Thursday, January 31, 2008

Abby was funny this afternoon. She would get all agitated and fussy whenever she pooped or had to get suctioned, then she would tire herself out and go to sleep. She seemed to tolerate things a little bit better today. She was peeing today too. Dr. John said that he never really saw any kidneys "re-fail." So he thinks that she should continue to improve in that department. Dr. Jenkins also thought her kidneys should continue to get better as well. They are still slowly lowering the ventilator setting, and Abby is tolerating it well so far. They changed the dressing on her chest and said the wound looks good.

Dr. John said the plan is to close her chest by slowly removing the "links" in the "chain." After he is sure the plates are secure and fairly healed, he will remove one of those "links," then reattach the 2 ends, slowly bringing the sternum together. Of course, he has no idea how long this will take. It's all new ground.

I know I have said this before, but this is going to be a long process. I conservatively estimate that it will be at least 12 more weeks. I could be wrong, but - who knows. This whole thing is insane. It's starting to wear me down a little bit. But, I am still positive. Just need to keep focusing on the daily, little things. If I start to really think about everything, I go nuts.
Abigail had a good night. She continues to pee in her diaper. Her kidney numbers went up a little bit from the day before. She weighed about 3300 grams. They still pull off excess fluids with the dialysis. I'm not sure where all that fluid is coming from. They continue to lower the ventilator settings, and she seems to be doing fine with that. She seems to be in more pain than before. Or at least able to show that she is not happy. I think she is starting to get used to the morphine. I don't think she likes those bars in her chest.

Tuesday, January 29, 2008

Abby was getting back to her old self. She was really showing some emotions. Mostly, when she was unhappy. She seems to be entering a new phase. She is really moving around more and making faces. Her physical therapy is continuing and she really is making good improvements. Her kidney function is continuing to improve. Dr. Guillery is very happy. She peed a bunch of times. When we called tonight, she had a seriously wet diaper. So that is awesome. Her BUN (blood urea nitrogen) was 23. Normal for her is 5-10. She was over 100 at one point. Her creatinine was .8 Normal for her is .3-.4. She was over 2.5 at one time. She was tooting a bunch today. They are going to start to add protein to her feeds. Things seem to continue to go in the right direction. It is very slow. I am feeling impatient, but just have to remember to relax.

One of our good friends from college, Abby Umansky, makes her own jewelry. She is going to donate a portion of her proceeds to our fundraiser. Please check out her site to the right.

Monday, January 28, 2008

I saw her pee!

Abigail was a good girl today. We had a Pee-Pee Princess sighting. I saw her pee a little bit today, so that means she is producing urine. It's not much, but it's in the right direction. She does have diarrhea. So that is something that they are working on - trying to get the right combo of stuff in her feeds. They are slowly weening her off of the ventilator. They test her CO2 levels in her blood to see how she is doing. It would be the first time they have extabated anyone with an open chest. I think that is still 1-2 weeks away.

Sunday, January 27, 2008

Fantastic Fundraiser

We had a great fundraiser today and we raised a little over $2000.00. It was great to be with friends and come together for Abby. Major thanks to our good friends Kim and Jay for organizing this success.
Abby is doing well, she spit up a little - we think she has a little tummy ache because we had a lot of diaper action as well. She is a little puffy from the surgery. We are looking forward to another great week, thanks for your continued love and support.

This is what it looks like. The Erector Set. Supergirl - with the titanium chest. The "chain" is rigid - not very flexible - screwed in. It is not permanent. Should only be for maybe 2-6 weeks. They provide stability for her to physically go through the mechanics of breathing. You can see the Broviac going up her right side, then down. The ventilator is the one straight down her throat. You can also see her lungs. The darker the area, the better. That is air. Her left lung is worse than the right - which has always been the case.

We heard that she peed tonight. That would be huge. Abby hasn't peed in weeks really. A couple of drops here and there. But that would mean her kidneys are functioning.

Dr. Hagop said her next goals are to get off the ventilator and get her kidneys going. If she is peeing, great. Then hopefully in a week or two, they can wean her off the ventilator.
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Saturday, January 26, 2008

The blog last night was written by Jenn. She is a little more "upbeat" about the whole situation. I am still positive, but was upset that they couldn't close her "normally." Abby is doing fine this morning. She seems to have tolerated the surgery rather well.

