Day 12 - Evie Comes Home!

Sorry I don't have pictures to post, but Evie got to come home today!!! Her potassium level was within normal range, so after the attending doctors talked to the nephrologist, they said she was OK to go home. I have to take her for bloodwork on Tuesday, but thankfully we can do that at our local hospital. I hope that more frequent lab work and more careful monitoring by he specialists will prevent this situation from happening again.

We are so very grateful to our whole family for helping out whenever help was needed, whether it was watching Gavin or trekking down to Hope to sit with Evie and encourage her to eat. Also thank you to our dear friend Laura who helped watch Gavin and has her own three little ones at home. We are also grateful to everyone for all the prayers that were offered - without that we never could make it through any of these situations with Evie. Now that she is home, we will work on helping her get stronger, eat more, and hopefully talk more!

Evie Update - Day 11

Well, Evie did not come home today as I had so optimistically hoped (hey, I can't help it if I am a "glass is half-full" person)! The doctors say she may come home tomorrow, or maybe Sunday. Her bloodwork showed an increase in her potassium, so they lowered the dose of one of her diuretics. At that point, the "wait and see" game started all over. I hope I can bring her home tomorrow!


Evie continued to eat well today (sausage, chicken nuggets, Cheetos). The staff nutritionist was pleased enough to say that Evie's nutrition is "fine." She has never said that to us before!

Evie discovered that she can bounce back against her pillows and shake her bed a little - enough that her greeting cards and photo magnets rattle! She thinks it's quite funny:

Evie Update - Day 10

Evie is officially off of all her IV medications! The ones she had been getting have been converted to oral doses. So now it is "wait and see," to make sure she is doing well on the converted doses. I have been told that converting meds from IV to oral is not an exact science, because IV meds are more potent and are effective in smaller quantities. This morning I was told, "we need to watch her for a day or two." Having her home is so close, it's killing me!

Evie's new favorite food is Cheetos, which is my fault. I just love Cheetos and I shared some with her yesterday, and that was all it took. I know Gavin likes them too, even though I have not given Cheetos to him on a regular basis. Maybe Cheetos will be my motivator for officially potty training Gavin. I think he's ready, because he recently started pointing to the front of his diaper and saying "pee," and he already points to his rear and says, "poop." (I know, if you don't have kids you probably didn't want to know that, but it is a really important step!)

Here is Evie holding up a Cheeto:




Uncle David has a co-worker, Francisca, who sent these two hair clips along with him yesterday. I clipped them on top of Evie's pigtails and she loved them! She is making a silly face, but she knows she looks cute:

Everybody who came into her room commented on how cute she looked with her hair clips. She was in a great mood today and ate like a champ! She ate three sausage links for Francis at breakfast (plus her Pediasure), and a chicken nugget and Cheetos for me at lunch. Then I gave her a bath, washed her hair, (and changed her sheets myself - in every hospital stay, I learn something that will help me when I become a nurse).

I can't wait to see what the doctors say when I arrive tomorrow morning. I am going to be really optimistic and bring an outfit for her to come home in!

Morton Arboretum, Part 1

OOOPS - I wasn't planning to post this one today but I must have forgotten that I scheduled it. It was from about three weeks ago. Enjoy!



I took the kids to the Arboretum last Tuesday, before the heat wave settled in. This place is so great because there are so many different things to play with/in/on. I got pictures of Evie and Gavin plaingt with stuff they ignored on our first visit, like this little cabin:

Evie chilled in the stroller...

...while Gavin hugged this silver sphere:

This water pump was the big hit of the day, again an item that the kids ignored last week! Gavin was entertained for about half an hour, loved getting soaked, and didn't want to share with other kids.

Over by the slides on his soaked clothes. Doesn't he look so grown up?

