Evan's Test Results

We received Evan's test results on Friday, September 20th.  Even though we were told we would receive them on September 3rd, and then the 17th, and then the 18th, and then the 19th (ugh!) getting the results on the 20th was the fastest Dr. MacDonald had ever gotten results from an Athena Diagnostics lab before.  It's just so hard to wait!  Especially when you know that your baby may be getting treated in the wrong way.  And that was the case in our situation!

I got home from picking Julia up from preschool.  We were just finishing lunch when the phone rang.  I rushed to answer it, hoping it was a call with our test results, but it was just Jeremy.  I told him jokingly not to call anymore because it gets my hopes up about Evan's test results.  The phone rang five minutes later, and right away I thought it was probably Jeremy.  It was Doctor MacDonald!  I answered, trying to hide the hopefulness in my voice.  "Shana, have you heard?"  "No, I haven't heard.  Have you?"  "Yes!  We have results.  I have good news for you!  Very good news!"  It sounded like he was trying to hold back tears (have I mentioned that I love this man?!?!?!).  Doctor MacDonald told me that he was out of his office today, but his secretary had gotten the results and had faxed them to him.  He was in his car heading up north.  He shared this information with me about Evan's gene mutation:

Evan has a mutation on his ABCC8 Gene.  When they sequenced this gene in Evan's DNA test, at sequence number 631, one nucleotide was coded wrong.  A C was replaced with an A in the sequence.  And that one little mix-up prevents Evan's cells from releasing insulin into his blood stream.  So his body is making normal insulin, but the Beta cells, the cells that are responsible for releasing the insulin into the blood stream, can't do their job because of this mutation.  The Beta cells have receptors on them.  The receptors become stimulated when the body needs to release insulin into the blood stream.  The receptors then activate the potassium channels to release the insulin into the blood stream.  I think of the potassium channels as little slides.  The insulin slides from the Beta cell into the blood stream via the potassium channel.  So Evan's receptors never activate these channels, so the insulin is never released into his blood stream.  Now that we know this is the problem, we can give Evan a medicine called Glyburide.  The Glyburide acts on the sulfonylurea receptor, which activates the potassium channel, which allows Evan's insulin to be released into his blood stream.  It is a pill, but Goltz pharmacy knows how to compound it for us, and make it a liquid suspension. 

God has been at work so much for our family lately!  Neo-natal Diabetes Mellitus (NDM) is so rare, but about three weeks ago we found a family living in Rollingstone with a five-year-old girl who has a form of NDM.  She also has a form that can be treated with this medicine.  Until we met this family, our doctor didn't know if Glyburide could be a liquid suspension or not.  This family shared everything they knew with us, and let us know that Goltz pharmacy was willing to compound the Glyburide for them.  I am friends with a few school nurses, and one of them came to our knitting group one night and asked me a question that most people don't ask because they don't know much about NDM.  She asked me if Evan's diabetes was monogenic.  I got wide-eyed and said, "Yes....why, do you know about this?  Have you been researching it?"  And that's when she told me of the new student on her case load who was diagnosed when she was just weeks old.  Right away I asked my friend if she knew if this girl was on insulin or medicine, and she said the girl took a liquid medicine.  I was so excited!  We didn't even know if Evan had a type that could be treated this way yet, but just knowing that it was a possibility was great news.  My friend told the family about us, and they really wanted to connect with us.  My friend told me the family's name, and I came upstairs right away to tell Jeremy because she mentioned that the dad worked at Fastenal.  Jeremy's jaw dropped.  "I know him like the back of my hand!"  he said.  He even remembered this dad talking about his daughter's health concerns a while back when they were on a sales call together.  A small world?  Yes, it is.  But it is also a world where God is at work even when we don't know it.  When we first got Evan's test results we were told that no other child on record had his specific mutation on gene ABCC8.  But after further research, Doctor MacDonald found out of a boy in Europe who has the exact same gene mutation as Evan and is being successfully treated with Glyburide. 

I cannot even begin to express how blessed we are to have Doctor MacDonald as our doctor.  From the day we met him he has treated us like family.  I think he has broken down all boundaries doctors normally establish in their relationships with patients, and we are so glad he is willing to do that with us.  We have had his cell phone number from day one, and call him regularly on Monday and Thursday to go over Evan's blood sugar numbers and insulin plan.  We can also call him any other day or time that we need to.  "Just don't call me at 3 in the morning.  If you need to call me at 3 in the morning, maybe you should be calling 911 instead," he told us.  With this new medication switch we have been calling him about every three hours, from 6am to 11pm.  He even tells us when he'll be on vacation with poor service, or when his wife is trying to get him to go to a movie.  Once when we were scheduled to call him, he answered his phone but asked to call us back because he was out for a run.  And once he was on his bike, riding from his clinic to his lab.  He is a gift from God, that is for sure.

I will talk more about Evan's switch from insulin to Glyburide in a different post. 

Evan's Story

How we found out Evan was 1 in 400,000

Evan had a perfectly normal 4-month well baby check.  We got to see his pediatrician, Dr. Gerhard, for the first time.  Dr. Gerhard had seen Claire once when we came in on a weekend for her eczema, so we knew he was a great guy.  After Evan's check on August 31, I loved Dr. Gerhard even more!  I had never had a nurse or doctor commend me so enthusiastically for breastfeeding.  I think my nursing efforts and success were so much more noticeable with Evan, compared to our girls, because Evan was born so small, and at his 4 month check they were seeing outstanding growth.  So, although Evan was still following the 3 % growth curve for height and weight, he had doubled his birth weight and had grown four inches since birth.  Dr. Gerhard went on and on about how tough breastfeeding is, and how it can be a lot of waking up during the night, and that I must be doing such a good job of reading his feeding cues, and keeping my milk supply up.  He said babies often don't hit their growth hormone until 6 months of age, which is when you see them grow in length.  He said Evan is growing so much because he is receiving outstanding and optimal nutrition, because of me.  So that made me feel great (and a little embarrassed to be getting so much attention over it).  But then it was time for Evans shots, and only one nurse was available so he got them one at a time (three shots plus one oral vaccine).  He only cried while getting the shots, though, and then we headed to mom and dad's to pick up the girls.  That night Evan wasn't too fussy, so he was handling the shots much better than the last well baby check when he had the same round of vaccines.  He slept until 3 in the morning, and then started crying and wanting to eat.  I went in to his room and saw that he had leaked through ANOTHER diaper!  I had been getting used to changing his sheets at least once a day, sometimes two or even three times.  So I changed his diaper, his clothes, and his bedding, and then finally got around to feeding him.  This is when I noticed he was breathing pretty fast and heavy.  I thought it was just because he was so worked up because I had to do so much before I got around to feeding him.  But as I put him back in his crib that night, still feeling like he wasn't breathing quite right, I couldn't help but to think about the vaccines he had received and if this was some small reaction to those.  In the morning, he woke up at 6am to eat.  Jeremy brought him in to the bathroom where I had just gotten out of the shower.  He mentioned Evan was breathing funny, and I told him it was the same thing during the night.  I was just about to feed him when he had a huge spit up.  That's normal for Evan, and I knew he had over-eaten at 3am to try and calm himself down, so it made sense that he had such a huge spit up.  But he was immediately hungry again, so I fed him.  As soon as he finished eating he spit up two more times- more than I was used to even with Evan.  I called the Gundersen nurse advisor line, and the nurse thought maybe he was uncomfortable from the shots, and said to try Tylenol.  I tried that, and Evan threw up again.

