Monday, June 30, 2008

A Day of Setbacks

If you have ever read the children's book "Alexander and the terrible, horrible, no good very bad day" you will understand how Elaina's day was today.

Today was a NOT a very good day. It all started last week with the issue of an "art line". This is like an IV, but goes directly into an artery so that they can draw blood as well as use it for fluids and medication. They also insert a sensor into this line to monitor her true blood pressure. Elaina had an art line in her right wrist that decided that it didn't want to work on Friday night. The doctor re-wired it and it worked okay, but only for a few hours. On Saturday, they tried to put an art line in her left ankle. It also only lasted a few hours. Then they finally got an art line to work in her right wrist, but it was very picky, and they had to be very cautious with the tension. When I got to the hospital on Sunday, the art line was gone. This morning on surgical rounds, the surgeons INSISTED that she have an art line for blood pressures as well as to monitor her arterial gases (how much oxygen she's really getting in her body). They can get a blood gas from a vein, or by a finger or heel stick, but these gases aren't as accurate. So the surgeon came and tried to put an art line into her armpit. (He tried both armpits) He didn't want to do a cut down (they will actually cut through the skin and tissue to expose an artery and once the catheter is in place they stitch it back together) in her armpit, so it was decided to send her to fluoroscopy (sp?) to see if they could get a picc line in. They had succeeded in getting an IV in her foot, so they injected some contrast to make sure that there was a vein that would work before poking her, but there was nothing they could find for a picc line. So they went back to the art line idea, and they finally got one inserted in her left groin. OUCH! Anyway, because of all the procedures, she was paralized and fully sedated for most of the day. This meant that all her ventilator settings went back up and we lost all the weaning that was done over the weekend. They are going to talk to me tomorrow about taking her back to the operating room to put in a broviac line. This is kind of like a picc line, but it lasts a whole lot longer and I was told that there is less of a risk of infection with it. We also found out that she was positive for C-diff, a bacterial infection in her bowels. It explains the fevers, and they started her on Flagyl a very strong antibiotic. One of the nurse practitioners told me that some babies are just born with this bacteria in the intestine, so who knows..... To top things off, the doctors are really worried about her profusion. They think that her oxygenation should be better at this point, so she had a sedated echo this evening. They said that the Glenn and the central shunt are open and seem to be working, but they also going to discuss maybe sending her back to the cath lab or for an MRI for a better look and to see why she's not more oxygenated. This is really discouraging for me. Things were looking up, and now this. Anyway, I need to get to the hospital early tomorrow so that I can be there for all the discussion and decision making. Hopefully I'll have better news to report tomorrow....

Sunday, June 29, 2008

Day of Rest

Elaina is getting another resting day today. She did such a great job weaning on her ventilator settings yesterday, that they didn't want to push her too hard. We're aiming for Tuesday or Wednesday for getting her off the vent at this point. They might start her on some spontaneous trials tomorrow, we'll just have to wait and see how she's doing. She just spiked another fever, 39.6 (103 for the rest of us!), so she's getting some Motrin and some rest.
Not much else to update. Slow and steady! We're winning this one!

Saturday, June 28, 2008

Saturday, weaning off the Vent

Things are moving forward! Today was spent weaning the ventilator settings, getting ready for extubation. The doctors told me that she had a really good chest x-ray today, and that if she tolerates her spontaneous trials she could be off the ventilator as early as Sunday. I'm thinking it might take a day or two longer, the nurses and Respiratory Therapists are still getting quite a bit of junk out of her lungs. She's started throwing up, which is a bit concerning to me. Feeding is probably the next big issue that we'll have to deal with, and getting her off the ventilator is the priority at the moment. So, she's also off the TPN, but still on the lipids until we can increase her calories. They're working on weaning her off one thing at a time, so everything else is the same. But we're on the road to recovery. Everyone here is SO amazed at her recovery this past week. She is doing so much better than was expected. I feel so blessed to have her here. She is such a fighter, her spirit is so strong. I know that she has Angels watching over her. You can see it in her countenance.

I feel the need to mention one of the families that is part of the Intermountain Healing Hearts support group that I belong to. Seth and Shannon Hossfield lost their son Charlie on Thursday. He was 9 months old, had HLHS and died unexpectedly. My heart goes out to them at this time, and I would really like to ask for some extra prayers in their direction as they struggle during this difficult time. I can only imagine how difficult it is for them and I just can't seem to get them off my mind..............

Friday, June 27, 2008

Sleepy Day

Not too much new to report today. They are letting Elaina have a rest day. They weaned her a little bit on her pain meds and sedations earlier, so it was decided to just let her "hang out" today and get used to the lesser amounts of medication. She isn't really very alert today. She does wake up when I talk to her and love on her, but then it's right back to sleep. The nurse practitioner said that she hasn't needed to give her any medications to counteract the effects of less pain medication and sedation. They did start Elaina on a new medication a few days ago. I've been trying to think of a good way to blog this, but to put it bluntly, she's on Viagra 4 times a day! HA! It is a vasodilator used for pediatric pulmonary hypertension and they used this to help wean her off the nitric oxide. It is administered through her NJ tube, so this is something that she can come home on! It made me laugh. Just think, I'll get to tease her about this when she's a teenager! :)
She still has a low grade fever today, still no answers as to why. Poor kiddo. No wonder all she wants to do is sleep. She has been throwing up some stomach acids today, so they put an NG with a suction in her other nostril to help keep her stomach empty. They also just wrote an order to restart her reflux meds, so hopefully that will help her as well. Anyway, she's sleeping soundly, so I'm going to give her some kisses and go home. My Dad just got here from Nebraska and he and Ben are waiting for me!
Thank you all again for all the kind thoughts and especially the prayers. I know that we are witnessing a miracle in our lives.
Hollie and Elaina (and Ben of course!)

