The Newest Plans

Plan 1: Elaina's Plan
On Tuesday, Elaina had an echo done. There was a little concern, because they saw something in her Inferior Vena Cava (IVC). At first, they thought it was a clot. They assured me that they were already giving her the treatment for this, her Lovinox shots, and that they wouldn't really know for sure if it was a clot until the Cardiology team was able to take a better look at the echo. They wanted to compare it to not only her past echo's, but her cath lab results. They wanted to know if it was something new or if it had already been there for awhile. I decided not to TOTALLY FREAK OUT!!! and to wait for the final say. Well, today Cardiology came and talked to me. They said that it's not so much a clot as it is a strand of something waving in the blood flow of the IVC. (Scary note, the IVC connects to the right atrium of the heart. I really don't want anything going to her right atrium....) The general consensus is that it's probably from the broviac, and that it's what is causing her fevers. So, as soon as her next fever spikes, they are going to start her on Ancef, a different IV antibiotic than she's ever been on before. They are going to keep her on this antibiotic for 5 days and then switch her to amoxicillin for an additional 7 days and see what happens. The hope is that her fevers will disappear, and she will be able to "prove herself" so that she can be transferred to South Davis. Of course, knowing Elaina, nothing will be that simple. :) As it is now, we will be in the PICU for at least 2 more weeks. Oh well, going home is overrated anyway.....

Plan 2: Hollie's Plan
So, since Elaina is just going to be hanging out on antibiotics this weekend (and is otherwise as stable as she gets - give or take a fever!), I have made a decision. It was a VERY HARD decision for me to make. But, I've decided that Ben needs some uninterrupted Mommy time. I am going to take him on a small weekend trip to my family's cabin at Bear Lake. Here is a picture taken from the deck of the cabin, looking towards the lake:



Bear Lake is truly one of my favorite places on earth. Ben loves it just as much as I do, and I honestly can't think of a better place for a weekend of rest and relaxation! My siblings (and their families) will be there as well, and it is going to be fantastic fun! There is a public beach a very short drive down the hill (mountain) and the water is absolutely amazing! It is so clean and blue, you can actually be shoulder deep in the water and look down and see your feet. Bear Lake is famous for it's raspberry crop and it's a tradition to get a fresh raspberry shake on every visit. I discovered chocolate covered fresh raspberries last summer when I was pregnant, and I'm going to have to get some of those too! They dip them in chocolate and then put them in the freezer, and when you bite into it the fresh raspberry explodes into juice in your mouth. YUM!!! After 102 days in the hospital (79 in the PICU) I think 4 days away is justifiable. There is a part of me that feels guilty leaving Elaina in the hospital all alone, but Ben needs to have some fun with Mom and that's super important too.
Here's the catch. Since our cabin is an official "getaway", there is no internet access. SO, I will not be posting until Monday or Tuesday. Please don't get worried. If something happens with Elaina, I will have my Mom post (sorry you can't be with us at the cabin Mom!). Otherwise, I'll post tons of pictures of us having fun at the lake when we get back! Oh, if you're local and are going to be at Primary Children's please go give some loves to my sweet heart! Hold her and rock her and tell her that Mommy misses her, if you have the time.......
Thanks so much for all the love and support!
I don't know how I'd survive this without it!
Hugs,
Hollie, Ben and Elaina

Another Day Down

And another fever, or rather several fevers. Not as high this time, just 102 or so... We still have no answers. They are running every test that they can think of just to say that they looked. Poor baby is once again a human pin cushion.

If I let them see me smile, they will poke me with a needle....

They are beginning to think that these fevers are cyclical and are just Elaina's "new normal'. Here's the glitch. Dr Murphy from South Davis came and evaluated Elaina on Monday and said that she thought that transferring Elaina was possible, but not until her condition was "more predictable". So now the plan is to take blood samples every day for a week, trend her temperature hourly for that week and when nothing cultures out and her temperature is all over the place we'll just call it her "normal" behavior and then attempt to convince the doctor at South Davis that she is stable. So, she's not stable enough to go to the floor, she's not stable enough to go to South Davis (and they do hospice!), and I still have the option of taking her home. I think that is just crazy at this point. If she's not stable in a hospital environment, then how could she possibly be stable enough to go home with just Mom!?!? That's just setting me up for failure, so I'm going to hold out for South Davis.

(Thanks Kathy for the cute sheep! She adores it!)

Nothing much I can do but wait and watch. I've been moved into the back of the PICU (bed 28 for anyone that is local and wants to come say hi!) where it's quieter and I can sleep in the room and have my own bathroom (no shower). It's further away from all my heart baby friends, but I guess I'll survive.