To the emergency room

I called Jeremy, who was having an early meeting with our insurance provider.  I told him that I thought we should take Evan to the ER.  Jeremy came home, and all five of us headed to the ER.  I went in with Evan, and Jeremy stayed in the waiting room with the girls.  Evan threw up all over the triage nurse, and four times all over our little room in the ER, and even all over the ER doctor's pants and arms!  I felt awful, still just thinking Evan must have majorly over-eaten, which he always seemed to be doing.  We told them what had been going on with Evan at home, and that he had his well-check the day before with vaccines.  They did not think it had anything to do with the vaccines, which made me feel a lot better.  He did have the sniffles for a few days, so they were thinking maybe it was just a respiratory virus.  They did chest x-rays, but everything checked out ok.  The doctor said we could do a blood test, but if this was just a virus, which he thought it was, the blood test wouldn't help us any.  So they sent us home. 

A long day at home

All the rest of the day Evan seemed to be getting more and more uncomfortable, and his breathing was sounding and looking more and more labored.  He continued to throw up, so I called the nurse line again, and they gave me a feeding schedule that included using Pedialyte if he continued to throw up.  I did have to switch to Pedialyte because he couldn't keep milk down.  When I would give him the Pedialyte in the little medicine cup, he would gulp it right down, and his eyes would perk up for a few minutes, but then he'd go back into a restless, sleepy, totally out-of-it state.  It was really starting to scare me by early afternoon.  I called the nurse line one more time at around 3pm because it just seemed like he was so uncomfortable, he was making grunting noises every time he breathed, and I felt like his hands, feet and lips were turning ice cold.  His lips even started to look dark- almost blue or purple.  The nurse on the line said people often call 9-1-1 when they see symptoms like I was seeing.  I told her I was going to hang up and call.

A faster trip to the ER

 I think for about two hours I was wondering if I should call 911 or not.  It's like I needed permission to call or something.  I'm so glad I called when I did.  In the five minutes it took for the first responders to come, I felt like Evan had gotten significantly worse.  One of the first responders was the Stockton City Clerk, Beth.  First the had me lay Evan on the floor so they could look at him.  Then Beth held him, and it was when he was in her arms that I noticed how awfully sick he looked.  So small, the wrong color, and working so hard to breathe.  Also, his eyes looked like they were sinking into his head.  I was so scared.  I had called Jeremy right after calling for the ambulance, and he made it home from work before the ambulance got to us.  Then Julia and Claire woke up from their naps, and I was worried they would be scared.  They knew Evan had been sick all day, so I told them the ambulance would be coming to help Evan get better.  When the ambulance got to our house they gave Evan a little oxygen, and then got him in his car seat for the ambulance ride to the hospital.  Jeremy went in the ambulance with Evan, and I drove with the girls.  By the time we got to the hospital, Evan was back in the ER with an oxygen mask on, and they had him down to just his diaper, and were trying to get an IV in his arm for fluids.  I heard talk about them already drawing blood and sending it to the lab.  Not too much later, we found out that Evan's blood sugar level was over 780 (normal range for adults is 80-120), and that they were guessing it was diabetes related.  Winona Health said they couldn't do anything more for Evan, and we could choose to go to Mayo or Gundersen.  We chose Gundersen, since that is where our doctors are anyway.  Then they said we could get there in the ambulance or the helicopter, and they recommended the helicopter because there would be a nurse right there with Evan.  So we took their advice, and the helicopter was called.  I had called my dad as soon as we got to the ER.  Luckily he was home, and headed right to Winona Health to get the girls.  A nurse was coloring in the lobby with the girls, and they told us as soon as Grandpa arrived.  I told my dad that we had just decided to have Evan air lifted to Gundersen, and that they thought he had diabetes.  Julia heard me say Evan was going in a helicopter and she was very worried.  She said she had to go with him, because what if the pilots didn't want Evan in the helicopter.  I told her Daddy would be going with Evan, and I would be driving the van, and she and Claire would drive with Grandpa and go to get supper at McDonalds. 

A helicopter ride

As I was helping my dad get the car seats in his car, the helicopter arrived.  We saw it coming in, and Claire pointed and said, "There's Evan!"  I told them that Evan was on it yet, but he would be soon.  As the helicopter got closer to the landing pad, I was hugging my dad goodbye, and we both almost got blown over by the helicopter.  Grass and twigs were getting blown around and stinging us, and an open bottle of Mt. Dew sitting on a cement ledge sprayed all over me.  I ran back inside to see  Evan getting moved onto the stretcher that would keep him harnessed in for the ride.  I was terrified to see Evan getting loaded onto that stretcher, knowing that he would be flying to the hospital without me.  I was so glad Jeremy would be going with him, but also scared that if something happened during the flight they could both be harmed.  The pilots, a man and a woman, were so smart and knew what they were doing.  They even wrapped a towel around Evan's head so the loud helicopter wouldn't hurt his ears (adults would wear headphones).  Sadly, I don't think Evan even knew what was going on by this point.  When they wheeled Evan away, I gathered our things and headed to the van.  A nurse asked me who was driving me to La Crosse.  I told her I was driving myself.  And then I asked, "Is that ok?"  I wasn't even sure if I'd be able to get myself there.  But she said it was ok as long as I thought I was ok to drive, so I took off.  The helicopter still hadn't left, and they said it would be a twelve minute ride for them, so I was glad to get a head start.  I did ok driving, and even called my mom to tell her what was going on.  She had to work late that day, so she got my dad's message that he was headed to the hospital to pick up the girls so we could be with Evan.  I told her Evan was being airlifted and she said she'd meet me at Gundersen ER.  I never did see the helicopter fly overhead, and later Jeremy told me that they didn't follow the river like HWY61 does, but went at a straight shot over farmland.  It was a smooth and beautiful ride, luckily.  Right as I crossed the big blue bridge I called my friend Erin to tell her what was going on.  I broke down at that point.  I had already been crying, sobbing, and praying the most desperate prayers I have ever spoken, but having to tell her that Evan was being airlifted to La Crosse and that he may have diabetes, and that I didn't think he was going to make it sent me over the edge.  She was nervous for me that I was driving, but I calmed down and told her I was almost there and would keep her posted.  When I got there, I parked, and then my mom was waiting for me at the ER check-in desk.  I told the lady at the counter that my son had just been airlifted from Winona.  She checked the computer and said that they had already arrived, and she gave me Evan's room number up in the PICU.  My mom and I started up to the 5th floor when Jeremy called my phone.  He started explaining how to get up to the PICU, and what room Evan was in, but I cut him off and said, "I'm already on my way up.  See you soon." 

