Day 400

Ava's blood gasses were 57 and 47 today! They took the fluid out of her trach and she is still off of her sedation. She gets a little bit of sedation (ativan) every 8 hours now. I spoke to the Lung Center respiratory therapist today and she has no idea when they will decide to put her on the home vent. We also stopped venting her tummy and she had no problem with any gas pains or any pain at all. She even stooled like she was supposed to and didn't cramp up with pain. I let her taste a little bit of baby food peaches and she made funny faces and stuck her upper lip out at us. It was so funny. She did gag a bit even with it being very runny but I think she just isn't used to the taste. Please pray that Ava can use her mouth and tummy for what God intended it to be used for.

Ava weighs 7.36 kg =  16.23 pounds - she went down again, 75 cm long = 29.53" (but that can't be right because last week she was 67 cm),  42 cm head circumference = 16.54".

Thanking God for Ava's contagious, toothy grin and praying for progress towards home and peaceful time as a family...

Day 399

Ava had a good night. She was up a couple of times but was happy and then went back to sleep. She did get up again at 6am and took a couple of naps during the day. Her gas was 57. When we got there at 3pm she did have a lot of secretions again. They think it could now be that the illness is coming up and out of her lungs, but I'm not sure that is the reasoning. The fellow also said they are going to wait at least a week to put her back on the home vent until they are sure Ava is fine with the cuffed trach being down. But they were supposed to check that this weekend. Not sure why we are being told one thing one day and another thing on another day.

We gave Ava a sucker today and she even put it into her mouth. She loved it and it was amazing to see that she could do it. She didn't gag and actually stuck out her tongue to lick it.

Thanking God for Ava's progress and praying that we can get her home before she gets another illness...

Day 398

Ava slept well through the night. Her gas was 62 in the morning and 62 tonight. They stopped her new antibiotic so it is looking like she may have been withdrawing from the fentanyl. She had a lot of secretions last night and tonight too, and they are clear so they think she is just withdrawing. Tomorrow she will be off the fentanyl completely. The doctor that was on today didn't know anything about taking the water out of the cuffed trach during the day. I think that is the most frustrating part of this whole experience with the hospital: the inconsistency of care. Some doctors realized I know what I am talking about, but others don't or don't want to be bothered. I was told on Friday that it was discussed and then this doctor knows nothing of it, but says she needs to be back to her original settings. She is on her original vent settings, but is on 35% O2. She probably can go down, but nobody changes it to 30%. The other day, the doctors didn't know that she wasn't on her original vent settings but the head doctor on this week knew Ava wasn't because I told her that was the case. Thankfully, she realized I was correct.

Thanking God for Ava's patience and praying that we all have wisdom, knowledge and discernment...

Day 397

Ava slept all night again and woke up at 6am. Her gas was 60. She had a pretty good day until later in the afternoon when she was getting mass amounts of secretions out of her trach and needing to be suctioned at least every ten minutes. Ava wasn't acting crazy at all, but just coughing a lot. Her nurse gave her a bolus of fentanyl because they had a very sick patient come into the bed right next to Ava. Of course that is when Ava started acting sick. We are hoping she is just withdrawing from her drugs, but they did take a trach culture and gave her different antibiotics. She was sleeping though even when we moved her bed from that other sick child. I was very nervous that something was going to happen like her dropping her heart rate again when another patient was so critically ill. We stayed late to make sure that Ava was ok. Her heart rate was good and she was pretty tired.

Ava lost weight. She is 7.64 kg =  16.84 pounds so they upped her feed to 42 ml.

Thanking God for Ava's strength and praying that Ava is infection free...

Day 396

Ava didn't go to sleep until 12:30 am, my little party animal. She got woken up early to by the resident who was checking on her. Her gas this morning was 54 and they went down to her normal vent settings which is a peak of 17. Her O2 was 35%.  After they went down on her vent settings her gas came back as 57. She went down to 30% O2 but she was sitting up and satting at only 91% so they put her back to 35%. She slept a little bit this afternoon and went to bed promptly at 8pm. Her sedation is down to 3. We should be off sedation on Sunday. Hopefully they will call us soon to set-up a meeting to go home.

