livingwithevan.com

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  • A few days home from the hospital, and a few gripes

    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???

  • We have a 6 month old!!!

    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)

  • A Routine Cardio Appointment Ends in Hospital Admission.

     

    I’ll start off saying that everything is okay now and it was not life threatening just to ease some minds before I get into all the details.

    Today at 11AM Evan had a routine follow up appointment with the cardiologist in Kalamazoo. I had to attend an all day training at work so Sarah and my mom took Evan to the appointment. Dr. Dommer wanted to do an echo to look at his heart function because when we were discharged from U of M they stated that his heart function was ‘moderately diminished’ compared to before the surgery and she wanted to check up on it. Her analysis after looking at the echo was that it was only ‘mildly diminished.’ If I recall correctly when we had the echo at U of M he was not back on all his heart meds so I would expect his heart function to be more diminished. While looking at the images of his heart Dr. Dommer noticed that there appeared to be some fluid buildup on his chest but she couldn’t tell for sure with an echo. She sent Sarah, my mom, and Evan downstairs for a quick chest x-ray. It was at this time that I started receiving texts about what was going on. The x-ray showed a sizable amount of fluid on Evan’s left lung. When we were discharged from Ann Arbor Evan had a pleural effusion (fluid) on his left lung but we expected that it would have been gone by now. Dr. Dommer said that Evan needed to be admitted and a chest tube placed to get rid of the fluid, he was put on oxygen to help evaporate some of the fluid on his lungs and to help his oxygen saturation which was in the high 60’s (75-80 is normal for Evan) We could be admitted here and have the chest tube placed or we could be admitted here and Evan transported to Ann Arbor. Sarah and I decided that we would prefer for him to be transported to Ann Arbor. I’ll say again as I have in other posts, it’s not that we dislike or distrust Bronson, it’s just that we want to be in Ann Arbor in the event that something unexpected occurs, they deal with these heart babies all day every day and if Evan “spirals out of control,” I want to be at Mott… Period. We’re also much more comfortable at Mott, we were there for 6 weeks and know many of the doctors and nurses.

    Well wouldn’t you know it… Mott did not have any beds available to accept Evan! WHAT!? You built a $754 million hospital, expanded the rooms substantially, and you don’t have any beds? Here’s the truth. They have beds, they don’t have enough staff to open all of the rooms. The PCTU currently has 17 beds open but 31 beds total. The general floor for heart kids has around a dozen unoccupied rooms. They are currently working hard to increase staff but I think they are at a bottleneck of having the staff and time to train all of these people (sound familiar to anyone?). It takes 3+ months to train and not every single person is a trainer. It takes time, I understand, but the hospital wasn’t built overnight. It’s 5+ years in the making…. get on the ball. 🙂

    We didn’t end up getting transferred. We were admitted to Bronson and moved to the ICU. At about 4:30pm the doctors came in and put in his chest tube. We were able to stay in the room and watch the whole thing. Many parents would not be able to handle it but Sarah and I are big science nerds and really enjoy knowing as much as we can and seeing everything that goes on. We even asked Dr. Hirsch if they recorded the heart surgeries because we would have liked to see it. (They don’t record them) Within 20 minutes of placing the tube 120mL had drained out of his chest, since then there has only been another 10mL.

    You must be wondering, what is this “fluid” and where did it come from? The fluid is called chyle (pronounced like the name Kyle) and it’s a milky red substance consisting of lymph and emulsified fats. Chyle is a normal fluid that is produced in the small intestine during the digestion of fatty foods and is transported by the lymphatic system. Because of the stress of surgery, damage to the lymphatic system,  and the change in pressure within Evan’s vessels the chyle can diffuse through the permeable vessels and accumulate in the chest cavity. The goal during his hospital stay is to 1) reduce the excess fluids quickly via the chest tube and 2) reduce the amount of chyle being produced and transported through the lymphatic system so that it has a chance to heal/rebound while Evan’s pressures settle out. The second part is done by changing his diet to something with much lower fat content and higher fat absorption. This special formula is called Enfaport. When we asked Dr. Dommer how long we should expect for him to be in the hospital she was very frank with us, as she always is, “It varies a lot, it could be a few days or it could be as long as six weeks.” Six weeks!? Let’s hope it doesn’t take that long.

    Evan also developed the worst diaper rash he’s had so far. He’s got a very tender butt. It’s so strange how quickly it popped up, yesterday it was just a little red and today it’s very inflamed, almost to the point of bleeding. Luckily, we’re in the hospital and they have some super duper butt cream that they mix up special. The base cream used? Triamcinolone cream… that’s right Pfizer friends, be proud.