Thursday, June 26, 2008

One step at a time

Elaina took a BIG step today! She's been of the nitric oxide for 12 hours now! She seems to be tolerating it very well. She's still on the ventilator though. The doctors are thinking that maybe by the middle of next week she'll be off? They said that they'll probably want to continue watching her for a week or so after she's extubated before they even think about moving us back up to the floor. With as sick as her lungs have been I've been warned that she may not tolerate coming off the ventilator very easily. Her chest x-rays are looking a little better and they are suctioning her less every day. That's okay, we're just going to stick with the plan: slow and steady.... She's still moving up on her feeds, they've increased her up to 8cc's an hour and are now going to increase 1 cc every 8 hours. We're hoping to get her rate up to 25 cc's per hour (full feeds) and then we'll work on getting her caloric needs met. She's getting 20 calories per ounce right now and potentially we want to get her back to 30 calories/ounce. She's still on the Diurel and the Bumex to get rid of any extra fluid, and right now they don't have any plans on switching her to anything else or lowering the dosage. It's one of those "if it's not broken, don't fix it" situations. It's working just right at the moment, so the docs said that they'd worry about that down the road.
So, I'm still doing the hovering thing. I can't hold her yet because she still has her heart lines in and the surgeon hasn't cleared it. I was told that once the surgeon has cleared her I can hold her even if she's still on the ventilator. For the time being I have a small stool that I stand on and climb into her crib for kisses. She'll usually open her eyes and look at me when I do this, but today she was just too tired. She cracked one eye open to make sure that it was really me and then went right back to sleep. She's being SUPER sleepy today! She hasn't wanted to wake up for much. She even puts up with the nurses changing her diaper and then goes right back to sleep.
She just spiked a fever of 39.1, so once again they are drawing blood for cultures. So far nothing has grown on previous cultures, so I'm continuing to pray that we stay the same. Silly fevers.....
Well, I am enjoying my newly found freedom. I've decided to enlarge my comfort zone by staying at my Grandmother's house for now. My plan is to leave the hospital at 7:00 when I get kicked out for shift change and spend the remainder of the evening with Ben. I will then sleep at Grandma's and come back in to the hospital after breakfast. This way I can spend some much needed time with Ben and still be here with Elaina as much as possible.

Wednesday, June 25, 2008

Turtle Steps

Elaina is doing so well! All the doctors and nurses are even surprised by her progress. Yesterday they took out her remaining chest tube and removed her pacer wires.She did have a fever all day long, so once again they sent blood for cultures. Her white count was the same, but her CRP (marker of inflammatory response) was elevated. This just makes the doctors and nurses think that there might be some kind of infection brewing. Scary. So far they haven't gotten much back from previous cultures. They did grow something from her ventilator tube, but they are already giving her an antibiotic that cover it. Also, they think that the bacteria is just in her tube, not in her lungs. Because she is on a blood thinner they are not going to get a sample from the end of the tube, they are worried about her bleeding if they did. So, we're still watching and waiting.

I'm going to give some Immunology numbers. I don't expect that these numbers will mean much to anybody but the other DiGeorge syndrome Mom's out there, but this just tells us how capable she would be to fight infections. Keep in mind that these numbers were obtained before her surgery, and they have probably changed since then.

Immunoglobulins: In Feb & March they were 200, prior to surgery they were 80. Normal range is 400 or higher. They gave her some gammaglobulins by IV yesterday to boost her immune response.

CD4 (T4) T cells Elaina 2434 normal range: 1580 - 4850

CD3 (T3) T cells Elaina 3642 normal range: 2170 - 6500

CD2 Elaina 4477 normal range: 3800 - 5300

There are more, but these results are difficult for me to interpret, so I'm not sure what else to post. Anyway, all her values are within the normal range. Some are better than others, but at least she's this good for now.

The doctors are trying to wean Elaina off the nitric oxide, she seems to be tolerating it and should be off of it by tomorrow morning. They have increased her feeds to 4 cc's per hour, and will start going up 1cc every 12 hours as she tolerates it. I heard that she even had a poopy diaper last night! I talked with the Palliative Care Team today and we all agreed that Elaina needs to take "turtle steps", slowly making changes/weaning so that she can continue progressing.

So last night I took a turtle step of my own. I left the hospital. It was SO traumatic (for me, and for me alone...) to leave my little Elaina bug! She is stable, and Ben needed some real Mom time. After much coaxing from my Mom and 2 of the PICU nurses (they plotted and then ganged up on me...), I decided to spend the night with my Mom and Ben at my Grandmother's house in Bountiful. Since Bountiful is just north of Salt Lake and it only takes 20 minutes to get back to the hospital (in good traffic), I felt okay about making the transition. I'm still not ready to be home in Orem (an hour drive south), but I think I'll start spending the evenings in Bountiful for awhile. It was good to be out of the hospital and I'm looking forward to spending some more time with Ben.

Monday, June 23, 2008

A V.I.P. came for a visit today

Elaina had a very special visitor today. Her big brother Ben came for the first time since Elaina's open heart surgery. This was a very difficult decision for me to make, and to be honest, I had to pray about it for almost a week before finally feeling good about it. It is SO hard for me to see Elaina hooked up the way she is; not only to the ventilator and draining tubes, but to see the cuts, pokes and bruises, some old and some new. I can only imagine how scary and confusing this could be to a 5 year old. I think that as a mother, I want to shield my child from these kind of things. BUT, I have now been at the hospital for 12 days without leaving, and Ben has only had the opportunity to spend an hour with me during that time. I finally decided that if Ben had the ability to see Elaina, that he would understand why Mommy had to be here instead of being with him. Ben was an only child for most of his life, and for all intents and purposes, he truly is a Mama's boy. Being apart has really taken a toll on the poor kiddo. Anyway, to make a long story short, Ben came at 1:30 and took me to lunch in the cafeteria. (Thanks Grandma for the $10!) Then we met with Joy, who is a child life specialist. She helped Ben make a "Buddy" doll and explained everything that Elaina was hooked up to. Ben was then ready to come and visit his sister. He did a lot better than I expected, but didn't want to stay very long at first. We took a trip to the playroom, he made a couple of crafts and then he wanted to go back and visit Elaina some more. It was a very positive experience, and now I feel a whole lot better about letting him have additional visits. He's going to be staying with my Mom now for a little while. He's been with my Aunt and Uncle almost exclusively since Elaina was first admitted to the hospital. On a side note, my Mom is currently staying with my Grandma who is recovering from kidney stones. Since Grandma is closer to the hospital than my house, I should be seeing more of Ben. Also, I'm hoping that in the near future I'll feel confident enough with Elaina's stability that I can go out to my Grandma's for dinner and to spend some time with Ben.

Anyway, quick Elaina update! Elaina had a very good day today! Her nurse practitioner called her "tenuously stable", but I think it was a good day. She got rid of 2 of her chest tubes, the main median tube is still in. She also got rid of the IJ (intra jugular) and her foley catheter. They started her on a couple of new medications to help in weaning her off of the nitric oxide and ventilator. She got down to 50% on her oxygen today! She did need to get a small blood transfusion this morning, and it seems to have made her look a little red - which for a "blue" baby means a little purple, but the nurse tonight is calling it her version of ruddy. They also put her NJ back in and started her feeds. She's on a high risk protocol, so right now she's only getting 1 cc per hour of Pregestimil. She had her eyes open quite a bit today and seemed to be comfortable, so all in all I feel like it was a good day. It's her first little baby steps on the road to recovery.

Now it's picture time!! What a day we had!!

The nurse last night was able to switch Elaina to a smaller crib. Perfect timing for a visit from Big Brother Ben!