We love having new visitors, our homeschooling co-op and new homeschooling friend has brought us some new visitors and prayers. Let's storm the heavens and have God make Ava vent-free. Feel free to send the blog to your friends. Ava is such a gift from God, we love having people notice.

Thanking God for Ava's happiness and praying that she is happy and playful all the days of her life...

Day 395

Ava had another great day. I hope it's not just because she is being sedated. Her blood gasses were 71 and 67. She was on 40% O2 all day, and then we went down to 35% tonight and is still doing well. They will probably go down to 30% during the night and hopefully put her pressure down to 17 (from 24) either tonight or tomorrow morning. Her fentanyl (sedation) is on 4.

My mom and friend Becky came and changed Ava's trach for their training. They did great and will have to do it a couple more times. Her trach area was extremely stinky, so I washed her up good. Ava was so happy to see everyone. She smiled and gave everyone the "O" face. I dressed her up in her Valentine's outfit and sneakers.

Thanking God for Ava's progress and smiles and praying that the lungs grow right out of the need for a vent...

Day 394

Ava had another great day. Ava's blood gasses were 68, 79, 68 and 70. Her 79 must have been wrong because they took it again and got 68 again. The 70 was taken after they went down on her pressure to 24. Her sedation (fentanyl) went down to 5 and she was in 40% O2 this morning, but is now in 45%. Not sure why it went up. She was satting great when we were there.

Ava loves it when I read books to her. She even turns the pages. Speech therapy worked with her for 45 minutes today and also saw occupational therapy.

Ava weighs 7.86 kg = 17.33 pounds (went down from 8 kg, but that's not a lot for being off food for 5 days), Length 67 cm = 26.38", Head circumference 42 cm = 16.54".

Thanking God for Ava and praying that God continues to heal her lungs...

Day 393 - The Day Ava was supposed to come home...

Ava's back and SMARTER! Her blood gas was 68 all three times today. They went down on her breath rate to 10 and down on her sedation of Fentanyl to 6. We should be off the sedation by Friday and back down to her normal pressure support by then as well. She is on 26 PC above Peep and needs to get down to 17, but only 10 of those breaths are the 26 so she should definitely be able to handle it. She is on 40% O2. For being on sedation, she is so unbelievable. She did take two naps but she was rocking and rolling the rest of the time.

She was such a ham today. Making faces, noises, playing with toys. I didn't see her mad at all. I finally got to hold her since it's been over a week. It was wonderful. My arms were yearning for her and she fell asleep against me. She kept looking above her crib and to the right as if she was looking at something all day. I wonder if it's angels. I have never seen her looking like that before and there really wasn't anything to look at besides wires.

Praising God for all the work he has done on Ava and praying for Ava to come home and to show everyone the plans God has for her...

Day 392 - 13 months old!!

Ava's gas was 55 this morning and they decided to take her off the paralytic. By the time I came in she was given a bit more sedation because she was getting upset a little. I came in and told them that she should go down on her breaths per minute because she fight the vent for a breath. So they went down to 20 bpm and got a gas of 67. She is in 45% O2. She woke up for me for a bit and was actually trying to make the "O" face for me and then was even blowing raspberries at me and trying to talk. I was wiping out her mouth and she was holding her suction catheter and suctioning her mouth out. She is so amazing. She started getting a little upset and pulling the vent off so they sedated her a bit more. As of now, she is sleeping and hasn't needed another sedation dose besides an additional one she had at 5:30 pm.

Thanking God for Ava's progress and praying that we can get Ava home soon and that she will never return to the hospital for any illness...

