Thursday, July 31, 2008

Staying Put

The doctor and nurse practitioner just came and talked to me.
It could be one of three things, or possibly a combination of them. I’ll start with the worst case scenario and end with the simple explanation.

Possibily #1: She is developing sepsis. This is a highly dangerous infection in the blood stream. She may not be strong enough to fight it. This has been one of my greatest fears for the last couple of weeks.

Last night the main lumen on her broviac broke. They were able to replace it immediately, but are worried that it could have introduced something into the line. So far we have nothing confirming this. All of her blood cultures are still coming back negative. But, she has had a fever for two days straight and her heart rate has been as high as 215 (it stayed there for a couple of hours). This poses another problem. Now that she has single ventricle anatomy (left ventricle function only), having her heart rate that high for a long period of time is going to wear her out. She’s still VERY fragile, and might not be strong enough to continue at this rate.

They started her on an IV antibiotic tonight just in case. They would rather prevent something than let it get out of hand.

Possibility #2: She is having withdrawl symptoms from the weaning of her pain/sedation medications. This could cause a fever, her super poopy diapers, and her elevated heart rate. We tried giving her extra morphine yesterday, but it didn’t really seem to help her for longer than half an hour, and it didn’t really bring down her heart rate. They just gave her morphine tonight and so far her heart rate has dropped from 205 to 178. Still high, but at least it’s a little bit better. Part of the increased heart rate is the fever, so hopefully if the fever goes away, her heart rate should get back to her baseline (in the 150’s).

Possibility #3: She’s dried out from too much diuretics. They gave her some extra fluids earlier today and skipped her afternoon Bumex. They also got rid of her Diruel yesterday. They aren’t sure if this is contributing to the fever, but it could be contributing to the heart rate.

Good news is that she’s not as irritable as she was yesterday and earlier this morning. Bad news is that going home has been put on hold indefinately.

Once again, we are doing things in Elaina time. Turtle steps.....

(I think she’s just a diva and wants all the attention from the sweet nurses and doctors!)

It's a No Go...

I was afraid I was going to jinx it! Yesterday morning Elaina spiked a high fever and her heart rate went up into the 200's! Nothing that we did seemed to help. Poor baby whimpered and cried most of the day. We tried giving her a cool bath, we put cold packs under her, I rocked her incessantly...nothing seemed to make her more comfortable. She's continued to have a rough night, and her heart rate is still quite elevated this morning. So, we're not sure what is going on, or when we'll be going home. Monday is being tossed around, but that's only if we get her fever and heart rate figured out.
I will post more later once we know more about what's going on....

Monday, July 28, 2008

The "D" word

Discharge! What???? Yup, that was the topic of discussion today. We can plainly see the light at the end of the tunnel! I spent most of the day today talking to doctors, nurses, and yes, the discharge planner! It seems that we will be going home on THURSDAY!!! I am experiencing such a huge range of emotions....excitement, fear, joy, terror....the whole spectrum of emotion all at once! The butterflies in my stomach don't know whether to make me smile or make me throw up. Ha! I'm currently at home, frantically trying to get all the dust bunnies vacuumed up (after not being home for 6 weeks I sure grew a lot of dust and cobwebs!) and get all of Elaina's supplies organized. I have NJ feeding supplies, suction supplies, along with all the normal baby supplies that I'll need. Not to mention her oxygen and oxymeter. We should be having a nurse come in to do checks 4 times a week, basically every other day. They are going to teach me how to do her chest PT and suction, and I've already been practicing giving her Lovinox shots (in her tummy - ouch!) They are planning on keeping her broviac in for the time being. Just in case.....
Anyway, I just had to post. I just hope I didn't jinx it..... :)

(By the way, Isaac's viewing and funeral will be on Friday. I am so so so sad that I won't be able to go. I just can't expose Elaina to all the people.... My heart aches, prayers will continue to be said, and I will be there in spirit.)

Sunday, July 27, 2008

Isaac Brimley

One of the most valiant heart hero's I've ever been privledged to meet passed away on Saturday night. Isaac was born 10 days before Elaina (New Year's Day 2008) with HLHS. His struggle was a long, and difficult one. He was only able to spend 9 days at home with his family, the rest of his life was spent in the hospital. Most of the time was in the PICU. His parents have become close friends to me and my heart is just broken for them right now. Isaac had been working on going home, in fact he was extubated the same day as Elaina. From what I understand from Jessica (his Mom) he aspirated after some medication was given through his NJ this afternoon, and they weren't able to clear his lungs. His family has a blog as well as a Care Page. Please keep this family in your prayers. They are amazing. Isaac, I will never forget you!


