Day 878 - Breathing without a vent...

Ava had her "capnograph" test on Tuesday night this week. She was off the vent all night. We didn't officially get the results until today. Ava is now officially off the vent 24 hours a day. Thank you God! Her median O2 sat was 95 but that is also for when she is moving around and her pulsox drops (not because of Ava, just because of her movement). It's hard to believe how far we have come in one year. She just has to thrive and grow a bit and then hopefully the trach will come out. Hopefully she will keep the weight on while she is walking and crawling all over the place.

Ava weighs 12.50 kg = 27.56 pounds.

Thanking God for Ava being off the vent and praying for her to eat and be trach-free...

Day 867

I called Lung Center and they decided that we should stay the same amount of hours. If Ava isn't sick and still doing great, she will take another monitoring test next week. She will go off the vent all night! 24 hours in a row and no vent for Ava! Please pray that it goes superbly well.

Thanking God for the gift of Ava and praying to be trach-free soon...

Day 860 - 6 hours off the vent...

Ava got the ok to go off the vent for 6 hours today! Once we are good with the 6 hours, we will take another test to be off all night! We are moving full speed ahead. She also is gaining weight as well.

Thanking God for Ava's progress and praying for her to eat and not gag...

Day 856 - Being tested...

Last night Ava got tested for her CO2 levels and O2 levels while she was asleep off the vent for 6 hours and on the vent the rest of the night. We found out today that she did really well and we are now able to be off the vent 6 hours at night. Less than 6 hours to go! Praise God!

She actually satted above 97 and her CO2 levels didn't go over 44. Most of the time were in the 30's. That is very good. We know she will do great on her next test which will be off ALL night in a couple of weeks.

Thanking God for Ava coming off the vent and for great test results and praying for Ava to eat...

Day 854 - Lung Center

Today was a hard day but thankfully we are still moving forward. We went to Lung Center and after ENT saying that we would definitely be decannulated this summer, Ava's doctor said that it might not be until November. This was quite shocking and I broke down into tears. Not because I "must" have Ava be without a trach, but rather because of our lack of nurses as well as the daily judgements I receive from the ones we have. We are quite often without night nurses and we are told this hours before that's the case. Or make that even minutes before they are to be at our house.

The doctor did decide to have Ava tested over night on Wednesday night to see if she could go off the vent for 6 hours (half the night). If she does well, we will be able to keep her off those six hours. He did say that if everything goes well, we should be off the vent by mid-July. They also would like to get a blood gas to see how her CO2 levels are.

Thanking God for Ava being off the vent and praying for relief and her to be vent and trach-free...

Day 849 - Syracuse

Ava has been doing great. Yesterday Ava had her last IVIG. Her IgG level came back as 733, which is good. We will be getting a blood test in July and August, and if her levels stay higher, we can stop the IVIG hopefully permanently. Her IgA which shows her immune system stats in the long run also went up. This shows that she shouldn't have a permanent problem with her immune system.

Today we went to GI in Syracuse, NY. We first went to the Feeding Clinic and the speech pathologist gave us quite a few suggestions. For example, a larger spoon, more real food like bananas, and mashed potatoes. She also suggested skipping stage 3. This is definitely the hardest part for Ava. She has been keeping most of her food down. We just sometimes have irregular spit ups. The GI doctor said that isn't reflux. We will also re-evaluate her digestion after she is off the vent, hopefully in September. We will go down in her Eryped med and then get another test done in Rochester.

Everything is going really great and we also got approval to go off the vent for 1 hour after Ava is sound asleep. Keep praying... We need it. Ava has a Lung Center appointment next Tuesday, the 5th.

Thanking God for Ava's amazing progress and praying for Ava to be off the vent and decannulated...