Awww, he loves to pose for the camera! (She's awake looking at him!!)

Ben had to give her kisses. The only spot he could reach was her hand...

Do you see her stitches? This is just one of the many spots that will become her "medals of honor" from this visit. They had her subclavian central line here, and then removed it when Dr Hawkins attempted to do the axillary fistula attachment during her last surgery. She has a matching incision on the other side.Another one of her medals of honor. This is from the cut-down arterial line that was done before her first surgery. The line stopped working last Wednesday and had to be removed. They now have a cut-down arterial line in her other wrist. (Next to "normal" colored skin, you can tell how pink she really isn't.....)

She woke up for a little while and was looking around. She's still pretty zonked with all the sedation and pain meds. At least she's opening her eyes when you move her and talk to her.

The nurse got the best blood gas of the day shortly after this picture was taken. Way to go Elaina!!

Well, now I'm off to bed. It's actually 11:45pm. The pictures weren't uploading and it took me forever to get this done. I just had to post them though....
Thank you all again. I know I say it every day, but I know that the reason she is doing so well is because so many people are praying for her well being.

Sunday, June 22, 2008

Chest Closed!

They closed her chest at about 10:00 this morning. So far she seems to be doing well. Her sats are alright and her heart rate and blood pressure are within an acceptable range. She's still retaining a little more fluid than they'd like to have on her, so she's still getting the diruetics. She's tried to wake up a couple of times, but then falls quickly back to sleep. I'm really trying not to stimulate her too much, so I'm continuing to hover. She's been through so much and has had such a rough time.

I've been debating whether or not I should post some pictures of her. I've had some family say that I shouldn't, and some say that I should. After much deliberation, I've decided to post just a couple of pictures. As she continues to improve, I think that I will post more. You can tell just how sick she is by comparing the before and after pictures. She has a long way to go, but I know that she can do it. She has such a strong spirit and determination.

I am posting these pictures from the most recent to the oldest. She has been through so much that it truly breaks my heart.

This picture was taken just a little while ago, she's starting to wake up from the anesthesia. She's trying so hard to open her eyes, but is still too sedated. This is honestly the best that she has looked since before surgery.

This picture was taken at bedtime last night. She still had quite a bit of fluid that she needed to pee out. She did a good job!

This was Thursday, about 12 hours Post-Op after the emergency surgery. Her poor head and face were SO swollen. The thing on her forehead was to monitor the oxygen saturation levels in her brain. It was a way to make sure that she was getting enough oxygen.

This was taken a couple of days before her 2nd surgery. Her face just looked so purple, especially around her eyes. She was very swollen still and really struggling.

This one was Post-Op night after the 1st surgery. Poor little bug. She looked SO miserable. We had no idea that we'd have to do this again 6 days later!

This was also the first night. Such a big bed for such a tiny baby. At one point I counted 20 different medications and fluids on her medicine stand. They told me that they needed to have this large crib for all her drain tubes and to accomodate all the wires as well as the ventilator tubes. This big crib got crowded fast!

Good Morning!

Elaina had a pretty good night last night!! Dr Hawkins (surgeon) said that he is pleased with her progress and is going to close her chest this morning. Her lungs are also sounding a little bit better this morning. Her chest x-ray doesn't really look any better, but the Respiratory Therapist said that she is hearing better breath sounds. She also told me that once Elaina's chest is closed she can do a little better suctioning to try and clear up some of these secretions.

Words just cannot express my gratitude for the prayers that have been offered in our behalf. Elaina was not given the best prognosis after her last surgery, and her life is truly a miracle.
Thank you all so much!

I will post again later. I've been told that we will probably have a day or so of setbacks after her chest is closed. Although she's stable, she is still very weak and she doesn't have a lot (if any at all) of reserve energy.


Saturday, June 21, 2008

Saturday, still hovering...

Today's big focus has been to get rid of the fluid. Elaina was on the maximum dose of Lasix, but it didn't seem to be working as well as they'd like, so she was switched to Bumex last night. She's still getting the Diruel, so she's peeing like crazy! It's good. The more fluid she gets rid of, the better it will be for chest closure tomorrow. On a positive note, nothing has cultured in all the blood and urine samples that have been sent. She's still having her random fevers, but she's been doing that for the last several weeks. She really likes to puzzle the doctors and nurses. All in all, she's had a pretty good day today. She's still pretty heavily sedated, but her paralytics were stopped this morning. She's wiggled her feet a little bit and actually opened her eyes a few times. Her eyelids are still pretty swollen, so I'm sure it wasn't a fun thing for her to do. Her lungs are about the same. They haven't been able to wean her very much on the oxygen and nitric. I think that's okay though. I'd like to have the focus be on getting her chest closed, and then work on getting her off the ventilator. Not too much else has changed, I'm still just hovering. It's kind of funny, all week long the PICU is loud and noisy with people everywhere, and today you can actually feel the "weekend" in the air. It's been a pretty quiet day.
Thank you all again, I know that it is through prayer that Elaina is doing so well. I pray that she will have a good night tonight and that she will be able to get rid of the excess fluids that are in her body so that her chest can be closed tomorrow. She is so strong, brave and beautiful.

Friday, June 20, 2008

Friday Happenings

There's not too much going on so far today. Elaina is continuing to be fairly stable. She's still having small fevers, and this morning's lab work showed an elevated white count, so it looks like some kind of infection could be looming. Since she's been on antibiotics for several days already they are hoping that once identified they can treat it quickly. They are still talking about closing her chest on Sunday, but she needs to get rid of lots of fluid before that can happen. She's been on Lasix since her surgery, and today they started her on Diruel too. She's already starting to pee a little more, so hopefully we're on our way towards a closed chest! Her saturations have been good today, so that's happy, but her lungs are about the same. The upper part of her right lung is still collapsed, and there is debate about what to do to help her out with it because there is not much blood flow to that part of her lung. This is due in part to her small vessels and is part of her pulmonary disease. I've been told that she will never truly have healthy lungs. Otherwise, she's still on the paralytics and heavily sedated. Basically, I'm in watch and wait mode (aka: hovering nervously at the beside).

