Tuesday, November 30, 2010

Day 310

Ava's gas was 47. She slept most of the night and woke up at 3:30am for an hour and went back to sleep until 7:30am. She was all smiles today and PT had a great time with her working on her head control and sitting up. Everyone loves walking by her bed and see her smiling. She will be weighed tomorrow and this is one of the big things holding her from coming home.

Thanking God for Ava's progress and praying for Ava's continued protection from sickness...

Monday, November 29, 2010

Day 309

Ava's gas was 37. She slept from 9pm until 3:30am. She did lose weight again - she now weighs 5.6 kg = 12.35 pounds. They decided to up her feed to 26 ml and they will weigh her on Wednesday instead of Thursday to make sure she is gaining. If she doesn't, they will go up in her feed again.

Thanking God for all of Ava's smiles and praying for Ava's lungs to continue to grow strong and healthy...

Sunday, November 28, 2010

Day 308 - 44 Weeks Old!

Ava's gas was 33. She slept through the night again. She had a great day and her nurse loves to give Ava her work outs. See Ava's video with her doing tummy time. She slept in my arms for over 30 minutes and I got her snoring. Her nurse said she cried when I left but I'm not sure if it was me leaving. Can't wait to see what the week brings. Ava's smiles light up my world!

Thanking God for Ava's lung growth and praying for her to keep amazing us...

Day 307

Ava's gas was 32 again today. She didn't sleep much throughout the night but was very happy and smiling big smiles. Ava loves to sit up and she doesn't like to lay down anymore. I am going to have to try and come in more. She loves to play with her feet now. She is acting like such a normal baby. She even likes to watch hockey with Daddy.

Thanking God for Ava's abilities and praying for her to be constantly protected from illness...

Friday, November 26, 2010

Day 306

Ava's gas was 32 today. Another good day. She didn't want to sleep much during the day but she did go to bed at 9pm. The news from the doctor of the CAT scan was different from what the scan reads since the person that reads it wasn't exactly looking for what Lung Center was looking for. Lung Center didn't find out anything different from the scan, but I am going to read the report tomorrow.

Thanking God for every day with Ava and praying for Ava's constant protection to get her home... Also praying for Ava's little baby neighbor who is need of prayers...

Thursday, November 25, 2010

Day 305 - Happy Thanksgiving!

Ava's gasses were 28 last night and this morning. Later this afternoon, her gas was 32. They went down to her rate to 10 and she still is on 30% O2. She is completely off sedation this afternoon as well. She wakes up a bit when she hears a noise in the PICU. I think I have some good news about her CAT scan but until I have it confirmed from a doctor, I'm not going to say yet. ;)

We want to thank everyone that has helped us this past year. Without you (and of course God), we would haven't gotten through this. There is so many people to thank so I am only going to name a few: my parents for watching the girls anytime we need them to and everything else they have done, Amy and the other people from my Mom's church that have made meals for us twice a week now for many months, Rachel for coming to our aid and letting God guide you to help us save Ava, my MOPS friends who were willing to watch the girls while I was in the hospital and fervently prayed for Ava the day she was born, Nickole who has helped clean my house numerous times, Connie for you constant listening to our daily adventures and sympathetic ear as well as becoming "Aunt Connie", Becky for all the days you have watched the girls, helped me organize and prayed for Ava countless hours at a time, Knox Church for all your prayers and donating to our family so we could have freezer meals, Jessica for organizing our freezer meals, and the nurses who have fallen in love with Ava and take awesome care of her, who have also listened to me every day and night (probably for hours) talk about Ava and how God has told me she is going to make it. I really could go on and on because there are so many of you, so please don't think I am leaving you out, because we are so thankful. So here's a list of just a few other things that you all have done: watch the girls, bring us food, pray for our family, clean the house, send us cards, gift cards and presents for Ava, surprises in the mail, phone conversations and constant support. God has brought all of you into our lives to help us through a time where I really wish we didn't need any help, but we do. I do hope that Ava's adventures have changed your life as much as she has changed ours.

Most of all, I want to thank you God for letting us keep Ava here. My life has never had such incredible highs before. I sometimes leave the hospital so high on Ava's smile, it's unbelievable. You have shown me how wonderful my life is and how much I need to be one with you. Thank you for bringing me my husband, my beautiful girls, my parents, and all our other family and friends. Our life together is about as wonderful as you can get here on earth. Most of all, thank you for your promise with Ava and showing me how great you are. Every day is another day closer to my three ducklings.

