Sunday, August 30, 2009

Home Sweet Home
While it's had some challenges, being home has been wonderful for all of us. Mya is making small improvements daily; she's sitting like a champ now, working on getting her crawling strength back and has tried to pull herself up to the couch a few times (assisted, of course). Her voice is even coming back very, very slightly. She's even doing a few things that she didn't previously; identifying her eyes, stacking her tower of rings when previously she'd only take them apart, and putting balls into a toy rather than just watching us play with them. We are enjoying every minute she's awake. She's only sleeping 4-6 hours during the day now, when a week ago she was only awake 4 hours. Such a wonderful change. Her sweet little personality is clearly back to "normal."
A few of the stressful times we've encountered:
Last night I was cooking dinner and it was time for Mya's feeding and medicine. Rob noticed that her feeding tube was dislodged. We decided we had to put in a new one. This is nothing short of a very stressful process. Rob tried to keep her pinned down (not easy I might add) while I threaded the tube down her nose to her throat. We were worried that it wasn't in the right spot; we had to do the "tests" several times to make sure it was in her little stomach. Needless to say, I got more and more stressed out about it as we kept getting negative results to verify its location. Time was ticking and she was freaking out. Another deep breath needed. Finally we were able to relax enough to get everything done appropriately. In the mean time, dinner was on the stove burning. Soon after that we decided that she hadn't had a BM in a few days, so it was time. Enter suppository. Yes, Rob allowed me to do the dirty work on this one. This stuff wasn't in the pregnancy manual I read... no one told me I'd have to do this as a parent! However, we are so thrilled to be where we are, I'll do whatever it takes to get this little one to the place she needs to be. Just don't call me when your kid needs a suppository. I hang up the nursing hat when she's better.
Look! A curl! Her hair grew a lot during the past month!

Thursday, August 27, 2009

We're Home!
After a long day of learning how to take care of our child, and waiting 3 extra hours for her prescriptions, we finally made it home last night. I have to say it was pretty overwhelming to get home, unpack the necessary things and to get all of her food pump stuff and medications organized. Once we made a list of what meds & food need to be given when, it's made it much easier to deal with! Otherwise, everything else has gone really well. Mya threw up twice last night, she's been doing it almost every time she wakes up from a deep sleep. She has so much mucus in her throat, she starts coughing really deep, causing her to throw up. Needless to say, that's the only negative right now (plus the formula she's on REALLY stinks). I'm really looking forward to her first bath tonight, we have to wait to have Rob's hands too, since I don't trust her strength of sitting alone right now. She has had a really good day, we've also weaned another step down on her meds, and no visible signs of withdrawal. Thank God. She's been awake a lot today, playing with birthday toys, books and gifts people have sent our direction. They've been awesome! It's so fun to see a normal little Mya. She even scowled at Rob today! It was great! She's been able to sit for a much longer time today on her own, and she tried a couple of times to crawl, but has learned her body doesn't want to work very well yet. We were also able to bring home a foam wedge that she can have in her crib and on the living room floor for nap time. It's working out really well. I'm not sure how easy this feeding tube will be to keep in her nose once she realizes how to take it out. I'm pretty sure the day is coming soon! We have an appointment next Thursday for a swallow test for Mya, back at Children's. This is the next thing we're praying for. They're going to give her a drink of her normal formula, but will put some dye in it and will track how it's being taken in. This is a benchmark time, because if she's not able to swallow thin liquids (which will be the most difficult for her, viscous liquids will be easier), then she'll have to stay on the feeding tube possibly a month or two longer. That would be a big bummer, as I'm pretty sure the daycare wouldn't be willing to manage such a difficult schedule. So, it could require a shift in lifestyle for a while longer. However, I'm praying that we don't have to make any different choices!

Here is Mya's personal pharmacy...

Surprisingly, my flowers are looking great! We've had cool enough weather that we came home to somewhat of a nice looking yard! My first harvest of my DELICIOUS cherry tomatoes! I sure wish Mya could enjoy them with me! Hopefully she'll be able to next week!

Chillin on the living room floor, listening to her CD from Aunt Michelle video

Tuesday, August 25, 2009

I posted some incorrect information on 8/20 that I wanted to clarify. Mya's temporary vocal cord paralysis isn't affecting her ability to swallow. I misunderstood the information originally. I guess your vocal cords are lower than where you swallow, so the two things are not connected. She just needs healing time on her throat to be able to swallow.
Note to self: Surgeons aren't the most gentile with care.

Usually after surgery they wait 2 weeks to take stitches out. Mya's incision has healed so nicely, we've been a little concerned that they haven't taken them out yet, since it seems to have healed over. It's been only 10 days so they haven't wanted to take them out. Originally she had dissolving stitches in her incision and they use a glue to close the skin. Unfortunately, since they had to open her 3x, a slight infection was forming so they had to use external stitches with her third closure. A new surgeon "fellow" (surgeon in training) did the stitches, and the pattern was not the "norm," so our nurse had her come help take them out today. Keep in mind, patients are knocked out when in surgery, and I'm pretty sure gentile isn't a word used in the operating room. Mya about went through the roof when she started to take them out, it obviously caused her a LOT of pain. Even though she doesn't have all of her sounds, it was very clear that it hurt. Poor kid is bleeding from 4 different areas because they were so buried, not to mention it got blood all over her little shirt and blanket. LAME! She didn't have much sympathy for little Mya as she yanked them out (I was cringing all over) However, she did say, "remind me not to do this type of stitch again!"

Deep breath...

Thank God that they usually work on kids under anesthesia!

The nurse just came in and said we are no longer in isolation, her tests came back negative. Rock on! At least we got a single room out of the deal & now we have a much higher chance of going home tomorrow. Hooray! Isolation was more work for the nursing staff than for us, they had to put masks & gowns on prior to coming into the room so they wouldn't spread her possible infection to other patients if she had one. Crazy. Going home seems a fairy tale right now, a dream that may just come true, we'll see!