I did get some good sleep last night, and I'm preparing myself to go to bed early tonight. So, I asked to talk to the Palliative Care Team today. I was talking with one of my other heart Mommy friends, Jessica, and she and her husband have been meeting with Palliative Care. Jessica said that it has really helped her deal with the stresses of having a sick child and thought that it would probably help any family that is dealing with chronic health issues. Since I think that I fall into that group (LOL) I asked my social worker about it. In order to meet with the team, you have to have a referral from one of the doctors. Well, I think I really freaked out one of Elaina's doctors, because she thought that meant that I'd given up hope! I guess there is a perception that Palliative Care works only with families that are faced with the death of their child. In reality, they are a support system for families dealing with chronic illness. The mission statement in the pamphlet they gave me states that they are "an interdisciplinary team that helps children with life-threatening illnesses and their families find comfort, support and hope." They came to Elaina's bed space here in the PICU and talked to me for a little while this morning. They really helped me to put some things into perspective and gave me some suggestions for dealing with the somewhat insurmountable stress that I'm feeling right now. I have always been a person that needs to talk through my problems, so having a "professional" ear to listen really seemed to help. So, thanks Jessica! I am really glad that I talked with them today and would highly recommend it to other moms and dads. We are going to continue meeting so that I can talk through my fears of getting this little one home safe and sound, as well as how to cope with it all once she's there. My spirits are a little higher tonight, thanks in part to the loving support that has been shown to me through this blog and probably because I actually slept last night!
Well, I'm getting kicked out of the PICU for shift change in a few minutes, so I need to pack things up. I think I'm going to go take a long hot shower...............

Thursday, June 19, 2008

Thursday Night Update

I am probably too tired and emotionally drained to be writing this right now. But I wanted to let everyone know that I think the reason I'm still sane is due in large part to the prayers that are being said in our behalf. Thank you all so much. I truly have faith in the power of prayer and I know that I would not have survived the last 36 hours if not for the prayers that have been said for Elaina and I.
That said, Elaina's day had lots of ups and downs. She was fairly stable for a large part of the day. Her stats stayed in the 70's, which is right where they want them right now, her CO2 was also right where they wanted her to be. They worked on weaning her down on the ventilator and the nitric oxide. Tonight she started a fever. Her chest has been open for 1 full week. Her risk of infection increases each day that it stays open. Dr Hawkins would like to close her up on Saturday or Sunday, but that all depends on how well she does up until that time. With her increased temperature came an increased heart rate as well as a higher blood pressure, and her sats dropped down to 63. They are trying right now to get all of this stabilized. After a little Tylenol her temp was back down to normal, but they took some blood to send to the lab to see if she has an infection. Right now, I'm not sure that her little body would be able fight an infection. They have her on 3 different antibiotics already in an attempt to avoid infection. Anyway, the nurses were tired of my hovering and since I'm practically falling over from exhaustion, I am tucking myself into one of the sleep rooms at the hospital.
I know I've said this before, but thank you all for your continued love and support during this trial.

Thursday Morning Update

So, I got about 4 hours of sleep last night. My sister Becky finally forced me to lay down in the early hours of the morning. It was so hard to leave Elaina's beside last night. I finally made a deal with Becky and Elaina's nurse that after we got 2 good blood gases in a row, I would go to bed. All in all, Elaina had a stable night. She has continued to be stable this morning as well. Right now her saturations are fluxuating between 70 and 73. Pretty darn good considering that she was so (scary) low yesterday prior to surgery. Her blood gases are continuing to be stable, so we're all just holding our breaths for now hoping that this surgery was what needed to happen.
She's still on the nitric oxide, but didn't need to be on the oscillator this time. They've weaned her oxygen down to 75% and are aiming to get her to 50% by tonight. She hasn't needed one of her blood pressure medications so far, and so we're just hoping. It is truly in the Lord's hands at this point. Honestly, I have such a peace in my heart. I feel that she is going to survive, and I refuse to even entertain thoughts that she might not!

Wednesday, June 18, 2008


She's still in surgery. It's been 5 hours...... I just got an update, it could be another 1 to 1 1/2 hours.... The surgeon was able to reconstruct her Glenn, but she's still not oxygenating well. SO, they are still working on her. She's off the heart and lung bypass machine (thank heavens!), and Dr Hawkins has decided to put in an additional shunt to see if he can get more blood to her lungs. They still have the ECMO machine on standby, but they really don't want to put her on it unless it is absolutely necessary. The nurse told me that ECMO might help her through tonight, but might not be the best solution in the long run, so they are trying all other options first. It's still an option though. Poor baby!! I truly trust Dr Hawkins, he is such a perfectionist, I know he will do whatever is best for my Elaina. I will update again when I know more, probably by just adding on to the end of this post.

1:40 am
Elaina is doing well, she is stable and should be back in the ICU in about half an hour. I am still waiting for Dr Hawkins to come and talk to me, but I was able to get a final update from the surgical nurse. They ended up doing a shunt, I'm not sure what kind, and it has stabilized her for now. Hopefully it is a permanent good thing. As of right now, she is NOT on ECMO, but it is still ordered just in case. Yay! Anyway, I probably won't post again until late tomorrow morning, so I wanted to just give a little bit of additional information. Thank you all for the prayers, love and concern. I know that I say this often, but I truly mean it!

2:30 am final update
Dr Hawkins just came and spoke with me. He told me that he was able to successfully reconstruct the Glenn and patch her Pulmonary Artery. Once she was off the heart/lung machine he was able to get the pressure in her Glenn down from 25 to 15. At that point her sats were still no good, so he attempted to do an axillary fistula procedure, which routes blood to the pulmonary artery from a large vein in the armpit. He tried both sides, but neither were successful, so he opted at that point to put in a new Gortex (he gave me a piece!) shunt. He called it a Central Shunt and connects from her Aorta to her main Pulmonary Artery. He said that it was successful, she's warming up and her saturations are between 75 and 80, right where he'd like them to be. BUT, her lungs are still very sick. He's not sure if she is going to be able to survive this, only time will tell. He hopes that what he's done is enough to keep her strong so that her lungs can heal, but she is still in extremely critical condition. The next 72 hours are critical and will pretty much determine her outcome.
Please continue praying for her. She needs a miracle. I need a miracle..... this little one is a tough fighter but I truly do have faith (as hard as it is) that she can survive this with the prayers of others.
Thank you all again.

Emergency Update

This afternoon a new set of eyes looked upon Elaina. Dr Hawkins came in to close Elaina's chest. They do this at the bedside, so they asked me leave and wait in the waiting room. I was in there for about 45 minutes when the surgeon came to talk to me. He said that he wasn't going to close her chest. In fact, he didn't like how the Glenn looked and felt that it was "done wrong". So originally, he wanted to go to surgery in the morning. Well, Elaina had other plans. That's my turtle bug, she likes to do things in "her" time!!! As the afternoon progressed, her saturations dropped down into the 40's and 50's. So, we are currently in Emergency Surgery to re-do her Glenn. Because she had such a rough recovery last week, they have ordered ECMO for the operating room, and have prepared me for the worst. Thing is, if they did nothing then she wouldn't survive, at least this surgery will give her a fighting chance. So, pray, pray, pray that this surgery will be successful. This is a different surgeon than the last time, he has 32 years of Cardio-Thorasic surgery experience. He is the same surgeon that did her BT Shunt, when they told me that she only had a 10% chance of survival. I have faith that he will be able to save her. Anyway, any extra prayers at this point would be much appreciated.
Hollie and Elaina

