Here’s a 3 minute video of Evan dancing to a few different things.
Author: William
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Evan Loves Peep
Have you seen the show on PBS called Peep and the Big Wide World? It’s a cute cartoon about a duck, bird, and chicken that’s narrated by Joan Cusak. Thank you to cousins Jacob and Morgan for introducing us to the show. Evan loves the theme song and whenever it’s on he stops whatever he’s doing to watch and listen. It is definitely better than the Mickey Mouse Clubhouse “hotdog” song. 😉
This week he’s started to do a little dancing to the music, take a look…
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Still in hospital but in great spirits
It’s been a week since our last post and not much has changed. Evan is still in the hospital and we’re still trying to manage being here with him and going to work. I have been going in on Mon, Wed, and Friday and mom has been going in on Tues, Thurs, and all weekend. Mom is especially stressed out trying to get her 40 hours in so she doesn’t have to use vacation since it’s only February and we’re already running very low. I have been very fortunate and been able to work enough from the hospital to only take one day off each week but I need to work even more so that I’m not taking any time off… I worry about what the rest of the year is going to look like.
Evan had his first Valentine’s day and he really loves his balloon. He had his g-tube button changed out, this is something that needed to be done after being in for 3 months and now Sarah and I will do it monthly. Evan continues seeing occupational and physical therapy for oral aversion and general development. The therapists are very happy with his progress and expect him to really take off in the next month or two. Evan really enjoys it when they come to “play” with him. Evan is not exactly eating real foods but we have introduced him to applesauce and carrots by way of him simply playing with the food and getting it on his fingers and then into his mouth. So far he hasn’t really tasted much but I think we’re making progress. For nutrition he’s still on the disgusting Enfaport formula, that lasts until March 1st and then I think we’ll go back to breast milk.
Evan also really enjoys holding himself up on the rails of his crib. He does pretty well, wobbles and tips over quite a bit but it’s a great workout for that little baby 6 pack. He is clearly not a morning person, he wakes up screaming every morning between 6 and 7. Nothing seems to calm him down like a stroll around the hospital. This morning we went all the way to the cafeteria in the main hospital for an omelet and coffee. Everyone tries to get him to smile but in the morning, he’s not having any of it.
The wound vac was pulled off on Wednesday and Friday and although it looked much better they still decided to keep the vac on. The vac constantly pulls blood to the site which promotes healing and the profusion of the antibiotic. Keep it on as long as you want as far as I am concerned. I don’t want another relapse of what happened before. They will take it off again on Monday and look at it. I suspect that they might leave it off this time but we’ll see. If everything looks good (and stays looking good) then I suspect we’ll come home later this week. If they have to put the wound vac back on then it might not be until next week. February is almost over and we’ve only spent a couple weeks at home so far this year.
Here are a few pictures from the week. Also make sure you go take a look at the 3 minute video of Evan and mom playing together.
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Wound Vac Removed!
Last night the wound vac was removed and they have been changing/packing the wound with sterile wet dressings. They say it looks really good and is healing well… i’ll take their word for it, it looks pretty nasty to me. Physical therapy has been by a couple times and worked with Evan and occupational therapy was by once to work with Evan’s oral aversion. Some athletes from U of M came by tonight to spend some time with the kids, it was very nice of them to come by. With the vac gone Evan is pretty much cordless again and we’re able to walk around with him much more easily. I took him for a nice long walk today and we visited Erica, one of the nurses in the ICU. She was excited to see him and showed him off to the other nurses and even took him with her to their shift change meeting.
I went out for lunch and stopped at the kids clothing store Elephant Ears and bought the outfit in the picture above… isn’t it awesome?
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We Have a TOOTH!!!
When you have a child with health problems it can be easy for the milestones to be overshadowed by doctor’s visits, medications, hospitalizations, developmental delays, and just trying desperately to be “normal,” if such a thing even exists. Well today we had a milestone. Evan’s first tooth broke the skin! He’s been chewing on things for a couple months and he’s been irritable but we just figured it was due to everything else going on, and it probably was. So it was a complete surprise when I rubbed his gums and felt a tooth in there. Yay Evan!Evan’s had a pretty busy but good past few days. He’s been feeling much better and has had much more energy. He still sleeps quite a bit but the times he is awake are much longer and he is much more active and playful. Nanna and Papa came up on Saturday and hung out for a few hours. The Wilson family came to visit as well, it was so great to see Mia in the hospital as a visitor instead of a patient. Bobby and Wendy Wilson, keep up the great work and keep that wonderful little girl healthy! Sunday brought the Super Bowl and the Inaugural Heart Bowl Parade here on the 11th floor. Everyone was given a bag full of craft materials to decorate our strollers and before the big game started we had a little parade and party with the other families here on the floor.
