Author: Sarah

The other day I put Evy in an outfit that I’m pretty sure Daddy has in his size too, complete with BabyLegs and all.  We went out for a little walk and everyone commented on how handsome he is.  They’re right.  Evy was a little fussy    but required no more than a few extra cuddle sessions.  Mama even had him sleep on her chest, which if you know Evan does not happen.  Let me tell you, the view is pretty incredible.  Anyway, during his evening dressing change, his wound looked especially creamy.  It even gurgled like a tiny volcano when he squeezed his pecs.  Kinda like some cheesy yogurt?  Gross  I know.  Well, if you don’t want to see the pic, skip that one in the gallery.

Anyway, it looked a little too juicy.  So this morning the NPs looked at it and decided to put the wound vac back on.  They were thinking the bacteria had recolonized.  They are going to decide on a treatment course in the morning, but considering that he won’t get his vac changed until Wednesday and that was the day we were thinking we were going home, it might be a little while longer.  They aren’t going to colonize whatever the bacteria is because the wound has been open, exposed, and contaminated for days.  So whatever they culture may not be an accurate representation of the infection.  Plus if they culture say  Staph (Staphylococcus is normally   found on your skin so chances are it would be in the wound now) then they will be legally obligated to now treat Staph.  I guess they are just going to work under the assumption that it is the same bug.  Using the wound vac is an imperfect science and sometimes you need to put it on again.  He doesn’t have any fevers or any redness so they don’t think it is any resistance either.  Just need to give it some more time.

 

I figured I could write a long post talking about Evan’s day or how he is doing (great) or how long we will be here (not sure).  But instead I think I will just let the pictures do the talking.  I finally brought my camera to the hospital and got to take some pictures of my cutie.  I changed the galleries so that all photos are displayed on the same page instead of needing to scroll through several, let us know if that causes anyone major problems.

 

We have been home for a couple of days and realized that we have left some (non- Facebook) people in the dark.  Sorry about that.

On Sunday they had finished monitoring Evan’s chest tube drainage.  He received the all-clear to take it out and Will and I got to be in the room when they did it.  Because he didn’t have the tube anymore, he didn’t need to be in the ICU and moved onto the floor.  He also didn’t need his scheduled dose of oral morphine anymore, which was really nice because I think it was a big influence on the sluggish and sad baby we were witnessing.  We had to give it 2 days and then recheck to see if any more fluid accumulated.

We were debating on whether or not to go to work on Monday.  Will’s schedule was horrid for the beginning of the week and I am already in a mini-panic about using so much vacation and we aren’t even out of January yet.  We were both getting ready to leave for the night when a couple of things said by the nurse just made Will and I look at each other sideways and I said, “Well I guess I’m staying here tonight.”  Thank God my company and more importantly my boss is a kind and reasonable person.

The nurse had come in to change his feeding bag which was fine.  She asked us if she could pour 8 hrs worth of formula into his bag instead of just 4.  Hmmm.  No, we said.  We like to check for air because he is a pretty gassy kid (which contributes to the pukes and should be noted with his food issues).  What she said may have been innocent but what we translated it was – I don’t want to have to get up and check on your kid so I’m going to pour enough food in here so he stays quiet all night.  He’s was also going through a terrible terrible diaper rash (even wound care came up to check it out) so he will need to be changed when he wakes up and you can’t let him sit in it all night. Oh let me add that he was having crazy poops every ½ hour that I’m sure was a result of the feed change and his poor butt was just so raw.  So that was strike #2.  And then she gets his feed bag all ready, hooks it up, and leaves.  She forgot to prime his line, so all of the air stuck in the line would have been pumped into his stomach, causing further gas and puke issues.  Dude!  Seriously?

Listen, I understand that Evan is #1 to us, is our only child and therefore can be our only overly-protected priority.  This was just unacceptable considering how tender he was at the time. He is so gaggy and pukey and we just didn’t get a good vibe at all.

