pretty consistent and his play time, appetite, and sleeping weren't changed much (as much as you can be consistent for a post-op two year old!).  We began a course of having a chest xray and blood work about every two weeks. 

After his last round of xray and blood work, Dr. Abraham (cardiac surgeon) said he wants Eli to be seen by the Infectious Disease doctor who handled the case while Eli was inpatient.  If you don't remember, Eli was diagnosed with staph aureus in his blood a few days after surgery.  Because of that, he was given a PICC line and about five weeks of antibiotic infusions.  We expected to come home with the PICC line and administer the antibiotics ourselves, but since other factors kept him inpatient for so long, he finished the regimen and did not have to come home with the PICC line. 

So now we will take him back to Indy next week to see Angie, the nurse practitioner for Dr. Belcher (Inf Disease doc).  Angie used to be the NP for the PICU (pediatric ICU) at Peyton Manning Children's Hospital and has been part of Eli's care since the afternoon he was flown there.  She was involved in his care for his first two open heart surgeries and we when we went in for Eli's third we were sad to hear she had left her job in the PICU.  As fate would have it, she was working for the doctor who was called in to consult and treat Eli.  Of course we wish Eli didn't require care from this department, but since he does, it's a huge comfort to know it's someone very, very familiar with his case.  We were very comfortable with and liked Dr. Belcher a lot, but Angie had an opening before he did and we are just as comfortable with her.  Frankly, she'll report to him anyway, so in this case it's like having two experts involved.

What do we expect from this appointment?  I'm not sure.  I think we may be past the point of "give it two more weeks and we'll see what the labs show."  This is just me guessing.  I think he'll probably have another round of antibiotic treatment.  That itself doesn't bother me.  What I'm worried about is how it would be administered.  If it's an oral med (which we would put through his Gtube) that would be manageable.  If it has to be intravenously administered (into the bloodstream) that means he'll have to have a PICC line again.  That would be, at minimum, an outpatient procedure where he is sedated and they surgically place the line.  If he has that done, I don't know if they would keep him overnight or longer to make sure it's working before sending him home on antibiotic therapy.  Then there's the whole issue of having a two year old with a direct line deep into his body requiring special care.  Again, this is me thinking ahead (good idea?  We'll never know!).  You may be wondering why we would actually do anything if he's acting okay.  Well, there's a chance ID (infectious disease) will "just watch" a while longer.  What we have to remember is that Eli had a very serious blood infection and sternal incision abscess recently.  Is that totally cleared up?  His sweet little heart had many incisions during his Fontan and mitral valve repair, the infection in his bloodstream could easily get into those incisions and cause major problems.  He also has a pacemaker.  If his body is reacting to the presence of the pacemaker, it may have to come out. 

There's a lot of what ifs we have to consider while trying to not get stressed about it until we have to!  It's really hard not to think about how serious this could get.  Life has been tough since the Fontan.  Obviously the length of his hospitalization was not what we expected.  Once we got home, things did not get any easier.  We would do anything for either of our boys, but it's still hard operating on very little sleep, dealing with insurance issues and case managers, keeping up with all the medications, and still trying to deal with all the normal, daily life things that need done like laundry, dishes, grocery shopping, meals, and spending time with the boys that doesn't revolve around medical issues.  

Someone was surprised recently when I mentioned I hadn't been able to work since before Eli's surgery.  She asked if it was because I had to give Eli medication throughout the day.  I told her it wasn't hard to give the medications, frankly a monkey can do that.  In all honesty, Eli pushes a lot of the meds through the tube himself.  Zachary has made it his job to hang the bag and enter the settings on Eli's feeding pump each night.  The hard part is keeping track of what needs refilled when, keeping all his supplies stocked appropriately, keeping enough oxygen tanks on hand along with tubing and monitor sensors, and making sure we have the right formula, bags, tubing, extra buttons, and cleaning supplies stocked for his feeding tube.  Thankfully all that's through one pharmacy, and they honestly make it as easy as they can for us, but I'm still on the phone with at least one department once a week (if not more) to keep up.  That's not to mention scheduling his appointments, going to his appointments, going for his different tests, scheduling and being present to get the deliveries from the pharmacy, and calling status reports to doctors.  I haven't even mentioned there are two kids to take care of in the midst of all that.  In addition I had a serious health issue that couldn't be ignored about a month ago.  All of that and more while trying to do those daily chores, all the extra medical-related stuff, and, more importantly, trying to make our family feel like a family again after a really rough, some could even say disappointing four months.  So, no, I haven't had the opportunity to "work" yet.  I haven't had more than two hours off from this job since the end of March.  A paycheck would be nice but it would be hard to beat the precious slobber and sneaky tickles I get at this job!