  • Tired

    Tired

    I have been wanting to write a post for a while now but these past few days have been rough, really rough.  Like the worst so far.  We went from continuous feeding  to bolus feeding and I don’t know exactly what is going on but something isn’t working.  Our inital trial at bolus feeding was every 2 hours and we did that  for 2 days and it was exhausting.  Still a little urpy but probably nothing different from a non-reflux baby.  Evan has been fussy tho but who knows exactly why.  Then we tried to move to every 3 hours and we are back to getting more puke, although the volume isn’t where it was before it is still more than just spit up.  Evan had a really bad puke scare yesterday morning – like he must have felt like he couldn’t breathe or something and freaked out for over an hour.  It was just when we called the Dr. that he finally calmed down (of course).  Ever since then any puke situation is a freakout situation and he will scream like I’ve never heard before.  He is in general very fussy, very needy, like needs our attention constantly.  He wakes up crying a lot.  And I thought he was high maintenance before.  Plus with us being sick it has just been awful.  He is also biting and chewing things a lot which makes me think maybe he is teething but I don’t see any teeth, putting the oral stuff in his mouth did nothing, he doesn’t have a fever and isn’t drooly.  Generally you can hold him and he will be ok but you have to be walking around or moving.  It has been exhausting.  We are  tired.  We are stressed.  We don’t know how we are going to manage this, work, and appointments.  I’m beginning to feel overwhelmed and frustrated that this could go on for who knows how long and who knows why.  I don’t want this life to become our version of normal.  What are we doing wrong?  What are we missing?

    Bubbas, I wish so much you could tell us what is wrong.

    Are you teething?
    Are you feeling sick?
    Are you tired?
    Do you have a headache?
    Does your chest hurt?
    Does your heart  hurt?
    Does your g-tube hurt?
    Are you having digestion issues?
    Does it hurt to eat?
    Do you need more to eat?
    Do you need more pain meds?
    Do we need to feed you more slowly?
    Are you just plain spoiled?

    Despite all of that, there have been a few brief, brief moments of “old Evan” and we’ve had a good time.

    The boys worked in their home offices:

     

     

     

     

     

     

     

     

    We went for a walk on a “warm” day earlier this week:

     

     

     

     

     

     

    We discovered that Evy learned how to use his leg to grab onto toys on his vibratey seat.  I love watching him learn things:

     

     

     

     

     

     

    Evy also learned what a beard was and how perfect they are to pull:

     

     

     

     

     

     

     

     

    Evy hung out with his cousin:

     

     

     

     

     

     

    Evy got to say goodbye to family:

     

     

     

     

     

     

    And mama learned there are 4 steps to getting a baby ready for a walk:

     

  • First day home… here we go…

    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.

  • Days 5, 6, & 7

    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.

     

  • Days 3 and 4

    Days 3 and 4

     

    We have had a couple pretty good days. Erica was our nurse on Thursday, she was our favorite nurse from our previous stay. Evan continued to rest and recover. Erica sat him up hunched over some bundled blankets and he really loved it. He spent most of the day sleeping sitting up or sitting there looking at everything going on around him. Everyone was so enamored with our little man and how cute he was when he was sleeping but how serious he looked when he was awake. Sitting up helped some more fluids drain off of his chest and put us in great position to remove the chest tube on Friday. We found a burn and blister under Evan’s neck, this can happen if the Betadine solution they use prior to surgery for disinfecting the area is not all wiped up. We have some burn cream that we need to apply 3 times a day. I’m sure this doesn’t feel good and being under his neck there it’s never allowed to get any air because of Evan’s little neck rolls. Evan continues to be on constant pain meds, Tylenol, Motrin, Oxycodone are scheduled so that he’s never without something and the occasional small dose of morphine if he seems to be in pain.  

    We knew that Thursday would be our last day in the ICU, it was just a matter of when a bed would open up. We were not in any hurry to be honest. We like the 1 on 1 attention in the PCTU much better than that of the care you get on the general floor. I’m not saying the care is bad, it’s just that things don’t get attended to nearly as quickly because a nurse has 2 other kids to tend to in addition to yours. Alarms and cries go much longer before they are attended to, so I feel really guilty when I am not here. I don’t want Evan to lay crying for who knows how long before a nurse comes in to see what’s going on. Finally at about 7pm on Thursday a room opened up and we were transferred to the general floor. Oh and FYI… when I say general floor, it’s more like general cardiac floor. All of the kids around us are heart kids. All of the 11th floor is cardiac and much of the 10th is as well including the 31 bed (currently only enough staff for 17) PCTU. The picture on the right is of the television screen on the wall in our room. This TV is our portal to many movies, hospital videos, internet, and we’re even able to order food.

    Thursday night was an interesting one… full of gas and runny stool. TMI? Evan had the worst diaper we have seen so far, it was like a lake in his pants. We had to change his bedding and a couple of his bandages because it was everywhere. All over his chest tube, g-tube, femoral IV, it was really bad. I have a picture but I’ll save you from that, LOL. Drainage from his chest tube had slowed to less than 10mL per shift so it was decided to take the chest tube out. This was done on Friday morning and Evan seems to be much happier without it. Additionally, Evan had an echocardiogram and EKG done and the results from them were normal. They did see slightly reduced function of his heart than what they saw pre-op but I would expect that since they hadn’t restarted all of his heart meds.  They have since restarted his meds and his feeds have continued to go up. We’re doing continuous feeds with a pump at the recommendation of the gastroenterologists, who we’ve consulted about all of the puking that Evan as been doing.

