Thursday Evening Updates

This morning Eli and I got to cuddle for about 30 minutes.  He was fidgetty and upset so the nurse thought it would be a good opportunity to give it a try.  He did pretty decent.  His resps were higher and his O2 was a bit lower, but all in all he did pretty well.

This morning Eli was also a bit wheezy with more crackle in his lungs.  By early afternoon his sats were hanging out in the low 90's.  So they did his IPPB and decided to leave him on BiPAP to try and help inflate his lungs some more.  At this point we were informed that the CT showed full on pneumonia in BOTH lungs as well as lung collapse.  They decided with his increased need for O2, the fact that he was still retracting, and the sounds of his lungs that it was going to be best to move him back into a full PICU setting.  So here we sit.  Since being back in PICU he has done great on high flow O2 mask and hasn't required BiPAP.  The intensivist came in and spent some time going over his history and all of this current illness.  She understand him being a super complex kiddo and does agree that Eli can do things quickly and dramatically.  That being said at the moment he's doing really well considering everything that is going on.  The secretions are still super thick and super far down so that's still a major hurdle we have to get over.  They are unsure of if he's at the worst of it or if it's going to continue to get worse before it gets better.  So right now it's a wait and see game.  It's really up to his little body.
So currently PICU is maintianing where he is at and waiting to see what he does this evening.  Bob and I are beyond exhausted, especially in light of all of the last minute dramatic changes today.
We will have alot better idea of where we are in the next 24-48 hrs.
oh and on an extra side note...Eli woke for a few while here in PICU and smiled!!!  :)  It was the most beautiful smile ever!!!
More updates tomorrow!
In closing here is a pic of little man with his brand new sock monkey with a mito ribbon!!!

Final Cultures and Labs Bearing Answers

Well we just got Eli's final cultures and labs back.   Not only is Eli's right lung full of pneumonia but he also has Metapneumovirus (closely related to RSV).  So not only are his lungs blocked and full of fluid but so are all of the tiny tubes that carry O2 back and forth.  She said that Eli is very ill and that this isn't something he will move past quickly.  She expects to see him hospital for a few more weeks.  The meds we are on and all of the treatments are the best that they can do right now.  They aren't at the point of leveling off yet, so we still have to reach the plateau of it all and then finally start the weaning off process.  They are hoping that they can keep his lungs expanded as much as possible to help keep secretions from settling.  He will continue to receive high O2 supports as well.  They are hoping that the increase in feeds won't put to much pressure on his lungs and his breathing so this is something that will be watched closely.
Neuro never came yesterday so she is pushing for them to come today.  She is hopeful that he will fully recover and go back to the same neurological state we were at before but that it is to early to tell.  She said he is unfortunately dealt with being hypoxic and that is what is causing him pain and panic.  She said that she isn't surprised that he isn't comfortable with allowing us to move him as when he's moved it's even harder for him to breath causing more hypoxia and she said he can feel that when it is occuring.
So again we are trying to absorb all of this information and hoping that we are as strong of fighters as our little man because the doctor made it very clear that we have a long road ahead.

Wednesday ( I think)

days are running as a blur at this point.  Here are a list of facebook posts for the day to atleast keep those people updated that aren't on facebook but do read my blog!

Morning resident rounds have finished up. Eli's right lung is sounding worse and he's wheezing and secretions are sooo sooo thick. Neurologically something is still very deeply off. Pain is controlled until he's touched or moved. Fevers still. They are calling in Eli's pulmonologist and neurologist for consults today. We appear to still be missing something, but unsure what. We will update today as we know more. All of the thoughts, prayers, texts, posts, and emails are greatly appreciated!!!! Thank you!


docs all rounded. pulm was called and they came by. Waiting on neuro. The did critical labs to check his blood gas. pulm thinks we need to back down greatly on robanul, adding a new med, and is thinking bipap full time is needed. He's concerned on how thick the secretions are. Also breathing is wearing eli out so bad. he's still dehydrated although he's getting almost double his fluid needs. we are waiting on neuro as everyone agrees he isn't neurologically normal. Also we are losing the IV so they want to put in a midline, which is like a picc line. So they are calling hemoc to discuss the risk of clots and what we need to do to prevent. Eli has opened his eyes once or twice briefly, still having alot of pain response to movements and touch, and hasn't peed since 6am.