The PICU

The PICU was not as scary looking as I was expecting.  It was not overly bright and shiny like some hospital areas.  There were just four room stalls that had sliding glass doors on them, and curtains that you could close.  The small area outside of the four rooms was nice, with nurse tables and their computers, and it was carpeted.  When I got up there, many people were surprised to see me already.  There were some comments about avoiding speeding tickets, but my ears weren't working right.  All I could see was my baby, lying in a too-big-crib, looking way too small, covered with suction cups, a nasal oxygen tube, and too many other tubes to keep track of.  "This is mom, " someone said.  The medical staff surrounding Evan parted so I could make my way in.  Once again I broke down.  When I could breathe and speak normally again, I was filled in on everything.  The doctor on call for the next couple days was Dr. Strauss.  Evan's nurse was Amy.  Dr. Strauss was reviewing Evan's records and would want to speak to us soon.  Did I need anything?  "I need to pump," was all I could think of, as my survival instinct kicked in.  Feeding my baby keeps him alive.  I needed to feed my baby.  But does he have diabetes?  Will I ever be able to feed him again?  Someone rushed off to get me a pump.  Nurse Amy showed me where I could use it, and she hugged me, and looked so sad.  She said she was so sorry for me, and she said this was all so scary, and that no one should have to go through this.  I could tell the medical staff working with Evan were all very worried for him, and that made me worry even more.  After I pumped, Dr. Strauss wanted to talk with us.  My mom stayed by Evan's side.

Putting the pieces together

First we went over medical history.  No diabetes in the family, but Jeremy is adopted, so we're not sure about his family history.  Evan had been a normal, healthy baby from the start, right?  But now things started to make sense.  Evan was over due, but he was barely 6 pounds at birth without a trace of fat on his body.  I remember commenting with Jeremy on Evan's butt.  "Something is different about his butt?  Is it because he is a boy?  Do boy butts look like this?  Oh!  I know what's missing!  He has no butt cheeks!  Here is where his butt is supposed to be, but he just has a seam where his butt crack is supposed to be.  He has no butt cheeks at all, just a seam down the middle!"  Also, Evan had always been a very hungry baby.  I over-produced breastmilk with Julia and Claire, but seemed to be making just the right amount for Evan.  But this was probably because he was always thirsty.  His body was trying to get rid of all the sugar that wasn't being properly used by peeing it out, which made him always thirsty.  And he always spit up so much.  Probably because he was drinking and drinking to fight the thirst, and his poor newborn tummy was getting full to the max.  And he was the only one of my babies to ever pee through a diaper in four hours.  Evan did this almost every night.  Evan was also born with an elevated blood sugar, but it went down on its own shortly after he was born.  Evan was also a very sleepy baby.  He woke up to eat just fine, but he took lots of naps and could sleep through just about anything.  His blood sugar had probably been in the 300-400s for most of his life, which makes people very sleepy feeling.  Usually, with older kids, parents start to notice their child being thirsty all the time, going to the bathroom often, and possibly a decrease in energy or weight loss.  Dr. Strauss gave us the crash course on Type 1 Diabetes, but he also introduced something new to us.  Neonatal Diabetes.  It was a genetic disorder, affecting about 1 in 400,000 babies.  Gundersen Lutheran had never seen a baby under 18 months of age with Type 1 Diabetes.  Dr. Strauss wanted to get a blood sample to an institute in Chicago right away, where they test for different genetic deformations which cause neonatal diabetes.  He also explained that Evan's body was in a state of Ketoacidosis.  Evan's body could no longer keep up with his high blood sugar.  It had gotten to a point where his body was very acidic.  His brain was telling his body that there was too much CO2 present, which was causing the acidity.  To get rid of the CO2, his brain was telling his body to breathe.  Breathe more, and breathe faster to get rid of that CO2.  Evan's poor little body had been working so hard all day trying to breathe out the CO2, but all of that breathing just causes more problems.  All of Evan's electrolytes were way out of balance, too.  And all of the vomiting was a sign of hyperglycemia, or high blood sugar.  Evan's body was basically starving.  His body was not able to get the sugar out of his blood and into his body cells for energy, so his body started digesting its proteins.  This causes ketones to develop in the body.  Evan's urine was tested and came back positive for ketones.  Dr. Strauss explained that this was going to be a slow process.  They could not just make all of Evan's electrolyte levels and blood sugar level go back to normal too quickly because that could cause even more damage to his cells and his brain.  If things moved too quickly, the brain could swell and bruise, causing brain damage.  Dr. Strauss came in to look at Evan with us.  He commented that Evan was still breathing so hard.  He told us something that terrified us.  he said that when babies have been working so hard to breathe all day, just like Evan had been, it is only a matter of time before their bodies give up.  He didn't say anything else, causing me to ask a very difficult question.  "Give up?  Like, to quit breathing?  What do we do then?  What happens then?"  "Then we breathe for them with a respirator," he said, until they can breathe on their own again.  "Will we know when he is about to give up?  What will we do?"  Dr. Strauss said that is why we have all of the monitors on him.  He will give us signs that he is giving up, and the staff will be able to get everything set up to breathe for him.  I could not take my eyes off of Evan, and his little chest working so hard to breathe.  He was breathing with such effort his whole body was moving.  I wished so badly we could do some of the work for him, or take all of the problems away from his own body and put them into our big adult bodies.  Jeremy and I took turns sitting by Evan's side that night.  We were given a family room to sleep in, but even when we tried to use it, we weren't able to fall asleep.  We couldn't hold Evan, and I couldn't nurse Evan.  They were not happy with his electrolyte levels or his blood sugar level, which wasn't going down at all, so they started an insulin drip and continued to adjust the electrolytes that dripped into his IV.  They continued to tell us that this would take some time, and that even when older children come in with severe Ketoacidosis it can take a few days to get everything regulated and stable again.  That night Jeremy and I took turns going to our family room to try and get some rest.  While I was in Evan's room, I sat right by his hospital crib and prayed out loud.  I begged God to let Evan stay with us.  I didn't want him to die.  I continued to remind myself that God was not PUTTING us through this, he was HELPING us through this.  Even so, I kept saying, "Ok, God.  I get it.  I need to appreciate what I have.  I need to stop complaining about the little things because my life is so good.  I hear you now.  I will appreciate my children more.  I will play with them without trying to fold laundry at the same time.  I will worry about cleaning less and listening and playing more.  Please don't take Evan.  We want to raise him into a grown man and watch him do great things on Earth."  When you are in a despersate situation, I think it is natural to start trying to wheel and deal with the person in charge.  At the same time, I was sort of preparing myself for the worst.  I tried comforting myself by thinking of heaven, and what it would be like there for Evan.  I sang to Evan a lot that night.  I sang "Amazing Grace," the first verse and the 5th verse, which is my favorite.  "When we've been there, 10,000 years, bright shining as the sun, we've no less days to sing God's praise, than when we first begun."  I knew that if it was Evan's time to leave us and be with God in heaven, we would all be together again some day.  All night long, the nurses came in to check Evan's blood sugar.  He got pricked every hour on the hour.  Also, every four hours the lab techs would come up and do a bigger blood draw.  His poor little heals looked so sore.  On Monday they will do a bigger blood draw so they can send a sample to a lab in Chicago.  The Chicago lab does DNA testing, so hopefully we will know what form of neonatal diabetes Evan has, like which of his genes is affected, and how to best treat him.