Evie Update - Day 9

Here is Evie after her bath and shampoo, which I did completely by myself for the first time:



Today Evie's dobutamine was stopped completely, so she is only on one IV medication. It is called Lasix, and it is one of the diuretics that she is on at home (oral version of course). The doctors will switch that over to an oral dose soon, and then we wait and see if her electrolyes and enzymes stay "balanced." If so, she should be able to come home soon. We keep trying to get the doctors to tell us specific dates, but they are vague about it. We understand the speeches that "every kid is different", and "we have to make sure she doesn't get worse again," but we are so anxious for her to come home!

Evie's appetite is getting better. Last night she ate a chicken nugget for Uncle David. Today she ate 1.5 chicken nuggets (and a few Cheetos) for me at lunch, then two more for Uncle David later on. The staff nutritionist is thrilled!

Also, Gavin has continued to speak new words every day, and one of them is "home." Today he used it in a sentence: "Mama home, "and "Dada home!" (We had been talking about who was home and who was at the hospital with Evie, and who was at the house with Gavin.)

Evie Update - Day 8

Again, today was a "more of the same" kind of day. Evie's dobutamine is decreasing and her enalapril has been restarted (both medications help her heart - she can go home on enalapril but not on dobutamine). She slept well last night and was relaxing when I got there:



Sometimes she likes to watch the characters on Francis' Nintendo DS:



Fresh and clean after a bath and shampoo:



Uncle David came to visit, and he held Evie's hand while the nurse untaped one of Evie's IV lines to check for soreness. Evie didn't let go!



When I had to leave, she was still holding onto her uncle:

Evie Update - Day 7

Evie slept REALLY well again last night - about eleven hours - and then she took a 2.5 hour nap today while I was there. She is almost back on her regular schedule! She indicated to us that she wanted to rest on her side, which is how she sleeps at home, so we turned her over and she zonked out:



Francis has been catching up on his Nintendo DS games and other things during his long hours in Evie's room:

The doctors decided to start decreasing Evie's dobutamine, which she had been getting through her IV. This is the first step (in a series of small steps) toward getting her home. She can't come home, or even move out of the ICU, if she is still on dobutamine.

Evie's peripheral IV line was moved from her left hand to her right hand, because it was starting to look sore. Of course she hated getting another stick, but the nurse numbed it first and got the needle in quickly. One problem with long hospital stays is that the IV lines sometimes have to be moved for various reasons (they can come out, or get infected, etc).

Here is Evie after she had some yogurt and I fixed her hair:

The hospital had some local celebrities visiting the children today. As luck would have it, both Francis and I were gone when Evie got her special visitor. Nana and Grandpa Cermak were there though, to give a warm hello to none other than Bill Rancic (winner of The Apprentice season 1). Evie loved him! She was full of happy sounds and they looked at her pictures of Gavin. Too bad we missed it, so no photos.

I have to add a note about Gavin. He and Evie both had about 5 words in their speech repertoire as of this spring. But since early June, he has been saying about 4 new words per week. And since Thursday, he has said four new words PER DAY! Everyone told us that one day there would be a "language explosion," and here it is during the week he has an ear infection and Evie is hospitalized.

Evie Update - Day 6

Today was a lot like yesterday. Evie slept well again last night. There were no changes to her medications, but the nephrologist wanted her to have a Foley catheter again. Evie does not like having it put in (who would?). This time it was a little more difficult than it was last Thursday, and when the nurse was done, Evie and I both were exhausted and we both took a nap.

After we woke up, it was time to give Evie her bath. I did most of it myself - I just needed the nurse's help when it was time to rinse her hair. Here she is waiting for the rinse:



Above, you can see that her legs are still swollen, but not nearly as shiny as they were last week. Below, she is trying to "not look at me" (a game she plays).




All clean - fresh pigtails, gown, and sheets. I fed her sweet potatoes and she munched on cheddar goldfish:




When I got back home, Gavin and I played with pots and pans. Gavin was planning to cook something for Evie that is high in protein and low in sodium. What a sweet brother!



Gavin still has a slight cough, but I would say he is almost back to normal. We tell him that Evie is in the hospital because she didn't feel good, and she wants to come home and play with him. I don't know how much he understands, but he knows she is not here and he misses her. It is really hard to have them separated - it just isn't normal - they've been together every day of their little lives!