Day 391

Ava had a decent night and day. Her gas was 55 then 49 later in the day. She is still paralyzed but she got down to 40% O2 but had to go back up to 45% because she was satting in the low 90s. Tomorrow they are going to try and take the paralytic off.

Thanking God for Ava's primary nurses and praying that we can continue to have great nurses take care of Ava for the rest of the time that she is at the hospital...

Day 390

Ava's gasses were 88 and 69. She is still in 60% O2. They decided to go down on her breath rate to 30 because it took her so long to exhale and to go up on her pressure to 26. That is when she went down to a blood gas of 69. She was satting all day from 91-93% but is 97-100% tonight.

They took more cultures of everything again - like her urine, trach and blood and nothing has come back yet. Her trach secretions looked to be thicker so they may grow something and we can give her the appropriate antibiotics instead of "Bactriban" that she is currently getting. There is a new doctor on this week and hopefully she won't just let Ava lay there paralyzed all week.

I was just watching "Charlie St. Cloud" and he had to have chest compressions because he flat lined from a car accident. In the movie, the paramedic that saved his life said that he was given a second chance and that God had plans for him. Ava has been given two second chances and obviously God doesn't want her to come home to him. I'm not sure what we all have to learn from Ava, but hopefully Ava's life will prove to be a long and amazing experience for her, us and our Lord.

Thanking God for letting Ava be with us and praying that her life is long and fruitful...

Day 389

Ava's blood gasses were 53, 58, and 60. They went down on her pressure to 22 from 24 and they got the 60, which is ok. She is still on 60% O2 and surgery finally allowed her to eat. She was on 15 ml while I was there and they go up 5 ml every 2 hours. She should be on full feeds by morning and she is tolerating it well. They may take her off the paralytic tomorrow if we can get her down to her normal settings.

I spoke to Ava's fellow at the hospital and the Lung Center doctor and RT today. They told me they think she has another trach infection besides the one we have been treating as well as possibly had a viral infection. They said that a trach change would not change the current situation and that we cannot change it while she is paralyzed. I asked the fellow to call me daily while we are in these type of situations and if Lung Center can call twice a week. Lung Center said that was unlikely but they are relinquishing control while Ava is in the critical state to the PICU.

Thanking God for Ava's strength and praying that Ava has peace and we can all have relief and her home safe and sound...

Day 388 - An extremely frustrating day...

Ava had a normal night since she was paralyzed. Her gas was actually 44 and twice we got 53 today. She was on 55% O2 but she had to go up to 60%. They think she is getting better because her lung and tummy looks better. But she needs 60% O2 instead of the 50% yesterday would tell me that answer is a no. Surgery would also not clear her tummy so she can have foods because she has not stooled yet. She is getting IV fluids, but I don't believe that would help her to stool. Food would help. She will be going 4 days without food tomorrow.

I am actually sickened by the lack of knowledge that the doctors have about Ava. I told them that she has been having problems exhaling since Saturday and the only doctor I spoke to today had no knowledge of that. Of course I find out the doctor is off tomorrow and done with her week today (since she is off). She had no answers but kept going between her tummy being extended to her left lung being slightly collapsed. I am very disappointed that they are not trying to find out more or just try and change the trach. It is due on Friday for a change. There is no reason not to. We are not finding out any real reason and with the up of her O2 she seems to not be getting better. Lung Center doctor (who is just coming on service and hasn't had Ava in months) says she is being ventilated well so we don't need to change the trach. I would understand that to be the case if she was sick, but we are not finding that to be the reason. I asked to speak with our "primary" Lung Center doctor today but he was busy. I am so upset about Ava's care and the lack of communication that I couldn't come in tonight. I am fearful for her life and I feel such a heavy weight on me as if this is totally wrong and I am supposed to be doing something about it. I feel that there is something else wrong like the trach. I'm not going to pretend to know what it is, but they will not listen to me. There is such a disconnect as if Ava is not my child, but rather the hospital's. If she had been home, they would listen to me, her parent, more. Her pediatrician would be looking up what could possibly be the problem. If only they would listen and explore the other ideas. They don't even understand where the origination of the belly film (which I was asking for on Sunday, and they wouldn't do) came from or the change of the trach. And why we only changed the trach and were going to go back to it, if there was a problem. The trach should have never been changed.