Monday was whatever – another waiting day in the hospital.  Something I found irritating was that Evan was still having issues keeping his O2 levels above 70 like the cardiologist wanted so they had him on a little oxygen again but they weren’t monitoring his saturations all the time – just when they got vitals every 4 hours.  Is that normal?  I thought it was odd that you would have a patient receiving oxygen but not monitor it all the time and rely on a few checks to determine if the level received was adequate or not.  It was not a secret that he still dips into the mid-60s for a good 30 minutes at a time, even when sleeping.  I’m sure they know better than me.  I hope…

We were also noticing a bloody/mucus discharge coming from baby boy.  Gross.  We actually weren’t sure if it was some skin and tissue coming from the diaper rash sores but consistently we weren’t seeing anything come off while wiping.  Then as I was explaining this to the nurse I changed his diaper and a big blood/mucus plug (I know) came from his butt.  So whatever this was it seemed to be mucosal lining or something.  They passed it along to the lab to have it checked for C. dif

I wanted either one of us to be there the day he was discharged and we weren’t sure that was going to be Tuesday but I decided to just take that whole day off too and be at the hospital.  I don’t care what anyone says – discharge days are the most stressful days.  Drs, nurses, specialists, technicians are CON.STANT.LY coming into the room, asking a billion questions, telling you important details as you are trying to get things together, take care of baby, and run over your own mental checklist to make sure they don’t miss anything (which they did – yay!)  I just hate how busy busy busy those days are.  Certainly don’t make it easy.  Evy got his chest xray and some thought it looked the same as it was a couple days ago but to others thought they saw fluid so we had to have an ultrasound as well to confirm that there was just a small amount of fluid but no big deal.  We got the all clear to leave but we had to wait for the discharge stuff to be set up.

Since we are on a special formula we needed to order that through HomeMed too so the hospital sent us home with a few cans.  We also needed to go home on oxygen so they set it up with Airway gas to give us a travel bag with a tank plus have large tanks delivered at home.  I mentioned the inability to measure his O2 at home because we do not have a pulse ox but I was told again that it wouldn’t be necessary.  Huh?  You want us to administer oxygen when we think he needs it but you aren’t going to give us a way to measure it (and yes he can get too much oxygen too)?  Well someone re-thought that because they ended up giving us one (HA!  suckers…) and it actually works really well.  They went back and forth about having Evan on O2 all the time or just as needed and we decided all the time because putting the cannula on and off would just be torturous to him.  As least we can stick it on and have it be good for a little while.  He hasn’t seemed to mind wearing it at home too much.

Tuesday night Evan was super cranky and we were monitoring him and he was mostly in the 60s so we decided to put him on oxygen.  It took a while for his number to stay more in the 70s than 60s but we got there.  We still weren’t sure if we were supposed to up his amount or anything so we sent a note to his Cardio to hear what she had to say.  I stayed home on Wednesday too so I could keep a check on his O2 and take him to his pediatrician appointment.  It was supposed to be his 6-month well baby but it was mostly just to catch them up (this was the same office tho not the same doc that saw Evan the Saturday before he was admitted and didn’t hear the fluid filling his lungs despite us telling the doc several times about his left plural effusion.  I want to give them benefit of the doubt and say it must not have been enough to hear but I believe he was also doing his grunt breathing at that time too…  we were admitted 5 days later)

Evy was very happy all day but must be getting to an age where it is hard to leave his sight because I couldn’t leave the room without him freaking out.  He still does have barfing sessions although not as numerous but they can last 30-50 minutes.  His food is a liquid but somehow in his stomach it manifests into a solid so when he does puke it looks like a can of dogfood.  So I get down to my last can of formula (which lasts ~5 hrs of constant feeding) and I still didn’t get my HomeMed package with more food.  I call them up and ask where my stuff is at and they tell me that it will be here at 9am on Thursday.  I tell the lady that as of 9pm on Wednesday Evan will be out of food and that this is special formula so I can’t just give him anything.  She tells me that they don’t keep it in stock and that they had to order it to their facility (they are in Ann Arbor).  She does some research and finds that there are 2 cases of this formula that they happen to have laying around that got returned from some other baby’s order.  So they drove the formula and our other supplies out that night and we had it before Evan ran out.  At Bronson we had a discharge lady who set all of this shit up so I don’t know what was missed.  I don’t know if HomeMed didn’t realize that they don’t stock the formula and it would be another day delay on their part and didn’t tell this to Bronson.  Or maybe the discharge lady didn’t tell the nurse who was handing me cans to make sure I had 2 days worth instead of 1.  I don’t know but that shit is f-ed up.  HomeMed has their act together so I am willing to strike this against Bronson yet again.  It’s like really… I have to fight with you too???  I don’t have enough stuff to manage already???