While I'm on my emotional high horse, I'm giving fair warning now to the next person who says anything about the "convenience" it is that I'm a nurse and have a child with such medical issues.  It is not a convenience and I'm tired of people assuming I'm automatically equipped to deal with this because I passed a test that gives me the privilege to sign RN after my name.  There is no class that teaches nurses to change tubes in your own child's body, to explain to your other child that the baby in the magazine without tubes is "normal," to wonder if there's anything you could have done differently during pregnancy to save your child and family from this, to hold your screaming child through yet another blood draw or dressing change, to hand them over to the medical team who literally have his life in their hands, or to watch your child suffer surgery after surgery after procedure after blood draw after surgery in hopes of saving him from death.  It also infuriates me for all the wonderful heart parents (my husband especially) who aren't nurses and their heart warrior is doing well despite their lack of a nursing degree. 

I don't mean to give the impression that we have a crappy life and I'm unhappy or anything.  Yep, it's been a hard four months and counting.  Life is hard, but compared to what?  Not having Eli?  Unthinkable.  These are the boys we've got, the life we've got, and the life we're looking forward to living.  There's not much we'd change...probably just a little more sleep (then maybe I could safely work a shift at the hospital?!?!).

We have had fun in the past few weeks too.  If you read the last post you know we went to Holiday World last week.  We thought about not taking Eli, but decided it had to be a family vacation and we are a family of four.  It's another example of trying to balance keeping him healthy while trying to be normal.  Bryan and I have had two dates and also got to attend his high school reunion.  While there, I got to talk with a few of the other "Wives of the WHS Class of '93." One of them I've known since my high school days.  She very nicely asked me if I was always so upbeat.  Her question really shocked me because I don't feel like I am all the time.  I usually feel like I'm a disorganized mess who barely keeps my head above water.  She said that my attitude always seemed positive even when things weren't going well.  It made me realize that I do have a pretty good attitude.  I hope that doesn't sound conceited.  I just mean that I've learned I cannot let this get to me all the time.  We're learning to handle it the best way we can.  I have my moments.  I have lots of moments.  One of them is illustrated in a rant a couple paragraphs above this.  But I have other moments, positive moments that I wouldn't trade for anything. 

The latest on Eli?  He's nuts.  Seriously, the kid is crazy.  He's a lot of fun, he's silly, he's affectionate, he's moody, he's clingy, he eats like a horse, he barely eats at all, he adores his brother, he hits his brother, etc, etc, etc. He's talking a lot more now.  He can name most of the Cincinnati Reds players by sight (Bryan's doing).  He's starting to get into dinosaur play and even proudly announces that his favorite is T Rex (Zachary's doing).  He's still pretty wary of strangers because he can't let himself trust a new person too soon.  I don't think anybody would be surprised to hear that after all he's had to go through!  Eli is learning a lot from Zachary and the two of them are constantly imitating each other.  If Zachary is comfortable with someone, Eli opens up a little more.  When it's just the four of us, Eli has us laughing all the time with his antics.  He'll definitely be a class clown someday. 

We enjoyed some of the Fourth of July festivities offered at our local park.  Both boys have had haircuts since this picture, but this photo shows both of them smiling at the same time with eyes open and no one is hitting or roaring like a dinosaur.  These are our precious babes!!!!

In other news, Zachary is starting kindergarten Friday.  I am so excited for him because he's getting excited.  I'm also very sad.  I cannot believe my baby is going to be away from me for that long five days a week and I'm supposed to be okay with it.  We were just separated for seven weeks.  I feel like we just got back some semblance of family life and now a large part of it is changing again.  Yes, I know that's selfish, but it's how I feel and I do think I'm justified to feel that way.  I have given serious thought to homeschooling.  We won't be doing that for two major reasons:  1) Zachary needs the interaction with other kids his age and 2) I don't want to homeschool!  I am many things, but I am not an educational teacher.  Can you imagine the backward, socially inept fools graduating from my classroom?  I know, I know:  Teaching starts at home.  I get that and think we're doing a good job so far, but we're at the point that I'm looking forward to using his teacher, homework, schoolbooks, and newfound knowledge to guide us through the next levels of his education.  I am not against those who homeschool.  I think it's an incredible thing to be able to do that for your child.  Who knows what the future holds?  It may be something we have to consider for Eli someday.  Or Zachary.  Until then, off to school Z goes!  Be on the lookout for first day of school pics. 

Specific Prayer Requests:
- that we're able to accept and deal with whatever we need to do about Eli's continued effusion, fevers, and lab work.  That this appointment with infectious disease goes well and they have an "easy fix" for Eli

- for Zachary to have a wonderful experience at school.  Yes, he had great experiences at preschool for two years with very caring people, but now he's entering a new school with an all day, five days a week schedule.  This will set the tone for his next thirteen plus years of education and I really want it to be positive for him

- for Bryan and me as we continue to strengthen our family, our marriage, and as individuals

As always, thank you so much for the kindness, caring and prayers. 

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