Friday, January 25, 2008

Abby had a good day today. Although she did not get her chest closed . . . in the traditional manner. They were not able to close her sternum because there is too much scar tissue and when they did attempt to close the sternum there was too much pressure on her heart. What they were able to do was put in two titanium plates in her chest to keep her sternum and chest stable. Dr. John is hopeful that the sternum and the scar tissue will then heal on its own, in a couple of days or a couple of weeks. So, in the traditional manner her chest is still open, but were on our way to close it - Abby style.

On a very positive note, they did an ultrasound of her bladder and kidneys and they saw some urine in her bladder and her kidneys looked good - we just need to give them the opportunity to work. Before the surgery today, Dr. John showed us the latest X-ray of her lungs and they look good! We compared them with an X-ray from 12/21 and they are so much better it's almost unbelievable. The next thing that we are going to work on are her lungs- they will start to ween her off of the ventilator to see if they can take her off of it - no time frame but it is a step in the right direction. Abby also got a broviac put in, which will help cut down the risk for infection. Abby tolerated the surgery and is recovering. Thanks so much for the prayers - looking forward to seeing you on Sunday.

Thursday, January 24, 2008

Happy 3 Month Birthday!

Tomorrow is her "pedicure." That is the code word we have to use, so Abby doesn't know what is really going to happen. Her white blood cells was down to 14. She lost over 200 yesterday. She weighed 3020 grams. That's about as good as we are going to get. They reduced the concentration of the PD fluid. She is pretty much ready. It will be 6 weeks with her chest open. Pretty unbelievable.
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Wednesday, January 23, 2008


We all played BINGO on some funny hospital channel. (Ch 25) The hostess is down in the Starlight Lounge in front of a live audience broadcasting BINGO every Wednesday. Instead of numbers, they call out medical terms, then give the definitions. For example: pulse oximeter, eletronic thermometer, bed pan, and alcohol wipes. For kids that can't leave their rooms, we can watch on TV and call in when we win. We won 2 times out of the 3 games. It was pretty funny. For a prize, Jenn picked out the "elephant caterpillar" next to Abby. She lost over 200 yesterday. White blood cells stayed the same - but she had some stress yesterday. They aren't worried too bad. Looks like they are going to close her Friday afternoon. Should be no problem.

Tuesday, January 22, 2008

Poor little thing, extabated today. It was the fourth time. The tape job they did got really loose since it was in there for a while - like a month and half. The good news was she did "relatively ok" during the whole thing. Her heart rate dipped - but not too far low. They bagged her and she was basically fine, got the new tube in on one try, and was pretty much done with it.

Monday, January 21, 2008

Abby lost 214 yesterday. Dr. John changed her dressing today. He put some "seaweed stuff" on her wound that is antibacterial. It doesn't look like "seaweed." Jenn says it looks like angel hair pasta. It looks like really fine straw.

She got some more physical and occupational therapy. Lisa, her OT, does really great work. We believe the time Lisa spends with Abigail is crucial to her continued recovery. Lisa's entire approach is very healing and therapeutic.

Abby's chest looks better everyday. I hope I am not getting too optimistic, but Dr. John (and me) hopes by the end of this week - maybe - we can close her chest. I asked him how much longer after the closure can we hold her, he said probably the next day should be fine. I think she really needs to be held. I'm sure that she would love that. I know we would.

Sunday, January 20, 2008

She had another good day. She lost 216 yesterday. Her white blood cell went down to 17, which is, again, in the right direction. Her night nurse Megan drew the awesome picture for her. She was awake for a good part of the time we were there. We gave her a massage - which she loves. Her chest looks better. It seems possible that Dr. John could close the sternum soon.

Saturday, January 19, 2008

This was taken yesterday. Today was cool. We saw "Walking with Dinosaurs" with Tony, Lisa, and Xavie. It was a pretty awesome show. Xavie really liked it.
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Abby had a great night she lost another 292 units of fluid (same as the day before, forgot to put that in the update). The cultures that they took to detect for infection have come back negative after 24 hours which is a good sign. Her white blood cell count dropped from 21 to 20, still high but at least going in the right direction. Hopefully her white blood cell count will continue to drop and there will be no new infections. She still has an infection in her lungs but it is not growing. Thanks for the prayers - have a great day.