Ben started Kindergarten yesterday. He's so darn cute!!!! He absolutely loves it. He woke up early this morning and was super worried that he was late for afternoon kindergarten. He gets to pack a snack for recess and has already made friends at the bus stop. He also informed me that his loose tooth is ready to come out. It's NOT, but he is so ready to grow up! So here are a few pictures from his first day:

Standing in front of the school

Ready to go inside!

Making new friends in the playground.

Showing off their wiggly teeth! :)

Sitting in his spot, ready to learn!!!

We're Okay!

SO SORRY FOR NOT POSTING!!!
I've had such a crazy few days.
First, Elaina is still about the same. She's having fevers, although not as high as she had the other day, but still fevers. They have sent more blood for cultures, even though we never get any answers this way. They've also sent more poo to see if there is something going on in her bowels. Her poor little bummy is so red, her poo is just SOOO watery and there is blood tinged mucus as well. It could be a virus, but we won't know for a day or so. Otherwise she's sweet as can be, and still continuing to work hard.
I took an opportunity on Friday to take a tour of the South Davis Transitional Care facility. It's a lot different than what I'm used to at Primary Children's, but I feel that it would be in Elaina's best interest to be transferred there. She's just having such a hard time proving any stability in the PICU, and because it's the ICU, there are certain things that they have to do in her care. Today the doctor from South Davis is going to come and evaluate Elaina to see if she would fit in to the level of care offered there. I'm hopeful that she will be able to go, it should only be for a couple of weeks, but they will be able to "fine tune" Elaina's needs for home. They also have the ability to slowly transition home, 12 hour trips home, 2 nights at a time, that kind of thing. This way it won't be so scary for me to be home all alone with her and her 24 hour nursing needs. I will know more this afternoon and will post tomorrow.
Now, the reason for not posting for so long. On August 17, my sweet Aunt Judy passed away. She was 83 years young and so full of love and life that it took my whole family off guard. I was standing in my kitchen when my dad called me that night to tell me the news, and I almost fell over the shock was so great. My dad is the baby brother in his family (he has a baby sister), and this is the 1st of his grown siblings to pass away. (His oldest brother Bob was killed in WWII) Anyway, this past weekend was filled with the viewing, funeral and family time together mourning our loss. Her son, daughter and grandchildren gave her a truly beautiful funeral. My Aunt Joanne was here from Las Vegas and also spoke, it was so hard for her to get up and talk about her big sister. They were so close and loved spending time with each other. It was so nice to be able to see cousins from out of state that I rarely get to hug, but I truly wish it had been under different circumstances. It was a beautiful but bittersweet weekend. My parents did a quick trip out for the services, getting here Thursday night and going home on Sunday morning. I could see the sorrow on my fathers face as well as his remaining siblings and it hurt to imagine the feeling of loss that they were forced to experience. I love my Aunt Judy tremendously and I know that there is an empty spot that cannot be filled in our family. She will be greatly missed.
Love,
Hollie

Photos by Now I Lay Me Down To Sleep

I finally got the pictures back from our photo shoot last month! So here are some of my favorites. They're all black and white and I really love them!

Fevers, fevers, fevers....

Fevers are not my friend.
They are not Elaina's friend either.

Today Elaina had her highest fever ever. It was 40.9 Celsius. Round it up and 41 C translates to 105.8 Fahrenheit, so she was just burning up. They gave her an "ice bath" by putting cold wet washcloths all over her body and under her arms. She's also on a cooling blanket. At one point her heart rate was 220 due to the fever, but once she cooled down, her heart rate went down too. The hard thing is that it keeps going back up if she's not constantly cooled and given both Tylenol and Ibuprofen. They drew more blood for cultures and also took a stool sample. I guess her diapers are very liquid with mucus and there was a tiny bit of bloody streak in some of the mucus in one diaper, so they decided to send a culture just to be on the safe side. They also stopped all of her diuretics and increased her fluid intake by quite a bit because she's just so dehydrated from the constant high fevers. Anyway, at this point I really don't know what's going to happen or when we will be going home. I talked with one of the nurse practitioners tonight about the possibility of transitioning to a Pediatric Transitional Acute Care facility and then to home. There are definite pros as well as cons to this possibility. There is just a lot that I have to think about. These fevers are scary and I truly want what is best for Elaina. I have some serious praying and tough decisions to make.
Ben and I had a great day today! We went to his Kindergarten assessment this morning. We asked the teacher about getting into the all day program and she said that we would need to test first. Well, he did such a great job that she told us that it was very unlikely that he'd get into the all day class. She said that the all day class is tailored to kids that don't know their abc's or how to write their names and such. I guess Ben's just too smart for his own good! I took him to lunch and to run errands afterwards and we had a great day together before I came up to the hospital.
Well, thanks for all the love, prayers and words of encouragement. This journey is difficult, but I know it's worth it.
Love,
Hollie, Ben and Elaina

In a Holding Pattern....