Thanking God for Ava's fight and praying for relief and for God to give our family the answers we so desperately need...

Day 387

Ava had a good night and the night nurse thought for sure she would be able to come off the paralytic because she was wiggling around so much. She is down to 50% O2 and her blood gasses were 58, 81 and 63, and 44. She is still not eating because surgery is looking at her belly films. They took her off the paralytic later in the day, and she started sounding weazy and when she exhaled it was very awkward and long. It took her a while to exhale. I tried to get them to change back to the original 5.0 uncuffed trach because the day we changed it to the 5.0 cuffed trach we started having troubles and we are not finding anything wrong. The fellow on tonight said he would talk about it on rounds but unfortunately they wouldn't do it. My theory is that she is not used to not having a leak around her trach and she doesn't know how to breath with all the pressure that is now on her lungs and not coming out from around the leak. Hopefully tomorrow, we can get that changed. If we are not finding anything else as the problem, there is no hard in trying to change the trach. That was the whole point to why we only changed the trach and didn't do anything else on Friday. That way if something was wrong, we could correct it by going back to the old trach.

Thanking God for Ava and praying that the doctors and nurses have wisdom and knowledge...

Day 386

Ava's blood gasses were 66 and 65 today. She still is on 60% O2, 35 bpms and is paralzyed. She had two scans of her belly done and one showed a lot of gas in her intestines. It did move but we don't know how she got all of that gas. They are going to another xray to see how it is and compare in the morning. If nothing turns up they will do a bronch on her. We still don't have answers which is scary.

Thanking God for Ava's strength and praying that Ava is protected...

Day 385

We got a phone call at 1:30 am saying that Ava had to be resuscitated with chest compressions. This is the second time her heart rate dropped, but this time she had no pulse. Her heart rate and O2 saturations went to 0, so technically she was dead. Thankfully she was able to come up after chest compressions and being bagged. She popped off the vent and must have been crying. The nurse came over, not sure how long, and saw that her O2 saturations weren't registering on the monitor so she gave her an extra 100% of O2. The monitor showed 80s but then it decreased down to nothing while she was being bagged.

I came in and got to the hospital around 2:30 am and at that time they were putting a peripheral line into her groin to sedate and paralyze her. We thought her blood gas was going to be ok and then we were going to get her off the paralytic, but unfortunately her gas was 112. Her gassed during the day were as follows: 111, 96, 93, 76, 115, 73, 76 and I believe I am missing a few. She was on 30 - 40 bpms per minute and 60% O2. Her pressure over peep was 22 then 24. I stayed with her until 7 am and went home to bed. She was pretty good during the day just being sedated a bit. We still don't know what is wrong with her and she had a few desaturation episodes when we were with her tonight, so now she is totally paralyzed. Ava also is retaining fluid, her poor eyelids are bright red and swollen and she is not allowed to eat.

We really can't believe this is happening on Day 385 and we feel so bad for Ava. No baby should be going through this and to have two of those phone calls coming in during the night is something no person should ever experience.

Thanking God for Ava's life and praying for relief and an end to all this chaos...

Day 384

Ava slept through the night but she was a little bit irritable during the day. Her O2 saturation was hovering in the 80s at some points and I saw her heart rate be in the 170s. We don't know if the trach is too big with the cuff although it is very close to the actual uncuffed trach.

Ava loved seeing Alexandra tonight and when Ali was playing with Ava, her O2 saturations were even 100%.

Thanking God for Ava and praying that Ava gets better soon and comes home to us...