Thanking God for Ava's amazing journey and for God letting Ava be here with us and praying for Ava's continued protection...

Wednesday, November 24, 2010

Day 304 - 10 Months Old Today!

Ava's gas was 32 today. She is just on a little sedation. After we got the approval to have photos done, around 10:30 am, we got the call that a nurse was going to put in a PH probe to test and see if she has a lot of acid reflux. It's a tube than runs through her mouth down her esophagus into her stomach and the test last 24 hours. She was scratching at her mouth and eyes so they were pretty red when we took pictures. Thank goodness for Photoshop.

Thanking God for 10 months with Ava and praying for things to get easier...

Tuesday, November 23, 2010

Day 303

Ava's gas was 35 today. She didn't get the CAT scan done until later this afternoon and the bronchoscopy didn't happen till after 5pm. We did find out the Ava's left bronchi's look bigger and more open and the doctor was easily able to maneuver down them. Praise God! She only got one a couple of weeks ago, so there has been a good change. They also saw no irritation and no secretions. They let her off the paralytic around 6pm and she got agitated but I was able to calm her for a bit by patting her back just like she gets when she gets chest physical therapy. She finally went to sleep with more sedation. We did find out that she has a urinary trach infection. My poor baby has one of those already.

Tomorrow we are supposed to get family photos done for our Christmas cards. We'll see how that goes and hopefully she is not completely sedated ;)

Ava grew to 61.5 cm = 24.21" in length, and her head circumference measured less at 40 cm =15.75".

Thanking God for Ava's continued progress and praying that we can figure her out and get her home...

Monday, November 22, 2010

Day 302

Ava's gasses came down to 35 and 32. Her white blood cell count went down to 10. Her O2 is back down to 25% and all of her other vent settings are the same except for her breath per minute rate was 30, then went down to 25, just because she is still paralyzed and doesn't breath on her own. I tried to get her off the paralytic yesterday and that didn't work. I tried to the point of crying. I really feel there is some missing info through this whole thing and I know the doctor who was on-call the night this happened, was scared for Ava and didn't exactly know how to treat her, otherwise he would have taken the paralytic and sedation off that night. Her ears are clear as well.

They are going to take advantage of her being paralyzed and check out her trachea and lungs tomorrow. They are also going to have a CAT scan to find out what happens when the peep of the vent is off her lungs and see what happens - if the lungs collapse or not.

They said that missing two doses of steroids probably wouldn't have caused this. Her blood pressure didn't change which is one sign of missing a dose. The only thing variable is Ava, and you can never understand exactly why her body reacts to things. It's kind of ironic that the staff basically blows off Ava not getting her two doses, when if we forgot to give her the doses we would probably be considered bad, negletful parents. If a nurse was in our home and forgot to give her TWO doses and not realize she was even on steroids, we would probably want the nurse to be let go because, after all, that IS her job.

I also had another discussion with a staff member about Ava's growth and she insisted that Ava had grown on her 20 ml of food that we had decreased to. She feels that Ava has a growth problem which I completely disagree with. Look where Ava came from - 1 lb 2 oz. - Sister's Hospital had no problem fattening her up.  I told the staff member at least 3 times, that Ava did not grow on 20 ml and that is why she hasn't grown in a couple of weeks. I looked up when she went down to 20 ml of food, and when that happened Ava weighed 6.2 kg. Soon after, Ava got sick and she ballooned up to 6.48 because of retaining fluid which is typical when she gets sick. After she got better, her weight went down to 6.18 kg and then 6.16 the week after that. That shows she never had a true weight gain on the 20 ml as the staff member said she had. What bothers me, is that she would not listen to me and after I repeated it 3 times, she finally said we could look it up. I feel like my knowledge of Ava is viewed as inaccurate and that I am ignorant to Ava's history. These stats are numbers I memorize without any effort and live by.

Ava did have an increase of weight due to the increase of 24 ml of food. She now weighs 6.04 kg = 13.32 pounds.

Thanking God for Ava's stats to be back to normal and praying for strength and knowledge...

Sunday, November 21, 2010

Day 301 - 43 Weeks Old!