So much to tell....
First, Elaina is still having her fevers. She's between 102 - 104 on a consistent basis. SO, it was decided today that her broviac is the most likely source of these fevers. Since it's the only "foreign" object in her body (not counting the feeding tube!), the general consensus today was that her body was fighting it and it needed to go. On a quick side note, little stinker bug decided today that she was going to make life more difficult for everyone and she pulled her NJ tube out. They were able to get it back in, but she kept trying for the rest of the day to get it back out. I'm gonna have to keep my eyes on her and socks on her hands!! Anyway, back to the broviac..... We ended up taking a trip downstairs to fluoroscopy where the offending line was removed. They let me stay in, behind the glass due to the radiation, and I was able to watch the 'real time x-ray' as they removed the line. Elaina got some sedation, and they inserted a small guide wire into the line. There was a small balloon holding the line in place, so they had to make a small incision to get it out. It took less than half an hour. On the upside, we were able to get a peripheral IV into her so that we can continue giving her the good antibiotics. Oh! and get this! They got the IV into her LEFT FOOT!!! ON THE FIRST POKE!!!! This is the foot that was so purple, attached to the leg that was so dusky, that they were talking to me about amputation! I forgot to tell the IV team not to touch that leg, and then they poked, and I thought, "oh no, they're not going to get an IV there...." but I didn't want to say anything, just in case it worked (I was praying that she didn't have to have ump-teen-million pokes for a single IV), because I knew that if I said something they would pull it out and poke her somewhere else before they even tried to flush the silly thing. Anyway, I was VERY pleased that we were able to get IV access, on the first try no less! So now the plan is to watch her and see how she does. If her fevers go down (hopefully they go away) we will be home by dinner time on Tuesday. If she still has fevers, we will continue to watch her and give her the IV antibiotics for another day or so, but we are definitely the closest we've ever been to getting home. I even went to the grocery store tonight and stocked my fridge with good things to eat and easy things for Ben to grab for himself when he's hungry. We're getting so close.....Keep praying us home!!!
Thank you all SO much!!!!

Gotta be kidding!

I will never learn. I must not ever say the word "home". I must not even spell it out.
Today Elaina spiked another fever!!! This is the highest one in awhile, 40.1 (aka 104). Nothing is helping bring it down. We've been giving her Tylenol, setting her on ice packs, you name it, and the fever stays up. It's gone as low as 102, but not down to normal for any extended period of time. Poor baby. When her temperature is up, so is her heart rate and she is just plain miserable. So, here's the worry: we think her broviac line might be the source of the fever. If it's infected, I just don't know what we'll do. The strongest antibiotics are IV, and if we pull the line, there is no guarantee that we can get IV access. She's such a hard poke....
Anyway, I'm once again discouraged as home feels like it's slowly slipping out of my grasp....

It's all good...

I left the hospital on Thursday, without Elaina, but it had been 2 weeks since I'd been home and seen my Ben. He's finally over his cold and I was in desperate need of hugs and kisses! I got home at about 4:00 and Ben and I snuggled up on my bed to watch a movie, and both of us fell asleep. I woke up at about 6:30 (I needed that nap!) and made him his favorite dinner, spaghetti. He woke me up bright and early this morning, but I went back to sleep for a little bit. We had a good day, it was so much fun to spend the day with him. He starts kindergarten on the 25th! I'm supposed to take him to his kindergarten assessment on the 20th. I guess his school is trying out a new program, all day kindergarten. I really hope that he gets chosen for the program. With as much time as Elaina takes, it would be nice for him to be at school all day. I took him school shopping this afternoon, I can't believe how big this kid is getting! He was so cute, he wanted me to buy all kinds of school supplies. I told him that we needed to wait for his teacher to give us a list, but he was having a super hard time not putting everything in sight into the shopping cart. Anyway, he's having a sleepover at his friend Sean's house tonight. He was super excited. It's kind of neat, Sean's mom Heather and I have been friends for about 23 years. Holy cow, I feel old!! I'm so grateful that our boys get along so well. It's super fun, especially for them. Poor Sean has 3 older sisters (who all adore Ben too!) and so he especially loves it when Ben comes to play!
Elaina had a good day today too! I didn't make it up to the hospital until shortly after 7pm. I was able to snuggle her for a little while before it was time for her bath and bedtime chest PT, suction, and medications. I am going to be one busy momma when I get home! The discharge planner talked with me today and everything is set for M-o-n-d-a-y! I, of course, am not going to fully believe it until we are in the car and on our way home, but everything is ready! I'm going to spend Saturday and half the day Sunday at the hospital, then go home Sunday (if I get the warm feeling from the docs...) and plan on coming back up on Monday morning to get out of here! We're getting closer! I really hope that this time it's for real!