Day 835 - ENT

Ava had her ENT appointment this morning. We had to wait an hour to be seen and Ava was such a good girl. It's unbelievable how patient she is. The ENT saw her and gave us a prescription for the 4.0 trach, a 3.5 trach and a cap for the trach to be used once she is completely off the vent at night. He didn't even have me schedule another appointment, but rather told the receptionist that I will call her to set up the overnight hospital stay for decannulation! Amazing!!! Our dreams are coming true! Thank you God! Now, just to get her off the vent at night, stay healthy and get approval from Lung Center.

Lately, she has even been telling us that she needs to go potty and actually goes! She also lets us know when she has a wet diaper.

Ava now weighs 12.15 kg. We are giving her 200 ml 3x a day and 100 mls at 10pm when she eats her 6 oz of food. We are back to giving her the Pediasure at 9am, 12pm and 6pm which is what GI wanted. The 9am feed really seems to get in the way of therapies and I am concerned that it might affect how much she eats during the day, but we'll see.

Thanking God for Ava and praying for a great summer...

Day 832

 Ava got to go to Fantasy Island on Saturday and stop at a friend's birthday party. It was a really great day and we all had so much fun. On Mother's Day I got Ava to eat 6 oz of food and drink milk from a glass. She was so excited to be eating like a big girl.

I spoke to Lung Center today as I do every Monday and the RT seemed very excited that Ava should be able to come off the vent and be without a trach by Fall. I told her about how I scared the new night nurse by training her if Ava's pulsox drops and how to react. Of course not even 10 minutes after I told her what to do, the pulsox numbers dropped and the nurse thought that something was wrong. It was just the pulsox but she didn't understand how stable Ava is. Ava's RT said that hopefully we won't have to worry about nurses much longer since Ava will be off the vent/trach. We still don't have a nurse on Saturday nights and Sunday days. And of course those random times of call-ins or illness.

Thanking God for Ava's advancements and fun and praying for those Lungs to keep on growing strong and healthy...

Day 829 - Therapies

Today we met with Ava's therapists for her annual review. A year has gone by and what an amazing year it has been! She was laying on her back, unable to roll or sit up and now she can cruise on furniture, crawl all over the place and try to run while we hold her hands. She is also eating Stage 3 baby food now. We have finally made it past the Stage 2! Praise God! We are also working on her crunching on some puffs. If she can eat 6 oz. we will be able to go down on her volume of food.

Thanking God for a year and praying for many more years of joy to come...

Day 828

After the phone call with Lung Center the other day, I called our Pediatrician and discussed Ava with him. He also feels, along with ENT that she is doing great and it seems that she does not need a trach anymore. Of course that decision is based on her lungs and the Lung Center. I had to ask Lung Center a question about her ambu bag and I decided to ask the ultimate question "Is decannulation a word even thought about when it comes to Ava this summer?" The reply was "Yes, as long as everything continues to go well." Well, that was a major relief and exciting. We still don't have a sooner appointment, especially since the doctor is away for two weeks.

Thanking God for Ava's ability to breathe and praying for decannulation this summer...

Day 825 - another 4 weeks

Today we got some news that Lung Center wants to wait 4 weeks before they make any additional changes with Ava. That means no going off the vent at night. We are still off during nap time. We really don't know what it means. Does this mean they aren't talking decannulation this summer? Are they only going to go an hour off the vent at night every week? That means it would take 10 weeks which is past August to get her off the vent. Ava also needs to go down to a trach size of 3.5 from the 5.0 that she currently is on. We have to wait until her appointment on June 5th and she is not supposed to have any illnesses which includes asthma. Asthma is considered an illness to them. In our area, the pollen count is high and Anthony's even been having trouble with asthma. It's really frustrating because we know how well Ava did while she was sick and how great she is doing now. In order for Ava to develop mentally and physically, she needs to start experiencing the world, and if she can't get sick, it's a pretty scary world out there. Please pray for God's guidance. He is in control, but he certainly is giving me the will to fight for over 825 days for my baby.

Thanking God for Ava's strength and praying for more strength for all of us...

Day 824 - Ice cream

Today Ava ate her first ice cream cone. She has had tastes of ice cream but never held one in her hand and put it to her mouth. She knew what to do from the get-go. She wouldn't open her mouth much, but she would get some in and all over the place. It was really fun and messy.