    We’ve made some friends during our stay here. Brian and Kim Sidlauskas have a son Ethan who also has a CHD and is here for another surgery. Kim and Sarah actually went to high school together. They have spent much more time at the hospital than we have, little Ethan was here for a solid 6 months the first time and Ethan had to go home with a trach and ventilator. All of that is gone now and Ethan is recovering from his next surgery and is doing pretty well. Please keep this family in your thoughts and prayers as well. We met another family while we were here as well, the daughter’s name is Avery and at their 2 month checkup the pediatrician heard a murmur, they had heard this before but didn’t give it much merit because the whole family has murmurs the pediatrician continued to look into it and it turned out that Avery had to be rushed to Ann Arbor and scheduled for immediate surgery to repair her heart. I’ll have to find out the name of her condition again, but in general, many of the arteries and veins around the heart were in the wrong place and connected to the wrong things, additionally there was an extra artery going up her neck that needed to be tied off. She had surgery Tuesday morning (this was the case that bumped us from 1st case of the day to 2nd) and is doing well. The family is now on the general floor a couple beds down from us. Mia Wilson continues to fight allusive infections, and now osteopenia which is low bone mineral density, this was found out after it was realized that poor Mia had a broken bone in her leg.

    Friends from Lansing came to visit today, Tony and Jennifer Knapp. We visited with Evan for a while, went and had some dinner, and visited with Evan some more. I see that look in Jennifer’s eye, like she wants to steal my baby. 😉 We saw our first smiles since before the surgery today, thanks to Jennifer. Thanks for coming you guys, it was great seeing you.

     

     

     

     

    Our hurdles before going home, in my eyes are:

    1. Getting him off of oxygen, so far they have attempted to wean him and each time they do his SATs drop and he needs to go back on the oxygen. We want to know what’s going on with that.
    2. Consult with GI… we met with them and a GI study was mentioned but I don’t think it was scheduled because Evan was on Morphine at the time. Are we going to get the study before we go? Are we going to leave and come back in a week or two once he’s settled and not full of pain meds? Or are we going to skip it since they can get copies of the studies done at Bronson? Do the Bronson ones show enough of what they need to see?
    3. We need to know what to do with his feedings. GI said that we should continue doing continuous feeds on the pump for a few days and then start progressing towards bolus feeds (bolus means all at once) but we don’t have a scheduled or know exactly how to do that. Nor do we have a feeding pump or know how to use one.

    These things could be figured out pretty quick so we could go home yet this weekend or on Monday.. Less than 1 week in the hospital?! Evan, you are amazing.

    Here are some pictures from the last couple days.

  • Day 2

    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!

     

  • Hemi-Fontan Update #3 :-)

    Hemi-Fontan Update #3 🙂

    The nurse came out again at around 5:30pm and told us that Evan is off bypass and everything went great. They are waiting for some of the normal bleeding to stop so they can close his chest. Once he’s closed they will take him to the PCTU (pediatric cardio-thoracic unit) and we’ll get to see him about an hour after that. So, maybe at about 7:30pm. The nurse indicated that Dr. Hirsch is very happy with the outcome and she’ll be out to talk to us soon.

    We took this image a couple days ago… you can see that his feet are fairly blue in comparison to Sarah’s hands. This is why we’re here. The oxygen level in his blood is getting lower and lower as his body grows out of his shunt. With this surgery, the shunt is being removed and the top half of his body will provide blood to the lungs. As his body grows, this operation will continue to grow with him.

    Look at how much Evan has grown in the last 5 months! Click on the image to see it bigger. That’s Dr. Hirsch holding him.

    While I was writing this post Dr. Hirsch came to talk to us and reiterate how well the surgery went. She did have problems getting into his chest because of the scar tissue that is there and she put a piece of GoreTex between his abdominal wall and chest cavity so that getting into the chest next time will not be such a problem. She used the word “scraping” which made me cringe. He may have some extra drainage because of all the work that it took for her to get in. Evan’s pacemaker was turned off and an external pacemaker was installed temporarily due to the cauterization tools used during surgery. The pacemaker will be interrogated tomorrow to make sure there was no impact. She was not happy with where the surgeon in Kalamazoo put the G-tube (in the middle of his chest just below his sternum), which made us laugh because he was complaining about where they put the pacemaker. Apparently if they know the child is going to need a g-tube they put the pacemaker on the right side so the tube can go on the left. They put Evan’s pacemaker on the left… Why? Just assume that these kids might need a g-tube and put the pacemaker on the right all the time. In any case, because of the placement of the g-tube and pacemaker there is very little ‘real estate’ for pacer wires, chest tubes, etc.

    Here are some pictures of the day so far for you to enjoy.

     

  • Hemi-Fontan Update #2 – Updated 🙂

    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.