Tuesday, June 17, 2008

Evening Update

What a day, what a day. The Cardiologist was able to turn the subclavian central line in the right direction during Cath this morning. What a relief. They were able to do a dye injection, and didn't see any type of blockage in her pulmonary artery. The blood flow isn't as strong as they'd like it to be, so they are going to hold off on closing her chest. They don't think that the PA is clogged or clotted, they just think it might take Elaina a little bit longer than most to recover from surgery. However, they did increase her Heparin (blood thinner) just in case there is a small blockage that they weren't able to detect. The cardiology team and the surgeon are toying with the idea of putting in a new shunt or re-routing blood supply, but at the moment I don't have any details, nor do I understand what those procedures would entail. So, for the time being, she just rests and gets stronger. Her CO2 levels are improving, although her saturations are still low. There are no plans to close her chest tomorrow, we'll just have to wait and see how her night goes. The nurses and Respiratory Therapists are still getting lots of junk out of her lungs, but they are starting to sound more and more clear when they are done. She's back up to 70% on the oxygen and 40 on the nitric oxide.
I'm praying that she will have good night, full of improvements and that we will have an even better day tomorrow. Thank you all so much for your continued love, prayers and support. We couldn't do it without you all!

(I still need to figure out how to download my camera to this laptop, so pictures will have to come at a later date.)

Post Op Day 5 : Morning News

Elaina had a rough night, so they are not planning on closing her chest today. She is still having a tough time getting the right amount of oxygen. Her levels should be going up, but they are going down. The doctors are going to send her to Cath Lab today to see if they can re-wire the subclavian central line that was put in the day before surgery. Then they are going to inject some dye into the line to see if they can figure out what is going on with her pulmonary arteries, why they aren't giving her adequate blood flow. What they do next is undetermined. They might try to balloon something open if it's critical, or they might send her back to surgery tomorrow to see if one of her pulmonary arteries can be re-constructed or maybe put in an additional shunt. So, here we go back on our scary roller coaster. She is such a fighter, she's trying so hard to win this battle. What a little Heart Hero!
I'll update more as I get more information.

Monday, June 16, 2008

Day 4 Bedtime Update

Elaina's day was so so. She had a couple of minor setbacks, nothing huge. Her saturations weren't the best today, and we ended up going back up to 75% on the ventilator tonight. She had a couple of small spells with her blood pressure this afternoon, but after a couple of minor adjustments she settled back into her baseline. The surgeon came and looked at her chest. He said that her heart looks GREAT! BUT, her lungs still look a little stiff. He could see part of her right lung, and when the ventilator gave her a breath it didn't move, so he feels that it is still pretty full of junk. They are taking her off the ventilator and manually "bagging" her when they suction. This gives them the ability to give her bigger breaths so that they can loosen the gunk that is still in her lungs. They are getting lots out each time they do this. The problem is that it really wears her out and sometimes her saturations drop when they are done because she is so pooped out. Poor kiddo! She also woke up a lot today. She would hear my voice and her eyes would pop open and she'd start to wiggle and squirm. You'd think this would be a good thing, but since her chest isn't closed yet, they don't really want her moving around too much. They tried increasing the dosage on her sedations, but she was still waking up, so tonight they re-introduced the paralytic. They really want her to stay still tonight and get more fluids off so that they can close her chest tomorrow without complications. The doctors and nurses told me to expect some setbacks when they do this, possibly even having to re-open her chest if she doesn't tolerate the pressure. So I'm kind of nervous, I have "pre-surgery gitters" again, even though this isn't as scary as the last time. If they don't think that she's ready in the morning they will postpone the procedure. They really don't want to rush her or put her into a dangerous spot.
Anyway, I lucked out again tonight with a sleeping room, so I got my huge stack of pancake thin hospital pillows and an extra blanket and I'm off to bed. I'll try to get some pictures on tomorrow. So cute, the nurses have taped a bow onto one of the monitors on Elaina's forehead.

Post Op Day 4

So far, so good today. Elaina's blood gases are looking better and her swollen face continues to go down. They are still doing deep suction in her lungs and are beginning to get more and more gunk out. This is good, the less gunk in her lungs the better! She's been able to go down to 60% oxygen so far on the ventilator. This is also good, she was at 85% yesterday. So, still the small baby (turtle) steps. The surgeon came by and looked at her chest today. He said that her heart looks great, but her lungs are still swollen. He may take another look later on to see how she's doing, and if he feels she's gotten rid of enough fluids he might close her chest tonight. Otherwise it will most likely happen tomorrow. We're not out of the woods yet, but I think I can see the clearing up ahead.
I think Elaina's new nickname is going to be "TurtleBug" :)

Sunday, June 15, 2008

Post Op Day 3 : Bedtime Update

Elaina's day was good, but uneventful. She wiggled a little bit, held my finger for a few minutes, and briefly opened her eyes. We are moving very slowly, but I think that it's for the best. So, no big changes, just lots and lots of loves. We got lots of visitors today. My Aunt Kathryn came, and then my Mom and Dad brought my Grandma to see Elaina. Then, after dinner my sister Liz and her husband John came to visit. As far as I know, no big changes are planned, just "slow and steady". We're gradually weaning her nitric oxide and the settings on her ventilator, her CO2 levels are still a problem, but she's being strong. I sure do love her lots!

Post Op Day 3 : 11am Update

Elaina looks so GOOD to me this morning!!! They turned off her paralytics and she got rid of a bunch of fluids last night, so I can see "her" poking through the remaining swelling, tubes and wires. She wiggled a little bit for me this morning when I put moisturizer on her lips and tongue. I think she's still too sedated and in too much pain to open her eyes, but that little wiggle meant the world to me! The nurse told me that they will probably wait until Tuesday to close her chest, because they want to get her of the nitric first and wean her down a little bit more on the ventilator, so that she doesn't have more problems once her chest is closed. They did warn me that she will have about 12 hours worth of setbacks when they do close her chest, so they want me to be prepared.
Keep the prayers coming, they are working a miracle in this little one's life. Thank you all so much!

Saturday, June 14, 2008

Post Op Day 2 : 9:30 pm

Elaina had another good day. It seemed like we spent the day chasing her CO2 levels and adjusting the ventilator, but she's down to 85% oxygen. She started out at 100% this morning. Her lungs still sound very wet, but her saturations are improving (ever so slightly) and her coloring looks better. They started her on a 2nd diuretic, so hopefully she'll finally be able to get rid of some of her excess fluids. Yesterday in a 24 hour period she was -120, and so far today she's -300! Much improved with the added medication. Her heart rate and blood pressure seem to fluxuiate when she needs a little extra fluid, so she is getting some small fluid boluses from time to time, but in all she is making some small improvements. It looks like they may close her chest either Monday or Tuesday depending on how quickly she loses the excess water.