Friday

It was a relief to see the sun rise this morning.  When I came back into Evan's room it seemed a lot more peaceful.  All of his electrolyte levels were still doing the wrong things, and his blood sugar was still high, but it had come down some.  The best thing I noticed was Evan's breathing.  His little chest was still working hard to breathe, but the act of breathing wasn't moving his whole body.  Also, his eyes were different.  They didn't look sunken into his head anymore.  The fluid he was getting must be hydrating him.  Also, his eyes were all the way closed and he seemed to finally be resting.  When we were at home yesterday, he would try to rest, but his eyes would stay half way open and would roll back into his head so all you saw were the whites of his eyes.  He looked so much better already, and I was so glad he looked comfortable and peaceful.  The nurses continued to check Evan's blood sugar every hour, and the lab draws continued to happen every four hours.  Our overnight nurse was Kimberlee, an older woman that made us feel very safe.  Then at 6:45 our new nurse came, Amanda.  We recognized her from when one of the girls was born.  Jeremy headed to Winona today to take care of a few things at home.  We had food out on the counter, laundry in the washing machine, and other things that needed cleaning up from yesterday when we left in such a hurry.  He also brought Dash to my mom and dad's house, and some clothes for us and the girls.  The Easteps had been letting her out for us, but they leave today for D.C.  My dad didn't have to work again today, so the girls will be mostly with him, but my friends Erin and Robyn will be coming today to pick them up and take them to a park or something.  While Jeremy was gone Evan continued to improve.  He was waking up a little bit here and there.  I can't imagine how tired he must be from all of this.  They took the tube away from his nostrils that was blowing air in, too, because he was awake enough sometimes to be pulling it out and itching at it.  And his oxygen levels have been pretty good through all of this, so he doesn't really need it anymore.  He is still hooked up to so much, though.  They told me that maybe Saturday night we will be able to hold him.

Erin has been sending me pictures of the fun morning Julia and Claire had.  Jeremy said he had just gotten back to my mom and dad's to drop off Dash and the clothes, and he was going to swing out in the backyard for a bit with the girls when Erin and Robyn came with their kids.  Luckily we play with Erin and Robyn's kids a lot, so Julia and Claire are very familiar with all of them.  Even so, Claire was hesitant to go in their vans, and said she wanted to stay with my dad.  Jeremy left, thinking it would be easier to convince Claire to go if he was out of the way.  Claire did decide to go, and she rode with Robyn, Quinn, and Cora,  and Julia rode with Erin, Peter, Emi, and Lainey.  They went to Myrick Park and played at Kid's Coulee for a while.  Erin said Julia and Claire were so good all day, and I hope she was telling the truth!  She said Claire would run with the big kids, but then she'd come back by Erin and start calling for the big kids.  "Peter!  Where are you Peter?  Julia!  Where are you?"  There is a little nature center and outdoor nature area at Myrick now, too, so they went to see the turtles and the toads and things like that.  Then they had a picnic lunch.  Erin said Julia ate peanut butter and jelly really well, and luckily Erin eats with us often enough to know that Claire doesn't eat that, so she made Claire a ham sandwich, of which Claire ate the crust off of :-)  Then they headed back to Grandpa's for nap time.

What a tough little guy!

Wow!  We weren't expecting to get to hold Evan until tomorrow night, but this afternoon (Friday) they let me hold him just to comfort him a little, and it was very obvious that he was interested in nursing.  They checked with the doctor, and he said since Evan was on an insulin drip there is no reason not to feed him if he is feeling ready.  So I was able to nurse him, which was a little tricky with all the tubes and machines that he is hooked to, but it was so wonderful.  For a while I was feeling like I would never get to nurse him again, so it was such a good surprise.  I was planning on taking Julia and Claire out for supper tonight, and I still will, but now I will have to be watching the clock to make sure I'm back if Evan gets hungry again.  He never has liked taking bottles, and we especially don't want to make him try a bottle while he's recovering from all of this.  Well, time to go see my girls!  I miss them so much.

Coney Island and a little shopping!