Day 383

Ava slept really well last night and had a great morning. She was happy and smiling. They decided to change her trach back to a cuffed trach because she has so much air leaking around her trach when she sleeps. We will put water in the cuffed trach when she sleeps and take it out when she is awake (in case she pulls the trach out). Occupational therapy was able to come by and work with her today. Ava got stuck 5 times tonight to try and get her an IV. She loves to wave her arms and legs around so much that it knocks the IV out. She needs the IV right now because she gets her antibiotics through the IV.

The tentative plan from what I heard is to put her back on the home vent Monday and make sure this new trach works all next week and then two weeks from next Monday (not this Monday) Ava can go home. I'd rather not wait another week because we might lose the nursing. But either way, it puts us back 2 weeks.

Ava weighs 8 kg = 17.64 pounds.

Thanking God for Ava's growth and praying for those lungs to grow even more...

Day 382

Ava is doing much better today. They found out she has a trach infection and started her on IV drugs. She slept pretty well during the night. She was supposed to get weighed today, but she didn't. She also had a temp a couple of times during the night and day, but it eventually got better later on. She is on 50% O2, but has been down to 40%. They are looking for her her O2 sats to be normal before they put her back on the home vent which will probably be Monday.  She did go down to 10 breaths per minute because they think she is exhaling when the vent is giving her a breath so she is working against it.

Thanking God for Ava getting better and praying for continuous protection...

Day 381

Ava's back on the conventional vent and she is on 100% O2. Her blood gas was 78. They also gave her antibiotics but they still don't know what's wrong with her. They gave her Ativan to help settle her.

Please pray... we were only a week and a half away from coming home...

After she woke up from the Ativan and they had given her a different dose of antibiotics, she was much calmer with me. I held her for a while and she slept all night and had no desats...

Thanking God for Ava being calmer, and praying that she is healed quickly...

Day 380

Ava had a good night and she slept most of it until she pooped and then she got washed up. During the day, it was another matter. She was not happy at all and had numerous desats. I guess the Respiratory Therapist who is a manager, decided to put her Peep (Positive End Expiratory Pressure) up to 12 to see how she would do without consulting Lung Center. They thought she did better but they must have went back down to a Peep of 10. I heard about this later tonight when I came in. Around 3:30 she needed to go up in her O2 because she was satting in the 80s so they went up to 4 liters which is around 60%. I think this might have coincided with the time they were changing the peep and in a minute, I'll tell ya why. When I got there tonight, Ava was pretty hysterical and satting in the high 70s and low 80s and we couldn't tell if her pulsox was even working because Ava looked pink as can be. I eventually thought about changing the trach, which we did and there wasn't anything clogging the trach but Ava still looked to be having a hard time breathing. I went over to her vent and made sure all of the vent tubing was on and wasn't leaking and that's when I noticed her peep was hovering at 8 and maybe go up to 9. With all the days we have been at Ava's bedside, I don't ever see her peep hover at 8. With each breath on the home vent, it changes different stats and I usually see it move between a peep of 9 or 10. Ava's nurse and a transport nurse was right there and I moved the peep knob (which we have been trained on to do multiple times and we will be doing at home) a few turns to a peep of 10. You could immediately see a difference with Ava and her sats started going up to low 90s and her breath rate went from 60s to 70s down to 40s and 50s.

I had the fellow that is on, call for a Lung Center doctor before deciding to put Ava back on the home vent. He was on the phone with a Lung Center doctor and I was hoping it was Ava's primary Lung Center doctor. When the fellow came over, I told him quickly while he was on the phone about the peep change and he told the Lung Center doctor. The Lung Center doctor promptly told him to not have Ava's mother change the peep or touch any vent settings and he was very irate with the PICU staff for letting me do so. I found out afterwards, it was not Ava's primary. I do believe this doctor did not understand that Ava was not on the correct peep, and he thought I was just changing vent settings. I am disappointed that a doctor that cares for my child and who knows that we are getting ready to take Ava home in a little over a week as well as had numerous training lessons on the vent, would assume that I would "mess" with the vent. I was the only one troubleshooting. The Lung Center doctor wanted to put Ava back on the conventional vent since we can't make any changes on the home vent. But thankfully, we didn't have to move off the home vent, since her sats were in the 90s and her breath rates were in the 40s and 50s and her heart rate was in the 130s when she was sleeping, 150s when awake.