My Dad told me that now that they've done this surgery, Elaina has the same type of heart that turtles do. Turtles have a 3 chamber heart, and now that Elaina has had a septostomy, so does she. I can't help but think about the story of the Tortise and the Hair. That turtle was SO slow, but yet was victorious. My mind keeps hearing the phrase, "Slow and Steady Wins the Race". I keep praying that Elaina will have the perserverance of a turtle, and that she will win this tough battle. She's fighting so hard that I just want to shout out "GO ELAINA, GO!!! You can do it BabyDoll!!!"

Thank you all again for your words of encouragement, your kind thoughts and prayers. I know that the Lord does perform miracles in our lives and that the power of prayer is astounding.

Post Op Day 2 : 10am

Elaina had a pretty good night. When they took her blood gas at 6am, her CO2 levels were elevated. They checked them again at 7am, and they were still high. At 8am, the nurse came and woke me up in the sleeping room. They decided that Elaina was no longer tolerating the oscillator, so they were going to switch her to the conventional ventilator. They made the switch at 9am. Everything went smoothly. They took another blood gas at 9:30 and her CO2 levels were starting to go down, and her oxygenation was actually higher than it had been most of the day yesterday. The doctors and nurses are hopeful that this is going to be a good change for her today. The nurse said that her lungs still sound very sick, that it sounds like 2 rubber balloons rubbing together. They are going to try some medication to loosen the "gunk" in the lower part of her lungs to see if they can suction it out. When they did her chest x-ray this morning, it still looked like part of her right lung is collapsed, but they are keeping her on the nitric oxdide for now and hope that this will reverse itself. They are also going to start some IV nutrition today. They are going to put her on what's called TPN and lipids. This basically means that her body will be getting calories, vitamins, minerals, and fats so that she can continue to grow and get stronger. She's still pretty swollen, they want to get some of the fluids out of her before they close her chest. They are hoping to do that on Monday.

Ben got to go camping with Uncle Don last night, and had a blast. He played with friends and pigged out on so much junk food that he got himself sick, and they ended up coming home at 2am with a puking boy. Poor kiddo! Hopefully he'll feel better today, Orem is having a carnival today followed by fireworks tonight. He's a real trooper, so I'm sure he'll bounce back just fine.

Well, that's all the news for now. I will try to update again this evening, or if there are any major developments. Thanks again for all the love, prayers, and support. I know that we wouldn't be this strong without it.

Friday, June 13, 2008

Post Op Day 1: 5:00pm

This is Valerie again with a brief "update"--we've been getting calls complaining about not updating again today, so in response I would like to report that things are about the same as this morning. Elaina is still on the oscillator, but her stats are looking good for where she's at. The doctors told us that they still just want to watch her and let her rest, so we may be playing this same tune for awhile--watch and wait. It's hard to see her like this, but at least she is making little improvements.

Tonight we're excited to have Auntie Liz come visit, and it's been very nice to have Elaina's Grandma and Grandpa Hilton here this afternoon--a lot more rested than they were yesterday!

The nurses just changed Elaina's bedding--even under the paralytics and sedation, she still gets mad when she's moved or suctioned! But now she has a nice pink blanket to lay on, and it makes her whole room glow a little. She's hanging in there!

Post Op Day 1 AM

Elaina's night was okay. I managed to get a little sleep, but only due to pure exhaustion. I am so grateful for the parent sleeping rooms next to the PICU. It was at least comforting to know that the nurse could come get me if there were any problems.
Right now Elaina is stable. She's still on the oscillator and nitrous oxide for her lungs, but the doctors think that she doing better than expected. We just spoke with the doctors and the plan for her is to just let her "hang out" for the next 12 - 24 hours. They want to give her body some much needed rest. They are keeping her on a paralytic and sedated with Fentanyl and Versed. Her color looks better than last night, but she's still very swollen. One of the docs told me that she was on the heart/lung bypass for 220 minutes. This means that it's that much more difficult for her heart and lungs to readjust. There is some fluid in her lungs, but they are suctioning as much as they feel is safe. She isn't draining much from the chest tubes, but her nurse thinks that this is because of the oscillator. They want to get her to a regular ventilator soon, and then extubated, because kiddos with a Glenn don't do as well on a vent. So basically, she's not out of the woods, but she's not declining. They still have the blood ordered for the ECMO, but it is looking less likely that she will need to be on it. They told me that she could still crash, but she has held her own for the last 5 hours so they are feeling very optimistic.

I am SO grateful for my parents. When they heard on Wednesday that Elaina's surgery was going to be on Thursday, my Dad cancelled his classes and they packed up and drove 12 hours to be here. After driving all night, they stayed at my side all day until Elaina was settled back in the PICU. My cousin Valerie also stayed with me until midnight. Elaina's dad, Mike, was also able to come from Price to be here for the surgery. My Dad and my Uncle Don (my mom's brother) were able to give Elaina a priesthood blessing before surgery. I truly have faith that she will overcome this huge obstacle. She is such a strong spirit, and doesn't know how to give up.

Thank you all for your prayers and concern. I know that it helps to have the prayers of many. I think that I may assign Valerie to be my "keeper of the blog" when she gets here later today. Since they just want her to "hang out" for the next 12-24, I'm not sure that I'll have much more to update, but we just might post to say that she's still stable. Thanks again for all the love and support.

Thursday, June 12, 2008

Surgery Day

What a long day. Elaina was taken in for surgery at 11:30. They opened her chest at 12:30. The nurse called me a few times through the beginning of the procedure. At 3:00 everything was going well, they were warming her up to get ready to take her off the lung/heart bypass machine. She told me she'd call in an hour. At 4:00, they were cooling her back down, because the doctor didn't like the way the vein was seated on the artery and wanted to re-attach it. At 5:00, the nurse came and sat down with me. Elaina's heart is beating well, the Glenn was a success, BUT her lungs are so weak from a month of being in the hospital, that she's having a very hard time getting her oxygen needs met. So, they are giving her nitrous oxide with an oscillator to attempt to open up her airways. Elaina got back to the ICU at 6:30, and the surgeon came and talked to us a few minutes later. SO, the news is not very good. The surgery was a success from the heart standpoint. Her lungs are a different story. The pressures are very high in her lungs and she is having a very difficult time with her saturations. The surgeon left her chest open for 2 reasons. They may have to go in and put in an additional shunt to get more blood flowing to her lungs. They also have the ECMO machine (this is a portable heart and lung machine that they can have in the ICU) on standby. She is going to have a VERY difficult night. It is really touch and go at this point. I do not know what is going to happen or what her prognosis right now.
Please keep praying for her. She is very weak and very sick.
Thank you so much.