Friday, January 18, 2008

Unfortunately the surgeons were not able to close her chest today. They were also not able to put in the broviac because her white blood cell count went up which can be an indication of infection - they took a bunch of cultures for testing and we should know for sure in the next 24 - 48 hours. If there is no infection and Abby was just throwing us another curve ball, they will attempt to close her chest next week. If there is an infection it will push back the closure - pray for no infection.

We also had a care conference today with Dr. King, Dr. John and Dr. Guillery who is the Kidney doctor. Dr. Guillery is encouraged by her latest kidney ultrasound but because there has been no urine output, he is not sure what will be the end result - he stated worse case scenario she will need a transplant, best case scenario her kidneys will bounce back. Everything that we need to work on - lungs, getting the fluid off and improving her kidneys is all based on getting her chest closed. The doctors stated that they are not giving up and neither are we. Lots of Love.

Thursday, January 17, 2008

Abigail will go in to get a Broviac catheter tomorrow morning. She will be taken down to the OR. That way, it can be as clean as possible. Check it out:

Also, they will try to see if they can close her. We know that Dr. John will not do anything that would hurt her. So we are sure that everything will be fine. He just has to see what its like when he gets in there.

She is so brave. And strong. If they can't close her - they could always try again next week.

Wednesday, January 16, 2008

12 Weeks Old!

Dr John said Abigail will have surgery on Friday. He is going to put in a more permanent line in her neck or maybe groin area. He said he was going to try and close her then too. He said he'd like to close her bone, then put on a little suction device that vacuums out infections. Hopefully, she won't puff up too much afterwards. I think she is better than when he tried the last time, but I don't know if he'll be able too. Please everyone continue to pray and send positive thoughts.
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Tuesday, January 15, 2008

Abby lost 200 yesterday. Her massage therapy is really great. Her occupational therapist massages her legs, arms, and trunk. Then her physical therapist does range of motion and flexing exercises. You can just tell by the look on Abby's face that she REALLY needs and enjoys her "therapy time." We think this is very important to her recovery. The benefits are obvious - right away. After 4 weeks of lying on her back, the fluids have settled into her tissues - like her buttocks and torso. The massaging loosens the tissues and lets the fluids "swish" around. Plus, it gives Abigail the sensation of "positive touch" - which is really good.

Our friends Kim and Jay have organised a fundraiser for us. Please check out the link at the top of the page. Thanks!

Monday, January 14, 2008

Abby lost 140 yesterday, which is still good. Dr. John doesn't think his original estimate of later this week to close her will happen. He wants her completely dried out before he goes back in. She will probably swell after the operation. Hopefully, she will be peeing by then.

She had some great massage therapy today. Trying to rub some of the tissues and fluids around. Loosen the muscles. Align her hips better. We are going to try to stimulate her eyes with some mobiles.

Sunday, January 13, 2008

Abby lost 240 yesterday. She was opening her eyes again today. Her white blood cells was good. We both got to hold her today. She was looking good. She is still barrel chested. But her legs and lower body are becoming soft and more flexible. They lowered the dopamine to 3. She still is not peeing much at all. They are going to switch her pain medication to methadone.

Saturday, January 12, 2008

Abby lost another record 342 yesterday. Her white blood cell count was 9. That is also a new record. They will try to close her chest this week coming up for sure. She is still not peeing too much, but they aren't really worried yet. The fight continues.

We delivered the "snakes" that Logan's Mom, and Gran, and Gran's sewing group donated for the NICU at the hospital. They were really cool, super soft tubes that help prop up the preemies. Thank You!

Friday, January 11, 2008

Today was really cool. Abby had her eyes open, blinking, moving her hands and legs, moving her little mouth. This was definitely the most awake she has been since the operation. 4 weeks ago today!

The picture below (I switched it to vertical) was taken yesterday. She already looked way better today. Looking long and lean! (Well, relatively speaking) She lost over 300 cc's yesterday. That was a record. It seems the more she loses, the easier it comes off. She was on a pace for over 300 when we were there today. But, whatever it ends up being, is great.