A Much better day!
Finally I got a few advocates for our opinion on Mya's pain meds... we now have a plan to wean her off of the high dosages that Rob & I agree with. The original plan was going to take a really long time (literally 3+ months) and had some adjustment times that gave her really high dosages mid way through that we thought would only make her crash. It took several conversations and a lot of different people, but we are finally all in agreement with the plan going forward. In the mean time, the reduction to 10 from 12 of her dosages have been a really positive step. She's been more "with it" when she has been awake, and she's been up longer. I wrote my blog posting yesterday at a very frustrated state, but she woke up that evening and was a very normal little Mya. She's sitting on her own finally and was trying to pull her self up in her crib yesterday. So great to see. Another reason we've been kept here longer is because of her junky sounding breathing. She has a lot of mucus stuck in her throat, and it's an area that could contract an infection. Usually she could cough it up, but since she's been on these meds, they seem to be acting as a cough suppressant, keeping it all in her chest. The bad part is that she may have an infection- she coughed up a lot of junk yesterday and was a color that they were concerned with. While I don't think it's anything to worry about, they put us in isolation. HOORAY!!! We now have our own room! I haven't slept better (while in the hospital) in over a week!

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My brother Mark joined us for dinner last night, we went to our new favorite calzone place here in the U-district. Delicious food... and outside of the hospital! He's flying back to Saipan this morning to teach another year of school. It was nice to see him prior to being gone for so long! We're going to miss him (and his wife, Brittany who is already there), but Brittany he got to the airport on time today! He should be on his way! Thank you for your comments on my bummer day yesterday- we are so thrilled to be this far in her recovery. The original pain plan made the road seem much longer than the new plan so I've got a lot more hope to be back to normal soon! Today marks week 3 in our journey, 3rd week's a charm???

Monday, August 24, 2009

Will we ever get out of here???
So they've changed our discharge date to probably Wednesday at this point. The one thing holding us back is the level of her pain medication. Funny part is that she doesn't need if for pain anymore, just needs it to wean. If it would have been a "normal" surgery, she'd only be taking Tylenol right now. However, she's currently sleeping 20 hours a day, due to her really high dosage of Morphine and Ativan. I worked a good portion of the weekend to persuade the "pain team" to lower her dosage so she'd have more awake time. Unfortunately for us, it sort of backfired as they decreased one and somehow ended up staggering the timing of the other- which has elongated her sleeping time today. They took her down from 12mg/6hours to 10mg/6 hours yesterday, which for anyone who understands is a super high quantity for a little peanut. While lowering the volume is a move in the right direction, it's currently 2:00pm, she's sleeping, and it's time for another dose of Morphine. Ugh. It's going to be a long road, possibly 2-3 months to be done with these nasty drugs. I just can't wait for the normal Mya to return.

Saturday, August 22, 2009

Play Time

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Rob was so great to spell me off last night, I went home and got to enjoy 11 straight hours of sleep without any disruptions... wonderful. I ran a few errands and picked up a puzzle for Mya, it seems to be a hit! She also got a birthday gift in the mail that we've been waiting to let her open, Thanks to Benjy & Erin, it was a fun little thing to do today, she likes her funny little shaking pig!

Today we have to change her tube, just to get practice. Big yuck. The only good part is that we can put her medicine down the tube, so we don't have to fight her to get it in her mouth. However, if it means getting out of here, we'll do it!

Friday, August 21, 2009

Yesterday was a big day for Mya. She had a lot of tests of her little ears, nose and throat. They found that her right vocal chord has a temporary paralysis, caused by ECMO & the breathing tube, thus the reason for no voice. This could last up to a month, but it's hard to say when they'll repair. Your vocal cords help direct your food and air to the right spots in your body. Since Mya's aren't working quite right, eating & drinking isn't safe since the food could end up in her lungs instead of her stomach. Until they get a little better, she has to have a feeding tube back in her nose to get some nourishment. We have to learn to put it in, since we'll be taking her home with the tube in and it could come out easily on our clock. Definitely an unfun (even if I'm making up the word) thing to learn. Reason number 1,001 I'm not a nurse! She's also on some pretty high dosages of medication, so we have a long way to go with getting her back to "normal." We will probably be discharged on Monday, but will come back for a swallow test a week later. This test includes some dye that she'll swallow and they'll track where it lands. Until then we hope that her vocal chords start to get better so she start to eat again. She will have to start all over with rice cereal, baby food and then onto solids. Additionally, she's not able to hold her head up or sit, so we'll have to work on that again as well. I'm sure it'll come back fairly quickly, it's just a slow go of everything. Until then we get to continue snuggling our little one and she is still her sweet little personality, who loves snuggling with her new little friends! Thank you to those of you who have given her little cuddly critters!
Today we got to change rooms. We had a little 2 year old roommate last night who cried all night long... keeping all of us up. It's not as big of a deal when it's your kid, but it was pretty hard to watch Mya wake up due to his pain. Luckily they moved us this morning, Mya hasn't woke up yet! Luckily I got a nap in too. Our new little roommate is 3 weeks old, her name is Zoe. Please pray for her, she's awaiting both a heart and liver transplant, but has already had a heart surgery. I met her Mom & twin sister today as well- they've got a lot going in their family.

Thursday, August 20, 2009

Mya is still not able to speak from having the tube down her throat. I it could take up to 2 weeks to get back to normal, assuming no permanent damage has been done. She was doing pretty well eating until last night, and now she doesn't want to have anything down her throat. We think she has a really sore throat from the tube. They're coming soon to watch her swallow and possibly put a camera down her throat to see how things look. Unfortunately for Mya, she may have to have a feeding tube down her nose again if she doesn't start to consume on her own. They want to give her a diarrhetic to get some fluid out of her lungs from today's Xray, but can't give her that medicine if she's not taking in any liquids. However, with all of this, they're still planning on kicking us out this weekend. I can't wait to go home! Between monitor alarms, baby roommates who cry all night long and hospital food, we're all ready for a good night rest in our own beds. We bought Mya her first doll, she loves it! I've never noticed her hugging anything previously, but she naturally grabs the doll and holds it tight! Of course she has matching hair, they're pretty sweet together.