I don't even know how to begin this post. Ava went down to 87% O2 at 6am this morning and stayed there. She was a bit upset and we thought it was because she didn't like her nurse. Her heart rate was a bit high as well. They gave her the asthma treatment and chest PT and she was fine all day until 4pm. Her nurse (who normally doesn't have her), noticed she was getting a bit agitated in her red chair and put her back in bed. They gave her chest PT and she got really mad and desatted to 67. I heard she popped off the vent too, but I'm not quite sure what happened. By the time I got in, she has an IV line in her hand. They told me what happened and I said she was sick. She was on 30% O2. The doctor on call for tonight, decided to put a femeryl line in since her PIC line was gone. He asked what % steroids she was on, and her nurse said none. I showed them Ava's steroid wean calendar and told them what dose she should be on. Her nurse today didn't even know she was on steroids. She didn't get her 8am dose of 6mg, nor did she get her 4pm dose of 4 mg! If this went longer, it could have major side effects! The doctor put her on a sedative and paralyzed her again. She was at 100% O2, but now is down to 40% and a rate of 40. Her gas only went to 69 and I'm hoping she gets off the paralytic tomorrow. I am thinking she may just have an ear infection since it wasn't checked.

Oh how I wish I had nothing to post like last night.

Thanking God for him catching mistakes, and praying that the docs and nurses have wisdom and knowledge... And me too...

Saturday, November 20, 2010

Day 300 - 65 Days until Ava is 1!

Ava didn't get a blood gas today because she only gets them Monday, Wednesday and Friday's. So unbelievably (and thankfully), I don't have much to report. I didn't get to go in today because I didn't feel well. Anthony did and he said that Ava looked really happy sitting in her chair.

Thanking God for these great days, and praying for Ava's continued success and growth...

Friday, November 19, 2010

Day 299

Ava's gas was 41 today. She is doing so great. She slept from 9pm - 6pm. We are having so much fun with her. Her heart rate is around 130 sleeping and she sats from 95 - 98%.

Thanking God for these great times with Ava and praying for continued protection over Ava and our family...

Thursday, November 18, 2010

Day 298

Ava's gas was 34. She is only getting gasses Monday, Wednesday and Friday now. They went down in her O2 to 25%! Room air is 21%. So if she continues satting above 95, she may not need the O2. Praise God! They also went down on some of her back end pressures.
This is a funny photo of Ava - propped up in her chair and watching a movie, with her remote in hand. I guess she laughs so hard at Sesame Street and all the staff get a kick out of her.

Rehab saw her and they want to get her hearing evaluated. They do think she is only corrected to the age of 1 month - 3 months depending on what she is doing. They are going to continue to work with her on a multitude of levels.

Unfortunately, I have a slight cough and runny nose, and the girls have slight runny noses so I am wearing a mask at the hospital and I get so concerned. I could just have allergies though.

Thanking God for the O2 levels going down and praying that she continues to grow stronger and healthier with that left lung looking normal...

Wednesday, November 17, 2010

Day 297

Ava's gas was 37. Awesome! She slept from 10 pm to 5:30 am. She also slept through most of the day and that could be because she got her 6 months shots today. The doctor from rehab came in and evaluated her today and she was happy with her head control and grabbing at toys. Her heart rate is a bit higher than normal when she was sleeping - about 120 - 130, I am hoping this not a symptom of illness especially with our ladies at home having slight runny noses.

Thanking God for Ava's great gasses and praying for continued protection from viruses and germs...

Tuesday, November 16, 2010

Day 296

Ava's gas was 44. It's great they are pretty staying the same. They took her PIC line out today. She also slept from 10 pm - 5:30 am and woke up really happy and went back to sleep a little while later. She had a great day with her nurse and physical, occupational and speech therapy saw her today and worked out all those cute body parts.

I made another DVD of our photos from this year and she absolutely loves it and stares at it. The nurses say that her favorite part is looking at her photos.

Thanking God for all of her smiles and praying that she continues on a healthy road...

Monday, November 15, 2010

Day 295

Ava's gas was 53 today. She has been happy all day and slept from 9 pm to 4 am, up for a couple of hours and went back to sleep. They might get rid of the PIC line tomorrow since it has caused her infection.

Ava weighs 5.86 kg = 12.92 pounds. She went down in weight which I thought was happening when the went down 9 ml of milk. They went up to a total 24 ml of food. She is still the same length and head circumference.

Ava did make the move to the other side. It's a big larger but could possibly be more noisy since there is only a curtain. I made her a DVD tonight of Ariana's first birthday and she loved it. I held her and she fell asleep really happy (and I was too).

Thanking God for moments of pure joy with Ava and praying for God to continue to protect her and our family...

Sunday, November 14, 2010

Day 294 - 42 Weeks Old!

Ava's gas was 44 today! She is completely off sedation and very happy. We don't get much mucous from suctioning and she is still sleeping really well. She slept from 9pm - 5am and only woke up for a half an hour twice.