Oh Evy I wish so much that we weren’t spending this day in the hospital.  I was so looking forward to having a nice 6-mo picture of you propped up in your chair, smiling away.  I am so sorry that  you are laying in the hospital, doing better but feeling crummy.  Ever since the Hemi-Fontan surgery you have been a completely different little boy.  I expected some, but I thought we would have you back by now.  You sleep a lot, you puke a lot, you stare off, and you rarely smile.  I can’t wait until we get over this hurdle!!

Since being admitted on Thursday and having the chest tube put in there has been a total of 180 mL of fuild that has drained out. Nothing has drained for the last 24 hours. Tonight they will close the drain, take a chest x-ray and pull the chest tube in the morning. They will hold him for at least 48 hours and take another chest x-ray to see if any fluid reaccumulates. If the chest x-ray looks good then we might be able to take him home. We will continue feeding Evan the low fat Enfaport formula for at least 6 weeks to give his pressures time to settle out and his thoracic duct time to heal if it was indeed damaged. We started a new medicine called octreotide. Typically this medication is used to decrease the amount of growth hormone produced in people with acgromegaly (a growth disorder) but in the past several years it has also been used in children with Evan’s condition (chylothorax) to reduce the flow of chyle through the thoracic duct. This medication is only available as an injection so before we leave we’ll need to be trained to give the daily shots. We’re not looking forward to that.

Evan has also been very gassy (he normally is but it seems like a lot more lately) and his belly has become distended at times.  He has developed what appears to my untrained eye to be a hernia at his g-tube site but we were told it was just granulation tissue formation.  We were also told that maybe the tissue could be because he has a lot of digestive pressures and it is pushing some tissue out.  That sounds crazy to me.  He is not tolerating his feeds very well which is not surprising.  He is very touchy as far as feeding goes and so far every time I change his diaper and lift up his bum (which compresses his abs and squeezes his stomach) he has barfed.  Since he is on continuous feed he doesn’t have much in his stomach but it seems like when he is on a roll he will empty out the little bit that is in there.  I think he is feeling hungry because he is starting to chew on blankets more (which is what he did a couple weeks ago while on continuous feeds and it wasn’t enough and he would chew on everything in sight) but he is still getting oral morphine so at least it isn’t painful.  His rash is also quickly improving thanks to the Magic Butt Cream.

To have some fun for the day I bought Evan balloons for him to watch and they make his room more fun.  All it does it remind me of his 1-month birthday celebration and it makes me sad to remind me of the past and feel like we have made zero progress.  I brought in some cupcakes to share with the nursing staff and Nana and Papa came by and hung out for a bit.  After the chest tube is out it will be much easier to hold him and I am very much looking forward to that.  I hope he can get some of his urpyness under control.  I think digestively he is uncomfortable and its just not making him feel very good.

We compiled a list of some figures estimating some data concerning Evan’s care.  All of them are approximations and many figures do not include his most recent heart surgery nor hospitalization as these claims have yet to be filed.  At the very least Evan has had:

2 Open heart surgeries

1 Pacemaker surgery

1 G-tube surgery

1 stroke

1 round of chest compressions

1 heart cath

1 swallow study

1 milk scan

2 Upper GI scans

2 CT scans

24 x-rays

3 ultrasounds

7 ECHOs

15 EKG/ECG

3 EEGs

4 Pacemaker transmissions

55 days in the hospital (and counting)

7 days on a ventilator

5 Intubation/Extubation events

11 days of TPN

Total cost of care: $508,900.30 (not including recent surgery or hospitalization)

The day started off a tid bit questionable as Evan woke up at 7 screaming and was  quite grumpy for the next couple hours.  I was worried that he would be saucy all day but that quickly went away and he was his charming, smiley self the rest of the day.  We had the visiting nurse come by as she heard of our discharge.  We looked for his chest tube suture that she is supposed to remove tomorrow but we couldn’t find it so maybe it fell out (?).  Evy’s skin is pretty beat up and we were finally able to take the nasty bandage off his fem line site so at least now the only bandages he has are his steri-strips on his big chest incision.  We need to give this stinker a bath.  Maybe tomorrow hahaha