Wednesday, August 19, 2009

Whew!
We have had a long 24 hours. After Mya's cath test, her medications were decreased. While this usually an okay thing, it was probably too aggressive for Mya bug. She was awake for 11 hours straight yesterday, dealing with withdrawals from her medication (in a normal day she isn't up for more than 3-4). While she was seemingly happy the whole time, playing and wiggling like a 1 year old, she couldn't relax to sleep and was kicking and "playing" the whole time. She got a fever and began to sweat a lot too... poor kid is really going through an addictive withdrawal! It was a lot of work for me- not that I don't love to play with her, but for 6 hours straight trying to find activities to do in a hospital bed without pulling out all of her cords & wires was actually really challenging and exhausting. Included in that she had most of the yucky stuff taken out of her, including the drainage tube (which is really painful) & blood lines (kind of an IV that they can take blood samples from). It took several hours to "prep" her to leave the ICU, including 3 different people trying to get a IV into her little arms and about 7-8 pokes in the mean time. She was such a trooper. Once we moved to the "main floor" I learned quickly that there is a definite difference in amount of time with a nurse/care. I'm lucky I got the "training" from the nurses in ICU, they taught me a lot! They've gone back up on her meds right now, and will be weaning them a lot slower from here on. So, luckily that has been ironed out and she slept thru the night. The wonderful part is that we can hold her now when we want to- so great. Mya enjoys it too. I've been feeding Mya every 2 hours from a bottle, and I tried to do some applesauce with her today sitting in a high chair. She got pretty tired sitting up for so long, her head got really heavy, but it was good for her to try! They're trying to kick us out of the hospital by the weekend, I'm really looking forward to being home. We'll still have some major pain medication to get off of, but we luckily don't need to be off of it completely prior to going home. It could be a 2-3 week process. Now, time for a nap for me!

Tuesday, August 18, 2009

We're getting kicked out of ICU!
The past 24 hours have been monumental for us! Mya got her chest tube out, the pacemaker wires (standard procedure to add post surgery), her blood lines and is essentially disconnected from all the tubes; with the exception of one IV line that they're going to add. I will even get to hold her again today. So wonderful. We are going to be sent to the main floor this afternoon! She's been wired since 2:00am and hasn't taken a minute to relax. They were weaning her from her medication, possibly a bit too fast, and she's wearing out our nurses and I'm just getting the 1st chance in 4.5 hours to sit back down. She's playing like a champ and keeping us super busy. I have a feeling this will be my last posting for awhile. She's going to start to suck more of my time- I love it!

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Monday, August 17, 2009

LIFE IS GOOD!
After a lot of frustration and crying (her throat is probably pretty sore) we finally landed on the calming item... none other than her trusty pacifier. This may be the best day ever for Mya! I've never been more excited to give it to her. Sure, we could have taken this time to wean her from the thing, but this little stinker deseved every minute of enjoyment tonight!
Mya's Surgery Was A Success!
The news we've been so anxious to hear has been confirmed. Mya's surgery worked! We are so amazed by the results; genuinely a situation that will be written about in medical journals! The other wonderful news is that they took her off the ventilator too after her heart catheritization test, so the breathing tube is out after 13 days!!! I'm thrilled if you can't tell, it's such a blessing. They haven't taken out her chest drainage tube, but I assume it'll come out in the next day or so. She is breathing really heavily right now and pretty froggy, due to the junk in her lungs. She'll gain strength soon (possible by tomorrow) to be able to cough it out again, she's just been unable to do it herself for the past 2 weeks. She has also been hanging out for the past two days with her legs in the air. Since they went through her thigh area for her procedure, she has to keep it lowered for 4 hours, so they've restrained her little leg. It's definitely cramping her yoga pose style.
Everyone is amazed by her recovery. We just had a nurse call her a miracle baby. Our surgeon was even pressing the heart cath team for outcome information; as he was very interested in her status. We've had many nurses in our room checking on her and giving their congratulations! What a wonderful story for all of us to share, about our amazing little angel.
Rob is headed back to work tomorrow; hard for him to leave his little girl in the hospital, but real life is awaiting our return.
Mya hasn't gone to her cath lab test, possibly in the next 30 mins.
Monday, Monday

This morning Mya had a great xray. She has one every day around 4:00am that they wheel into our room. Her lungs are beginning to clear up a lot. Great news. It also seemed that the left side of her heart looked smaller too; it'll be confirmed today with her test at around 1:00pm. That would be the best news since that was the entire objective of our surgeries.

As for getting out of here, several people have been asking an approximate timeline at this point. We asked our ICU doctor and he thinks that we could be out of ICU possibly by Friday and then out of the main floor a week after. She is on really high levels of medication that she'll have to be weaned from, slowly. Additionally she hasn't been eating much at all. She'll have to be eating solid foods again; baby steps. She hasn't even been able to speak at this point! We need that tube out first! Please pray for her test and that everything would be as expected- for once in our experience!

Sunday, August 16, 2009

A Time of Healing
Mya has had a great 24 hours. The nurses have finally got her to a good level of comfort with her cocktail of meds. She's been having a fever off and on for a couple of days, but othewise, her "stats" look really good. Today she's suprisingly more alert and awake than we expected- possibly because she's gaining more of a tolorance to the drugs she's on, which will be harder to come off of due to the duration of our stay. However, she's so sweet in her silent way, raising her legs in the air, kicking her feet and looking around, she seems to be pretty content. Here is a picture of her new incision (with the yucky drainage tube still in). This time they had to put stitches on the outside because she had a slight infection in the original incision. Not as pretty for sure, but we'll take it for a healthy heart! Tomorrow is the day of our heart cath test, a pivotal decision day. We're praying that the surgery did everything that it was intended to do, and they'll be watching the blood flow through her heart. We pray that everything goes as expected (although with Mya's history here, we should learn not to expect the normal outcome!) so she can get the breathing and chest tubes out. Our friend Noelle was moved out of ICU today to the "main floor," we're so thankful for that! It's a real blessing for kids to be able to be moved out of here!

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Saturday, August 15, 2009

Day 12 of Our Journey
Last night we ended up moving rooms in the ICU. We had our own room previously, but we needed to change because a little girl who has to be in isolation required a single room. We are now sharing a corner "suite" with a tiny little infant who has had some kind of heart surgery. Please keep her in your prayers! She looks like she was premature, she's so small, I'm not sure of how long she's been here. We're so blessed to have a little stinker with extra chub- her size has been very much to Mya's benefit through this whole ordeal. I went home last night and finally had a peaceful night's sleep. Rob wanted to stay with Mya in the hospital. I had a lot of errands to run, so I was able to get some of them done prior to coming back to the hospital today. Funny how life continues, a bummer how those bills still have to be paid! Apparently she had a pretty restless night (so did Rob...), the nurses have been trying to find the right combination of sedatives and pain medications to keep her comfortable. They're both sleeping now. Time for rest.

