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Yep, it’s been a while.  We have been home for just about a month.  I guess you can always suspect we are home when the blog goes quiet and we are tending to our little man.  We want to first thank everyone for their kind words and inquiries during this time.  Thank you especially to the Jackson, Hakala, and Spilson families for your complete kindness and generousity.  Thank you to our amazing colleagues who pooled money and  sacrificed gift cards so that we can have an easier time balancing everything when we get home.  Time is one thing we don’t have and by taking care of meals we get it back.  You have no idea the amount of peace that exists when you know dinner is not something you have to worry about.

We get asked a lot but we are always up for talking about Evan; it can just be a little hard to figure out what to say.  How into detail should we go?  Where did I last leave off when talking with this person?  It is kind of a loaded gun, but honestly I don’t know what I would say to me either.  In short, here are some recaps from the past month to get everyone up to speed:

• Evan got his second toofer in the hospital, so now he has a pair of sharp little bottom teeth.  It amazes me how hard he can bite.
• We were discharged after a 25 day stint on Feb 23! Yay
• We finished our 6-week course of special-fat formula Enfaport to treat Evan’s chylothorax.  So far it hasn’t come back since eating breastmilk again.  Wonderful news!
• We finished our 6-week course of antibiotics to treat his Psuedomonas infection.  Aside from the wound slightly opening up a couple times and it looking a little sketchy in the beginning, everything has gone great and the infection appears to be gone.
• Evan has been smiling and feeling much happier – much more like the boy we’ve been looking for all year
• Evan has learned to sit up on his own and has decent stamina.  He is also able to roll around.  He’s not quite mobile but he is working on it for sure.
• Evan still receives 100% of his food through his g-tube.  Eating will be an issue.  We have an assessment with OT, PT, and speech therapy next week to come up with a game plan.  Evan will put cereal puffs into his mouth but will typically start gagging, spit it out, have a moment, but then he will grab another puff and try.  He knows very much what to do, just needs to get over the texture/taste/sensation issues.
• Evan scored some sweet threads at his first Mom-2-Mom sale
• Evan went with Daddy to Daddy Bootcamp as an assistant to  help show daddies to be what lies ahead.
• Evy met his new baby friend Ari Filippine, who arrived a month early
• Evy sported his “Member of the UofM Zipper Club” onesie in support of baby friend Maggie McLaren’s heart transplant!
• He has been spending lots of time outside on walks with Nana and Papa and taking advantage of this incredibly warm and sunny March
• March 18 marked the first day that we have been out of the hospital more than in the hospital this year.  Yay and keep it that way!
• And of course Evan has been proudly sporting his Spartan Green while cheering on the MSU basketball team.  My good-luck little monka!
• Aaaaaaaaand finally Happy 8th Month Birthday little guy!  You are growing up so fast it is incredible.

And in no particular order, here is the cutest baby ever…

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!

 

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.

 

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.