Thanking God for these special moments and praying for Ava to be decannulated...

Day 822

Ava is doing much better and she is keeping her mixture of Pediasure and Pedialyte down. Her stools are still very loose but her lungs seem back to normal. We actually took her to the Albright Knox Art Gallery for a bit this evening. I was part of an art project where the art gallery randomly chose 150 people to be part of this painting. My response to questions and chosen artwork will be created into a 2' x 2' painting which will then be part of a much larger painting of all the 150 "people" panels. You may still be confused but it was very interesting and it was incredible to be part of a piece of artwork that will reside in the art gallery for years. I'm sure I will never have a piece of artwork hanging on the walls created by myself, but it's certainly a dream, so this little bit of me will be. Maybe someday one of my girls' artwork will be hanging on the walls...??

Anyways, back to the family being at the art gallery - Ava had a great time and even had a sucker that she watched her sister's eat and thoroughly enjoyed herself. The little things that she does that is "normal" now seems like such an incredible miracle.

Thanking God for times together as a family and praying for many more...

Day 819

We took Ava to see her Pediatrician today because she was throwing up. She has a GI bug, worse than her sisters had. We actually missed Lung Center as well today and can't get back in until June 5th. This is not good news. She is still on steroids until next week and her overall outlook is good. Her stools also are explosive and extremely loose. I'm not really feeling like this is God's plan, but rather an attack but we are moving ahead and Ava is able to handle being off the vent during the day. Her sats are around 93 and since we want her to get better faster we have been giving her O2 to help her at night. We don't think think it's Rotavirus like she had a year ago, but we are on top of things and hopefully no CPR will be needed like last year.

Thanking God for Ava's progress and praying she gets better fast with no other illnesses...

Day 815

Ava went to Immunology today. They are very excited by how Ava's doing. We are going to get IVIG today and then another dose in May and we are going to stop it at least until September. She will get blood tests June, July & August with hopes that she will keep up her IgG level above 500, which she has been. We are also going to switch from Bactrim to Zythromycin because Bactrim is photosensitive and Ava will hopefully be outside all summer. She will only have to get Zythromycin twice a week from end of May to September and then at our August appointment they will re-evaluate that as well.

Ava has been a little bit off lately with her heart rate being higher while she sleeps and belly breathing until she needs albuterol. I think she is getting asthma. Please pray that we can find answers and she is relieved. She also has been spitting up her feeds again. Last night she did it all three times. The heater unit on the vent also broke, just like the time that she almost was drowned by her night nurse. Gratefully, I was able to do it with ease and no drowning occurred.

Thanking God for Ava's immune system growing and praying for her to get stronger...

Day 816 - Ava has asthma

Ava was satting lower 90s today and her sleeping heart rate was low 100s, when it's normally 50s - 70s and satting high 90s. She was needing albuterol every 3-4 hours just like Ariana, so I decided to take her to the doctor to make sure it was nothing other than asthma. The doctor checked her out and confirmed that she was having asthma symptoms. We will be on steroids for 5 days as well as albuterol whenever she needs it. Just like Ariana and Daddy. 3 out of 5 Hackett's have asthma. Please pray that my babies can be rid of it.

Thankfully, Ava has handled it without needing the vent and very little, if any O2. She just needs the albuterol.

Thanking God for Ava's lung strength and praying for her to never need a vent again...

Day 807

Today we got approval for Ava to go off the vent during nap time. The doctor did tell the respiratory therapist that before we go off at night, that we would need to come into the hospital to watch her sleep without a vent. I'm hoping we can do that early May before we go see ENT on May 17. We are hoping that once we are off at night completely, the ENT will reduce the size of her trach on May 17. Please pray that this could happen. We are going so often without nursing and with Ava doing so great, it would be incredible for her to sleep without a trach and for us to take her in the car without an extra person.