Friday, July 25, 2008

Good Day!

We had a good day today! The Social Worker in the PICU arranged for a group called "Now I Lay Me Down to Sleep" to come to Elaina's bed space and take professional photos of her. I got the call at 9pm yesterday, so I went home to prepare. I dug out her prettiest pink frilly dress and took Ben in his Sunday best and we had pictures taken. I really hope that they turn out nice. The photographer took lots of different poses and said that she would send them to me in a couple of weeks. She even said that she would be willing to come out to my house when we get home and she'll take some pictures of us there! Hopefully some of the pictures will be digital so that I can post them on this blog!
Elaina was pretty sleepy while we were there today, but she seemed to enjoy being held by me and especially by her big brother. My Aunt Kathryn came with us (to help with Ben's enthusiasm) and she was able to hold Elaina too. It was very nice. She's still looking a little blue, but her numbers are acceptable. She's down to 3 liters on the high flow, and her sats are between 68-73. It would be nice if they would stay higher, but I'll take 68 over 50 any day of the week! She's been throwing up for the past couple of days too. Not food, just mucus and stomach acid. They're not quite sure why, but are giving her meds to her very slowly through the NJ and trying not to move her too quickly. Her chest x-ray is looking a little bit better, even though the top portion of her right lung is still collapsed. They don't think that she'll ever heal in that area, there just isn't enough blood flow to that part of her lung. Also, it looks like the hole in her groin is beginning to heal on it's own. Plastic Surgery said that they didn't think it would heal without the broviac being pulled, but the nurse today said that it looked a little more shallow and she couldn't see the broviac when she changed the dressing. I truly hope that it is healing and that we'll be able to keep the broviac until it's time to go home.
Speaking of home, I still don't know exactly when, BUT it could possibly be as early as the end of next week! They told me that she will still be extremely fragile, and they can't make any guarantees, but they also can't keep her at the hospital forever. Right now it's just one minute, one hour and one day at a time, but there is a light at the end of this tunnel!

Wednesday, July 23, 2008

Plugging Along

Elaina is continuing her turtle steps. Very slow, but generally in the right direction. The main focus right now is getting her off the high flow oxygen. She started out last Saturday at an 8 liter flow. This morning they got her down to 5 liters, with the FIO2 set at 35%. Her sats aren't that great at the moment (in the 50's and 60's), but they are watching her and hoping that she will tolerate the wean. Her nurse said that her color looks about the same. I guess they changed her bedding and put her on a purple blanket, so it's not helping her skin tone! Silly!!

The plastic surgeon came and looked at the hole in her groin. His recommendation was to pull the broviac and the hole would heal fairly quickly on its own. Grrr. We're literally between a rock and a hard place at this point. If we leave the broviac, we increase the risk of infection. If she were to get septic, it could cost Elaina her life at this point. She's just not strong enough to fight off a serious infection. But, pulling the broviac means that we have no more IV access or ability to draw blood work. She would have to be poked every time they want to check a blood gas or check lab work. She is a VERY hard stick and this is not a pleasant thought. BUT, sepsis is nowhere I want to go, so I think we'll be pulling the broviac in the next couple of days. She has an IV antibiotic that she's almost finished with at this point, so once she's done we'll begin discussing the options. Poor kiddo. We just keep having these little setbacks. We're transitioning all of her IV medications to oral medications for when we lose the broviac.

I've spent the last couple of nights with Ben down at our house in Orem. I hadn't slept in my own bed for almost 6 weeks!!! I had to do an emergency trip to the grocery store last night too. There was nothing edible in my fridge and Ben was going crazy with the lack of options for breakfast and lunch yesterday! I've got lots of work to do to get this place ready for Elaina to come home. I'll be spending more time in Orem and less at the hospital as I get ready to bring this little lady home. So much to do and so little time to do it in!

My Mom and Dad brought my Grandma to visit Elaina yesterday. It was a very nice visit. My Mom was able to hold Elaina for the first time since May! Elaina was awake and was absolutely precious. It was wonderful. I was so wrapped up in the moment that I completely forgot that I even owned a camera. What a slacker I am!!

Monday, July 21, 2008

NJ or NG?