Alexandra came in today and she played with Ava a bit. Ariana is home a bit sick and daddy's asthma is acting up. Alexandra had such a wonderful day with a sister. A day Alexandra and Ava have never had with each other. They played with each other, smiled and at one point Alexandra was holding Ava's hand, pulled it away to give Ava her dolly and Ava held her hand out for Alexandra to grab again. She didn't want her dolly but to hold her sister's hand. Ava has only seen Alexandra probably around a dozen times, but they are still bonded to each other. Thinking of it makes me tear up and I love that even despite all that all of us have been through - without each other - we still are really all together as a family and nothing can change that.

I finally got to take photos of Ava in her second Halloween outfit - a flower - today. She was sick on the day of Halloween that we were going to put her in this outfit. Enjoy!

I heard that we are moving tomorrow to the other side of the PICU because RSV and flu season is coming and it's safer on the other side for Ava. Oh boy, another place to move to and after we just decorated Ava's room for Thanksgiving. ;)

Thanking God for lots of smiles today, seeing pure joy in Ava's eyes with her big sister Ali, and praying for more days but with us at home...

Saturday, November 13, 2010

Day 293

Ava's gas was 47 today. She is off of her Fentaynl sedation - Yeah! She is doing so good. Praise God. So we need 3 more weeks of her doing good and not sick and then they will try the home vent and then we need four weeks on the home vent. She is so happy and smiles pretty much all day. The only time she gets upset is when she needs to be suctioned or she is tired.

Thanking God for these days when all she does is smile and stick out her tongue and praying that these days last forever...

Friday, November 12, 2010

Day 292

Ava's gasses were 48 and 49 today. REALLY good. She was very happy today, and I got a great video of her smiling and sticking out her tongue. She did good with her physical therapy and held her head very well.

The meeting went well today. Three of Ava's primary nurses came in today for her meeting. Two of them even came in on their day off. We are so blessed to have them and I hope God blesses them. We discussed Ava getting sick and how to react to it as well as getting more physical and occupational therapy. They decided to get rehab involved and they can start a plan. We also are going to have a "clinic" day so that all the docs can see Ava that need to. Believe it or not, it has almost been 6 months since they have checked her eyes. We had hoped she would be home by then. It was discussed that we are going to get her off the sedation and lower her steroid dose. We will keep her vent settings stable so she can grow and then try her on the home vent after those settings have been stable for a month. Then they would want her stable on the home vent. In the meantime, she needs to fight off any illness.

I love what our friend wrote yesterday that she was an addicted to Ava. I think I will call all of us who are addicted to Ava as "Ava Addicts" and we will all have to have "AA" meetings. I can't wait to the day we will celebrate Ava's victory over prematurity.

Thanking God for our beautiful daughter, and praying that her immune system can learn to fight off any illness...

Thursday, November 11, 2010

Day 291

Ava's CO2 blood gas was 67 and 48. She slept pretty much all night and was happy most of the day. The only time she was crabby was when she needed a nap. She loves to sit up and watch tv. When I came in tonight, she would look at me, then back to the tv, then to me, then back to the tv. Her nurse tonight said that if she blocked the tv, Ava would get mad. She is so funny. Oh how I just want to scoop her up and love her up all day.

Tomorrow we are meeting with all of the attending docs and the lung center doctors. Hopefully we can get some decent news since she is doing pretty well this week.

Thanking God for Ava's lower blood gasses and praying for that left lung to not be collapsed...

Wednesday, November 10, 2010

Day 290 - 75 Days until Ava is a Year Old!

Ava's gasses were 55 and 65. She went down on her Fentynal to 3 and hopefully they will go down tomorrow. She didn't sleep to much last night again. She's been up partying with her nurse. This photo is with another one of Ava's favorite nurses. I came in tonight and rocked her to sleep a bit again. But then she woke up and we played for a little while and she was in her red seat that helps her sit up. She LOVES that seat.

They re-weighed her today and she still is 61 cm and her weight went down to 6.19 kg.

Thanking God for Ava's head and back strength and praying for the meeting on Friday with the docs to go well...

Tuesday, November 9, 2010

Day 289

Ava's gasses were 68 and 61. They went up to a peep of 10. My concern with that is that it's going to push the right lung even bigger and it won't open up the left lung. She didn't sleep from 1am on this morning and had a fit around 7am. Her trach cultures came back still positive so she is sick and that's probably why she is still upset.