Ava has been pretty stable lately with the three feeds at night. Not gaining any weight but eating pretty good orally during the day.

Thanking God for Ava's lung growth and praying for help...

Day 802

Sorry for the delay in posting but it's been a crazy couple of weeks. Today we went to see the eye doctor for Ava's annual visit. He told us that she has a slight stigmatism but it shouldn't be an issue. She is still far sighted which is normal for kids her age. We don't have to see him for TWO years! Praise God! It's such a miracle.

Check - another doctor off the list (for two years).

Ava is still having a hard time keeping her food down and we now have all 3 feedings set to nighttime at 220 mls per feed, down from the 250ml. I wish we could figure out what is wrong.

Thanking God for Ava's beautiful eyes and praying for her to eat properly and not spit-up...

Day 796 - A year ago today Ava came home...

A year ago, Ava came home to be with us. If you read back to a year ago, the next day she started getting sick and she need chest compressions by that Saturday and again the next Wednesday. She ended up having Rotavirus and quite a few of the hospital staff doubted that we could handle Ava being home. Fast forward to now, and we have not been back since April 28th of last year. We have conquered illnesses (even RSV) and kept her at home. It's been hard, but we have been taught well, have the tools like O2 and have had great day nurses and of course our wonderful friend and ICU nurse who has even come from Canada to eagerly help.

Ava has brought us so much joy this year. She is so excited to be alive and we all love how she waves her hand around to say "yes!" and bounce on her booty to show her appreciation. A year ago she couldn't even sit up and she was totally ventilator dependent. Today she is off the ventilator, walking in a walker and signing "mama".

I found out today that Ava's immune system is the about the same as the last time we tested her blood. Her IgG level is 730 (this is good) but her IgA is at 19, which should be atleast 24. It has increased since last year, but not in the last few months. She is still a bit behind in her immune system. Please pray that we can get her immune system to be exceptionally well.

Thanking God for Ava being home and a year and praying for many years of joy with Ava...

Day 793

Today we had Ava's bronch done. We had to be at the hospital by 6am which meant that we had to wake up Ava extremely early. But she was as happy as can be and very much excited to be going somewhere. We got there and surprisingly the hospital had no current info on Ava in their computer. They didn't actually even know when she was discharged. So we gave them all her updated info and we were the first visit of the day for the ENT doctor. We were in there about 7:30 and done in less than an hour. We only could walk Ava to the door and then they carried her in. She didn't cry but looked back and enjoyed having an audience. She is such a ham. She loves to sign to everyone and blow kisses. The doctor came out to speak with us after he was done and he told us that she looked "Fantastic". He even said it three times! He said that sometimes the trachea can narrow or have scarred tissue and she had neither of that. Her airway used to be "floppy" as well and that is no longer the case. He said that she no longer needs the ventilator, but we just have to continue following the weaning process that Lung Center gives us. I let Lung Center know and we should be able to wean her at nap time on Tuesday.

When we got home Ava was extremely tired but she really wouldn't take much of a nap. By 4:30pm though, she passed out in my lap and her O2 saturations were hovering around 89. I took her up to bed where she slept for 5 hours and I put O2 on and called the doctor. He said this could happen sometimes with anesthesia. When she was under anesthesia last August we didn't have problems, but this time we did. She was fine after she woke up and no longer needed anything since that point.

We are very excited and hoping that she will no longer need the trach by the end of summer. All signs are pointing to yes. Praise God!

Thanking God for his promises to us and praying that Ava is healthy...

Day 790

We don't have a nurse Friday night, Saturday night, Sunday day. Thankfully our incredibly awesome nurse & friend from the ICU is working Sunday (she reads this blog hee-hee) and Monday night I had to beg our nursing agency to put our night nurse on an extra night. Thank goodness because we found out today that we have to be at Children's at 6 am on Monday morning. Which means we have to leave at 5am, which means we have to be up around 4am. ;) So much for sleep this weekend. This is one of the major reasons we need Ava decannulated sooner rather than later. We can actually sleep at night! Maybe it wouldn't be sound because I would still have a pulsox hooked up to her for a while, but with our lack of nursing for almost a year now, not to mention the agency being rather rude almost daily, it would bring great pleasure to eliminate that huge problem. I should calculate how much time I spend on the phone with them in a week. Maybe I really wouldn't want to know. lol.