Gavin has been really good for all of his babysitters: Nana & Grandpa Cermak, Grandpa and Grandma Cordes, and our dear friend Laura. We are grateful from the bottom of our hearts to have helpers to take care of Gavin while we are running back and forth from seeing Evie!

Evie Update - Day 5

Today was a "more of the same" kind of day. The doctors are still adjusting Evie's medications. Today she was put on another diuretic because she didn't pee enough yesterday. As long as they are still adjusting meds, it will be a few days before she comes home. They want to make certain that they get it right.

Here are some pictures from last night with Nana and Grandpa Cermak:

Here is Evie pretending to be surprised and suddenly "waking up" from "taking a rest":

Francis a regular at our local Starbucks on Rt. 59 - he is on a first-name basis with most of the staff, and when one of the baristas, Martin, heard about Evie, he gave Evie two gift bags full of toys and books. Here is Evie with her new presents; thank you Martin!

Last night, Evie finally had a good night's rest and slept eight hours:



She took another nap this morning and was in a great mood:

The nurse and I washed her hair and changed her gown....I couldn't resist playing with her pigtails!

Uncle David came over again today, and Evie was thrilled to see him:

Evie and Uncle David check the iPhone to see if we are going to get any more rain:

Playing peek-a-boo with Evie's foot:

Evie cracks up as Uncle David acts silly:

Uncle Brad sent a video message to Evie and she was very happy to hear from him:

We'll see what tomorrow brings!

Evie Update - Day 4

Just look at Evie's cute little face - so much less puffy! The doctors continued to adjust her medications last night and today, and it seems like they finally got the right combination. Her arms and legs are still swollen, but not as badly as yesterday.

Her albumin level is back to normal so they are no longer giving her that. She is currently getting Dobutamine and Lasix through IV, and her aldactone, aspirin, and Viagra orally. (Yes, Evie is on Viagra and has been since her third surgery in February 2009. She needs it for her pulmonary hypertension, which is what it was originally used for.)

She was a little low on some of the electrolytes, so she got those through IV as well. As far as having any other tests during this hospitalization, it will be up in the air until her fluids are totally under control. So she may still have an upper GI, and maybe have an angiogram, but the doctors really don't even want to think that far ahead yet. I can't say I disagree with that - I have learned to live one day at a time since Evie entered our lives!

Evie Update - Day 3

Today we did not get all our questions answered. I am still waiting to hear what was said about Evie during the cardiac conference last night. We still don't know if it will be possible to schedule her angiogram or upper GI test during this visit.

The doctors have adjusted Evie's medications. She ended up getting a PICC line inserted after all, to better accommodate the new meds (dobutamine and fenoldopam). These are actually blood pressure medications, but given in the low doses that Evie receives, they help with kidney function. Also, the nurses can draw blood from the PICC line without sticking her, so they can get frequent lab reports on her electrolytes and such.

She had to be sedated for the PICC line insertion and she was pretty grumpy as she woke back up. She was only interested in snacking on her goldfish, but she did drink a lot of water. She especially liked drinking out of my cup and straw - just a plain styrofoam hospital cup - so I asked the nurse to bring one for Evie. She also fed herself today, something she didn't do yesterday.



Nana Cermak was there to keep Evie company:




Evie had her fist bath since Sunday! In the hospital, kids get bathed right in their beds (if they can't stand up in the shower). Here she is wrapped up in her towels, and not particularly happy about it either:



I held Evie as the nurse changed her bedding after the bath. Notice how swollen Evie's legs still are, and how shiny her skin is. The nurse explained that this is because her skin is stretched so much from the swelling. (Our nurse today, Marcy, was awesome! We have met so many nurses, and every now and then we meet one who is just the best, and we wish she could care for Evie every day!)



Of course, I had to re-do Evie's pigtails:

Nana stayed with Evie after I left to come home to Gavin (who is doing much better after four doses of antibiotics). Then Uncle David joined Nana in entertaining Evie. He reported the Evie burped and roared during the Abby Cadabby dinosaur video, and laughed as he recounted the story of a playdate last week that didn't work out.