We had another pretty good day today. There wasn't a whole lot that really went on today. The doctors decided to let Elaina rest and get used to the high flow before they start trying to wean her onto regular oxygen. They actually talked about discharge in the next 2 weeks if all continues to go well. Elaina won't transition to the surgical unit, they want to limit her exposure, she'll just go straight home from the PICU. It's still far enough in the future that I don't know a whole lot of details, but at least they are talking about it. The only thing that would alter this idea is the stupid femoral art line wound:

You can't really see it in this picture, but the broviac insertion site is in her thigh (under the nurses hand). If you were able to look up close into the large hole, you would be able see the broviac before it enters the femoral vein. (I couldn't get my camera to focus well that close up....) They are going to have the plastic surgeon and possibly vascular surgeon look at it tomorrow and see if she needs to have any type of surgery to repair this. It doesn't look infected at the moment, but we really don't need it to get septic and have her die from a stupid infection after she's fought so hard! It's in such a bad spot. Every time she poops her pants they have to change the dressing. They try to pack the hole with sterile gauze and then put tegaderm over the top, but it's still a huge infection risk. I'll let you know more about this when I know what's been decided.

The only other eventful moment today was the realization that Elaina's NJ has moved into the NG position. She had an "event" where she gagged and threw up and the nurse realized that the medication that had just been given along with formula, was mixed with the mucus that came up. Since she is being fed in her small intestine, this shouldn't happen. So they took an x-ray and sure enough, the tube is in her stomach. She'll get it replaced Monday morning. For the time being they've stopped her feeds, and have her on IV fluids. They are still giving her medications through the now NG, but they don't want to risk her throwing up formula and aspirating into her lungs. She doesn't seem to mind though. Look how peacefully she's sleeping tonight:

I just had to take a picture of her stats too! Best they've been since before surgery!!!!

(Heart rate 134, Respiratory rate 40, Oxygen Saturation 86%)


Once again, I must express my gratitude. Gratitude for the support and encouragement that has been shown to me and gratitude to my Heavenly Father for the miracle that has taken place in our lives. What a roller coaster ride we're on!

Saturday, July 19, 2008

High Flow and more pics

Okay, so I am turning into the slacker queen when it comes to updating this week! I honestly have just been catching up on Ben time, and didn't want to abandon him for the computer. Besides, I only have dial up internet at my Grandma's and I'm spoiled by the hi-speed wireless at the hospital and my hi-speed at home. It takes SO much longer to do things with dial-up.

So, here's the scoop. As of today, she's off the cpap and onto the high flow! They told me that she may need to have the cpap at night, so they haven't moved the machine away from the bed, but for now she's doing great on the high flow! She's still on a lot of oxygen. It's an 8 liter flow with the O2 set at 60%. Her saturations have been in the low 70's. Pretty good! We need to get her flow down, but we still have time and she is improving daily. Her leg is just fantastic! It's got the color back and is warm to the touch. The nurses are able to feel the pulse in her foot now! WooHoo! The pus oozing from her broviac insertion didn't have any discernable bacteria when they cultured it, they are treating her with antibiotics to be on the safe side, but it looked really good when they changed the dressing yesterday. The most worrisome thing at the moment is the owie in her groin. This is the spot where the arterial line was. The scab came off last weekend, but it isn't healing well. Part of the problem is that it's right in her diaper area. The bandages keep getting compromised every time she fills her pants. Her nurses are pretty worried about it, especially since she's still having fevers. Her nurse today told me that she can actually see the broviac in the open sore. This is troubling because the broviac was inserted mid thigh, and this sore is in her groin. They are worried that it will become septic and that her body wouldn't be able to fight off the infection. It would be pretty upsetting if she died from a stupid infection from an art line...... SO, they are going to address it more in rounds on Sunday, but it probably won't get the proper attention until Monday. Aren't weekends fun....
Anyway, we got moved out of our nice little sanctuary in the back corner of the PICU. Now that Elaina is doing so much better, she's been put in a shared room so that 1 nurse can care for 2 children. I have mixed feelings about this. I'm glad that she's doing so much better, but I really loved the privacy and seclusion (not to mention quiet) of our private room in the back. Oh well. C'est la vie!

So, here are some more pictures from yesterday and today! She is looking so good. She has her own version of "pink" though. That is, she looks pink until you compare her to someone who really is. What a cutie though!

"Wow, handlebars!" She's just holding on to her cpap and sleeping away!