Her white blood cell count was 17.5 up from 12 but that can happen because she is getting a stress dose of steroids. I will know tomorrow if she is going to get any antibiotics. She is now getting her immunoglobins transfused. I was also there to help Ava get her IV and she did really well when they were putting it in. I sang to her and played Sesame Street and she cried only a little bit. Hopefully her immune system will get quite a boost and she can fight off whatever she has and be back on her way home to us.

Ava weighs 7.98 kg = 17.59 pounds

Thanking God for helping me care for my daughter, and praying that Ava can fight off whatever is going on and stay off the conventional vent and get home...

Day 379

Ava had a rough night and her blood gas came back at 139. They got the gas a different way than normal so they really upset her. They retook it and it was 79. A chest xray was taken and the upper left side of her lung looked a bit collapsed, but not horrible. She got another blood gas after going up in her breath rate to 24. They also gave her a higher dose of steroids and she is on about 2 liters (38%) of O2. Allergy and Immunology came by and decided to give her transfusions of immunoglobins once a month until probably June to fight off any sickness. Once she is home we will have to come in once a month and get Ava transfused for about 5 hours. I guess I would rather feel a bit more safe that she can fight off illness. She got another gas later this afternoon and it was 69. I'm so glad she got better and they didn't have to put her back on the conventional vent and no paralytic as well. She did not have a urinary trach infection either.

We had the doctors check out the fluid on the back of Ava's head and they are going to do an ultrasound in the morning. Please pray that it is fine. They think it isn't a major problem.

Anthony and I did our "bunny" run where we took a stuffed bunny with a trach out to the car with the stroller and load the bunny up into her car seat as well as her vent, pulsox machine, O2 tank, suction machine and diaper bag. We did not fit the greatest and we think we should get a bigger car. We could never fit, Anthony, Alexandra, Ariana, Ava, a nurse, myself and all of Ava's equipment to go anywhere. We were planning on waiting a bit because Ava would only be going to the doctors for a while, and the girls won't go with us, but it is so difficult to even fit Ava. Please pray that we can find a vehicle that we can afford to fit all of us, as well as Ava's equipment and nurse. The Lung center respiratory therapist would pull off parts of her circuit and we would have to find what came off the vent and put it back on while the vent would alarm. What was funny as we were strolling down the hallway with all of our equipment in the stroller and the bunny, is that no one realized we had a stuffed bunny in the stroller. They would look at all the equipment and never notice the bunny.

We have a meeting this Thursday for Ava's discharge and hopefully she will be ready to come home.

Thanking God for humor during our rough day and praying that Ava feels better soon...

Day 378

Ava had a really rough night. She was up just like the other night I stayed - every couple of hours down to every 15 minutes where she would desat and the only way to get her rest was to bag her. I was exhausted by morning, and I am nervous bringing her home. I did feel a bump in the back of her head filled with fluid but they don't think it's a problem because maybe it's just the part of her skull that is still open from being a baby. The rest of her day was rough and she slept on and off. Hopefully tonight she sleeps well.

Last night, I was holding Ava and her vent tubing popped off Ava's trach and fell onto the floor. I bagged her while I waited for the RT to come put new tubing on. After he put the tubing on, and Ava was fine and back in bed, I noticed he had put the tubing on the wrong way. Since it was my night, I thought that Lung Center was tricking me to see if I noticed it was wrong. But they actually hadn't, it was actually on wrong. Thankfully it doesn't change anything when it is on wrong.