Answers?

This day started out with high expectations. I truly thought that I would be able to find out SO many answers. I got some, I'm not sure they were the answers I was looking for. But in a way, they were.
I had my Care Conference at 3:00 this afternoon. This conference was actually planned last week when they were trying to get Elaina moved to the floor and they had been talking to me about hospice, DNR papers, etc. The reason that we waited until today for the conference was that Elaina's cardiologist, Dr Cowley (we see him both in and out-patient) was not available until today. I'm glad that we waited. Dr Cowley tells it like it is, and I really respect that. He told me that he agreed with the decisions I'd make concerning Elaina's DNR and he said that he would continue to advise me on it (for possible revisions) when and if it was necessary. He said that he thought it was worth sending Elaina's records to Stanford, but he said that he didn't think that a heart/lung transplant was something that he would recommend for Elaina. He told me that the waiting list is two years or longer sometimes and that the last he heard, it only extended life by a year and that it was a miserable existence for the lung recipient. He did support my decision to get the information from Stanford and to make an informed decision on my own. He also told me that he thought that there was a chance that Elaina could continue to improve and that if she does, there will be other surgical options available for her down the road. Probably not until she is between 3-5 years old, but options will become available the older she gets. This is all dependent on her lungs improving and her pulmonary arteries growing with her. Of course, no one has a crystal ball and no outcome is ever a guarantee. We just have to take it one day, one week, one month at a time. We also talked about feeding methods. Right now NJ is the best way to go. We cannot risk stomach contents that she could potentially asperate. Eventually we would like her to have a Nissen and G-tube, but that would be 4-6 months down the road. She isn't strong enough right now to go through another surgery, and since she tends to use her stomach muscles to breathe, having them sore from surgery would really decrease her ability to get stronger. In all, the conference was very good and I know that I do have a good grasp of the situation as a whole. Anyway, there is a concern that I will be able to manage all her cares by myself when we get home (shhhhhhhh....we're aiming for m-o-n-d-a-y), so the team was hoping that I would be able to have a couple of family members come and spend a day learning how to do some of her cares so that I can have a helping hand now and then. They've strongly advised me not to take her many places in public. They said that a walk in the park or in open places is okay, just not allowing anyone to touch her or get too close. No church, no stores, and very very cautious at the doctors office.
Once the care conference ended, Elaina was taken in for her scope. It lasted less than 30 minutes and they said that everything looked good. There is some scar tissue on her vocal cords, but that's to be expected with how long she was on the ventilator. Otherwise they didn't find any obvious obstructions. They said that her obstruction is most likely in the soft tissue at the top of her throat (which they can't repair surgically) and she will outgrow it eventually or it could be due to all her secretions. Either way they fully agreed with the use of her c-pap. I really feel like it make a huge difference today. She was on it for 12 hours last night and all day her saturations hovered around 80 on 1 liter of oxygen. It was great! She also didn't have any fevers today and didn't need a whole lot of extra sedations. I'm willing to take as many good days as she's willing to give me. She really wanted to snuggle when she got back from the scope, and I was glad to be able to give her lots and lots of extra hugs and kisses!

Sleep Lab Results

The sleep lab results came back today. Elaina gets her c-pap! In fact, the results have started quite the commotion here! Elaina has severe obstructed sleep apnea. They told me that she had 20+ episodes every hour that they were monitoring her. They also recommended a follow up by the ENT team (ear, nose, throat) as soon as possible. So they came by today and after a thorough examination, it's been decided to take her to the OR for a scope. I'm little confused as to what they are doing, after I got back from break tonight the nurse was calling it a bronchoscopy, and I know that she had one of those a while ago when she was intubated. Anyway, from what I understand, they are going to put a little camera down her throat to see if they can find any obvious obstructions. I'm not quite sure what will happen if they do, but there's got to be a cause behind her apnea, so we'll just wait and see!
I also have a Care Conference scheduled for Wednesday afternoon. I'm having one because I want to be able to talk to not only Elaina's team in the PICU, but her Cardiologist as well to make sure that we're all on the same page. We're also going to discuss the whole Stanford thing. I know that they started the referral last week, but they told me it could take up to a month to hear anything back. Anyway, I want to know what Elaina's cardiologist thinks about the idea as well as what his future plans are for Elaina. I'm preparing myself for the worst case scenario. They haven't given me the most positive outlook so far, so I'm not fooling myself into thinking that it's going to change dramatically just because I asked for a care conference.