Physical therapy getting her used to sitting more upright. This is where you get to see her version of pink, compared to the nurses skin color. She doesn't look very pink in this picture, but her sats were in the 70's.....

Nice and comfortable! She was supposed to "sit up" for 30 minutes, but lasted an hour and got in a good nap too!

Liking the high flow! She's 'almost' ready to smile for me. I tried super hard to get one out of her, but with no luck. Doesn't she look great?!?!?!?!!

Ready to sleep the night away! Mom held her and played with her for over an hour and she's exhausted!

Thursday, July 17, 2008

A Picture is worth a Thousand words

I don't have a lot of time, so I'm just dumping pictures on right now. I'll go back tonight and give a little more info on each picture, so just watch for this post to be updated. Elaina is doing SO great. I lost track of time because I got to hold her and kiss on her today and now I'm out of time!
I feel so blessed and am in constant awe of the miracles in our lives!

Wednesday, July 16, 2008


She did it!!!!  She was extubated at 2:30 on Tuesday afternoon!  She's on c-pap, but her stats (heart rate in the 140's, respiratory rate in the 30's and saturations in the low 70's) are all very good.  They've been checking her blood gases frequently and they are also looking good, so it seems like she's tolerating the extubation well.  I am so proud of my little turtlebug!  She is so amazingly strong and beautiful.  I just can't get enough of her.  The one and only down side of the whole day was that I woke up with the stomach flu and couldn't go to the hospital to be with her.  It's killing me to not be able to be there with her right now!!  I'm still feeling a little bit queasy this morning, and since I'd rather not risk getting her sick, I'm staying away again today.  Of course Ben feels like he's won the lottery with all the extra Mommy time, so I guess it's not all bad.  My Mom and Dad were able to go in for a little while yesterday to see Elaina and they told me that she looked great.  She doesn't like the c-pap attachment in her nose, but otherwise she's looking good.  My Dad said that she looks more pink than she has in weeks, and that while her foot still doesn't look normal, it looks MUCH better than it has in a long time.

Well, I just had to let everyone know how well the extubation has gone so far, I'm going to go lay back down and get myself better so that I can go and see my precious little girl tomorrow!

Monday, July 14, 2008

Miracles from Heaven

Oh, I am such a slacker!! I went to my Grandma’s on Friday night and enjoyed my time with Ben SO much that I didn’t make it back to the hospital until Sunday night. I didn’t even open my computer until this morning. It was so nice to spend some time catching up on my snuggles with Ben! The past few days have been pretty busy, so I’m sorry for not having posted for so long.

What a miracle we have experienced in the last week. Elaina has been doing so great! All week long her saturations have been improving. In fact the numbers that we are getting off her veinous gases are better than the numbers we were getting off the arterial gases earlier this week! Her color has continued to improve, she’s awake and responsive. She has periods of time that she is awake and content to look at her toys and watch her mobile spin. Also, the color has returned to her left foot and today it was warm to the touch and they were able to hear a pulse in her foot with the Doppler! She has been doing spontaneous trials on the ventilator since Friday. For those who don’t know what this is, the Respiratory Therapists basically turn off the ventilator for a period of time. There are safety settings, so if she’s not getting enough to breathe the ventilator will either alarm or kick in for her. They started on Friday with 30 minutes 3 times a day and today she had worked up to 2 hours 3 times today. She has done so well on the spontaneous trials, that the plan is to extubate her on Tuesday morning! They have warned me that it may take a couple of attempts to get her completely off the ventilator since she has been intubaed for 5 weeks, but I’m hopeful at the same time. I am so nervous and excited about this! I just can’t believe that 10 days ago the doctors were talking to me about ending her life, and now we’re talking about transitioning home. God truly worked a miracle in her precious little life. I am so honored and grateful to be her Mother and to have witnessed this amazing experience. One of her nurse practitioners came in this morning and asked me how my “miracle baby” was doing today. Even the medical staff knows that she has had a healing miracle. How marvelous this is! I am so overwhelmed with emotion, I cannot thank my Heavenly Father enough for the wonders we have seen. Thank you all for your continued love and prayers. I know that I cannot do this alone.
Hollie, Ben and Elaina

Friday, July 11, 2008

6 Months Old!!!!!!

Happy 1/2 Birthday Elaina!!!! Six months old today!! What a milestone!