 
I drove to my mom and dad's to pick up the girls, and I wanted to have as much time as possible with them, so instead of moving the car seats from my dad's car to the van, I just took my dad's car and he drove the van to the hospital because he still hasn't gotten to see Evan.  I took Julia and Claire to Coney Island, because it's fast, and we all love it!  Then we went to Barnes and Noble and they picked out some books and a toy for Evan (and a few things for themselves :-))  It was so nice being out of the hospital and spending time with them, but it also felt wrong.  I was uncomfortable being away from Evan and not knowing what was happening with him.  I just wished we could all be together again.  We didn't think we'd have Julia and Claire visit Evan until he was out of the ICU, though.  I headed back to the hospital with the girls.  When I left to go get them, Lisa and my mom had just come up to visit.  Lisa had just left, but my mom and dad were there (dad went to see Evan when I came and got the girls from him).  So mom and Jeremy came down when I got to the parking ramp.  Jeremy said goodnight to the girls, and Gramma took them back to her house.  My friend, Erin, stopped by to bring us some snacks for our room, and some flowers from my knitting friends.  When I got back up to the room Evan was ready to eat again.  My dad and Erin stayed to visit for a while, but then my dad had to get back home to help get the girls ready for bed, and needed to pick up more night time diapers for them.  My Aunt Vonnie and Uncle Lance peeked in tonight, too, because their daughter, my cousin Heather had her baby, and was on the same floor as us.  Erin stayed for a while with me while Jeremy went to get some sleep in our room.  Evan had a rough time tonight when the lab tech came up to draw blood.  His heel was so bruised and sore they decided to draw blood from a vein.  After attempting to get his vein for what seemed like an eternity with him crying hysterically, she gave up and went for the poor heel again.  At least they were letting me hold him now, so I could pick him up after she had finished.  After Erin left, the nurse reminded me that it was ok for me to go to our room and get some rest, especially since Evan was sleeping pretty good by now.  I told her I would head into our room at midnight and Jeremy would trade places with me.  They promised to call our room phone if Evan woke up or got hungry.  Jeremy and I both tried to get some sleep, but it's so hard to stay away from Evan, even when he's sleeping, so Jeremy headed back to the PICU room (our family room was just down the hall from the PICU).  Our phone rang around 2:00 because Evan was hungry.  I have never been so glad in my whole life to be woken up in the middle of the night to feed a baby!  Oh, and I forgot to mention, Pastor Beth came to visit us today,
too.


Evan is still very sleepy.  They keep asking us if we are seeing our old Evan back yet, but we aren't quite there yet.  Still, it is so good to see him actually resting, and breathing normal again.  He hasn't noticed the mobile they brought him yet, but I know he'll love it once he is more awake.  I mentioned to a nurse that he loves the mobile we have at home, hoping that they would have one for us to use here, and they brought one in right away.

Saturday

Not much is going on today.  Jeremy and I got to go have breakfast together in the cafeteria because Evan was sound asleep after I fed him.  We have been eating all of our meals in the cafeteria, unless we are out with the girls.  The Children's Miracle Network provides families with meal vouchers to use in the cafeteria, so we get $16 each day for food.  It's so nice.  Because of the $16, we usually only spend a few dollars at each meal.  And I personally LOVE the cafeteria food.  It's good and healthy, and everything tastes a little bit better when you don't have to clean up after making it.  And it's just so nice to be able to run down and grab some food and get back up to Evan. 

It's funny how you can be aware of a charity your whole life, but never really give it much attention, until it is helping you in so many ways.  There is a big coin barrel at the mall, and when you put your coins in the different slots they go down different slides and loops and funnels.  The money goes to the Children's Miracle Network, and Julia and Claire usually empty out all the change in my purse in this barrel when we go to the La Crosse Mall.  Last night, when we went to Coney Island, I made sure to stop at that coin barrel and give them lots of coins to put in.  As they were putting the coins in I was thinking about all of the ways the Children's Miracle Network was helping our family now, and would be in the future.  I wasn't going to say anything to the girls about it, but all of a sudden, Julia asked, "Where will this money go?"  I was more than happy to tell her where it would go and what would be done with it.  It was hard to keep the tears from choking me up as I told her that this money was helping us right now.  It was helping us pay for the meals we ate while staying with Evan.  It provided us with the Glucose Meter that we were given in the hospital, and would be taking home with us to do Evan's blood sugar checks.  In the future, if Evan is a candidate for an insulin pump, the Children's Miracle Network will pay for it if our insurance doesn't cover it.  I'm sure there are even more ways this charity has helped us this week that I'm not even aware of.  I will be forever grateful to the Children's Miracle Network.

Evan has been more awake today, which is nice to see.  We have a new doctor working with us now, Doctor Mark Neumann.  He is the PICU doctor now, instead of Dr. Strauss.  He's just as nice and is also very knowledgeable on diabetes.  Tonight I will head over to mom and dad's to spend some time with the girls again.  My dad had to work today, so my mom has had the girls all day.  Jeremy went and spent a little time with them this morning.  I'll probably just eat supper with them at my mom and dad's house and then play for a bit.  I miss them so much, and I worry that this is really hard on them.  We are so lucky that we have so much family here to help us out, and to keep Julia and Claire busy and happy.

Well, because all of Evan's electrolyte levels have been pretty stable and at good levels, and his blood sugar has come down, they are going to unhook him from everything!  He will still get hooked up to the heart/oxygen/breathing monitor just so they can check in, but otherwise he's unhooked from everything!  They are giving him a base level of insulin, which is supposed to last a long time in his body, like close to 24 hours.  I'm able to nurse him whenever he wants. Now they will only be checking his sugar levels every 3 hours instead of every hour. They will be checking his electrolyte levels at 6pm and 6am to see if everything is staying steady with this change. He may need short term insulin shots if his feedings make his blood sugar jump too much. It's nice to see him unplugged!

It was fun seeing Julia and Claire tonight, but also a relief to get back to the hospital.  I spent some time holding and feeding Evan while Jeremy got some rest.  Then at 11pm, our new night time nurse talked me into going to get some rest, too.  It was hard to leave Evan though, because the two nurses in charge of him tonight are not our favorites.  Just loud (even though it's almost midnight and my baby is sleeping!) and they just say dumb things.  I know I'm majorly stressed out, and not getting any sleep, and worried sick, so I'm a little grouchy, but seriously, I don't want my baby to have to put up with them!  Luckily the one who is really in charge of Evan isn't too bad.  But the other one, who just comes when the in charge lady needs help, is awful!  She talks such awful baby talk to Evan, and says things like he's going to grow up and be a liar like her son is.  And instead of humming quietly to him or just talking to him, she looks at him with a goofy face and says, "LA, LA, LA, LA, LA, LA!"  really loudly.  Oh well, at least tomorrow is a new day with a new nurse!  (Dear God, thank you for ALL the nurses that are helping us through this.  Thank you for giving them patience to put up with nervous grouchy moms like me.  Amen.)