So today was hectic busy, but that seems to be the norm here. Elaina still had her fever today. She's got the team pretty confused. They're starting to wonder if the fevers are a sign of heart failure, but she doesn't have any other prominent symptoms that would point to that, so it's just got everyone puzzled.
Well, I am totally completely exhausted. I didn't find out until 11pm that I didn't get a sleep room, I was on the stand-in list (in case one of the other families went to a hotel or something) but I didn't get lucky this time. Oh well, I'll sleep on the pull out in Elaina's room. It's not the most comfortable thing in the world, but it sure beats sleeping in my car!

Please help me pray for my friends the Bailey's. Their daughter Brooklyn isn't doing well. She's just one month old and the doctors don't think that there is anything else that can be done for sweet Brooklyn. She's got so many clots caused by procedures that they don't know how much longer she'll be able to hold out. Her family has been given the "talk" and now have to make the hard decision regarding Brooklyn's life. I know that prayer is what has gotten Elaina and I to this point and I have faith that the Bailey's can find comfort and the answers that they seek.
Thanks for all the love and support!!

PICU Day 61 and....

And Miss Elaina decided that she wanted to have a fever. She's been about 102 all day, even with Tylenol. They can't give her Ibuprofen with her Lovinox, so we had to just hang out. I wanted so desperately to hold her, but my body heat with her fever was not a good combination. So we put ice packs under her back and cool rags on her head. I held her hands and gave her lots of loves. Poor baby, the fever made her so uncomfortable. We were able to give her a little extra sedation just for comfort. I decided not to take her on her daily walk, I really didn't want to take any risks since she had a fever. I'm hoping that it is just related to fluid balance. This morning the cardiologist thought that she sounded a little 'wet'. They thought that her heart sounded more like a gallop and less like her normal swooshing. We decreased her free water and took down the rate on her feeds, so hopefully that will help her out. She did a 2 hour car seat trial, and passed with flying colors, so at least that's out of the way. Everyone passing by was so excited to see her sitting in her car seat, even though it was in her crib.
We didn't hear back about the sleep study yet. We're hoping that we'll know by Tuesday. The nurse practitioner told me that if the report isn't in the computer by mid-morning that she will call down and see what's holding it up. Fingers crossed. She's off the c-pap for now, we don't want her getting used to it if she doesn't get to have it at home.
Anyway, no one will give me a definate answer about going home. So, I'll stay and try my hardest to be patient. I want to go home! I miss my house, my bed and most importantly, I miss my BEN! He's still getting over his cold, so I haven't seen him in over a week and I am going through major withdrawls. I miss his hugs, I miss his kisses, I just miss him. It's so hard being away from my sweet boy. I keep hoping that I'll be home soon so that my kids can be back together under one roof.

One final note:

HAPPY BIRTHDAY ELAINA!!! WOOHOO!!!
7 MONTHS OLD!
KEEP DOING IT SWEETHEART!
I LOVE YOU!!!!!!

Day 60 in the PICU

So, we've now been in the PICU for 60 days. It seems like forever!

Not too much really going on. Elaina was able to have her sleep study last night. I won't know the results until Monday and then we'll start talking about getting out of here. I really don't see an urgent need for Elaina to be here now. She's getting all her medications by mouth, so no IV at the moment. The broviac is still in, but not being used for anything but labs, and it will come out as soon as we're ready to go out the door. I think it's just red tape that's keeping us here for the most part. We're on floor status, but not on the floor, so we've just been hanging out. Lots of snuggling going on here!! I took Elaina on another wagon ride, but the outside adventures were vetoed by the other doctors, so we've just stayed in the PICU. I'm pretty much doing all her cares and giving all her meds, holding her and just plain doing the Mom thing. I know that it will be much different once we get home, but I'm feeling up to the challenge. I realize my stresses will change, but it will be SO nice to be at my house and sleep in my bed. Not to mention, I am SO tired of cafeteria food!!! A good friend took me to dinner the other night and it felt so good to do something normal. It's not something that I've done in a long time, and I'm sure I won't be going out often once Elaina is home. I loved it!!
I think the hardest part about leaving the hospital will be the friends I've made here. There are so many other heart mom's (and other mom's!) that I feel so close to. It's amazing how having a child with medical problems draws families together. I'm going to miss seeing them, they are all so strong. Daxton, Teagan, Stella, Dylan, Jackson, Gracie, Brooklyn, and many others are here and still fighting their heart battles. Their parents have all given me strength and comfort during Elaina's stay here and I will miss seeing my friends. I will keep them in my prayers and in my heart.
I will know more on Monday, so I will try to post as soon as I have information. Could be we're out the door Tuesday or Wednesday. Of course I truly won't believe it until we're in the car and driving home!!!!!!!