Dr. John thinks in about 5 days - if she continues on this pace - they would attempt to close her.

They weighed her today for the first time since the operation. 3.5 kilos. (3500 grams) That means she has 1 kilo (1000 grams) to go to get back to her weight at the time of the operation. They estimated she had so much fluid, she weighed 12-15 pounds. Tripling her body size.
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Abby had a good day today - holding steady. They were able to lower her dopamine (heart medication) and she is able to maintain her blood pressure and heart rate very well. We are now looking at another week before they will attempt to close her chest.
As you can see from this picture (my apologies that it is on the side) she is losing a lot of fluid in her head, however, her chest is still very wide - my little sumo. Even though it is not every mother's dream for her daughter to be a sumo wrestler, Abby impresses and inspires me every day by her toughness and strength. Love to you all.

Wednesday, January 9, 2008

Eleven weeks old!

Abby lost 275 units of fluid yesterday - which is awesome. Fluid is the biggest obstacle right now, she is losing fluid around her head, feet and hands and it all seems to be sitting in her chest area which is what we need to close. Nurse Bonnie and I looked at her numbers today and she has about 4 more liters of fluid to lose, although she does not look 4 liters puffy - there is quite a bit of fluid on her. We are hopeful that getting the fluid off, will improve her lungs, and her kidneys. Right now we are in a holding pattern - but she continues to improve. She is almost back to her fiesty self - starting to move, likes hand holding and is letting us know when she is annoyed. I will be sure to post an updated picture tomorrow. Thanks for the love and prayers.

Tuesday, January 8, 2008

Good things continnue . . .

Today they took the arterial line out of her right arm and took her off milronone which is one of her heart medications. They were also able to lower the amount of dopamine that she is on. Unfortunately Greg is sick so he stayed at home today.
She is still tolerating the breast milk and pooped three times while I was there today. I got to hold her again - which was awesome, she really did well. It is quite the adventure to hold her since it takes at least three people to move her and all of her equipment, we had to reference the pictures on the camera from yesterday to see how we did it since holding babies with open chests is quite the rarity in the PICU. Abby is doing a great job taking off fluids and when I left today she was on pace to set a new record. Even though we need her to pee more she keeps moving in the right direction. Thanks again for the love and prayers - keep it coming.

Monday, January 7, 2008

We Got to Hold Her!!!!

We both got to hold Abigail today. It's been over 3 weeks. Talk about an unbelievable surprise! Our favorite nurse Bonnie is really awesome. She slid a tray under the mattress to act as a back board. We just had to make sure things remained level, as her chest is still open. The little bit of movement is a good thing. It helps swish the fluids around.

She continued to lose fluids today. They stopped the Vec (the paralysing drug). They said they want to really kind of not give her that anymore. She really pees more when she is off it. If she starts breathing against the ventilator, they will have to give her some more. But it will done on a one time deal, not a continuous drip. We saw her starting to twitch her feet and fingers a little bit. That means she is processing it a lot better now - before it would be over 24 hours before we saw any reactions.

Speaking of pee and poop -she did both today! She peed 1 cc every 4 hours. Bonnie said normal was about 2.5 every hour, but we'll take anything we can get! I regained my title of Poop Master - once again she pooped while I was holding her.

Tomorrow they are 80% certain they will take the arterial line out of her right arm. They will also take her off one of her heart medications (milronone). She will still be on dopamine.

They started feeding her 100% breast milk. No more of that TPN stuff with lipids.

Sunday, January 6, 2008

Abigail continued to lose fluids. She lost about 180 yesterday. Her white blood cell count was good today. She got some more red cells too. Her head shaped looked a little better. Bonnie was taking good care of her.

Reality Check

Sorry if this is a "downer" for some people. I just want people to understand the extent of the situation. It's hard to fully convey the gravity through this blog. The doctor is still very pessimistic. He honestly doesn't think Abby will pull through this.

She is very critically sick. She is still day to day. She is one of the most sick kids in the unit. Her ECMO treatment was one of the worst ones they have had. The nurses haven't seen a patient like her in over 10 years. When we say she had a "good" day - it mean she was stable. She will be in the hospital for a long time - at least many more weeks, probably months.