Sunday early morning

I got a call at 2am that Evan was awake and acting hungry.  I rushed to the PICU as fast as I could, washed my hands super fast, and got right to him so he wouldn't have to be comforted by the nurses for too long.  I could tell he was happy to see me, and he was really hungry, just like the Evan I have always known.  He was hooked back up to an electrolyte drip, though, because his Potassium levels were low.  I could tell he has his days and nights a bit mixed up, because after I fed him he was wide awake!  He was so bright-eyed, which was nice to see.  I put him in his bed after a bit, because I'm still nervous that I'm going to pull on one of his tubes or his IV, and he got to see the mobile they brought for him.  It even lights up and projects stars on the ceiling.  The lab tech who was on call tonight was an IV specialist, so they asked her to come in and look at his IV.  It had kind of gotten pulled out of his arm, so they decided to put it in his ankle instead.  I got to be with him while they did this.  I was dreading it at first, because I thought it was going to be as bad as it was last night when the girl tried to find a vein to draw blood.  But this lady was really good. She got it in quick, and they gave me sugar water in a little tube to squeeze onto his tongue to keep him happy.  He still cried a lot, but he did like the sugar water.  It's a lot easier to feed him with the IV in his ankle, too, so I'm glad they made that change.  He seems a lot happier all around.  The best news is that there is talk of us getting to move to the pediatric floor later this afternoon!  That's good news, and scary news, because on the PEDS floor we have to start learning how to give him his insulin and check his blood.  I feel sick to my stomach just thinking about it.  I don't know how I'm going to do it.


At about 10:00 this morning, Jeremy headed home to take care of a few things.  Luckily he did, because a family at church showed up for the cookout we were supposed to be hosting.  They missed the email that went out saying it was cancelled, and they hadn't been in church that morning to hear the message.  Jeremy told them what happened.  He also finished up some laundry and cleaning that we needed to get to, and brought in the mail.  Then he went to my mom and dad's house to drop off more clothes for the girls.  While he was doing all of this, I got to visit with the girls at the hospital.  My mom brought them up, and I met them outside of the PICU.  We didn't think they should come see Evan until we were down on the PEDS floor, so I met them out in the hallway.  My mom went in with Evan and got to rock him and hold him while I played with the girls.  The weather has been pretty cool while we've been in the hospital, but today was pretty warm.  We walked outside to a little park that is on the hospital grounds.  We had to walk the long way around, which was made even longer because of some construction going on.  Because it was Sunday, no one was working in the construction area, so I was tempted to just cut through, but it was all roped off with caution tape, so I decided we should just take the long way around.  It was fun, and the girls had fun playing and collecting rocks from the garden areas.  Time goes by so fast, though, and before I knew it, it was time for us to head back upstairs in case Evan was getting hungry.  And, of course, he was :-)  My mom and I didn't have as smooth of a trade off this time with the girls.  I tried calling my mom's phone to tell her I was coming up with the girls.  I figured she'd put Evan down and come out into the hallway.  But her phone wasn't working, so I brought the girls into the PICU with me, and told them to stay right by the nurse station.  I ran over to wash my hands, but before I finished they noticed Gramma holding Evan in his room and ran on in.  They were holding flowers from the bouquet of flowers some friends sent us, and flowers aren't allowed in the PICU, so I felt bad about that, too.  The nurses didn't really mind, though.  Good thing Julia and Claire are cute.  My mom took the girls to get some lunch, and they were going to stop at Copeland Park to feed the ducks and go in the splash park area.  Aunt Betty went with them, too.  I was hoping to get some lunch after feeding Evan, but things seemed to have gotten pretty hectic in the PICU all of a sudden.  The boy next door, who had been there for a while even before we got there, was having a lot of seizures and breathing problems.  A few times all of the nurses in the unit had to assist in his room.  Amanda was our nurse again today, but she wasn't sitting at her desk outside of Evan's room very often because of everything else going on in the unit.  There was also a new girl brought in last night, and all of a sudden her needs changed, too, and they were having some emergencies over in her room.  When Amanda did sit down at her desk I asked her if it was ok if I ran down to get some lunch and bring it back up.  Evan was sleeping, so I knew even if she had to help in another room he'd be ok.  Thank God the crises weren't happening in our room!  So I ran down and got a cheeseburger, some cooked carrots, and some chocolate and vanilla frozen yogurt.  Up until this meal, I had been having to force myself to eat.  Smells of food or the sight of food made me feel sick.  We were finally at a point with Evan where I knew he was going to make it, and was finally able to relax a little.  Now when I try to go to sleep, too, I fall asleep a lot easier.  Before, if I headed to our family room for a two hour rest, it would take me a whole hour just to fall asleep.  My lunch was amazing.  I got a cheeseburger, carrots, and frozen yogurt.  I have been getting the soft serve frozen yogurt, chocolate and vanilla twist flavor, twice a day lately.  It makes me feel like I'm spoiling myself, and it makes me happy.  I even turned on the TV and tried to just pretend everything was normal again.  That lasted a few minutes, when a nurse I didn't know ran into our room, and said, "We need your bed!"  Oh!  Ok...so I picked Evan up, and he was still sound asleep.  She wheeled his bed out of the room and headed next door to the little girl's room.  I wasn't sure when they would be bringing Evan another bed, so I just held him while I finished my lunch.  After about 45 minutes, our nurse, Amanda, brought in a new bed for Evan.  It looked like a torture device or something!  It was a crib, but it had big round sides, and thick heavy metal bars.  The strangest part about it was the plexi-glass dome hanging above the whole thing.  It hung down to just the right level where you were very likely to bang your head on it every time you got your baby in or out of it--and that's just about what happened, too.  But again, I was just lucky that someone needed my baby's bed more than he did.  After getting used to this new bed, I realized that the dome on the top was to make it kind of like a cage so an older baby wouldn't be able to crawl out.  The bars could raise all the way up to the dome.  So it was like a crib with a cover on it.  Luckily we didn't need to use the lid for Evan.  I still hadn't taken a shower, and it was after noon already, so I told Amanda I was going to do that quick while he was still sleeping.  I took a quick one (we use the shower right in the PICU unit) and it's a good thing I did, because as soon as I stepped out of the shower room they told me Evan would be moving down to the PEDS floor.  I didn't realize it was going to happen so soon.  Jeremy was planning on being back before 3 because that's when they said the PEDS floor would be ready for us.  But they were ready to get us out of the PICU.  So I packed up all the things we had in his room, loaded them onto his new bed (which, unfortunately, would be his bed on the PEDS floor), and wheeled him down there.  He was still sleeping and the bumpy, fast, noisy ride down to the PEDS floor startled him awake.  Evan greeted his new caregivers on the PEDS floor with loud, shrieking cries!  I tried telling the nurses that he was sleeping and had gotten startled awake, but I'm not sure if they heard me or not.  Our nurse was Lori, and she said she would leave me alone to soothe him.  As I fed him, I took in our new surroundings.  What a beautiful room!  It was big, spacious, and had lots of places to sit.  The floor was pretty (wood) and everything looked fresh and new.  We had a bathroom in this room with a shower that we were allowed to use, so we wouldn't have to ask the nurses to take showers anymore, we could just do it whenever we wanted to.  There was a couch that pulled out into a small double bed.  We wouldn't have our family suite upstairs anymore, now we would get to sleep right in Evan's room with him.  It was also very quiet on this floor, and the nurses really only came in when they had to or if you called them in.  I had texted Jeremy to let him know we had moved already, and he was on his way back to the hospital.  When he got to our new room he ran back upstairs to pack up all of our things in the family suite.  Our new room really is heavenly.