Vascular access is getting ready to run a midline, which is like a picc line but doesnt go all the way into the chest. Lasts 1-2 weeks but can be rethreaded to make into a picc. Hemoc wants lovenox restarted. :( With the line and eli refusing repositioning because of pain we will now go on lovenox injections BID. They are starting IPPB as well and hoping that will help him some with his breathing. They have also started J feeds at 10ml/hr to see how his body will handle. Still waiting on Neuro.


Intermittent Positive Pressure Breathing (IPPB). how it was explained to us is that it is like a bipap concept where it will help push special meds and breathing treatments down into his lungs which opens things up deeper helping to get more meds in there better and can also help push out and break up some of the pneumonia. He gets his first one here in a few so I will have a way better answer after actually seeing it in action. :

Resting earlier this morning

Resting

his brand new midline in his right foot.  They got it on the  1st stick!!!!

And lastly in news the oldest 4 kiddos have headed for a mini vacation in Wichita with my parents.  My parents have been up here over Christmas but have taken the kids back there for a few days.  The kids will enjoy a mini break away!
More updates later this evening!

Evening update

Docs have made evening rounds. Some changes will happen tonight. Starting him on some new pain meds and increasing some as well. Giving him some benadryl to try and help comfort. Fever is back up (103.3), and he's retracting and wheezing some again. sugars have been stable. Still only using IV. Will trial J tube tomorrow. Also attempting to lower his O2 a bit to try and figure out how much he's requiring and how much is just being given as extra. The biggest priorities for the night is to help handle the pain. His mental status is off and he's very aggitated and uncomfortable. He is still refusing to open his eyes or have any interaction with us. Hoping to see some changes tomorrow. Oh and the ECHO came back showing that his damn blood clot is still there, small but there. Damn clot.

Early Evening Update

Eli had his CT scan.  They ended up having to go an LMA instead of a full intubation.  He did decent.  Immediately following they did his ECHO.  We got back to his room and he was still having alot of trouble with breathing and secretions and such.  
well the good news is he doesn't have a blood clot in his lungs. The bad news is his entire right lung has a very bad pneumonia. They are changing around his antibiotics and putting him on 2 high dose ones. They are also upping his pain meds as he's still in alot of pain, to the point we still can't hold him or touch him. He's going on 48 hrs with only 1 wet diaper. The goal for tonight is to get all the new meds going and try to get his pain a bit more under control. We are still waiting on the results of his echo.
As always we will update as soon as we know more!

Early Afternoon Update **Updated

What an emotionally draining morning.
The residents did first rounds this morning and she was concerned about the changes in Eli's breathing.  he is requiring more O2 and is retracting, wheezing, choking alot, and in general working very hard to breath.  The team all met and spent a ton of time going over Eli.
They have decided to run every single virus panel that is available to them.  They also have started a high dose IV antibiotic as they are concerned about pneumonia.
He still isn't awake or alert and we are at 24hrs of this.  His fever is currently down, but unsure how long that will remain stable.
The doctors all voiced a deep concern over how drastically sick he is and how they are unsure why.  they are also concerned about his heart and the pressure it is currently under.  they have called his cardiologist and ordered echos and a full heart workup.
They have also spoken with his pulmonologist and are starting him on cough assist every 4 hrs as well as increasing all of his rescue breathing treatments.
They are going to be doing alot of things in a short amount of time.  The doctors were very serious and very concerned with the downward decline of his respiratory status and the lack of waking and such.
He did go down to get his GJ checked and the placement is good, his intestines are just not sure if they want to properly function yet.  Currently he's only on Iv fluids and meds but we will start some trials with the J tube at some point to see if we can get something pushed thru.
We are exhausted and so is Eli.  We are nervous about what is happening and nervous about the doctors uncertainty and concerns.
Like always we will update more as we know more.
We appreciate all of the kind thoughts, prayers, emails, texts, and phone calls!  It is so nice to know that we aren't alone and that so many people are joining together to support our little man!

Updated 12:35pm

how things change so quickly in the hospital. 103 fever. doc came in. apparently eli is the talk of the hospital. They are taking him to a CT scan to make sure he doesn't have a blood clot in his lungs. With a blood clotting disorder and a history of blood clots they think it's a good idea to check. they are hoping to make it thru the CT without any anesthesia or intubation as it will be sooo hard to wean him off afterwards with him being sick.