The continuous feeds are going well, very well in fact.  We are using a kangaroo pump and they are terribly simple to use.  Although we do have to cart it around, it has a large battery so we can unplug it for a while without having to worry.  We need to use a new feed bag and tubing every day and other than that it is very low maintenance.  Hauling it to nana’s daily will be the biggest pain in the arse.  Evy has only been urpy a handful of times and those times are very mild spit up.  Nothing like the crazy barfing that he was doing before.  I am very happy we talked to UofM about his feeding. At least we know that doing things continuously will work for him.  Obviously we need to work on bolus feedings and that will start tomorrow.  We need to start out feeding him every 2 hours.  Yuck.  SO glad we have this week off so we can try to establish a feeding and med schedule.

  You mean to tell me this doesn’t look like fun?

We ended the day with Will’s family coming over and making delicious manicotti.  How great it is to have a home-cooked meal, particularly so because we are still under the weather.  Even better we were able to spend some more time with Heather, Jimmy, and Xander before they head back to Florida.  Who wouldn’t want to stay around for the big snow storm we are supposed to get?  Yeesh.

Day 5 – Saturday

Evan was definitely starting to feel more like himself.  He was much more smiley today and I think he likes having his own room too.  There is no other baby around to take away any attention, but really how could you not keep all of your attention on him?  He is so dang cute.  I couldn’t help myself and I went back to Elephant Ears and bought Evy some BabyLegs and a kimono onesie (which he promptly spit up on).  We are still working on upping his feeds.  He is being fed continuously but is  not up to our pre-surgery volume which made it all the more surprising that he spit up.  Maybe that was because we were fussing with him tho?

We are also still working on getting Evy off of the cannula.  He hates the dang thing and puts up a big fuss when you try to adjust it on him.  Can’t blame him tho.  He still needs oxygen because is sats are still dipping too much.  He was low to mid 80s after the Norwood and now he is in the mid 70s.  Sometimes it will just drop to like 53 or so for a touch and then bounce up to the 64-66 range and hang out there for a good 30 minutes.   You can also tell something is up because he will look more blue especially in his face.   So the nurses will fuss and put him on the cannula if he wasn’t already on it.

Will and I went to dinner with Kim and Brian and it is so nice to be able to talk to people without having to explain everything.  In fact, they had a much more arduous path and are teaching us.  Anyway, when we left Evan we rigged up a Boppy and had him sitting in his bed watching a movie.  I was hoping he would do well when we were away but you never know what you are going to get.  When we got back his nurse gushed over him and how awesome and cute he is.  She said she had dinner with him and even took him for a walk in the hospital stroller.  Evan the charmer!

 

Day 6 – Sunday

Another day on the floor and another day of feeling better and looking good.  We are definitely looking to discharge tomorrow unless something weird happens.  His pulse ox sats were dipping causing the monitor to alarm so after fussing with it for like 30 minutes the nurse just took it off.  “Oh we only have orders to monitor you every 4 hours so I’m just going to take it off.”  Sometimes it does read incorrectly and we can tell because although his pacemaker range is 110-170 his heartrate is always 110.  So we can read on the monitor if the pulse ox is saying 65 but his pulse is 90…. well obviously it is incorrect and not reading.  I’m trying not to make a big deal about it but one time a nurse came to do her checkup and hooked up his sats and it read 90 so that is what she recorded.  Now, I don’t think that is accurate either; its just a snapshot of an outlier.  I didn’t want that to happen again so I asked for the monitor to stay on for a bit just so we could  watch it and see where a real value might be. We talked to Denise the NP (who we love from last time) and she helped calm our nerves a bit.