Time to get brave

At 6:00, Lori came in and said, "Ok, who wants to check his blood sugar?"  We were eating our dinner, and were just about finished, and I almost choked on my food.  "What?  You want us to do it?  Don't we have to have a lesson on how to do it?  Shouldn't we practice first?"  She said no, don't worry about it, it's a piece of cake.  I think she knew this is the attitude she needed to have with parents who were new to this thing.  If she made it seem like a big deal, we would have been even more nervous.  Instead, she made it seem like something anyone can just do.  And now we know that it really is a simple thing to do.  Jeremy stepped up and said he'd do it.  "What?!  You're going to do it?  Really?"  I was so proud of him.  Jeremy often times passes out, or at least gets really close to passing out when he gets a vaccine himself.  I was so proud of him for being so brave, and so relieved that it wasn't my turn to try yet.  Jeremy did a great job!  Evan's blood sugar level told us that he would need some insulin, so Lori went to get it ready.  She said she would give it to Evan, but Jeremy said he'd do it.  "I'm going to have to eventually," he said, "so I may as well do it here and get lots of practice with nurses here to help me."  What a guy!  I, on the other hand, was told that an orange would be delivered from the cafeteria for me to practice on.  I had read in our diabetes book that they wanted us to read that usually parents practice on oranges first and then each other!  I didn't think Jeremy was going to let me practice on him, and I didn't really like the idea of being practiced on either.  We were checking Evan's blood on his toes, just like they did upstairs, and giving him the shot in his thigh, which is a pretty fatty area.  There aren't many fatty areas on his body to choose from, and the insulin needs to go into the fat area, not the muscle.  If it gets injected into the muscle, Evan's body will absorb it too quickly, which could cause him to have a low blood sugar.

I was having trouble enjoying our new room knowing that at 9:00 I would need to check Evan's blood.  I was working myself up over it so badly I was starting to feel sick again.  Luckily, our night time nurse was Tara, who we had one night up in the PICU when she was filling in up there.  She helped me through it.  I only had to check his blood sugar, though, which wasn't so bad with the lancing device we were using.  You don't even see the needle, and Evan sometimes sleeps right through the process.  At midnight I would be able to check his blood again, and Tara said I could give him his insulin if I wanted to, but if I wanted to wait until morning when I was more awake I could.  I told her I would do it so I could get it over with and stop worrying about it.  I tried to get a little sleep after she left, but I kept looking at the clock to see how many more minutes until I would have to give my baby a shot.  Finally, she came back in, I checked his blood, and he needed insulin.  Tara went to go get it, and I quick practiced on the orange a few more times.  She helped me hold Evan's little leg, and I went to poke the needle in.  It hit his skin, but wouldn't go in.  I wasn't pushing hard enough.  This was NOTHING like the orange I practiced on!  The needle practically FELL into the orange.  I picked the needle back up.  "You need to go at it quicker, like a dart," Tara said.  I took some deep breaths, and poor Evan was really crying by this point.  He didn't like being held down, and he had definitely felt my first attempt.  I went for it again, the needle didn't want to go in again, so I made myself push a little harder.  It went in, and I pushed the syringe down to inject the insulin.  I felt awful!  I felt like I did such a bad job, but of course Tara said I did just fine.  They keep telling us that the needles we are using right now are for older children, but they are the smallest ones the hospital has.  I felt like when I went to inject the insulin, I couldn't hold the needle still, and when I pushed the syringe down the needle went down farther, too.  I was so worried that I had gotten the insulin into his little muscle.  But, it can only get better from here.  At least I made it through my first time.  And Evan went right back to sleep.  In the morning I told Jeremy that I did the blood check and the shot during the night and he was so proud of me.  I'm glad we can support each other and cheer each other on.  It's so hard for both of us.  I keep thinking about the nurse who gave Evan his shots at his four month check.  She was the only nurse available.  Usually they like to have two nurses come in so the baby doesn't feel so many pokes.  But she was the only one.  I said jokingly, "Sorry I can't be of more help.  I'll hold his hands out of the way anyway."  She told me that she would never be able to give her children shots.  She does it every day all day, but she said she would never be able to do it to her own children.  I remember agreeing with her, that that was something I'd never be able to do either.  Hard to believe how much has changed in our lives in just four days.

Monday- Thank God for Miranda!

Our new day time nurse just came in to meet us.  Her name is Miranda.  She was pretty quiet--I hope she's friendly.  She is very tall, beautiful, and blond. 