Wednesday, June 11, 2008

A not-so-fun day, but we're okay

This is Valerie, posting for Hollie. It's about 10:00pm on Wednesday, we're sitting with Elaina in her tiny little space in the wall that we're calling her room. We stole some chairs from other rooms and dragged them into our corner where we try to stay out of the nurses' way as they tend Elaina in a HUGE crib--this morning she had one that was way, way too small, so they switched it out, but now she is in this monstrosity of a crib--we have to stand on two stacked footstools to even reach her. It makes things adventurous, but the nurse says they'll need this big crib tomorrow.

This morning, we got told that Elaina might be going back in for a second heart cath, because the hole they ballooned last week had closed again; they were also talking about doing emergency surgery TODAY. Thankfully the doctors and surgeons listened to prayers and to Elaina; they decided against the heart cath and moved her surgery to tomorrow morning/afternoon. Elaina will be having a Bidirectional Glenn tomorrow; we're told the procedure will take "about four hours" but it may take longer for Elaina, based on all the problems they've had before establishing lines. She's the second case tomorrow, which means they'll be coming for her around 11:00am.

Fortunately for the moment Elaina is stable; she's still intubated, and she's been put on a constant drip of pain killer and sedative to keep her calm. Her stats are a lot better and more consistent than they have been all day. Although, she does not like being bothered right now--any time anybody touches her, moves her blanket, or really even comes near her, her monitors start beeping. So we're hoping that she can just get a good night's rest before the big day.

Elaina's Grandma and Grandpa Hilton are driving out tonight; they were waiting for a bed to be delivered before they could leave--isn't it strange how these things work out? Anyway, so they're making the long haul to Salt Lake from Kearney, Nebraska--a twelve hour drive all in one night! But we're all very glad that they're coming, as I'm sure they are too--Elaina's grandpa wasn't very happy he couldn't be with his bug last time, so he's making sure he's here this time around, canceling his classes and everything.

On a Ben note; talking with Aunt Kathy tonight she told us what Ben's high was tonight. Ben loved this new tradition and took with him to Aunt Kathy's and Uncle Don's--everybody goes around the table at dinnertime and says their high for the day and their low for the day. Today Ben said that his high was that Mom got to be with Elaina today. What a wonderful, understanding big brother!

AM Update

I got a wake up call this morning from the hospital. Elaina was really struggling to breathe last night, and so to protect her airway she was intubated this morning and put on a ventilator. At this point they are unsure why this sudden change occurred, but they didn't want to take any chances that she would stop breathing all together. They didn't have much more information for me, they are still running tests and said that they would have more news later. I am jumping in the shower and heading up to the hospital to be with my sweetie pie. Please, please, please keep her in your prayers.
Thank you!

Tuesday, June 10, 2008

The Inevitable...

I didn't want it to happen. We tried our best to prevent it, but today Elaina was moved to the PICU. The main reason she's there is so that they can have her on a high flow nasal canula. All her other issues are the same as when she was on the floor, but Respiratory Therapy finally got their way. They really hated having her on the blender and "cheating" the system. I think that deep down, I knew it was inevitable. In all actuality, as I drove home tonight it was kind of nice to know that she had the 24/7 supervision of a NICU nurse. It probably helped ease my mind that one of my all time favorite NICU nurses, Stacey, is Elaina's nurse tonight. Stacey was on for a week straight during Elaina's last NICU stay, and was the most verbal about her seizures when they started. She "encouraged" the resident to listen to Mom (and her!) and order the EEG that confirmed her seizures. Needless to say, I left Elaina in good hands tonight! She had a fever again today, so still no word on a surgery date. Stacey told me that she has to be 48 hours without an elevated temperature before they'll put her on the surgery schedule, so we'll just wait. It's not like I can do anything to speed up the process. I have faith that everything happens in the Lord's time. I just keep praying that Elaina will get stronger each day as she nears her surgery. Thanks again to everyone that keeps her in their prayers.

Here are some pictures of her in her new digs, gotta love the PICU!!!!

All wrapped up after numerous failed attempts to put in an IV.

"Mom, please give me back my pacifier! I'm NOT going to smile."

Monday, June 09, 2008

Small update and new pics

Here are a few pictures from the weekend. Sorry I didn't post them sooner. I think I'm running on empty these days!

Getting some final snuggles in before Cath Lab.

I swear it looks like she's waving good-bye!
This was taken in the Cath Lab as I was getting ready to leave her.

Her leg when she got back from the PACU.

Her leg on Sunday, 2 days after
the Cath Lab

I still don't really know what the plan for Elaina is. She's had a fever since Sunday, so today her Cardiologist had her IJ line pulled and revised a few of her medications. He said that due to her fever, she isn't a surgery candidate at the moment, and luckily we have a little bit of leeway when it comes to planning the time. He said that he would have the surgery date for me tomorrow, but to think 2 to 4 weeks unless her condition gets worse. He told me that he's hoping to get her stable enough to maybe go home for a little while before surgery, but if we can't get her oxygen need under control she'll just stay put until they can "fix her up". I know that the Cardiologists and Surgeons have Conference on Wednesday and they discuss all the pending cases then so hopefully we'll find out a surgery date Tuesday and then surgery details on Wednesday. Basically, this is to be continued.....

Once again, I need to close with a cute picture of Ben. He was able to go to the Zoo with my Aunt and Uncle on Friday. Unfortunately, I wasn't able to go with him since the Cath Lab took so long. :(
Anyway, he had a BLAST and came back with the coolest face paint. I just had to share:

Friday, June 06, 2008

Heart Cath Lab

I am so glad that this day is almost over. It was exhausting. I have to say that I would not have survived intact if it had not been for my dear cousin Valerie. She came with me to hold my hand, and was an enormous support for me. Elaina was taken to the Cath Lab at 1:50 this afternoon. They told me that I could wait in her room and that they would be able to call me with updates, but to expect the procedure to last about 3 hours. I got a call from one of the lab nurses at 3:50. She said that Elaina was stable, but that they were having a very difficult time getting the catheter in. They thought that she must have some clots from the last catheter proceedure and had compensated by growing some "collateral arteries". The nurse said to expect the procedure to last longer than anticipated, but she did not know how long it would take. Needless to say, this made my anticipation MUCH worse than it had been already. I got another call shortly after 6:00 to let me know that they were finished. Elaina was on her way to recovery and then would be headed back to her room.