Ava's former NICU nurse came in with me tonight to visit Ava. This is a photo of her with Ava. I am so glad to have her and be a part of Ava's journey.

Thanking God for Ava's head control and praying for Ava to grow stronger...

Monday, November 8, 2010

Day 288

Ava's gas was 65 amd 60 today. Pretty good gasses. She didn't sleep from 1 am on but did take a couple of naps. When I came in, she was all smiles and sticking out her tongue at me. Oh how Ava has my heart and makes me turn to mush. I got to hold her standing up and I rocked her and she was basically asleep in my hours. They didn't give her any Ativan today and was down to 4 on the Fentanyl (sedation). Tomorrow it should be lower.

Ava went down in weight - 6.16 kg = 13.58 pounds, her length went down but that just means it wasn't right either last week or this week - 59 cm = 23.23", and her head circumference went up from to 40.5 cm =  15.95.

Thanking God for Ava's smiles and praying that she can get sleep...

Sunday, November 7, 2010

Day 287 - 41 Weeks Old!

Ava's gasses were 65 and 66. They were able to come down on her Fentanyl sedation to 5 and she didn't need any Ativan (sedation too) at all today. They made the Ativan available if needed and not every 6 hours. She was pretty much all smiles today. She has been desatting a bit and having to bag her to suction her out. Her heart rate goes down a bit when that happens as well. This doesn't happen very much but it scares her nurses. She didn't sleep from 3am to 6am this morning and then was crying and the situation that I just talked about happened. They couldn't even bag her very well because her lungs weren't compliant. She is sleeping tonight though.

Thanking God for all the smiles and praying for the doctors and nurses to have peace and wisdom...

Saturday, November 6, 2010

Day 286

Ava's gasses were 67, 75 and 67. They went up on her Peep to 8. Her gas then was 59. She had a temp of 100 but it did go down throughout the day.

I didn't feel too well today so Anthony and the girls went in to drop off my milk and see her for a minute. I miss my baby girl. I wish I could be with all day, every day like my other girls.

Thanking God for Ava's progress...

Friday, November 5, 2010

Day 285

Ava's gas was 64 today. She got the bronchoscopy done and it went well. They were able to see the left lung and get down the left bronch and spray it with saline and steroids. They were also able to get some mucous out and also saw some white blood cells. They thought the right bronch looked good and the left bronch wasn't as floppy as the other day. Overall, the doctor said he was encouraged.

When we came in tonight, Ava was a bit upset when get her trach ties changed but when I talked to her for a bit, she opened her eyes (she keeps them shut sometimes when she's mad) and she saw me and she would smile and talk to me. I read her "Peekaboo Kisses" and she talked to me and Daddy for at least a half an hour. When I see her like that, all my fears are wiped away. Praise God for all that he is done for us.

Thanking God for Ava's lungs to be growing...

Thursday, November 4, 2010

Day 284

Ava's gasses were 77, 70 and 70 again. They didn't do any changes to the vent settings but her gasses went a bit higher than yesterday's and the day before. Ava's nurse today who hasn't had her too much, mostly when she is getting sick or is paralyzed, said she was really crabby during the day and kept giving her drugs to sedate her. I came in tonight and the night nurse didn't want to wake her because of that. But Ava woke up to my delight and she was acting a little spastic which I hear about, but I walked over to her, talked to her, suctioned her trach, changed her wet diaper and she immediately got better. I picked her up and rocked her and patted her back, which I love to do, and she loves as well. She has all these lines from her antibiotics, sedation, and monitors, so it's kind of difficult. I can't wait for the day for everything to be gone and it's just Ava smiling at me. I read her our favorite book "Peekaboo Kisses" which she absolutely stares at and has parts were you can touch and feel. If you haven't seen the book at all I highly recommend it. All babies seem to love this book and they even have a few others, but my little ladies when they were babies, tore the two books we had apart. We put her back in bed in her red seat that helps prop her to an almost sitting totally upright position (depending on how much you prop it up) and I put her monkey around her neck to stabilize her neck and she went to sleep. She kept looking at me when she was trying to fall asleep and it looked like she was thinking "you're not going to be here when I get up and I like you." Maybe she really is getting used to certain people and if we aren't around, she can't help but be sad. Oh how I wish I could care for her 24/7.

Tomorrow they are going to do another bronchoscopy probably in the early afternoon. They are going to put the camera right into the left bronch and spray a steroid right on the spot of her left lung that is bad. They think that it's not getting the pulmicort that she needs because the tube is so small. They are also going to spray another type of steroid onto her left lung that will help clean the lung and get rid of any mucous that is there. This could possibly make her lung grow a great deal, a bit or not at all. Pretty exciting though. Now I feel like we're getting down to business. Coming up with ideas and implementing them.