Eli updates

Eli woke sick Christmas eve.  By mid afternoon his heartrate and resps were very high and his temp was around 101.5.  Called the doc and they had us take him in to the ER.  They did Xrays and ran alot of labs.  His lungs looked pretty good, and his stomach xrays showed alot of gas but didn't appear to be an issue either.  We were sent home, thinking it was a virus and to just see how he did.
Christmas morning Eli had a 103.4 fever and was very lethargic.  Still very high heart rate and resps.  Doc called.  He had us give a higher dose of tylenol in hopes of getting everything back under control.  Eli pretty much slept the day away.
Eli woke up the day after really struggling.  his temp was still pretty high and his heart rate and resps as well.  But to add to it all he was retracting a bit and grunting with his breathing.  By this point he could barely hold himself up.  Called the docs again and they had us take him into the main campus trauma center.  We walked in the front door of the ER and Eli started choking.  Next thing everyone knew there was blood coming out of his nose, mouth and stomach.  We are obviously rushed back to a trauma room and people came from every direction.  They immediately type and crossed him and had the blood bank hold blood.  Ran tons of labs and xrays.  Eli had to be put on 6liters/min O2 by mask and was put on tons of monitors.  By this point his heart rate was 180's and his resps were around 77.  His J tube and intestines stopped working and so did his urinary system.  Eli was quickly admitted and transferred to the surgical / PICU floor so he would be close to all units.  He became even more unstable once in his room.  His temp shot up to 104.4, heart rate and resps even higher.  His blood sugar dropped fast and he had a full body grand mal seizure, followed by 2 hrs of shaking.  It took a while for his blood sugar to finally stabilize.  He has yet to wake and has been in quite a bit of pain.  If he's touched or moved he winces and cries out.  His secretions are unmanageable for him.  He's not got the energy to cough and with his stomach and intestines not moving there is no where for it all to go.  The docs are concerned to suction to much with the major bleeding from earlier.  Eli will start choking and you can hear it all in there, and he starts panicking which makes it even worse.  We are doing everything we can to help him, and trying not to move him.  Within the last hr his blood pressure has dropped as well, now resting around 70/32.  His O2 has also dropped some, but not wanting to turn his O2 up much more, because we don't want to dry him out to much, again after all the bleeding earlier.
The plan is to simply get thru the night so we can start investigating in the morning.  They have a ton of tests ordered and need to get his main docs on board.  Right now he's getting vitals every hr, a TON of tylenol, he's on IV fluids and meds, and has cold rags being constantly rotated out. He's only peed once in 24hrs, so that is being watched closely as well.  There are emergency meds and emergency plans in place to deal with the blood sugars and seizures and all of that.  His doc and nurse tonight are really good and have been communicating well and really staying on top of things.
bob and I are resting in shifts, with no actual sleep involved.  We are exhausted and really scared.  Eli has never been this sick and the docs have never been this unsure of what is happening.  Please keep my little guy in your thoughts and prayers as he really needs it!
Here are 2 pics from last night.

A Normal Moment

Monday evening I was working on getting Eli ready for bed.  This unto itself is a LOOONG process.  He was playing with some toys on the floor while I got ready to start meds.  He comes over and starts playing with his fridge door.  Slamming it and trying to pull it open.  He grabbed it and tried to pull and I held the door so he couldn't slam it into himself.  He tipped over and landed on the carpet, busting up laughing.  I of course laughed back.  He got up crawled over and grabbed the cup full of syringe plungers and threw it on the floor.  He immediately started laughing.  I laughed,  picked them up, put them back, and he immediately did it again.  This went on 3 or 4 times with him laughing as hard as he could each time he threw the syringes over.  I of course laughed in turn.  It was one of the most precious moments ever.  I scooped him up and hugged him so darned hard.  For Eli and I this WAS communication.  This was his game.  For Eli this was a total normal kid moment.  It was so amazing.  It was a game that Eli and I were able to simply play interacting back and forth.  For us this was HUGE.
I can't wait for more experiences like this.  I hope we get more, and I hope we get them soon.

Care Conference

Today was Eli's care conference.  We were there for a few hrs.  It was probably the most exhausting meeting we have ever been to.
I honestly don't have the energy to go into all the details so I will give highlights!
1.  We are going to slowly begin backing down on the robanul.
2.  We are going to add a new medication that's given by nebulizer.  It helps lower secretions and supposedly has less side effects.
3.  No trach right now.
4.  O2 can be used from 1/2 to 1 1/2 liters without needing to call the doc on prior auth.  It can be used day and night.
5.  Hold on the BiPAP right now as he chokes and gags so much worse because it's pushing more secretions down.
6.  Lastly and most importantly.  Eli's heartrate is very high and so are his respirations still.  He is also consistently running a low grade temp as well as having alot of bright red spells.  His docs believe he's experiencing some respiratory distress issues.  They also believe the robanul is contributing some.  They also believe that Eli's heart is in general struggling to keep up.  It's having a hard time keeping up with pumping enough blood to his body, keeping things regulated, dealing with the respiratory distress, and all those other things.  They aren't sure why this is happening, beyond the fact that Eli has this horrible fucking disease.  Damn Mito.  His cardiologist is concerned about Eli's body using up so many heart beats so fast, and he's concerned the long term stress this is putting on his body.  He will be watching closely for signs of Cardiac Myopathy as these issues increase the risk.