On Monday the Nurse Practitioners changed the foam and dressing in the wound vac and Sarah and I were able to watch. The wound on his chest is a lot bigger than I thought. 1.4 in x ½ in and ¼ inches deep.
I have pictures, obviously, but you probably don’t want to see that. You could still see some infection in there but it looks quite good. They are continuing with the wound vac for another 3-4 days and then check it again. If everything looks good then they will remove it and switch to what they call “wet to dry dressings” on Thursday. Wet to dry means that they pack the wound with a wet sterile bandage and place a dry one over the top and seal it. This dressing gets changed 3 times a day until it heals completely. That’s right, they don’t stitch up the wound, they just let it heal on its own. It’s crazy to me but it’s safer for an infection than sealing it up and the infection having the ability to start growing again underneath.
Today has been extremely busy, I was hoping to get some work done but that didn’t happen at all. Evan had a great night and then we woke up to a huge puke. Once we gave him a bath and changed all of his bedding, Dr. Hirsch stopped by to say hello and check up on Evan before she went to the OR for the day. The NP’s stopped by a couple times to talk about his progress and “the plan” and our GI consult. OT came to talk about his oral aversion and did a little work with him that went really well. Evan’s blood test came back with low hemocrit (34 and it should be about 40), this means that he’s a little low on blood. This is due to the blood that they have needed to draw for testing as well as the chest wound. They are giving him some blood. This is such a good thing, let me explain why. We went home from the hospital a few weeks ago on oxygen because Evan’s oxygen saturation (sats) was too low (below 70%), looking back we are attributing it to the chylothorax that he had as well as the chest infection. With that clearing up his sats should go up, and they have a little, but not enough that we are off the oxygen yet. Today when I came in they had been able to turn the oxygen down to 1/8 of a liter, a very small amount, he was at 5 L earlier this week and his sats were at about 72. Blood carries oxygen, if the amount of blood that you have is low then you have less oxygen carrying capacity. So, when Evan gets this blood his sats should go even higher and we should be able to come off the extra oxygen completely! I fully expect to come in tomorrow and not see a cannula on his face!
Go Evan Go!
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A Free Upgrade is Not Always a Good Thing
Wednesday morning Evan went for an echocardiogram in order to check his heart for what the doctors call “vegetation.” More simply put, they were looking for any abnormal growth on/in his heart due to the bacteria. While they were looking at his heart they also looked at his overall heart function. The results of this test were great. He didn’t have any growth in his heart and his function was not any more diminished. In order to get really clear pictures Evan had to be sedated for the echo because he moves around too much. He was given chloral hydrate and that didn’t really do much to sedate him so they also gave him some Ativan which also didn’t seem to affect him. We managed to get the echo done but it took a lot of coaxing, playing, distracting, and some holding down at the end. We came back from the echo and a couple hours later Evan was taken back to the treatment room to have his chest wound cleaned, changed, etc. He was given more sedative and after he came out of the treatment room he was very out of it for much longer than they expected, it seems that all of the sedatives finally took their toll on Evan and not only was he completely asleep but his breathing was very shallow. The staff was concerned and put him on high flow oxygen and we were “upgraded” from the general cardiac floor to moderate care so that Evan had more nurse supervision.
Thursday was a pretty uneventful day. No procedures, no events, just relaxing and catching up on some sleep. We did however hear about the identification of Evan’s little bug, Pseudomonas_aeruginosa. I won’t pretend that I know anything about bacteria and tell you about this thing…My feeble attempts at reading about it Wikipedia left me even more confused. What I do know is that we’re still waiting for some results on what antibiotic this particular thing is susceptible to and for how long. They stopped the administration of Vancomycin, it’s usually not helpful against this bacteria. The Zosyn is still being given.
Soon after 10AM on Friday Evan was taken away for another procedure. A PICC (peripherally inserted central catheter) line was put in his leg. A PICC line is much more secure and lasts longer (weeks to months) than a normal IV (a few days). It’s also much longer, a normal IV only goes just under the skin where a PICC is inserted into a larger vein and advanced through the vein until it’s very close to the heart. While Evan was in for the PICC, Dr. Hirsch, his surgeon came in and looked at his chest wound. She said that it looked as good as can be expected, there’s plenty of inflammation of tissue but the sternum is stable and she does not see any issues with the wires holding his chest together. All good news.