Friday, August 14, 2009

The Details...
So, with humble hearts, we are proud to say that Miss Mya should OFFICIALLY be on the real road to recovery. This situation is nothing short of a miracle. God is good. Mya's left cornoary artery was imbedded in the aortic artery wall. Dr. Cohen went in and made a very small incision to open it up so more blood could move through. This was a very complicated procedure, due to the tiny size of our 1 year old's heart. We are back in her room- she looks great. They didn't even turn up her ventilator level- so she's breathing a majority on her own. There aren't any new incisions, and since she didn't have much time to heal from last Friday's surgery, the process was quicker to open her back up. Mya will need to take aspirin for the rest of her life, since it thins her blood to the level she needs to avoid clotting. She has to have another heart catheterization test on Monday, to verify the improvement of blood flow, so she'll have to keep the breathing tube in until that time. I CAN'T WAIT for it to come out! I'm pretty sure I've said this 100 times, but this one feels much closer to being real. It will be so wonderful to hear her little voice again. I can't wait for her first "hi!" and for her to blow us unobstructed kisses. All of the staff are as relieved for her as we are, they've become personally connected to our family. We've encountered such wonderful emotional support in addition to the physical support by each staff member that has graced our room. Every one seems to really like Mya, they haven't even seen her super cute antics when she's healthy! Lots of comments on the red hair... It's difficult to express our level of joy at this time, and we are so thankful for every moment we've experienced for the past two weeks. As difficult as it's been, we have learned many different times how our lives are so precious and to live for & enjoy every waking moment we have with our family. The amount of support we've been given has been a wonderful blanket of love wrapped around us. From friends bringing us meals, to small gifts for Mya to the immense amount of prayer that we know is happening- we are loved. People we don't even know have been praying for us- how amazing. Thank you for your commitment to our blog and I look forward to posting more videos of our growing girl and the crazy fun kid stuff she does.
12:45pm Update: MYA IS OKAY!!! The procedure seems to have fixed her issue, HOORAY!
10:15am Update: We just kissed Mya goodbye for surgery and were able to walk with her to the doors of the OR. From the meeting this morning, they apparently talked about her situation for a long period of time. The good news is that they are all fairly certain that option 1 (from my other postings) is the reality. However, because the size of her coronary is smaller than a
  • bullet point on this screen, the procedure is VERY complicated. If it is too small/difficult to fix when they get into her heart, they're are several other options for what they can do and how there are other fixes. However, we are convinced that this is the last time that they have to go into our little girl's chest!!! We even told them all that as we kissed her goodbye.

Thank you for your continued prayer!

7:30am Update Mya is the only one having surgery today. Because of the complexity of the situation, all of the sugical & doctoring staff have a conference every Friday. Mya's case is the first on the docket to be discussed. Although Dr. Cohen is fairly confident in his plan (he's the top surgeon of the Cardiac division), they're getting a lot more opinions on the situation to make sure everyone agrees with the procedure today. That should last until around 9:00am, and Mya's surgery is scheduled at 10:00am. Rob & I are surprisingly at peace with the whole situation, and are confident that her issues will be solved today. We'll get more details of the procedure coming up, but are thankful to have some early morning time to play with Mya and read her a few books before she's out of commission again for awhile.

Thursday, August 13, 2009

Surgery Take Two

Mya is set to go to surgery #2 tomorrow. We're not sure of the exact timing yet, but probably around 10ish. They're assuming she has a coronary osteoplasty, option 1 from my previous posting, we're praying that is the case! Please keep her & the surgery team in your prayers, we'll post updates as we know them tomorrow. Until then, we're reveling in our time together; her comfort and her sweet level of serenity are wonderful. It's been an amazing couple of days for our little family, refreshing our energy and excitement for her getting out of here! She's going to be back to normal- even better then normal soon!

For those of you following our friend Noelle, she's doing great, her breathing tube is out and she's coming off the sedation as of this afternoon. Huge answers to prayer! http://hiltysprouts.blogspot.com/

Wonderful moments with our girl...

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Our nurse let us hold her today, such amazing moments! Small things we took for granted previously have been such a blessing to us today.

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Wednesday, August 12, 2009

We finally were able to meet with the surgeon today. It sounds like there are a couple of options for Mya, but everything is hinging on the reality of her heart situation, which is fairly unclear. So from our understanding, she could have one of two situations, both requiring a 2nd open heart surgery: Option 1. An intramural coronary artery which is possible to repair. The artery has possibly grown into the wall of the aorta, and they could go in surgically to fix it, by making the space bigger, allowing blood to flow easier throughout. Option 2. A narrowed coronary artery that didn't develop fully. This one is the more difficult situation, and pending the reality of it, the only choice (from his perspective) would be to do a bypass. However, our surgeon isn't comfortable with that, he feels that since she's so small it has a high risk of going bad and has had a negative outcome with a previous patient. So, from his perspective a better fix for this would be to consider a heart transplant (worst case scenario). He isn't making the decision himself, they're still planning to take it to a group of masterminds to hash out the choice. We are still unsure of the timing and decisions, but from what we understand, they may just have to open her heart back up to see what they find, since tests don't show the details to the level they need. This surgery is a timely decision too, since they're leaving the breathing tube in, it could potentially be by the end of the week. Or, they may choose for us to go home and come back in a few weeks to do the other surgery... not sure. Please pray for option 1! We had a nice day today in light of the situation, our little friend Noelle's surgery went well. They're our neighbors 2 doors down in the ICU. We also took a CPR class given by the hospital and spent an hour tonight playing with Mya. She's been so sweet. She even had a slight smile at one point, playing a minor amount of peek-a-boo with Daddy. We've been so generously taken care of, thank you Persons & Deumans for dinner- they've been wonderful. We also want to thank our church & my vanpool for the generous amount of gift cards that have been sent our way. You are all so wonderful. Please pray for our friends the Herberts, they're son is here at children's too (I really wish we would stop meeting friends here!!!), he just had surgery today on his arm and will be here a couple of days for the recovery. From my understanding it went well, but prayer for a strong fix/recovery.
It has been such a blessing to see Mya during the past 24 hours, her level of alertness is so refreshing. She is such a beautiful girl! I don't know if I truly absorbed the reality of our situation until last night, but after Rob & I left the hospital (we've been going home the past 2 nights), everything hit us. It's taken a bit of time to soak in that Mya has to have another heart surgery or she could go into cardiac arrest at any time as a result physical strain (ie fevers, getting sick, putting in another breathing tube for a future surgery etc). While the idea of another surgery is stressful, it's not the greatest source of concern. The bigger issue we're facing is that our surgeon team isn't even clear on how to fix it. It's a very unusual problem and because she is so small, there are a lot of physical limitations. Mya's current physical state (which is really good) would have allowed her to come off the breathing tube yesterday, but she's being left on it until they derive a few surgery options. They feel the risk of taking her off the breathing tube is high. She doesn't need the ventilator right now, and taking it out isn't the issue. It's putting it back in for another surgery that is the problem. They have to sedate her for that procedure which could cause her to have dangerously low blood pressure, which could easily cause another arrest. Now we're waiting on several top people to do a lot of research, reviewing of her tests and echo cardiograms and coming up with some plausible fixes for her little artery. Our cardiologist is consulting other colleagues across the country to see if any other teams have worked with this type of situation. If there is ever a time that we've had to rely on faith 100%, this is it. Not only for the choice on when to do surgery, but how they're going to proceed with it. We are praying for clear discernment for Dr. Cohen and the surgeon team on how & when to proceed with a fix. He will be reviewing our case later today.