Abigail has a lot of edema. Her vessels leak fluids into her body. She doesn't leak blood, it's just bodily fluids into the body cavities. It's like when you bump your head. That area swells because the vessels leak fluids into that area. Your body does this because that is how the cells that heal get to the wounded area. Her whole vascular system is leaking and swelling. They can't really do anything about this - she just has to heal on her own.

She loses about 150 cc's per 24 hour period through her dialysis. She currently has to lose over 2000 cc's to get back to some semblance of "normal." At that rate it would take about 13-14 days. The problem is time is against her. Every day she has her chest open, the risk of infection goes up. She is already on heavy duty antibiotics (that is one reason why she hasn't gotten an infection yet), if she does get one, it would most likely be fatal.

She is considered in "renal failure." Her kidneys produce about 5-10% of normal urine output. They keep hoping her kidneys start working soon. It could be because she is intravascularly dehydrated. It could be because the swelling is compressing the kidneys.

Her lungs are a mess. Her right lung is hyper expanded. Her left lung is heavily congested. But they still seem to be working enough for now. They will be a problem in the future if she can get past the rest of the stuff.

Her pulmonary arteries will have to be "ballooned" sometime down the line. Don't really know much about this, it's just something that has been mentioned.

The good news is, she is still seems to be slowly moving in the right direction. Every day we go in, we hope for the best. We never know what will happen, what the doctors will tell us, what lab reports come back with news of an infection, or what something we don't even know about will come up.

She did poop today while we were there. We don't even take that for granted. It means her GI tract is still working and the breast milk is going in the right direction. Hopefully they will increase the amount of milk they give her. It is like liquid gold because it has antibodies that help her immune system.

Friday, January 4, 2008

Abby had an ok day. She was still really puffy from yesterday's surgery. She wasn't really peeing at all. The fluids weren't really coming off very well today. We have to pray there isn't an infection. It's been 3 weeks with her chest open. We have been lucky so far. Hopefully, tomorrow will be a better day. That is all we can hope for.

She had a lung bronchoscopy. The doctor cleaned a giant loogy away, so that was good. He said her lungs looked better than they did before.

It's just so frustrating. Sometimes it feels like there is nothing we can do. I mean, we can hold her hand and tell her stories. Hopefully, that provides her some level of comfort. She has always been on her own time schedule.

Thursday, January 3, 2008

Overall, Abby had a good day today - but unfortunately the surgeons were not able to close her skin as we were all hoping for, she is still too puffy. Even though this is a minor set-back she does not have any new infections and she's hanging in there -blood pressure is up, she is tolerating breast milk and her pulse is good. The surgeons did change the IV line from her thigh to her neck - changing the IV line reduces the risk of infection. We would really like her kidneys to pick up -which will help take the fluids off along with the dialysis. Not sure when they will attempt to close the chest/skin again, could be this weekend or next week. She was even more puffier after the procedure so we will continue to take it day by day. Thanks so much for the prayers and love.

Wednesday, January 2, 2008

Abigail got off the blood pressure medicine last night - which is great. They increased the amount of breast milk that she gets today. She started to open her eyes a little bit, since she had the "VEC holiday".

Tomorrow they want to close her skin. We don't think they will be able to bind her breastbone together. But, they will try, if they can't, no biggie. Closing the skin is the big deal, since that greatly reduces the chance of infection.

Jenn says - "Go Mountaineers!"

Tuesday, January 1, 2008

Our Abby is slowly coming back!

Her head shape is really starting to come back to normal. (Aunt Julie - notice the Abby Cadabby doll!!) The fluids are still coming off. Her torso is starting to get more tapered as well. Our favorite PICU nurse, Bonnie, really does a nice job of lowering her blood pressure medicine through out the day too. They really want her off the blood pressure medicine. She is on a "Vec holiday" today. The "Vec" is the paralysing medicine. So, that means tomorrow, she will be opening her eyes and squeezing our hands.

Jason, the physician's assistant, said they want to at least be able to close her skin on Thursday or Friday. They might not be able to wire the sternum shut, but closing the wound with her own skin would be great. That would reduce the chance for infection by a ton. He said that she might have some long term issues with her lungs, but at this point, it would be impossible to tell.