Thursday and Friday were both good days for Elaina. She had her very first spontaneous trial yesterday! It lasted for 30 minutes and she did GREAT!! I am so proud of her. She's had 3 more today, and so far it's looking really good. She'll be weaned off her nitric by tomorrow, so maybe by some time next week she can be extubated! Right now her spontaneos trials are only 30 minutes. We'll go up to an hour on Saturday and then talk about it. This is such a different scenario than last week at this time. My hopes are high, but the docs keep telling me that we're not out of the woods. On a scary note, her broviac site is infected. So far nothing has shown up in her blood cultures, but the site is oozing and inflamed. Infectious disease is looking at it today, so I'm hoping that everything will be okay.

Anyway, I have TONS more that I want to post, but no time to do it in. I will post much more on Saturday night. I actually decided to leave the hospital again and I'm spending the night with Ben at my Grandma's so I don't want to take away from my time with him.

Thank you all again for your continued love and support!!


Thursday, July 10, 2008

Quick Bedtime Update

Well, I think that Elaina is on her way to proving the medical staff wrong! Ahhh, the power of prayer and faith are remarkable!!! Elaina had another very good day today. She started weaning off of the nitric today, her ventilator settings also came down. They're talking about starting her on some spontaneous trials tomorrow, so we could be off the ventilator by the end of next week if all goes well! She's still on antibiotics for her pneumonia, but she's done with her C-Diff, so it's looking very good. Even her foot is looking a little bit more pink today than it was a few days ago. I'm feeling so encouraged by her improvements!
I got to help give her a very good bath tonight and then rocked her to sleep and held her for a couple of hours. She got weighed today as well, she's up to 11 lbs 13 oz! What a big girl!
Anyway, I'm off to sleep myself. The nurses are letting me sleep on the pull out in Elaina's room. I actually think I sleep better when I'm so close to her..

Isn't amazing to see what happens when you pray for a miracle?????

Thank you all!!!!!!

Tuesday, July 08, 2008

Still Fighting

Today was another positive day for Elaina. Her saturations are continuing to stay in the acceptable range. The arterial line in her right foot stopped working last night, and so the nurse took it out today. That means no more arterial blood gases. The reason that arterial blood gases are so important is that it tells us how much oxygen is in her blood before it's used by her body. We can take a veinous blood gas (from her broviac) but it only tells us how much oxygen is left over after she's done using it. But, a veinous gas is good to let us know how well she's breathing, because we can monitor her CO2 levels. In speaking with Elaina's doctor tonight, we're going to just use the CO2 levels in trying wean her off her ventilator and the nitric. They could do capillary gases, but they would have to poke her every single time they want to find out, and we don't think that it's really worth it when the number would be very similar to the veinous gas anyway. So we're going to trust her pulse oxymeter and hope that she does okay. The doctor has weaned her ventilator down a little bit today but she's still on the nitric and has a ways to go on the vent. I'm getting mixed signals from the doctors at this point. I'm not really sure how to feel about it. They are encouraged by Elaina's progress, but I get the general impression that they still do not think that she will survive this ordeal. I was talking with one of the doctors about "the future" tonight, and she bluntly told me that she honestly hadn't thought about it. Hmph. Well, I think about it!! I am fully aware (painfully aware) that Elaina may not make it through this. BUT, I truly feel that I need to remain positive and continue to have faith in Elaina as well as my Heavenly Father. I am grateful for every moment of every day that I have this precious little soul in my life. I hope and pray that I am allowed to keep her for many days to come!

Another Precious Day

Elaina had a pretty good day today, all things considered. Her blood gases have stayed in the same good range as yesterday, so once again I am encouraged. They are weaning her vent settings again, but very slowly. They haven't even talked about weaning her nitric, so I have no idea what the big plan is. There was one discouraging part of the day today. Elaina's left foot is still really dusky. This is a direct result of the art line that was put in her femoral artery and then the broviac that is in her femoral vein. Radiology came today and did an ultrasound, and they were unable to locate the artery below mid-thigh. They also were not able to distinguish any of the "normal" veins in her lower leg. They told me that they could hear a faint pulse behind her knee, but that's it. Now, it is possible for her to grow collaterals in her leg and for the blood flow to return to her foot. BUT if this does not happen, and if Elaina continues to progress in all other areas, they told me that we may have to amputate her foot. I am still in shock. The hard part is that this is really a life over limb decision. I'd rather have the broviac in her leg than in her Glen, so I truly feel that I made the only decision I possibly could. With her access as impossible as it is, she needs to have the broviac to maintain her life. Even if I had them take out the broviac (if there was another option for access) the damage has already been done. So, now I'm praying for collaterals and clots! Just in the opposite parts of her body that they already are!!! Clots in the coiled collateral and collaterals in the clotted artery and veins! Oh well. Her life is so precious to me. She was SO cute today. She's completely off the paralytics now and she spent her morning wide eyed and content. She still isn't parting with any of her sweet smiles, but just to see her big brown eyes is worth every second of my time. I ended my night by holding her for 3 1/2 hours. What a precious, precious day.