Friday Follies

Elaina had a good day today! She's back down to 1 liter of oxygen and her sats hovered in the high 70's and even 80! The PICU doctors tried to transition us to the floor, but the doctors on the floor were "afraid" of her. They said that she looked too blue and her acceptable sats were too low (we accept sats of 60 or higher...) and that she would continually scare the nurses. Can you imagine being afraid of this??

Or this?

So we decided to take a wagon ride around the PICU today instead.
Elaina even got to sit in front of the window and see the blue sky and clouds.
If she's really good tomorrow, the Nurse Practitioner said that we could take a walk outside to the Angel Garden for some fresh air! I'll take lots of pictures if we get to!

We're once again talking about the "H" word. I'm not going to spell it out because I swear I jinxed it last time. There are just a few more things holding us up and then we can get out the door. Home Health won't pay for the c-pap unless Elaina passes a sleep study. The pulmonologist came and evaluated her today and he said that he thought that the c-pap was helping her, but that in order for her to pass the sleep study he'd need to have her oxygen down to 1/2 liter or less. The doctors agreed to lower the O2 for the study (they want her on 1 liter minimum) so she's scheduled for Saturday night. He also told me that he had seen a lot of kids with Di George that had sleep apnea, and that they all benefited from having c-pap at night. He just transferred to Primary's from Denver. Hmmmm. Any other DiGeorger's out there that use c-pap? Anyway, we've changed her to floor status (in the PICU) and the docs wrote an order in the chart that I (Super-Mom) am in charge. The nurses do their assessments every 4 hours, but I get to give her all her meds, do her chest PT and suctioning, change diapers, and practice putting on her c-pap. Basically, I'm doing in the hospital everything that I'll be doing at home. They want to make sure that I am comfortable and confident in her cares to ease the transition.


She was really tired after her busy day of socializing and wagon riding, so she took a nice little nap. Notice the cute blanket? My sister Tricia and her daughter Kate made this blanket and donated it (along with many others) to Primary Children's. It found it's way to Elaina's bed and when I told the nurses that Elaina's cousin had made this blanket, they told me that we could take it home! Yay!

This is after her bath and with her c-pap on. She really loves to snuggle with her teddy bear. The c-pap puts her right to sleep too. Of course I'm sure it helps that she got her bedtime meds a few minutes before. I hope that she can have a restful night....


Thank you all so much for your encouragement and support. I try so hard to remain positive, but it's hard sometimes when the doctors keep forcing her condition down my throat. I won't know anything from Stanford for a few more weeks, so I'll post when I hear something. I know that through our Savior anything is possible and that He has a plan for Elaina. I am so grateful for her and her life. I know that if I live every day to the fullest and fill it with joy and happiness I will never regret the time I spend with my sweet angel. She remains so precious to me!! Please know that your words of kindness and prayers mean so much to me and help give me the courage to continue on this journey.
Love,
Hollie

Tough Day

**WARNING**
Emotional material, proceed at your own risk.
Pictures at the bottom of the post.

I have had a really rough couple of days. Call it a reality check of the worst kind. Elaina continues to improve, but I've been forced to face the reality of the situation. It has been really difficult to make some of the decisions I've been asked to make, but I feel like I have made the right ones.

I've been told for the last month that there are no surgical options left to repair Elaina's heart. The doctors now think that the central shunt that was put in during her last OHS is not open and giving her adequate blood flow to her pulmonay arteries. This is why she continues to look dusky and her saturations stay in the high 60's to low 70's. To open the shunt would mean a trip to Cath Lab. Unfortunately, the risk outweighs the benefit of this. They only way that they would be able to get good access to the shunt would be to go in through her Glenn. Not only is this highly dangerous, but a clot in her Glenn would be fatal. All of her past cath sites have clotted. There is no way to guarantee the success of this procedure. She would also need to be re-intubated for this procedure, and I just cannot do this to her. Again, the risk outweighs the possible benefits.