So, here's what they found:
There is very limited blood return in her right ventricle. They expected this. The blood return in her left ventricle looks good. It does look like she has outgrown her BT Shunt. It is still working at the moment, but she is at a much higher risk for clotting or failure. They put a balloon catheter in to see if they could enlarge the opening between her chambers, but were not as successful as they had hoped. The blood flow was increased from the echo on Thursday, but the hole is still smaller than they would like it to be. At this point, surgery is going to be next week. The cardiologists are meeting with her surgeon to discuss the best plan of action. From what I understand, there are 2 different repairs that they could do. I don't fully understand both of them at the moment, so I will wait to post it until I do and that way I can be sure I'm getting all the details right. Hopefully I will know by tomorrow.

Elaina got back from recovery at about 7:30. Her right leg was extremely dusky, but did have a pulse in the ankle. Her blood return was slow, but it was there. I took some pictures, but I'll have to wait until I get home to post them. She lost a bit of blood during the catheterization, so she is getting a small transfusion. They left the IJ in her neck and said that they would move it when she goes for surgery. She's still pretty knocked out from the sedations and anesthesia, but has cried for her pacifier a couple of times. Oh, my sweet, sweet baby......

I am holding up, but I know that it is due to the prayers of others. There is no way to Thank You all enough. I will post tomorrow when I hear back from the cardiologists and surgeon.

Thursday, June 05, 2008

Making Headway

The other day Elaina had 2 IV's in her scalp, so her nurses decided to dress her up! They found this cute little pink hat. She didn't like it very much, as she's not fond of having things on her head. She kept moving her head from side to side trying to dislodge it, but at least she cooperated long enough for this picture!

The IV's in her scalp didn't last long and putting in a picc line hadn't worked. So on Wednesday they put in an IJ (Intra-Jugular). As you can see, she wasn't too happy about it.
She wasn't the only one that wasn't happy. About an hour after the IJ was in, Cardiology came screaming. This is the area that they needed to have untouched for her Glenn. If she were to get a clot or something damaged the vein.... well, we don't even want to go there. The reason they are doing a Glenn and not another type of repair is due to the fact that she has some very challenging anatomy. She has some enlarged cardiac arteries that they are calling "fistulas". The surgeons are worried that if they diminish or cut off the blood supply to the fistulas, her heart will stop. So, to play it safe they are going to do the Glenn. At least this is the current plan.


We had so much fun dressing her up the other day that I brought some of her dresses from home. With so much time spent in the hospital, she is going to outgrow them before she gets to wear them, so I figured she can be the best dressed patient in the hospital!

Cardiology was so worried about the IJ placement on Wednesday that they scheduled her sedated echo cardiogram for today. They were concerned enough with the results of the echo that Elaina has been scheduled for a visit to the Cath lab on Friday. They are going to do 2 things. First they are going to do a dye injection to see just exactly how her heart is pumping the blood in and out. Second they are going to try inserting a balloon to increase the size of one of the openings in her heart. According to the echo, the size is currently restricting the blood flow enough that she is unable to fully profuse her body. This could be the reason behind her increased oxygen need and low saturations. Based on the results of the cath, she could be in surgery as early as next week. Wow. I'm a little bit overwhelmed by this dramatic change. The cardiologist that reviewed her echo said that there were enough differences from last weeks unsedated echo to warrant a trip to the Cath lab at this point. I am super scared and nervous for this to happen. At the same time, there is a little bit of relief that we are finally making headway. Her fevers are still a concern, and I'm still waiting for the results of her immunology panel. I'm exhausted and still have lots to do tonight to get ready for my weekend, I'll be staying at the hospital with Elaina once again. Prayer is powerful, please pray for Elaina. She is a fighter and I have faith that she will be able to get through this!

Before I end though, I just have to show you how my 5 year old eats watermelon. He was already filthy from playing in the backyard, so he got dunked in the tub when he was done!!!

He's good for a laugh!!!

Tuesday, June 03, 2008

Getting Nowhere Fast

We're still at the hospital, with no end in sight. Some days I just feel like I should move in! Elaina is still having the same struggles. She still has an increased oxygen need, but her chest x-rays are clear. She was up to a 3 liter flow today with a 65% oxygen blend. The Respiratory Therapists are still telling the doctors that she should be in the PICU on either a high flow nasal cannula or c-pap. They are deep suctioning her nose, but are getting less and less as the days progress. This is good, but she is still spiking fevers and none of the blood cultures are growing anything to tell us why. She is on her 3rd IV in her scalp as of today. They aren't able to get one in her anywhere else. They also tried again today to put a picc line in. This time they tried her leg behind her knee, but were once again unsuccessful. It's looking more and more like the only option left is going to be some kind of surgical arterial line. If this happens she will for sure end up in the PICU, because that is the only place the hospital allows patients to be cared for with this type of line. I talked with an infectious disease doctor today and she is concerned that Elaina might have a rare form of pneumonia. She ordered a blood test to check Elaina's t-cell count to see exactly how immune deficient she is with her DiGeorge at the moment. So we wait to see what the doctors will have to say on Wednesday. She was looking VERY puffy and swollen to me today, she weighs 11lbs 4oz, but it really seems like she gained it quickly, so I think it might be some water weight. Her doctor told me today that she was fluid positive, but the Cardiologist didn't want her to have more lasix. But she was looking worse as the day progressed and they finally ordered lasix anyway. Her nurse tonight told me that after I left she completely soaked through her diaper, so lasix was probably a good choice for today. She seems to have lost her grin, but is smiling with her eyes. She is so cuddly and full of love. She still enjoys getting kisses and seems to do her best when Mom is there holding her!

Ben and I went on a date tonight. After I picked him up from my Aunt's house I surprised him with movie tickets to Horton Hears a Who. This is one of his favorite bed time stories, and since it was playing at the $1 show, I decided that we needed a fun night out. He was very good in the movie and munched down a TON of popcorn. He's starting to understand a little more "grown up" humor, and seemed to laugh at all the right spots. Part of it may have been that I was laughing and he just wanted to join in, but it sure was a fun night out. I've been spending so much time at the hospital with Elaina that he really has been feeling neglected lately. It seems like I wake up , work at the computer for a few hours in the morning, and then get him to Kathryn's (my Aunt that watches him practically every day!) so that I can do my hour long drive to the hospital and spend time with Elaina. I stay until rush hour has calmed down and then make the hour drive home. Most nights I'm not getting back home with him in tow until bed time. After he's all tucked in I have to work for a little longer at the computer before I can get to bed. Then it starts all over again the next day. One of these days I'm going to have to squeeze some housework and laundry into the mix! I've also been spending the weekends at the hospital with Elaina, giving poor Ben even less Mom time. I would really like to spend more time with him during this stressful part of our lives. I was able to get some free Zoo passes from the Hospital for Friday night. There is a big event planned for families with disabled children or children in the hospital. There is going to be free dinner, face painting, and a couple animal shows. Fun, fun, fun! It should be a great way to spend some time with him before I have to spend some time without him!