Tomorrow we hope to get some more answers instead of more questions!

Evie Update - Day 2

Evie is still puffy today, and now I understand why. There is a protein called albumin which is responsible for keeping fluids in the bloodstream. Evie's albumin level is very low, and as a result, much of the IV fluids she has received have "leaked" out into the tissues of her body. That is why her arms and legs are so swollen yet she is still dehydrated.

She is receiving albumin now, and is getting one diuretic through her peripheral IV line. She will not need to have a central line inserted, as we thought yesterday. The attending cardiologist (who knows her well by now) is in favor of taking a "minimally invasive" route with her.

We spoke with the nephrologist again today, and he wants to come up with a combination of medications that will rid Evie's heart and lungs of excess fluid but will not result in a chemical imbalance like she has now. He also in not concerned with the trace amounts of blood in her urine - he said that right now, that is "the least of our problems."


Uncle David is with Evie as I type this. Just look at her face and you can see how glad she was to see him!




He offered her a choice of two of his favorite childhood stories:



She chose The Little Red Caboose and he read it to her:



After storytime, we watched one of Evie's DVD's called "Elmo Goes to the Doctor." Not only does Evie love it and can totally relate to it, but I explained to her that Gavin had to go to the doctor as well.

Overnight, Gavin's cold turned into a cough and fever. Whenever this progression of symptoms happens, I know there is an infection. So first thing this morning, we went to the pediatrician, and sure enough, Gavin has an ear infection. We picked up his antibiotic and got home right when Grandma and Grandpa arrived at our house. I gave Gavin his first dose and headed out the door to be with Evie. He is still asleep as I type this - it's going on 3 1/2 hours now, and boy did he need a decent nap!

The cardiac team has a weekly meeting on Wednesday nights, and Evie's cardiologist is planning to attend and discuss her case, so I hope to hear more of a concrete plan at the doctors' rounds tomorrow morning.

Evie Update - Day 1

Evie has completed her first full day in the hospital. She is on IV fluids and they are helping to hydrate her and get her electrolytes straightened out. She is still puffy and doesn't want to eat or drink much. Here is how she looked yesterday right before she left for the hospital, poor thing:



Evie didn't sleep well last night. The nurses had to keep sticking her to draw blood, since the IV she has is a peripheral line in her hand (they cannot draw blood from it; they need a deeper vein). Tomorrow she will get a deeper (central) IV line in her arm.

She had an echocardiogram today and she wasn't too happy about it. Luckily I was able to distract her with some of her favorite Elmo DVDs. She calmed down and even fell asleep toward the end. I almost fell asleep too (the lights are off, the machines are humming, we had full tummies) and I rested my head on the bar of her crib, and she suddenly let out a roar. Yes, our Evie roared. We were watching the Abby Cadabby Dinosaur video, of course, and when those characters ask you roar like a dinosaur, Evie and Gavin do!

I was glad to see her engaged in a "normal" activity! She did fall asleep soon afterward, only to be woken up about 30 minutes later to get a Foley catheter inserted. I don't know why they didn't put one in Monday night.

Here are two more pictures from Monday night - Evie in the ER eating crackers:



In her room in ICU with Nana and Grandpa Cermak:




This was from today:



Of course, I had to re-do her pigtails:

Today I talked to the attending cardiologist and ICU physician and also spoke briefly with the nephrologist. (I got to listen in when they did their round of Evie's room - I thought I'd get kicked out for HIPPA reasons but no! So I thought that was cool.) Their main concern today was getting accurate lab results and deciding what to put in her IV line. Her pulse-ox was in her normal range all day. Hopefully there will be a more concrete plan tomorrow. I also will speak at length with the nephrologist.

One more thing: yesterday Gavin came down with a cold. Of all the days in the year! He is more tired and out-of-sorts and just wants me. Grandpa and Grandma Cordes did a great job of entertaining him today but by mid-afternoon, he was ready for me to get home.