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Transported to Ann Arbor and the ‘Wound Vac’
Yesterday brought Evan’s first trip to the ER and today brought a couple other firsts. Today was Evan’s first ride in an ambulance (mom’s too) and his first experience with the wound vac. The ambulance ride was not the scary type that most people think of but instead just our little guy hitching a ride from Kalamazoo to Ann Arbor in style…ok maybe the big box with wheels is not your idea of style but it’s shiny and has lots of buttons and lights so as far as Evan is concerned it’s an Aston Martin Rapide.
After we got settled in our new room and the staff was able to get acclimated with what’s happened since we left on January 9th Evan was taken to a treatment room and they started the task of making a shallow incision and draining the fluid inside the lump in his chest. The procedure took about 30 minutes to complete but Evan didn’t come back out for another 20 or so minutes because they were trying to start a fresh IV since he was already sedated. The nurse that performed the procedure came and talked to us, she said that it went well and they were able to get quite a bit out but that there was still much more that they were not able to get to. They hooked what is called a wound vac to the area to suck out the infection. You can imagine what this must involve or you can look it up on your own, i’ll leave the exact details out to save those of you with weak stomachs. They will look again tomorrow and reassess what needs to be done. They are going to culture a sample of the material that came out to see what type of bacteria it is. This can take as little as a day or as long as 7 but I suspect it will be on the very short end of that since there is no question it was bacterial. Once the type is determined then they can set a course for treatment.
Evan has been very good since we got here and he has been very comfortable. I think he’s catching up on some much needed sleep. I hope that it continues into the night as Sarah and I could use some sleep of our own. Big items for tomorrow, follow up on the drainage, see if the culture has grown anything, maybe drive back to Kalamazoo to pick up the second car, talk to social work and get setup with a place to stay while we’re here in Ann Arbor, and figure out what Sarah and I are going to do about work. Are we both going to stay here the whole time? Am I going to work from here? Will we trade off and on driving back and forth?
Here are a few pictures from his travels today.
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To the ER :’-(
After well over $650,000 in hospital bills and we had not yet been to the emergency room. That all changed last night. I came home from work and my mom mentioned that the bump on his chest seemed to be bigger than normal. He had always had a bump from where the sternum comes back together, and I didn’t really give it much thought. My parents left and less than 2 minutes later he puked. I started changing him and immediately knew something was wrong when I took off his shirt. I immediately called the cardiologist on her personal cell phone (one perk of having a complexly fragile child is that you have immediate access to all kinds of great doctors willing to let you call them at any time of day or night). She told me that I needed to go to the ER and she called ahead to let them know we were on the way and she also called her counterpart Dr. Loker to let him know that we were coming in. My next call was to Sarah, “Don’t freak out, something is wrong with Evan, I’m taking him to the ER. The bump on his chest is the size of a golf ball.”
After cleaning Evan up and getting his stuff around I high-tailed it to Bronson. Sarah was there and waiting for me in front of the ER. I got to the ER at about 6pm on Monday January 30th. After blood tests, 2 chest x-rays, and a CT scan there was talk about sending us directly to Ann Arbor from the ER but Mott Children’s hospital did not have any available beds (stay tuned for the bitching). We were instead admitted to Bronson and moved to a hospital room at about 12:30 AM Tuesday with the intention of moving us to Ann Arbor when a bed opened up. Well it’s been 12 hours and we still have not heard anything about moving to Ann Arbor. I’m getting pretty irritated and after i’m done writing this post I am going to start making phone calls to U of M myself, squeaky wheel gets the oil, right?
“We do not have any beds available.” B-U-L-L-S-H-I-T. You have a brand new $754 million hospital and there are entire wings of empty beds. The actual problem is that there is not enough staff to open the rooms. In all my vast knowledge of hospital operations (none) I can’t understand how you open a brand new facility with all this increased capacity and not hire the staff to run it. I know they are hiring like crazy and training people but perhaps this should have been done before the hospital opened since it takes 3 months to train people.
OH…. nurse just came in, there is a bed available in Ann Arbor!!! Finally! They are preparing the paperwork for the transfer. We should be rolling by 1:30pm. More updates to come later.
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Fussy McFusserpants
I wanted to make a very abbreviated post so I can post some pictures before I start talking about our most recent hospital stay….
We came home from the hospital on January 24th and since then he has been very fussy and all around unhappy. We continue to fight with the throwing up and it’s almost become cyclic. Every 2-3 hours he wakes up screaming and coughing, he throws up, spends the next 30-60 minutes coughing, crying, and throwing up and then he falls back asleep. Probably 2 big pukes per day and 2-3 small spitups.
Here’s the pictures, stay tuned for my next post… “To the ER” 😥
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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.