Sunday, July 06, 2008

Faith and Fasting....

The first thing I would like to do is thank everyone that participated in fasting and prayer for Elaina today. I truly felt comforted today.
I am so sorry I did not post yesterday. I just really did not know what to say. Elaina did not show any signs of improvement on Saturday. In fact her hands and feet were cold and very dusky. The scariest part was to see the blueness of her nose and lips. Her PO2's were averaging 27 and her saturation level never got above 51. At my request, the nursing staff moved us to a "private" room in the back corner of the PICU so that I could have some seclusion. This room is so much nicer. Not only is it a little bit larger, it's away from the hustle and bustle of the PICU. There isn't a window in our bed space, but there is one in the room next door, so we do get some natural light. There is also a chair that pulls out into something resembling a bed (not very comfortable, but who cares). I have this at the back of the room and can "lay" down without having to leave Elaina. We dimmed the lights and had Elaina's Baby Einstein Lullaby CD on repeat creating a very soothing environment. I was able to hold Elaina for almost 3 hours again last night. By the time we wrapped up, I was so emotionally drained that I couldn't think straight so I went to bed and cried myself to sleep. It was a very discouraging day.
I woke up with a start early this morning (I actually jumped out of bed) as a Code Blue was announced over the hospital intercom. It wasn't Elaina (thank Heavens!!!!!), but after that huge adrenaline rush I couldn't go back to bed, so I just got up and went in to be with my little bug. I walked into her room and was greeted with a smile by her attending and nurse. They'd just gotten a blood gas, and her PO2 was 38 and her saturation was 72!!!!!! Not only has she stayed in this range all day, they have been able to wean some of her ventilator settings! She is also looking so much more pink than she has in days. I wouldn't say that the doctor was optimistic, but she did finally talk with me about a plan if Elaina continued to improve. I know that this is just a teeny tiny step in the right direction, but at least it is in the right direction. I think that she is getting better because of all the fasting, prayers and faith in her behalf. I really do. And even if it's only this one day of improvement, it's one day more than most of those caring for her thought that she'd have. I am so grateful for this day. Elaina is so amazing. She is strong and she is beautiful and the power of her spirit is strong.

Saturday, July 05, 2008

4th of July

I cannot believe that it is already the 4th of July. It seems like there was just snow on the ground yesterday and now it's blazing hot. Of course that's what happens when you live inside a hospital for almost seven weeks! :)
Today was fairly uneventful, but slightly discouraging. Elaina's gases did not continue to improve. In fact the best gas that I posted last night was the best one since her procedure. On the same token, she's not deteriorating either. She's maintaining, and at the moment, that's good for me.
I had a very difficult start to my day. I had truly hoped that I would wake up and that I would see continued signs of improvement, and when I found out that her oxygenation had not continued to improve I pretty much fell apart. As I was hiding in my corner crying, one of the chaplains came in and without asking any questions she pulled up a chair and cried with me. She asked me if I wanted to have some Elders from my church come and give me a blessing. Before she could even leave to arrange this for me, the family (Hillary, Ryan and Daxton Cook) in the next bed space came in. They are also a heart family and are going through their own personal struggles. (Thank you SO much Hillary for holding my hand while I cried). They are also members of my religion and Ryan (with the assistance of Hillary's Grandfather) offered to give both Elaina and I a blessing. Elaina was blessed with comfort, she was blessed with healing and was told that she was in the company of many angels. In my blessing I was told to have faith and patience. To have faith in Elaina, in the doctors and nurses and in our Father in Heaven. I was also blessed with peace that I would be able to make the right choices not only for Elaina but for my family in the days to come. Almost immediately my spirits were lifted and I was able to feel comforted. After much prayer today I feel that we just need to give Elaina more time. Expecting her to rebound instantly is just asking too much of her tired little body. Not only has she been through so much in her short little life, she has been through numerous procedures in just the past 2 days. She is such a fighter and is fighting a most noble battle. She amazes me and I feel so blessed to be her mother. I do not know what the outcome will be, but Elaina and I will go through this together and I know that our Savior will be carrying us through it.
I was able to have another beautiful (and extremely emotional) experience tonight. For those of you who are not familiar with Primary Children's, it is in the foothills of the Salt Lake valley. This means that there is truly a panoramic view of the Salt Lake Valley from the west side of the hospital. My parents brought Ben over tonight and we parked on the top of the parking terrace and watched a number of fireworks displays. It was a lot of fun and I really enjoyed spending some time with them. Before we went and watched the fireworks, we came in and visited with Elaina. My nurse arranged for a small couch to be pulled into our bed space and I was once again able to hold Elaina, this time with Ben next to me. Ben snuggled up close and he and I sang Elaina a lullaby. It was very precious. My Mom took pictures and a small video clip. I was pretty emotional and cried through most of it. I've been a total bawl baby for the past couple of days. I guess I'm entitled, all things considered.
Anyway, the doctor is talking about maybe taking her off the paralytics a little bit on Saturday, but for the most part we're going to let Elaina tell us what we need to do for her. Thanks to all who read this for the love and support during this time. I'm continuing to pray for our own little miracle.