Due to Elaina's pulmonary hypertension, and her partially collapsed lung (permanent) she is not a candidate for a heart transplant. Here's where the biggest problem lies. Her pulmonary arteries are small and the doctors are not certain that they will grow with Elaina. They have told me that it is quite possible that as her body outgrows her pulmonary arteries, she will continue to have saturation problems until her heart and body just give out. They do not know if this will be weeks, months or what. They cannot give me any idea of what is going to happen from this point on. BUT, if Elaina's pulmonary arteries do grow, there may be surgical options available for her when she is 2 or 3 years old. There is just no way to predict the outcome. I sure wish I had a crystal ball sometimes...

Yesterday they asked me to think about signing a "Do Not Resuscitate" (DNR) order for Elaina if her heart stops. They believe that CPR would not be successful and that it would be a very traumatic way for Elaina to die. Even if they were able to resuscitate her with the CPR, there would be no way to surgically repair the damage done to her heart by the event and/or the resuscitation efforts. It would just prolong the inevitable. I completely fell apart. I feel like my world is crashing all around me. Needless to say I had a night filled with prayer. I am so scared and only hope that I have made the right decisions today and can continue to make the right decisions for Elaina's future.

So, now we get to the new plan for Elaina as well as a possible new option to explore!

Right now, the plan is to get Elaina strong enough so that she can go home and have time with Mom and Ben. She's back onto regular nasal cannula oxygen (currently 3 liters) as of today. We'd like to get her back down to 1 liter if possible. We still need to get her diuretics and electrolites balanced. We're getting close, but it will still be several days before we get there. We are hoping to be able to transition to the floor before going home. This is just to make sure that Elaina is truly stable and to give her time to gain more strength. Going home is in the future, but the most likely scenario at this point is that we are going to go home on Hospice care. Not exactly what I'd had in mind up until now, but it's probably for the best. Just because we start out with Hospice does not mean that it will continue, if Elaina once again proves everyone wrong, it can be cancelled and we can move forward in a different direction. The benefit is added peace of mind at home and some helping hands for Elaina's many medical needs. The point is that nobody is certain of the outcome and I want to be as prepared as possible.

Now, there is still an avenue of hope that I am going to pursue. Just because Elaina doesn't qualify for a heart transplant doesn't mean that we're out of the running completely. One of Elaina's doctors thinks that she may possibly be a candidate for a heart and lung transplant. Here's the twist, they do not perform this procedure at Primary Children's in Salt Lake. The nearest facility that performs this procedure is Lucile Packard's Children's Hospital at Stanford. Dr. Zebrak also works at Stanford and she said that if we get the ok from Elaina's cardiologist, she will personally contact the team at Stanford and see if Elaina is a candidate for this procedure. She said that she would also be able to arrange transport for Elaina if I were to decide on this course of action. At this point I want to at least know what our options are, I don't know if Elaina is even eligible for this, but I want to be able to make an educated decision. When it's all said and done, I want to look back and know that I didn't leave any stones unturned and that I did what was in Elaina's best interest.

I also know that God works miracles. I may never even need to go to these extremes. Ultimately this is all in God's hands, and it is His plan that takes precedence. I truly put my trust in Him and hope that whatever the outcome is, it will be a miracle in our lives.

That said, here's some pictures. She's such a sweetie!

No NJ!! She sneezed it out! I had to take advantage of the cute cheek moment!


Thanks Brynn for bringing up the cute flower backdrop!

You've got to just laugh at the ridiculous c-pap setup that she's wearing! This is what they plan on sending her home with!!! Funny thing is, she tolerates it just fine while she's sleeping. Go figure!!

Had a good day

Elaina had a pretty good day today. She didn't really have that many changes. We're still tweaking her diuretics and electrolites and she was able to come down to 7 liters on the high flow. She was awake for a good part of the day and seemed very interactive. I even think I caught a couple of coy little smiles. No big grins, but at least she seemed pretty happy. Her eyes are SO expressive. Sometimes I really feel like she is trying to tell me things. I'm going to have to film her tomorrow, she's so sweet. She loves having all the attention, but she didn't cry today unless it was for her binky. Thank goodness for the binky! We've decided to try putting her on c-pap tonight to see if maybe having the benefit of positive pressure in her lungs for a period of time will help her overall. This is actually something that I could do for her at home if we find that it helps. She can be on c-pap at night and then her regular oxygen during the day. If I understand correctly, the positive pressure given by the c-pap will help open up her airways and she won't have to work as hard. I guess when she's asleep her breaths are more shallow and she breathes faster, so we're trying this in an attempt to give her a little extra rest at night because the c-pap will do part of the work for her. We're just doing it as an experiment tonight and we'll see if it helps her out. If it doesn't seem to help her, she'll go back to the high flow and we'll keep on truckin!
I stayed at the hospital again tonight. Ben has a cold, and since I really can't afford to get sick right now (for a number of reasons...), I'm staying away and leaving him in my Aunt Kathyrn's capable hands. Poor kiddo, he hates to be sick....

