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.

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.

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.

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.

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.

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.

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.

B-I-N-G-O!

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.

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.

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.

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.

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.

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.

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.

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:

http://www.eapsa.org/parents/resources/catheter.cfm

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.

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.

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!

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.