Friday, July 04, 2008


I’ve got to say that I really don’t know what to make of this day. I am completely exhausted. Physically, mentally and emotionally. Let me start with the positives of the day.
Positive #1: After 3 hours in Specials Lab we were able to get the broviac in a femoral vein in Elaina’s left leg. Yay! Best choice out of what we had to choose from. She now has 2 lumens for medications, etc. Her RA’s (lines put into her aorta at surgery) are coming out tomorrow.

Positive #2: Cath Lab was also today, and Dr Gray was able to access the “plump collateral” that we’re hoping was causing all the problems. He put a coil in it and now we’re just waiting for it to clot off (can you imagine, I’m praying for clots…).

Positive #3: Her gases are slowing improving. Well, she’s only had 3 since she got back from cath lab. The numbers that they are the most worried about are her PO2’s (partial pressure of oxygen in the blood) and her blood saturations. Normal PO2’s are between 60 &100. They want her saturations in the 80’s or above.
4:30 blood gas: PO2 31 Saturation 51
8:30 blood gas: PO2 34 Saturation 63
12:30 blood gas: PO2 38 Saturation 69
So she’s making progress. All I can do is pray that this continues and that we’ve found the underlying cause of her poor oxygenation.

Now, the not so positive parts of the day. The broviac is in Elaina's left femoral vein. Her left femoral artery is the one that was damaged by the art line earlier this week. Her circulation is very poor in this leg. We still can't find a pulse in her ankle or her foot and her foot is very dusky with sluggish capillary refill. It was warmer tonight than it was this afternoon, but it's still got a long way to go. THEN, I was given “THE talk” by the doctors and Palliative Care. If the procedure that was done in Cath Lab is not successful, if her oxygenation does not improve, there is not much that can be done to make things better. Elaina is currently on full support on the ventilator. They could possibly go a little higher on the nitric oxide, but it probably wouldn’t make a significant difference. There are still 2 collaterals that they were not able to coil. I’m not sure if this is because they were too small or if it’s because they are in a spot that the catheter couldn’t get to. Right now, they are not much of an issue, but if the blood flow “plumps” them up we could be right back where we are now. Also, because of all of this, they are concerned that there is just too much stress on her heart and they want me to think about what I want to have done if her heart stops. I also need to think about what I would do if this procedure doesn’t work and her saturations continue to drop. There were no surgical interventions offered to me. So, I may possibly have to make the hardest decision of my life. Needless to say, most of my day was spent in tears and in prayer. I would like to ask everyone if they would be willing to have a special fast for Elaina on Sunday. I know that God can work miracles. I know that He can heal the sick. Please join with me in her behalf on Sunday.

Now that I’ve depressed everyone, I’d like to close on a more positive note. The reason that I was so late posting was that I was finally able to hold my sweet precious Elaina for 3 whole hours tonight!!!!!!! This is the first time I’ve been able to hold her since June 11th. It was a beautiful, tender experience for both of us.

Wednesday, July 02, 2008

The Neverending Day...