Now that Evan doesn’t have a chest tube and is only intermittently hooked up to the monitors he is a lot more easy to handle.  Not that a couple wires are any big deal to mess with but it makes the odds of accidentally pulling something much smaller. I was putting Evy back into his bed and he let out a screech and I saw that his g-tube was hooked on the bed and it was pulling on him.  My poor baby!  It didn’t pull out or anything but for sure it wasn’t comfortable.  Kim and Brian told us a couple g-tube stories and I think we have been very spoiled with the fact that he doesn’t yet play with it, he is still immobile, and we can still swaddle him at night so it will stay put.  Although I am very much looking forward to Evy growing up I am not looking forward to him getting into things, particularly his g-tube.  I saw one video online of a mother taping that sucker down and that doesn’t seem like a really good fix either.  I dread the day we can’t swaddle him. I might have to contract some craftiness from my sewing friends to rig something up.

 

Day 7 – Monday

Discharge day!  I spent the morning packing up the hotel while Daddy spent another night in the hospital with Evy.  HomeMed brought up the feeding tube we will be going home with and showed Daddy how to use it.  We are currently on a protocol to up his feeds but we will need to continue at home following a protocol they gave us.  We will follow up with GI at UofM in a month.  We went over the discharge paperwork with the nurse.  Nothing terribly surprising.  His meds are very different.  We ended up coming off the Reglan, Lasix is trippled, different hearburn med, and some pain meds too.  We will need to figure out a better schedule when we go home.  Evan got his fem line out, the last IV port in his leg and he was also given his Synagis shot a couple weeks early.  NP Louise was telling us that babies lose ~ 50% of the drug when they are on bypass so it is ok to give it early.  Plus is has some immune boosting properties and we could use that.

We did a crummy job at getting pictures with his nurses but we did go by and say our farewells for a little while.  We even saw Dr. Hirsch as she was visiting a patient down the hall.  It is amazing to be leaving so quickly and almost feels surreal, like when is the bomb going to be dropped on us…  It is actually good for Will and I to be getting out of there while we can.  We are both starting to come down with colds!  This happened last time we were here and we were sick during delivery.  Now we just need to make sure we use our Purell stations at home and Evy should stay healthy.

We came home to a clean house thanks to Will’s family who let us have some peace of mind (before we trashed it again of course).  We also didn’t come home to our dogs, who we love but just didn’t want to deal with at that moment, thanks to the generosity of our friends and neighbors the McDonalds.  Evy also got to finally meet his Aunt Heather!  She drove up here from Florida with her boyfriend Jimmy and it was really perfect timing.  Thank you to everyone for your support throughout everything.  It is crazy to not have another surgery breathing down our necks and we can just enjoy our time with our amazing baby boy.  We still have a long road ahead of us with OT but I know Evan will be able to succeed.  He just has that spunk about him.

 

Holy cow is it different being here for the second operation.  Evan is progressing quickly and is far ahead of where he was recovery-wise at this stage months ago.  Early this morning he was extubated and off of the ventilator!  So 18ish hours after handing our precious baby boy off for his second open heart surgery he is breathing on his own.  I know previously it took several days before that was possible.  He is still using a cannula and is getting O2 through it.  He hates it and clearly wants it gone.  I can’t blame him at all.  His O2 sats are pretty low still and don’t look to have improved at all after the surgery (its in the 65-70 range).  We were told that it is due to his new circulation and that once his body calms down and does better with redistributing blood and pressures his sats should improve to where they were.  That will be fantastic.

We didn’t get to hold him today which was a major bummer.  I don’t know if that is because they don’t have a rocking chair (the nurse tried to find one earlier but failed) or due to him being pretty sore still.  I want cuddles for sure but I also don’t want to disturb him either.  He reacts a lot to our voices and when he opens his eyes and sees us that also sets him off.  I hate stressing him out so I try to lay back.  Behavior like this makes me wonder just how tough the Fontan will be when he is 2 or 3 and knows a heck of a lot about what is going on around him…

He is still pretty uncomfortable and they are giving him healthy doses of pain meds.  I think they tried to wean him down too aggressively and he got pretty pissy so they just gave him some morphine and Tylenol and he went back to sleep.  No mater how many times we tell them that every time he goes under he seems to need more and more pain meds for longer periods, they are always aggressive and end up having to give him extra doses.  I wish they would just heed the warning a bit better.  We’ve also learned that Evan has a paradoxical reaction to Versed and have told the staff many times and that message wasn’t getting passed along until someone finally wrote it down this morning and stopped giving it to him.  (Versed is a sedative and is supposed to calm you down but it gives Evan energy and he laughs in its face).

