Saturday, December 29, 2012

quick and brief

Like always it's been a bit since an update.
So much has happened.  December was hectic.  Eli was inpatient 3 times. The first starting to get sick.  The second he had full on RSV.  That was really rough for him to get past.  The 3rd was hickman issues.  At first it wasn't drawing blood, then it wouldn't flush.  They ended up having to surgically remove it and replace it with a different hickman in a different location.  It was a mess of a month.
Eli is also still struggling with absorption issues.  We have had to switch 1 med over to IV and will be switching another over next week.
Eli will be admitted on January 2nd and will get a loading dose of Keppra, followed by regular doses.  He will hopefully go home on Friday assuming there are no issues with his bodies response to the IV Keppra.  We really need to get his keppra levels up.  We are also working on his lovenox levels as we can't seem to get it spot on.
My surgery is on Jan 8th.  A lot of feelings and emotions surrounding all of that. The holidays kept us busy for awhile but the last thing now to focus on is Eli's upcoming admission and my surgery.
I'm not ready and keep trying to talk myself into rescheduling, even though I know that won't help at all.
I will get more updates up before my surgery!

Tuesday, December 11, 2012

Hell of a Week

Eli was hospitalized Nov 30-Dec 1st.  He was sent home assuming that he would get worse, but far better to be home then in patient around more germs.
By Sunday Eli was starting to struggle.  By Monday he was running a temp, vitals a mess, lungs sounding yucky, and requiring O2.  For sunday and monday eli only peed 3 times in 48 hrs.  By Tuesday he was considerably worse and was needing quite a bit of O2 and alot of extra breathing treatments and such.  Still minimal pee even with fluid increases.  By Tuesday evening he was struggling hard and at this point we had been holding him upright for over 24hrs.  They approved 24hr nursing and they stayed up with him all night. 
Wednesday morning Eli was admitted to the PICU.  His sats were low, his resps were 60-70 and his heartrate was super high.  Temp 102.8 and he was requiring more pain meds and breathing treatments than we can even run at home.
We learned on Thursday that Eli has RSV and pneumonia.  Both lungs were hazy.  Alot of gunk settling into his lungs and alot of trouble moving it all.  They started him on a pretty intense regimin of breathing treatments, CPT, and cough assist.
During his hospital stay alot happened.
His lovenox (blood thinner) levels aren't enough.  He had a major bleed inpatient, as well as clotted off 2 needles.  Strange combos.
He was switched to IV robinul as it was apparently clear that his body isn't aborbing the robinul thru his J tube. 
We also learned that his seizure meds aren't being absorbed either and have had to increase them.
We've had to increase his IV fluids as they just aren't enough to keep him well hydrated.
He had a modified upper GI (barium placed into his G tube) and his fundo is in tact and isn't causing reflux.  So we now know that for sure all of these choking spells are from secretions not refluxing. 
Eli came home late Sunday.  The hospital is full of RSV, Flu A and B, pertussis and rhino virus.  Eli has had pertussis twice so the goal was to get him out of there and get him home where he can be better protected.
He's still struggling.  Temps still, wacky vitals, alot of gunk in his lungs.  Requiring a whole lot of suctioning.  Still can't get him even weaned down on the O2, let alone off of it.  Last night he started having trouble maintaining his body temp, which is normal for him usually, but this time it's the opposite.  His extremities are constantly cold with a slightly delayed capillary refill.  He's NEVER been too cold.  Eli's body has always run super hot.  So this has been a new strange challenge as it's not something we are used to doing, keeping Eli warm!
Yesterday he also had all of his kidney scans.  There is some big improvements to his UPJ obstruction.  His surgeon is really happy with what he saw on the scans and so are we! 

In other household news....the world very clearly didn't stop.
Both bob's car AND my van broke down in the same day...Sunday.  Bob's car is assumed dead.  My van was towed to a shop.  Come to find out while it was parked in the hospital parking garage for a week that it was attacked by a squirrel or mouse.  They chewed thru my spark plugs, my O2 sensory and some other thing that I can't remember.  Ended up costing $450 to repair!!!  The mechanic saved all my parts and has suggested that we file a report with the hospitals parking garage.
Bob, Ben, Ari and Lauren are all sick.  It appears to be the same thing that Eli has.  Sadly for them it has to run it's course.
Last Wednesday Emily and Jace were both sent home with the stomach bug.  Wednesday 70 kids were sent home with it, Thursday 85.  The health dept ended up closing the school on Friday and they did a deep cleaning and de-sanitizing over the weekend.
Jace had his renal and testicular scans last week as well.  Lauren was able to take him.  His doctor (also Eli's primary doc) came to Eli's hospital room that evening.  He informed me that he was sorry to be delivery more bad news.  Both of Jace's kidneys are very small for his size but appear to be functioning well.  The biggest issue is that both of Jace's testicles are in his abdomen stuck with hernias.  He is putting in a referral and  Jace will need to have surgery.  It is unsure right now if they will be sterile or functional after being inside for 9 years.