What a LONG day! Let me start at the begininng. Last night was a tough one. Elaina's saturations were low, in the 50's, and her lactic acid level (it indicates the stress her body is under, normal level is 0.5-1.6) went from 1.4 to 5.9 in 4 hours. She had the staff in a panic, and so at 1am they decided that they needed to put her back on the nitric oxide. They checked a blood gas 30 minutes later and her level was back down to 3. The last time it was checked, this morning, she was back to 1.6! So it seems the nitric is working. I finally crawled myself into bed shortly after 2am but I made the nurse promise to wake me if Elaina's blood gases were declining again. Fortunately I was able to get a few hours of sleep without a knock on the door.

The original plan had been to go to MRI today, but the Nitric machine isn't allowed in MRI, so that plan had to be scrapped. Mid-morning I was told that she was the next case on the docket for surgery to put in her broviac line. She didn't actually go to surgery until about 1:00. They tried to put the broviac through her lower abdomen into the inferior vena cava, but they were unsuccessful. This is unfortunate because at this point it is essential to have access for medications and blood work. We have 2 options left, but they are both dangerous for different reasons. First choice is to take her to Floroscopy and have the Radiologist put the broviac in either her back or her liver. This is dangerous because if she bleeds, they won't be able to stop it quickly. But this is also the most preferable option. Second choice, that I really hope we don't have to resort to, is to put the broviac into her Glenn. This is highly dangerous if she gets a clot or an infection. I pray that they do not have any complications with this procedure and that we don't have to go to the 2nd option.

Once we got back from the OR, Elaina was sent for an angio-CT. This is similar to a regular Cat Scan, but they injected dye into her veins during the CT to see how the blood was flowing. Then when she got back from this procedure, she had an echo! What a busy girl she was today!

Anyway, here's what we were able to find out today from the results of the CT and echo. To simplify the explanation I was given: She has a collateral vein that has re-routed some of her blood supply. This vein is growing in size as the blood chooses it as the short cut to circulate the blood through her body. The reason it's a short cut is that this blood flow bypasses her lungs, and therefore isn't getting oxygenated as it circulates. So, the good news is that her Glenn and Central Shunt are open AND this collateral vein can be fixed. She will be going to cath lab tomorrow, they are going to go in through her left jugular (in her neck) and they are going to try to coil off or tie off this large vein. If all goes as anticipated the blood will return through the Glenn and shunt, and Elaina will be able to have her better profusion back, and we can get back to the original plan of weaning her off the vent and getting better so that we can go home some day. :)

Tonight she is still on the ventilator, on the nitric oxide, is paralyzed and sedated and is off feeds in anticipation of the procedures tomorrow. Her blood gases are acceptable, so the nurse is just going to let her rest so that she'll be prepared for another hard day Thursday.

On a side note, her poor little left leg is not doing so well. The art line that they had in her groin really caused some problems with blood flow to her leg. From what I understand, the artery clotted. Right now there are no pulses in her foot, but there is capillary refill. There is a Vascular Surgeon from University of Utah that is checking on her daily. He was able to doppler (an amplifier that allows you to hear the pulse) the artery at her groin (femoral), and he also heard a small pulse behind her knee but still couldn't find it in her foot. Her poor little foot is so cold.... The surgeon doesn't feel that he needs to do any type of surgical intervention at this point because the foot isn't getting worse, but I'm still concerned. One more thing to add to my worry list.

She is so strong and so beautiful! I can feel how powerful her sweet spirit is. She has been given so many beautiful blessings and I know that the Lord is answering the prayers that are being said for her. I appreciate all the prayers and concern that we've had through this long journey. I don't know that I'd still be sane if not for all the love that has been shown to our little family. Thank you all so much!
Hollie, Ben and Elaina

Tuesday, July 01, 2008

Another Backwards Day

So, today was no better than yesterday was. Elaina's saturations have continued to decrease, so today they re-paralyzed her. If she's holding still then she's using less oxygen. The art line in her groin failed, so now she has one in her right ankle. It's not working so well at the moment, so I'm not sure how long its going to last.
Anyway, everything else is still up in the air. They are probably doing her broviac on Wednesday. She has an MRI at noon on Wednesday as well. The results of the MRI will dictate the next step, it may be cath lab, it may be something else. She really isn't doing so well tonight, I've decided to stay at the hospital for now. Her saturations are very low, her lactic acid level is rising and she is on full ventilator support for now. I really do not know what is in store for her at the moment.
All I can do is pray and put my trust in my Heavenly Father.