Tuesday, August 11, 2009

The best medicine...
We've just had an amazing hour. Mya was really alert, so we decided to let her watch a few videos we have on the computer of herself. She was totally focused on them! It was amazing to see her try to dance with the below video and she also tried to clap and blow kisses in her limited way, with the breathing tube in tow! She had all 3 of us (including the nurse) crying. Thanks to Amy & Daniel for you music, it's become the best medicine for all of us yet. We also want to thank friends we took movies of at her party, it was a special time to add them all to the mix! The best part is that is the most alert and the most "Mya" she's been in a week. There is no apparent brain damage at this time- she was so excited to see the videos. PRAISE GOD! Just another blessing to add to the long list.

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Thinking through this entire situation, we have been so blessed that Mya had a heart murmur to find this artery issue! This cath test was genuinely the last resort idea of the surgeons here to identify any more issues of her heart. Several doctors and cardiologists who explained the situation to us mentioned that they didn't expect to see anything at all, but the coronary arteries were the only thing that hadn't been explored thru other tests. There have been so many opportunities & reasons for this to all go bad, but so far, Mya has been able to withstand some major issues, and I'm not willing to blame it on luck. There has been a wonderful reason for the order of these seemingly chaotic events, including many that we may never truly understand. We genuinely believe that Mya has an amazing purpose in life, and with the help of the overwhelming amount of prayer, we know that she's going to be a strong little stinker running around before too long. We are so blessed to have our little girl, what an amazing gift, huh? She's doing great right now, sleeping sweetly in the bed next to us. Thank God for that. Now we WAIT & pray for more very important decisions to be made. Isaiah 40:31 They that wait upon the Lord shall renew their strength. They shall mount up with wings like eagles. They shall run and not be weary, they shall walk and not faint.
Tuesday 10:00 am Update: Mya is back from the heart cath test. Good news is that she did just fine during the procedure & they found the reason for her arrests. Her left coronary artery is really narrow, causing the lack of flow to hear heart. The bad news is that this is pretty uncommon, so they don't have a lot of options/standard procedures on how to amend the issue. They're planning to take her case to a meeting of the minds on Friday where they'll discuss the best situation for her. At this point she's doing so well they could possibly take the breathing tube out today, but I'm not sure if they'll want to leave it in, knowing that another surgery/procedure may be necessary. This little squirt isn't making things easy on anyone!
Mya went back to the OR today at 7:45am for her procedure. Please pray that it goes without complication! It should last 1 1/2-2 hours. Last night they identified that she has a urinary tract infection, thus the fevers. I'm glad they caught it when they did, especially since she's still on pain meds to help manage the discomfort with that; they put her on some antibiotics last night to clear it up. They also took out the main line/IV's from each of her hands yesterday, replacing only one of them. I'm glad they re-did them, it had been a week and her little hands were looking a bit swollen. I'll keep you updated post procedure! If all goes smoothly she has a good chance of getting the breathing tube out today- I HOPE!!!

Monday, August 10, 2009

Mya has had a really good day. She's come off of her blood pressure medication, the urine catheter, and the ventilator is close to being unneeded. They are keeping her on it because of the heart catheterization test tomorrow morning. It's scheduled for 8:00am. We're a bit nervous since she's done nothing "standard" and every procedure up until now has been "low risk." Everyone here jokes a bit about her having her own agenda... but they're very serious too about knowing what a wild card she has been. Assuming an uneventful procedure, hopefully she'll get her breathing tube out tomorrow, which she'll really appreciate. Today she's had times of being really alert, and clearly frustrated by the tube. She's made eye contact several times even though she's obviously drugged, it's great to see her little personality again. Generally those times are when she needs another shot of Morphine, but she is moving very normally (which is a huge blessing!).
Not done yet...
Since they've not been able to identify a reason for Mya's heart stopping, during the doctor's rounds today the surgeons suggested that Mya have a heart catheterization test. This is where they put a dye into her heart so they can track the blood flow to make sure everything is working correctly. They are mostly interested in her coronary arteries. Her heart currently isn't pumping as well as they'd like, although there are other potential reasons for that, but this is one test that could be executed to rule out everything they know to do at this point. Unfortunately it requires more anesthesia... and more risk. They'll put a catheter in her leg that will be run up to her heart where it would add the dye. This may not even be able to be done today since they've got a full schedule, so that means leaving the breathing tube in until after the procedure. We're not excited for it, but agree that we need to have some answers on the arrests. For a little video on this procedure click here. Mya just woke up and is more alert than we've seen since last Tuesday. Her eyes were tracking to ours and she was getting really frustrated with her physical limitations. While it was wonderful to see her focused eyes and movement, it's heart breaking to watch her deal with the pain and frustration with the breathing tube.
Monday 8:10am
Mya had a good/uneventful night. She had a bit of a fever, so they've been cooling her with cold packs. Today they're going to work to get her extubated (taking the breathing tube out). Such wonderful news, I can't wait for that to happen. It's not a quick process, so it'll probably come out tomorrow. They have to wean her from the ventilator, by slowly turning it down so she'll start doing the work on her own. She has a lot of junk in her lungs that is normal (mucus etc), that they have to suck out. It's not as clear as they'd like, so they sent for some tests to see if she has any bacteria growing and if an antibiotic is required to clear it up. Otherwise, our beautiful little girl seems to be improving every day. She's been opening her eyes a few times, not really focusing, but we get to see her beautiful blues! Her little arms are tied to the bedside, it's pretty loose, but just so she can't grab anything from her face. They will get to come off when the big nasty tube is removed... we're all looking forward to that.
SMALL WORLD...