I also wanted to edit yesterday's post but I couldn't for some reason so this is a video from yesterday.

Last night I found a great podcast from InTouch for Living featuring Dr. Charles Stanley called "The Thrill of Trusting God". It basically told me that if you really, truly believe in God and you have prayed to God to help, and you have had a mental image of the result of your prayer from God, then you must stop asking and thank God for what he is going to do. Coincidentally, a friend of mine told me the same thing earlier yesterday before I even heard this podcast. Now, I'm not sure if I have ever shared this with any of you before, but while I was pregnant with Ava, we were walking out of Target and I turned around to look at my two other little ladies and they were walking behind me in a row, from tallest to shortest, just like little ducklings. I instantly felt like one is missing, and I could just see little Ava walking behind Ariana. I have felt that way for some time and I have shared it especially when I was in the hospital hoping Ava wouldn't come right away. That image has given me faith and a sense that I am supposed to have three living children. God has given me that image and I feel like he gave me one more. I can imagine Ava standing up in front of a room full of people, when she is older, and speaking about her life journey and how God has changed our family and saved her life. I look forward to that day, and hope that you all can be there to see it as well.

Praying for Ava to have peace and thanking God for the miracles he has done and will do for Ava...

Wednesday, November 3, 2010

Day 283

Ava's were 57, 62 and 58. They took her off the paralytic today and she was a bit crabby and they gave her some more sedation. Her shot of Synagis finally came in today. Synagis is a monthly injection designed to help protect preemies and other high-risk babies from severe RSV disease during RSV season. Respiratory syncytial virus (RSV) is a very common virus that leads to mild, cold-like symptoms in adults and older healthy children. It can be more serious in young babies, especially to those in certain high-risk groups like Ava

Ava weighs 6.48 kg = 14.29 pounds.

Praying for Ava's lungs to grow and not need a trach...

Tuesday, November 2, 2010

Day 282

Ava's gasses were 56, 61, and 59. She is still not off the paralytic and she had her CAT scan today. They found that her right lung has still taken over for the left lung but that they right lung looks really good. They said the left lung looks a bit more open but it still is collapsed and the left lung stem looks much smaller than the right. They don't know if she will outgrow this and get better. They think maybe it would help if her left side was facing up and allowing the left lung to spread. I spoke with a lung center doctor that I haven't talked with before and we were going over her CAT scan. We looked back and noticed in May that she had another CAT scan and WOW - what a difference it is. It looks moth eaten and white and grainy while this October and even the August one looks quite clear on the right side. He said it gave him hope. There is a surgery that can be down to take out that bad part of her left lung, but it is very risky and with seeing that scan, he feels better about her lungs growing. They don't understand why the right lung can't compensate and cause the CO2 gasses to be lower. He even said that going 6 weeks without fluid should cause BOTH lungs to be terrible, not one, so he has no idea if that was even the cause of her illness.

I found something on the internet about Johns Hopkins. Does anyone know anything about them? Should we get help from somewhere else? The lung center doctor did mention speaking to other docs across the country. Maybe I can mention Johns to him.

Praying for the doctors and nurses to gain wisdom and knowledge to heal Ava's lungs... Please God...

Monday, November 1, 2010

Day 281

Ava's CO2 blood gasses were all really good today: 63, 50, 52, 46, 42, 63. They got her O2 down to 40%, her pressure back to where it was at 24, and her rate is at 25.

They did a bronchoscopy today to see how her her left bronchi is doing. They found the right lung to look normal and growing well. Her left top opening looked better but the one part of her lung is still collapsed and doesn't look any better. They are planning to do a CAT scan of her lungs tomorrow to see if they have changed and to formulate a plan in moving forward. The doctor says he still doesn't understand why she gets high blood gasses when overall her lungs look pretty good. He also said Ava does not relate to any other baby he has seen before and that he is trying to figure her out. He is our favorite doctor right now and he goes off as the attending doctor the end of the week. Thank goodness he was on this week. I wish he could really be Ava's primary.

I was able to talk to neurology today who told me that the EEG brain waves had slowed in her brain but that was because she was/is on methadone and adivan.

Ava is a bit longer: 61 cm =  24.02" from 59 cm last week and head circumference is 40 cm = 15.75" from 39.5 last week.

Praying for Ava's left lung to grow...