Basically we are going to try a few things, change some others, and simply deal with the fact that Eli's needs are again changing.  We have settled in decently to the use of full time O2, and we do definitely see improvements with it.

We are most concerned about the heart issues.  There are a few organs that are obviously the scariest for us as parents and this is definitely one of them.  We are concerned about the risks, and so are his doctors.  We are at another brick wall, where the doctors can't fix it and they have nothing more they can test, nothing more they can try, nothing more they can do, but wait and see.  These are the most frightening situations for us.  As parents we want it fixed, NOW.

There was alot of emotion at the meeting, by all of us.  After we left we stood in the parking garage with Eli's primary speech therapist talking and crying.  She has gotten to be a close friend of our families and we value her so very much.

We came home from the meeting and immediately following I got another phone call from Emily's school.  Her asthma was flaring up worse than yesterday and she had required 2 breathing treatments in less than 3 hrs.  We called her doc and they said ER.  We got there and her chest was hurting and she was having a decent bit of trouble breathing.  They gave her steroids and changed around her entire asthma action plan.  She is now on a more concentrated meds for her prevention meds and for her rescue meds.  Instead of using the nebulizer she is now using inhalers with spacers to get the full dose of meds.  She will also continue steroids for atleast the next 5 days.  She's doing a bit better this evening but still pretty sore and wheezing a bit.  Hopefully after her new meds tonight she can get some decent sleep.

Other than that the older kiddos are busy with finishing up school for the semester.  Tomorrow is the oldest 3's last day and Monday is Ari's.  So alot of Christmas parties coming up!  The kids are super excited!

More updates soon after we have time to absorb all this information.

Santa

Eli's therapy group hosted a night with Santa and we were able to go this evening.  Eli cried the whole time he was on Santa's lap but had fun the rest of the evening . The older 4 enjoyed themselves!
Here's a photo of all of them!

Eli's again struggling

Eli is still struggling.  We went from the aspiration and requiring O2 to worse.
Eli met with his complex doc on Friday and we spent 3 1/2 hrs discussing everything.  He gave us permission to go ahead and trial out full time O2 to see if we can keep his heart rate and respirations down.  This is in hopes of avoiding a trach.  Eli's normal O2 use is 1/2 liter while sleeping.  1/2 didn't work so we went up to 1.  Then he started coming down with something or his aspiration getting worse.  He's now on full time around 1 1/2 liters, has needed tons of suction, emergency breathing treatments, CPT, and is being kept upright at all times.  His temp is up and so is his heart rate and respirations.  He's barely coughing and it's pretty weak.  His lungs are now sounding junky.  I've already talked to his pulmonologist 3 times this morning.  He's now having him on BiPAP with O2 and his breathing treatments run thru there.  We have already had to cut back on his rescue treatments as they are making his heart rate even higher.  CPT still.  Increasing fluids.  He again discussed the need to stop the robanol.  He's not only concerned that it's raising his heart rate and increasing his respirations but now he's concerned that it's making his secretions too thick, and for a kiddo who doesn't have enough energy and muscle strength to cough, it's making it near impossible for him to cough it up.
We all will be meeting on Dec 15th, first thing to discuss all of this.  We were confident that we were making progress on avoiding the trach, but after talking to his pulmonologist, we aren't so sure that we have alot of arguments left.  He's worried and when Eli's doctors get that worried it really scares me.
The goal is still currently to keep Eli away from the hospital so our doc is calling here multiple times a day to keep checking in and changing nursing orders and sending med orders straight to the pharmacy to deliver here at home.  Fingers crossed we can ride this whole thing out here.  I am sooo thankful to have nursing in home 12 hrs a day 6 days a week.  I have no idea how we would be getting thru this round without them.
More updates soon.

Happy 2nd Birthday!!!

I don't have time to get a full blog post up but I did want to post the below pictures!