Yesterday Rob was online going through some family blogs and he came across a friend of ours, Joel Hilty-Jones, who Rob went to High School with. We both know his family really well, I took piano lessons from his Mom and Rob played basketball with both Joel and his brother, Beau. Anyway, Rob was reading his blog and found out that they are going to be here in Seattle at Children's Hospital TODAY to possibly get a valve replacement for their little first grade daughter! So crazy! We have a high chance of being neighbors in the ICU, pending their exact surgery timing. Not a place I'd generally like to catch up with old friends, but it'll be nice to give each other a little emotional support and prayer. Please pray for their family, the stress of cardiac surgery is more than I would wish on any family. If you'd like to read their story, go to http://hiltysprouts.blogspot.com/

Thank you all for your love and support for our sweet little girl. It's really helping us get through this difficult time. We're so blessed to have such amazing families, co-workers & friends you've all helped us! We love you!

Sunday, August 09, 2009

As of about 1:15 today Mya has started to move around. It's so nice to see little movements. The nurse just went to find some wrist restraints, but it's so wonderful to see "Mya wiggles." The restraints aren't too strict, they just keep her arms from being able to touch her mouth. Everything this far seems to be "normal" as far as her reactions, we're still praying that there hasn't been any neurological damage from the arrests.
GOOD NEWS!
They've taken out her chest drainage tubes, but they've left the pacemaker wires in. She's also "eating" through her feeding tube that was just changed out from a drainage tube (through her nose). Great news! She hasn't had anything in her little tummy for 5 days. It's so nice to be taking steps in the right direction. We want to get out of ICU!
Slow & Steady
There have been few changes for Mya. She's finally back to being warm, they've been cooling her a bit more post surgery. We're hoping for her to be completely off the paralytic today, which will help her circulation. She'll start to move a bit more as well. They did another echo cardiogram yesterday morning and it wasn't totally what they were expecting; as it shows the left ventricle not working as hard as it normally should. They've decided that her little heart has had to work harder with the paralytic (the reverse effect of it's intention), having to force more blood into constricted capillaries; so now it's just slowed down since it's a bit stressed. This should get better in the next day. They probably won't do another echo to double check until tomorrow. The nutritionist just stopped by to check on her status. Mya's currently only "eating" via IV. Hopefully in the next day (before she's too awake), they'll give her a feeding tube and start putting some food in her tummy. This can't happen until she's got better circulation- obviously many things are hinging on getting off of the paralytic. I just found out that both patients next to us have had heart transplants. I'm so thankful we're not in their shoes! One boy is about 16ish and the other is a little baby girl, not more than 2 months old. It's such an amazing place, with big stuff happening all around us. I have to say that I'll stick to working with clothes! It's not nearly the same stress!

We want to thank you for you many prayers & well wishes! We know they've been helping; I am so thankful to be where we are, even if she's still not awake. Amber & Rick- thank you so much for coordinating the Dinners Ready meals for us, they'll come in so handy! A huge thank you to those of you who contributed. Jen & Creekside Moms the bag of food & snacks has continued to be really great- thank you! Lani and Mia- we love the little book and treats; we've already read it to Mya a few times! We have been constantly humbled by such generosity from everyone around us.

Saturday, August 08, 2009

Recovery
I'm so thankful to say we are finally to the point of recovery! Mya has been doing pretty good, over night and today her blood pressure and temperature have gone up and down a bit, but that seems to be the only thing her nurse is consistently managing. They're weaning her from the paralytic (the medication that keeps her from moving), so in the next day or so, they'll be restraining her arms so she won't pull the breathing tube out herself. She still has a lot of tubes etc. the first one to go will probably be the drainage tube & pacemaker wires from her heart area, I'm anxious to get some of the stuff off of her to make her look more normal. I'm also looking forward to her really waking up, it's been so long since she's been coherent! At this point though, she just needs time to get her through. Resting and recovering is the key. The nurse is just now giving her nutrition via IV again, so we've got a ways to go until she's feeding through her tummy. Here is a photo of her incision, they've done a great job, especially knowing that they had to re-open her chest to pump her heart again. I think the scar on her neck where the ECMO tubes were will be worse than her surgery scar. For some reason I can't turn this picture correctly in blogger... sorry for the funny direction. We're down to one nurse and she has been leaving the room a lot more frequently to help other nurses. I love needing less care! It's so nice not to be the priority emergency situation any more. We have a neighbor boy in the ICU who is also recovering from some kind of heart surgery too, he was just wheeled in this morning. Rob & I have both been able to take naps today, the knot from my stomach is finally gone. It's so nice to be able to relax a bit. I'm pretty sure we'll have less free time when she wakes up. That's when the parent-care job gets to be more demanding. I'll take it! I'm so incredibly thankful to have our daughter!