Thanking God for Ava's ability to fight and praying for Ava to be calm and get better fast...

Day 377

Ava had a ok night. We had her ears checked and she has an ear infection in her left ear so she was put on amoxicillin. We need to watch her on that since Anthony and Alexandra are allergic. She is off any type of aid to help her stool so she is doing it on her own. She is having her desats pretty frequently when she gets mad and was sleeping pretty much all day.

I am staying the night tonight until late morning. Hopefully it goes well. I didn't end up being on the radio. They must have been too busy.

Thanking God for Ava's strength and praying that she can grow her lungs strong so she no longer has desats...

Day 376

Ava had a rough night and day. Her runny nose got worse and her 4 teeth at the top are finally starting to push through. My poor honey! She had a blood gas of 70 today and hopefully will have a better blood gas tonight. She has had so many desats today to even count.

I was asked to possibly talk on the radio for the "Kiss Cares for Kids" Telethon and tell Ava's story. They are also going to raise money so we can stay a night at the Hyatt. The Children's Hospital Foundation and Stone's Buddies is just plain AWESOME! I am so surprised by the support we are being given and that I never knew existed.

Thanking God for all the help that we have been given and praying that Ava feels better...

Day 375

 Ava had a good night with her usual desats when she stooled. We are really thinking she just wants some attention during the day and until she gets it, she pulls off her vent and desats.

My mom and I had our CPR training as well as the suction machine together today. Tomorrow is more training on the vent and with the battery and the machine that tells us her O2 saturations. I am going to stay the night on Saturday for my "official" night where I have to handle all of Ava's care. Monday is our "bunny run" where we take a stuffed bunny out to the car and the respiratory therapist pulls something on the vent to make it alarm and we have to fix it. Thursday is our meeting to make sure we are ready for discharge. Next Saturday, Anthony goes in to do his "official" night. At that point, once we get the supplies we should be ready to bring Ava home.

Ava weighs 7.8 kg = 17.2 pounds. She gained a lot. Hopefully she isn't full of you know what. Her nurse during the night said she had cleaned herself out pretty good.

Although I am nervous to bring her home, she just loves us being around her and I get very excited to bring her home. I can barely imagine having Ava in our house every day and letting her roll around on the carpet, having control over how Ava is raised, trying to get her to push her feet off the floor and help her to sit up.

Thanking God for this opportunity with Ava and praying that it goes smoothly...

Day 374

Ava woke up a couple of times last night upset. She had a few more episodes during the day as well, but her nurse thinks it because she wants to be held. Of course this is happening on a day with bad weather, so I couldn't come in to see my angel baby. I did get her room set up and my Dad helped me put together her crib. I was definitely getting excited putting her bed together and hanging up her clothes.

Thanking God for Ava coming home and praying that all goes smoothly...

Day 373

Ava had a great day. Was a little fussy but her trach needed to be changed because it was slightly plugged. It got changed last Thursday, so it had been 5 days. Something to keep in mind that it can make her unhappy because her airway is smaller. Ava went up to 40 ml of food. The GI doctors don't think there is anything abnormal with Ava's tummy. Just that she has a lot of gas so we think we should give her mylicon around the clock.

I spoke to another mom about having a critical care child and we discussed the home care nurses. She used to use our agency that we are going to be using, but now she uses Medicaid nurses. We did have an offer from the nurse that has taken care of Hunter Kelly to take care of Ava one day a week. Unfortunately, our home care agency will not work with Medicaid nurses. I have heard different things like it's our decision since Genesee County allows private duty, but I also heard that they can decide to come off our case if they don't want to work with private duty nurses. We do have 1 full time night and day nurses and 2 night nurses and 1 day nurse when needed. This can change if they get a client before Ava comes home. We should get definite answers for nursing next week since it will be 2 weeks that Ava is coming home.

Thanking God for Ava's strength and praying for Ava to grow her lungs and for great home care nurses...