He is peeing a lot so removing those fluids is helping to reduce the swelling.  He is looking more and more like himself.  His chest tube drainage is also slowing down.  During morning rounds Bill heard that during the procedure there was a suspicion that they may have nicked a coronary artery (or was it carotid?  Dad will have to clarify) and that this may have been some of the extra bleeding that happened in the OR yesterday and that they had to wait for.

They wanted to start Evan back up on feeds and while talking we explained his history and how much he is throwing up.  GI came and talked to us and they are starting him off very slowly.  We told them about the upper GIs and milk scans and swallow study at Bronson and UofM Dr. was all – wow that’s a lot of testing.  Funny because that’s what we think UofM’s approach is sometimes – no test is too excessive to perform.  Anyway Dr. said it would take days to weeks to get the info from Bronson (?) which baffles me because I thought this stuff was electronic so it wouldn’t be that hard to share and I also thought the 2 hospitals were communicating better with Evan’s health but I guess not.  Just like the neurologist didn’t know we had a EEG at Bronson, the GI people were clueless as well.  Awesome.  In any case they are giving him 10ml/hr and have a plan to pump it up.  When they started with the first feed Evan did gag a little but that was it.  I am trying to cut down to make only 1 oz per hour instead of 1.5-2.   So this means I go from 1350-1440 ml/day to 720.  He eats 1080 a day so this will put me in the negative for the first time ever (!!) but we are using frozen milk from September people so this is getting ridiculous and mama needs a break.

During rounds I heard they want him to have another upper GI here (maybe b/c they can’t get the records from Bronson in time??) but they are delaying that until he is off of some meds that can interfere with testing.  They want to take him off of his Zantac… er now Nizatidine because it is a H2 blocker and proton-pump inhibitors are much more effective.  Uh… yeah I think we were arguing about this too so I’m happy this will be changed.  They would also like to see him off of Reglan because one of the potential side effects is ticks, especially if used longer than 3 months (uh yeah that would be us).  Again, don’t know why we weren’t told about this before or asked about it recently.  I also don’t know why a GI person hasn’t talked to us at Bronson, just a peds surgeon.  Sigh.  That’s why we are taking advantage of getting a second opinion while we can.

Evy continues to be a heartbreaker in the PCTU.  We are seeing some familiar faces and they like to come and check out how he has grown.  Daddy printed off some cute pictures and we have them hanging on his bed.  Ladies ooooh and awwww over him, naturally.  He’s pretty much a stud.  They are looking to move him to the floor tomorrow.  I don’t know if that means moderate care or the general floor as they are much more mingled now and are both on “the floor.”  Doesn’t matter – it just means we will get our own room and will be one step closer to leaving.  I still see us staying through the weekend so maybe we’ll head home early next week!

 

The same nurse came out and said that Evan is on bypass and Dr. Hirsch is currently performing the Hemi.  Everything is going exactly as planned!

When I heard that they had just gotten Evan on the bypass machine and started the surgery I was instantly worried… “what on earth is taking so long,” I thought. So I looked into heart bypass on the internet and came across this image of a heart on bypass.

OK… I completely understand now why it takes so long.

 

 

 

 

Evan did so great while waiting for the anesthesia team to take him back.  There was a bit of a delay and they got him at about 1.  A surgical nurse practitioner updated us at around 3 and said that so far everything was going as planned but that they had just begun the actual surgery.  Dr. Hirsch commented that there was a decent amount of scar tissue.  She expected this and told us this would be some of the most tricky part of today’s procedure.  It’ll be the 3rd time opening up his chest.  We’ll get another update around 4:30.

Thank you to the Wilson family for stopping by.  I hate that you’re here too but I’m so glad to have friends like you.

Evan is having the bi-directional Glenn aka Glenn aka Hemi-Fontan today.

Here is a quick 26-second video showing what he will have done today.

 

Here is the full 9:25 video from which that clip was extracted and has more details.  Evan doesn’t have HLHS but the same operations apply to his condition as well.

Please be patient with updates.  Among the great things with the new hospital are zero cell phone reception anywhere and spotty (at best) wireless internet.  I’ve lost connection 6 times during this post so I hope it makes it. 🙂