Life in the PICU....

Another day in the PICU, I seriously feel like I live here. I counted, and since this admission (a mere 80 days ago!) we've been in the PICU for 55 days!!! I need to sit down and really figure out how many days we've been home verses the total number of days in the hospital. I'm sure it would be enlightening....

Elaina started out by having a rough night. She had another de-satting episode, and this time it was decided to put her back onto the c-pap. Needless to say, I was very discouraged when I got in the room this morning. Fortunately, she didn't need the c-pap for long, and by mid-afternoon she was back onto the high-flow. She's spent the majority of her day just sleeping (and being snuggled by Mommy).

Do you see the cute blanket???? BUGS! They're lady bugs, but they could be "turtle" bugs if you use your imagination. Here's a closeup of the fabric. I really must look for it and make my own for her to have..... (or if someone else out there can find it, let me know and I'll pay for it!)


Oh-my-goodness! Too cute!!! :)

Okay, that was a little detour... After talking to the medical team today it seems that we were right in thinking that the diuretics were the culprit this week. It seems that this is what happened:
Too much diuretics, they dried her out and her heart rate skyrocketed.
All diretics were stopped, her fluids were increased and her lungs started to get wet so her saturations went down.
Now, we're trying to find the "fine line" of diuretics for her. She obviously needs some, but not the amount we were giving up through last week. It is going to be a balancing act and it will take some time to get it all figured out. We also need to get her electrolytes stabilized. Her potassium has been too low and her sodium is super high (this contributed to the high heart rate). She's still having fevers, but so far nothing has cultured. So funny, fever is what got us admitted on May 16th and in the 80 days we've been here we haven't been able to really find an answer to that. We may never know, and she may go home with unanswered fevers. No word yet on when they might send us home now, we'll just have to wait and see how Elaina does.

I was able to attend church at the hospital this morning, and it really lifted my spirits. It is such a wonderful blessing to be able to take time to worship the Savior. I am so grateful for all the blessings that have been bestowed on me and my family. Just one month ago I was told that my daughter would not survive and I was asked to make a choice that could have ended her life. I turned everything over to the Lord and have been blessed with a month of being able to hold her, kiss her and love her. I am so grateful for all that I have, and for the tender mercies that have been shown to us.

Small Setback

Elaina had a particularly rough night last night. We've decided that the cause of her fevers and elevated heart rate was too much diuretic. She's just too dry. They (they = medical team) took her off of her diruetics on Thursday and increased her fluids. Last night (at about 3:30 am) her sats dropped very low (48-58 range -not good) and she turned a worrisome shade of blue. They listened to her lungs and decided that she sounded "junky" and so the respiratory therapist suctioned her out. Instead of clear/white mucus, she was bloody, they just kept getting more and more blood along with the mucus. The doc called for a chest x-ray and her lungs look wet. A very different picture than the last chest film. They don't think that there's any blood in her lungs, just draining from her sinus. They think the reason for the blood is the need for suction combined with how dry her mucus membranes are and the blood thinners that she's on. Anyway, after all was said and done, she's back on the high flow. She's currently on a 6 liter flow, with the o2 set at 90%, just to keep her sats at 70%..... Not good. The good thing about high flow is that it's super humidified, hopefully it will help the mucus membranes in her nose to heal a little better. Her blood gases aren't looking that great either. Her heart rate went back down to her base line last night though, so that's a positive. Anyway, she's back on her Bumex to see if we can balance her fluid out a little bit, and we're leaving her on the antibiotics just to be on the safe side for now.

So it continues, I sit, wait and wonder what the future holds. I am super scared at this point. The doctors try to be positive, but it's always laced with "we just hope you can get her home to make some memories". What's that supposed to mean? Grrrrr!!!!! I get a different answer depending on who I talk to. I know that means that they really don't have any answers. I know that she truly is in the Lord's very capable and comforting hands. BUT, I am selfish and I want my daughter to come home and be strong and to stay here on this earth!

Once again, I am asking for help with prayer and fasting. I will be having a special fast and prayer day tomorrow (Sunday) and would ask all those willing to participate to join me. I'm praying for Elaina to come home, but I want her to be stable and to continue improving so that we can do more than just make some memories. I want to make a lifetime. I have faith that miracles DO happen - we've been the recipients of many, and I know that our Heavenly Father hears and answers prayers. Thank you all for your continued love, prayers and support.
Love,
Hollie, Ben and Elaina