We are so glad Miranda is our nurse!  She is very caring and a lot of fun, and very smart.  She is taking good care of all of us.  She has been giving us chapters to read in our diabetes book, and then she quizzes us on what we should know.  We sure are learning a lot.  Our new doctor here on the PEDS floor is Doctor Klevan.  She seems like a movie star around here to me.  Whenever she comes into our room it is with a flourish, and there is always a gaggle of people trailing after her.  Mostly medical students (or photographers!).  She wears beautiful clothes and non-doctorish shoes.  Probably the most memorable thing she has said so far is, "Me?  Take blood?  No.  I don't take blood anymore."  Oooook.  Nice to know that job is below you!  The reason we asked if she would be taking Evan's blood today is because when we were up in the PICU they said that if the amount of blood needed for the Chicago lab DNA test was a significant amount, they would have someone really good do it, like Dr. Neumann or another doctor.  Because it had been so hard to find Evan's veins before, they thought they might have to take the blood from an artery, and that's why they would want a doctor to do it, instead of a lab tech.  Luckily, after talking with the Chicago lab, they decided that they would just try and get blood from a vein in Evan's wrist/hand again.  I asked if they were going to have a doctor do it, or a nurse who is really good at it, but they said it would just be someone from the lab.  She was really good, though.  I was in the room with Evan when they came to draw the blood, and I was expecting it to be an awful task again.  She took her time deciding where to poke him, and when she found a good spot it only took her a quick minute to get everything she needed.  I was so relieved when she was done!  I told her she did such a good job, but I don't think she was one to take compliments.  They will get the blood sent to Chicago today, but we probably won't hear back from them for six weeks.  They will do a DNA sequencing with his blood to see if they can tell which one of his genes may be affected.  Right now we don't know if Evan has type 1 Diabetes or Neo-natal diabetes mellitus.  There are even some forms of NDM that go away as the child gets older, which would be so amazing.

Oh, and the reason I said Dr. Kleven has photographers following her around is because for some reason she needs to be photographed this week for some article or something, and she asked us if she could be working with Evan for the photo shoot!  We said yes, of course.  Evan deserves a little fame.


My college roommate, Jill, posted this on my Facebook page.  I'm so sad that Evan has diabetes.  But I am thankful that it is a disease that is being researched, and that people live with every day.  Diabetes care and treatments have come such a long way in a short time.  Here's to future success in finding a cure!

Tuesday

More reading from our diabetes book, and more quizzing from Miranda.  Today Tara, who we first met up in the PICU, and then she was our nighttime nurse our first night on the PEDS floor, was also doing a day shift on the PEDS floor.  Miranda said she and Tara fought for who would get to be our nurse, and Miranda won.  We really do love working with Miranda, so we were so glad to see her again this morning.  Now we are starting to look at the syringes each time they give us one for Evan.  Miranda quizzes us on how much insulin is in the syringe, and has us practicing drawing up insulin using saline solution.  It is tricky.  Evan gets such tiny amounts, and if you get an air bubble in there and don't notice it, it could really change the amount he's getting. 

Tonight, Lisa, Scott, Ben, Mom, Dad, and the girls came to eat pizza with us.  We went to the lounge at the end of the hall.  The lounge has lots of windows, and it felt so good to be able to see!  Our room has a window, but it looks out at a brick wall.  And when we walk down to the cafeteria we don't get to see out any windows really, either.  I didn't realize how much I missed going outside, or just seeing out a window!

Before Mom and Dad and everyone came, my friend Andrea stopped by with her girls to drop off a gift for Evan and Julia and Claire.  She was just going to drop it off at the desk, but the nurses had her wait and they came and got me so I could visit with them quick.  It was so nice to see another friend!  It helps remind me that the world is still going on as normal outside of the hospital, and gives me hope that soon we will be returning to our "normal" lives.  It will be overwhelming to try and resume our normal activities while managing Evan's diabetes.  It's hard for me to imagine that in a few days I will be home alone with my three children, but now I will have to be checking Evan's blood around the clock, and giving him insulin.  It was fun having everyone over for pizza.  It was loud, wild, and crazy, just like our family gatherings always are, but I really noticed that Evan seemed to perk up with all the familiar noise.  I'm sure he misses life at home just like we do.  When it was time to check Evan's blood, Jeremy took him back to the room, and I went down to the cafeteria with everyone else so Julia and Claire (and I!) could get some frozen yogurt.  Julia and Claire noticed the toppings, of course, so we all dumped some toppings on our yogurt, too.  I wish I would have noticed the topping bar sooner :-)  My friend Jerry was going to visit this afternoon, too, because he said he had an appointment for one of his children, and would be just minutes away from us.  He never came, but with all of our family commotion I forgot about it for a bit.  But then I got an email from him later that said he felt so silly asking an employee at Winona Health where the 4th floor was, only to find out that Winona Health doesn't have a 4th floor!  I felt so bad!  I didn't realize he thought we were at Winona Health still!

Wednesday- Getting ready to go home!

We will get to go home today!  A lot needs to get done first, though.  We need to finish getting quizzed on our diabetes book chapters.  We need to go to the pharmacy to practice picking up all of our supplies.  This pick up will supply us with everything we will need for our first week at home, and will also tell us how our insurance is going to cover all of Evan's supplies.  Oh, and while we do all of this, Evan gets to be a star and pose in some pictures with Dr. Klevan!  Way to go, Evan!

Yesterday, before Miranda left, we asked her if we would see her on  Wednesday.  We didn't think we would because upstairs the nurses worked two days on and then had three off.  But Miranda said we would see her, just later than usual because she had to get braces put on.

Julia and Claire came to visit early this morning.  I took them into the play room to meet with one of the child life specialists who works in there.  She is a diabetic herself, and helped me talk to Julia and Claire about Evan's diabetes.  She was really nice, and gave them a diabetic shadow buddy.  It's a cloth doll with a little hospital gown on.  Under the gown he has his diabetic kit with his meter, syringes, and insulin.  He even has red spots on his fingers where he gets his pokes when he checks his blood.  She even brought out her own kit and showed Julia and Claire how she checks her own blood sugar every day.  Julia was really nervous about that, and even asked if she was going to have to take a turn.  Claire just watched.

We had a little trouble picking up our supplies from the pharmacy.  They didn't have syringes small enough for us.  We give Evan such tiny amounts of insulin, and the pharmacy doesn't keep those on hand.  So the nurses on 4th floor gave us as many as they could, which ends up being enough to last us five days at home.  So we hope we can get HyVee to order the right ones for us.  Otherwise, everything else was in stock and because we have already met our copays/deductibles for the year, everything was covered.  Thank God we have good insurance through Fastenal.  It's very scary to think that all of this stuff we have for Evan now is going to keep him alive.  We need to make sure we don't run out of anything, or forget anything at home.  Good thing I like organizing things, and Jeremy is very detail oriented, too, so we'll be a good team. 

Well, heading home as soon as they bring us our discharge papers!  Then mom and dad will bring the girls and Dash sometime tonight, too.  What a week it's been.