Friday, August 07, 2009

So good to see our baby!!!
Finally we've been able to see our little Mya Bug. Visually she looks great... a sight for Mommy & Daddy's sore eyes right now. I'm surprisingly not as bothered by her incision as I expected (even though it's still covered). The cool part is that she's got the gross tubes out of her neck from the ECMO machine. Now she just needs to get thru the next 36-48 hours without any problems, and we'll have a better chance of being done with the sedation and getting the breathing tube out. This is all standard protocall for this situation. However, due to her 2nd heart failure, they're keeping her sedated longer than they would usually to make sure she is totally stabilized before she wakes up to have to deal with the pain. They're planning for sure over night, possibly thru the next couple of days.
Prayer Still Needed! It was 6:00pm and we still hadn't heard from anyone since 3:30. Finally we got a page, and the we went to the desk and they told us that our surgeon was coming out to talk with us. He finally came out at 6:30... talk about anticipation! He told us that the surgery went well, she had been doing great for about an hour, and so they decided to close her chest and she had another episode of her heart quitting. They quickly re-opened her chest and hand pumped her heart to get it going. Luckily, it worked really quickly and her body responded well to the re-start and more medication to continue to help her. The bummer is that there isn't a reason for anything, they don't know what is causing her heart to stop! The surgery itself went well, her murmur has been patched and our surgeon reported that he thought we made the correct choice to do the surgery now, since coming back could have been as severe as the first arrest. At this point, they're going to keep her knocked out for the next two days to make sure she's stable. We're relieved that we're over the major hurdles, she's off ECMO and the surgery is complete, now we just need to get her stabilized and healthy. We just really pray that this won't be an issue in the future... since we don't understand the causes. The hospital offers CPR classes, that I'm going to take on Wednesday- I pray I never have to use it! We hopefully get to see her in the next 15ish minutes, it'll be good to see her kiss her head.
3:34pm MYA IS OFF THE HEART/LUNG MACHINE AND IS DOING WELL!!!! She'll be in the OR for another hour, then will be transported back to the ICU where we'll get to see her. PRAISE GOD!!!
Mya is in Surgery, they took her in at 12:23pm. Please continue to pray for her right now! It took 7 hospital staff to get her down the hallway to the OR... here are pictures of the "parade!" UPDATE: 1:34pm surgery officially started, the previous hour they've been preping her and making sure she is sedated, obviously taking things slowly so thing's don't go bad. This is further than we got last time. PTL! UPDATE: 1:54pm Mya was put on the heart/lung bipass machine. All seems to be going according to plan.
Another Big Day for Mya
Mya had a good night, she's moving a lot now. We were under the impression that she'd be sedated until surgery, but she's currently on morphine and one other drug, which allows her to move more, so she's not totally "under." While it's good to see her little wiggles, it's hard to see the painful wincing from her face. Last night she was really active, so much that she tried to pull out her breathing tube at one point. The nurse caught her, but said that it is a positive reaction, since that's what she should want to do! She also opened her eyes to see Rob, much wider than she had during the day. I ended up going home yesterday for the first time, to get more clothes and a few other things we forgot to pack. It was great to find a gift from all of my co-workers at REI hanging on our front door. Thank you all very much for the very generous gift. We've also been blessed by many other people with food and gifts. Thank you! Assuming everything goes as planned, we're going to lose the ECMO machine & the managing nurse today, as Mya will be taken off of it during surgery. HOORAY!!! That is a big step! She's seemingly really strong right now and all signs look very positive for her surgery today. We hope to have her off the breathing tube soon after surgery, then she'll be a little more comfortable. From this point, we are looking to be out of ICU in the next couple of days. While I look forward to being out of ICU, there is comfort in having 2 highly trained nurses with eyes on her 24 hours a day. I'm pretty sure Rob & I will have to start "working" more once we get to the main floor, watching her closer. Right now we're able to enjoy our time with her and come and go when we need to. HOWEVER, we'll take it! Leaving here means that she's progressing positively and getting out of the hospital after today will be the main objective for all. I'm assuming my blog posts will be fewer at that time since she'll require more of our focus.

Thursday, August 06, 2009

The big decision has been made! Mya's test has gone very well by temporarily taking her off of the ECMO machine, her CT scan didn't show any negative signs, and when she woke up, she was moving very normally & she opened her eyes a couple of times. While these are all great steps, it's still not 100% that she didn't suffer any brain damage from her heart failure...but all are huge positives. The amount of brain damage can't be understood until she wakes up completely, however we are very hopeful and the chances are high that she doesn't have any. Weighing all of the options, our surgeon (who has been communicating with us regularly) has said that we can do surgery tomorrow. The unknown risk is that her current level of brain damage (if there is any) could be enhanced by putting her on the heart/lung machine which is required for her surgery. However, the other option of getting better and going home just to come back in a couple of months to do the surgery isn't going without risk either. She still would need to do the heart surgery at some point, and to come back for that would not only be emotionally difficult, but we don't know for sure if she'd have the same issue. So, we have collectively landed on the following plan: 1. Surgery has been scheduled for tomorrow afternoon (anytime from 1:00-2:00ish). 2. She's going to stay on her current anesthesia and ECMO until surgery tomorrow, as it will help with the surgery at this point due to current incisions etc. 3. Surgery will be performed as originally planned; should be 45ish mins to repair her VSD and then will have a 1 hour clean up/recover time prior to getting to see her again. 4. They've given us the rough estimate of being in the hospital probably another 7-10 days since she's got a lot to recover from. Please pray for: NO BRAIN DAMAGE and for an uneventful surgery! We still have reservations about it, but are very optimistic. All of the doctors and surgeons have a more personal connection to Mya now, and we KNOW that they are doing all they can to get her thru this with no issues. THANK YOU!!!
BIG DAY!
Mya has been a champ today. They have done a CT scan, where there were no visual signs of brain damage. PRAISE GOD!!! Additionally with that, they weaned her off the paralytic & some of the pain meds so that she can move and wake up to make sure all of her motor skills are still in tact. She has slightly opened her eyes, but we're still waiting for her to open them completely, it just takes a little time. It's so nice to see her moving since it's been 2 days of being knocked out. Everyone is commenting on her red hair and how that firey little personality will be coming out soon! We've been showing the staff videos of her, they're anxious to meet her, awake! Once the Doctors approve of her physical movement levels, they'll put her back to sleep and we will be deciding on how to progress with surgery. Rob & I have told the surgeons that if we have a preference and if it's best for Mya, we don't want to come back and we would like her to have surgery while we're here so we don't have to recover twice. Coming back would be the hardest thing in the world for us, not to mention the levels of anxiety from all of the staff as well. So, that being said, we will have a meeting with the surgeon/anesthesia staff sometime this afternoon to hash out the best possible scenario and game plan to go forward with her surgery. Keeping in mind that there is still the unknown for her cardiac arrest situation, so they're being very conservative with all procedures. At 1:00 they're going to do a test run to turn her off of the ECMO machine, which is seeing if she can be on her own, another requirement for surgery. If she has a tough time with it, they'll wait a few more days to let her rest on the machine. At this time, our nurse (who I think is great) thinks she'll be just fine, as she's already supporting herself about 40% of the time.

video

Wednesday, August 05, 2009

As of 4:00pm today her "stats" are great. Mya is progressing very well. The nurses just cheered her on, not having to give her anymore blood- something they expected to have to do. They just started to feed her via IV for the first time too. I'm sure she's hungry, since it's been 36 hours since she's had anything in her little tummy. Mya gets to warm up tomorrow morning! I'm not sure why I'm so excited for this, other than I hate being cold myself! They're going to stop cooling her blood around 8:00am, which will be 36hours post CPR. Tomorrow is a big day for her and for choices to be made. They're going to allow her to wake up for a short time to see what kind of movement she'll make to see if there is any visible brain damage and may do a CT scan to look into it further. They'll also decide on going forward with surgery or not... we'll see. Until then, she's holding her own taking positive baby steps to getting better. The nurses gave her a few little beanie babies to hold onto (they're actually holding the tubes off of her body) in addition to a bow in her hair to make sure incoming staff members know she's a girl! They've been great to talk with today, as they are keeping us very calm since everything is very procedural to them.
We truly appreciate all the help that's been offered/given. Due to the high level of risk she has, we can't take many visitors. We appreciate email conversation right now and we will connect with you when we can!