We finally got the christmas tree decorated last night.  Christmas is right around the corner and I'm so not ready.

I'm pretty much done with it all.  I'm exhausted.  My surgery is in 27 days.  I feel as though the world is beating the fucking shit out of me.  Everything that could go wrong is constantly go wrong.  I don't know how much more I can physically, emotionally and mentally handle.  I'm struggling right now to keep going thru each day.

I will get more updates up soon.  I've got so much to get done today, and a sick Ben and Eli home!

Tuesday, December 4, 2012

Super Quick update

Eli is a bit more stable this morning, although definitely still struggling. We are getting pee, but his doc is still keeping his fluids running high. His temp came down some but is on it's way back up. Resps and HR still up there. He got a tiny spurt of awake this morning and sat up with his ipad but that wore him out. The docs suspect that he has RSV. They will be bringing him into urgent care for the day on Friday to start the IV robinul. Until then the plan is to hopefully stay home and keep working our way thru it.

Monday, December 3, 2012


Eli is really struggling.
He has hardly slept the last 2 nights.  He's been up choking and requiring alot of suctioning.  last night he started not being able to keep his O2 sats up without oxygen.  He was needing suctioning every 15 minutes.  His temp went up, which left him with a high hr and resps.  By this morning he could barely sit up or open his eyes.  He has spent the entire day sleeping and is on O2, needing suctioning and still running a fever.  Yesterday he only peed twice and today isn't going any better. 
This morning his primary doc and I had a long talk.  He's starting Eli on antibiotics.  We also discussed the options we are left with to deal with eli's secretions.  The goal is to get Eli started on IV robinul, hoping that this will allow his system to absorb it better.  If this doesn't work the next option (and last option) is a Scopolamine patch. 
We also discussed the seizures and the neurological changes.  Eli's keppra levels came back incredibly low.  Again either he's outgrown his dose, it isn't working for him anymore, or his body isn't absorbing it properly.  For now he's having us up the dose.
He's thinking that there are multiple things going on here.  The seizures, the secretions, and Eli being sick.  He doesn't believe that fixing 1 will fix all.  He's also not sure right now how much of this is disease progression and how much of it is fixable issues.  He told me he doesn't want to make any promises as he isn't sure. 
He and I discussed the suggestions from the new palliative care doc.  He really likes her and trusts her thoughts and instincts.  He believes that she will be a good fit on our team. 
We also talked about how we hate progressive disorders and how I'm not ready for another progression.  How I'm not ready to lose something.  I'm not ready to take a step back, knowing that there is a chance that we will never regain ground.  Rarely have we regained ground in regards to Eli's health and interventions. 
I'm not ready.  I wasn't ready to learn the true meaning behind the word progression.  I wasn't ready to watch my child suffer thru something this torturous.  I'm not ready to hold my child while he's choking knowing there is nothing I can do.  I'm not ready to feel his body limp against me because he doesn't have the energy to hold himself up. We've been here before and I'm not ready to be here again. 
Please keep our family in your thoughts.  Keep my tiny little warrior, eli, in your thoughts as it's so hard for his little body to fight thru all of this.  Please keep our oldest 4 in your thoughts, as it's just as hard for them to watch Eli struggle.  This round has come on fast, and just yesterday afternoon they were able to sit up and play with Eli as he followed them thru the house.  They will come home from school today to find a very sick little man unable to sit up at all.  Please keep Bob and I in your thoughts as we have hardly slept for 3 days.  We are exhausted and having to make big tough decisions.  Never a fun mix.
We will update as we can.

Sunday, December 2, 2012

Admission and a THIRD birthday!

What a weekend.
Friday Eli was really struggling.  He was choking quite a bit and started to run a fever, as well as incredibly high resps and a high hr.  We ended up calling the doc and they suspected pneumonia.  Off we went.  Eli ended up being admitted and they ran cultures on labs and urine.  The choking episodes are really causing his little body to struggle.
Eli was discharged on Saturday, his 3rd birthday.  We had a quiet evening at home and he was able to open his presents and spend a bit of time with the family.
He had an incredibly rough night Saturday night and was up choking a large bulk of the morning hrs.  He slept in Sunday and has had countless choking episodes today. 
The docs have tried to change around his meds but so far no change.  While we were inpatient we met with a Palliative Care doctor and she is going to be joining Eli's team.  It's time to have some serious quality of life talks and begin to discuss some "out of norm" options for Eli.  She has some ideas and we are definitely on board with discussing them and working out a better plan.  It was really refreshing to chat with her and we are going to be scheduling with her for a full sit down conversation. 

I woke up this morning sick.  I've got a sore throat and a bit of a cough.  I'm definitely hoping that it doesn't progress as I can't afford to be sick. 

I will get more updates up soon.