Mya two nights ago...what's not to love about this little sweetie???

video

The doctors and surgeons had their "rounds" this morning and we were glad to be in on their conversation. Mya's case has stumped them all (probably 10 nurses, sugeons and doctors- the top people of the industry)... nothing they've ever experienced previously. At this point they're not concerned with her heart, but they are worried about the trauma to her brain, both current and future. They discussed all the pros and cons of different senarios- it was great to hear the debate. They were all speaking with loads of expeirence and from different perspectives to what they thought were the top options for Mya. At this point, they're definately planning to warm her blood back up tomorrow, there is a 48hr protocall to keep it cool so that it doens't negatively affect the brain. Beyond that, they are currently considering 2 options to go ahead with:

Option 1. To get her off the ECMO machine asap (possibly today), warm her blood up and try to get her home. Heart surgery would be considered down the road (short term). The tough part is coming back for surgery later on. We still don't know why she reacted the way she did, so it's not clear how to proceed differently next time. The unknown obviously has the potential to cause more trauma to the brain by ending up in the same spot we're currently in. Not to mention the stress we've all endured, including the surgon teams and our Family. We all have reservations about putting her back under.

Option 2. To keep her sedated, to keep her on the ECMO machine and to go forward with her surgery in the next couple of days. They don't know the current status of her brain trauma, and that's what they're concerned with. They're considering a CT scan tomorrow after warming her up, to see if they can identify any brain damage to help make future choices.

video

We've been comforted by the excellent staff here, they're so knowledgable. The 2 main anestesiaologists have clearly been personally affected by this situation and both have told us that they are praying for Mya. The lead told us with tears in his eyes that last night his 3 kids were praying for "the little girl at Daddy's job who needed their prayers." Keep up all the prayers, they seem to be working! She's showing great signs of improvement, even though there is a long road ahead!

Mya had a really good night compared to her day yesterday. The nurses & doctor are pleased with her progress. They've been able to wein her from some blood pressure medication, lower some other pain meds and to give her a catheter to measure her urine output. She is really cold, they've had to lower the temperature of her blood to protect her from brain damage, although she has the possibility of already suffering some damage during her cardiac arrest, it can't really be measured until she wakes up. While Mya is on the ECMO (extra corporpal membrane oxygenation) machine, she will have two nurses at her bedside at all times. They've said that the normal time for this is about 72 hours. The surgeons and doctors will make "rounds" at around 8:00am, visiting all of the patients and to assess their status and decide collectively on a game plan for the day. I'm anxious to hear of their decisions for Mya. This is a picture of the ECMO machine, that saved her life, we are so blessed to have it working for her! Rob is doing okay, he slept in the ICU room with her last night (only one person fits) and I attempted to sleep in a small sleeper room they have on the next floor. It's amazing how difficult it is to turn your brain off. I think I got 4 hours of sleep, between thinking of our little one and replaying the day in my mind. Eating and sleeping isn't easy when you have such a knot in your stomach!!! One of our biggest fears right now is getting her off of this ECMO machine. It kind of sunk in last night how critical she has been... one nurse mentioned that she heard they were trying to resuscitate her for 30 mins. For some reason I didn't realized it had been so long. Another thing we're worried about is her heart condition, it hasn't been fixed and we don't want to do this again! We really need them to find out what the source/trigger was for her heart failure. They could decided to do surgery since she's still under anesthesia, but I have a gut feeling that it won't even be considered, and that we may have to come back in awhile (several months) to re-do everything. Obviously the most important thing is to make sure Mya is stable and that everything is done to get her back to where she was less than 24 hours ago. This ICU is amazing. We're in the infant ICU where Mya is the "biggest" kid. There are a lot of little tiny babies here, it seems like all the "beds" are full. I'm ready for Mya not to be the most urgent care case, it seems so backwards that we came in for such a normal procedure and we end up with the most emergency situation and care in the ICU. Thank you for all of your comments, prayers and emails. We are able to check email and facebook when we want, but phone messages and texting isn't as easy to do, as we have to be out of the room for that. We will continue to post more as we learn more!

Tuesday, August 04, 2009

Update on Miss Mya
Today has been a pretty tough day. Mya couldn't eat all morning, and the surgery timeline was essentially 3 hours later than expected. We got to the hospital at 11:00am and were shown to a prep area about 11:45. There she got her arm bands and we wiped her down to make sure her skin was clean and put her into her sweet little robe and socks. Due to the previous surgery being longer than anticipated, we ended up sitting in that room until 1:45. Our little champ was very good, pending the circumstances, but it certainly was a difficult waiting period. Mya was given a some medicine to keep her from getting worried about leaving us, and then they took her to be prepared for surgery.
She was given an IV and the breathing tube. They began the usual anesthesia, but for some unknown reason she reacted to something within the mix and went into cardiac arrest. They resuscitated her and put her on the "ECMO" machine, which is taking the stress off her heart, by oxygenating her blood for her. We were alerted about 1.5 hours later... some tough news to take. We were able to see her fairly soon after. The lead anesthesiologist has never seen this situation in such a "common" procedure (in the thousands of cases he's performed). Mya is currently in the ICU with the best people helping her. One of the nurses commented saying that we are lucky to be here in Seattle with the best people, otherwise she may have not made it; due to the severity of the situation. They have decided not to progress with surgery at this time, until they can analyze the situation further. We are in the ICU for a minimum of 2 days where they'll be testing for any possible reasons for the reaction; as many different surgeons and doctors are thinking thru her situation to find a cause. We would truly appreciate any and all prayer for our situation. She looks pretty rough, but she did open her eyes and we get to be by her at all times.