I'm a little nervous about the bronch at the hospital, being that the hospital is still busy, and I really don't want Ava to get sick. Please pray that everything goes well and we can find out her trachea looks great to go ahead with decannulation in the next few months. I will probably drive all the nurses/docs crazy making sure their hands are clean. But it would be worse if we were back there. Then I really would be sanitizing everyone and thing...

Ava is doing really well with her orthotics and sneakers. She's getting very close to standing by herself. She is also eating a whole organic pack of food at one feeding time. We are also going to go to GI in Syracuse and their feeding clinic in May to maybe see if they have any more advice about getting her past the texture of solids and not gagging.

Thanking God for Ava's bronch on Monday and praying that she is safe and we have great news...

Day 787

Today we went to Cardiology and Ava had two tests done. One was an echo and they found that the hole in her heart has closed. So now she can go deep sea diving and fly a jet when she is older. ;) Awesome news! She has come so far! Do you remember on Day 12 when Ava's hole in her heart had reopened? She is doing incredibly well. We only have to go to the cardiologist a year from now. He affirmed that Ava is completely a miracle and that he wishes he could replicate myself and our family. He said they have moved to the back of the bus now when it comes to the "bus load" of doctors. It's awesome to think that one of the body's major parts is now no longer much of a concern for us. Praise God!

We have went down to 220 ml of food for Ava and are keeping the feeds at 4am, 12pm and 10pm. The GI doctor also recommended to go off Eryped for 5 days and it should help it work again to help Ava's digestion since she has been spitting up.

I also spoke to Lung Center yesterday and we have to wait 2 weeks to start going off the vent at nap times. Which of course ends up being the Monday after Easter and they are off that day.

Ava also is back to weighing 12 kg = 26.46 pounds. She is 85 cm long = 33.46".

Thanking God for Ava's amazing progress and praying that she will be vent free and trach free a year from now...

Day 785

The next couple of weeks are busy. Ava has Cardiology this Tuesday, her Bronch next Monday, Immunology on Tuesday. She is back to spitting up but she is on 250mls, 3 times a day, so I don't know if it's because of the increase or just her again. We have been feeding her while she is asleep the last couple of days because she is spitting up at every meal.

Ava also got her orthotics and new sneakers on Thursday. It was the first time she has been in a store. We also went to Bath and Bodyworks. She had so much fun and kept signing "more". She seems to be doing better with her feet since we got the orthotics.

She still hasn't started talking with the valve, but she loves to talk with the vent when she is going to sleep. We really need a therapist that can help us with this. Our speech therapist didn't know what the passy-muir valve is, so I am hoping that she will learn more about it.

Tomorrow I will call Lung Center and I hope that we can start weaning her off the vent during nap time. We shall see. We didn't have a nurse last night or today and we won't have one next Friday and Saturday night and Sunday day. If anyone knows a great Medicaid nurse, we have that ability now to take private-duty nurses, please let us know.

Thanking God for his endless opportunities and praying for energy, and Ava to be off the vent all day...

Day 782

Today we went to ENT and Ava got a prescription for a Passy-Muir Valve. This is a speaking valve that helps her to use her vocal cords as well as better swallowing. The doctor also thinks that she should be decannulated by the end of summer. The thought of her being free of her trach is unbelievably exciting. No more night nursing, no more need to stay up all night-every week! Maybe it would also mean she could eat easily! I could drive all three of my children around without having someone next to Ava. Can you imagine - being able to drive my children around - all of them together - by myself?! I could actually go to the store when we need something and not have to wait until we have a nurse or my husband is home?! Incredible!

The doctor also wants to do a bronchoscopy to check out her trachea before we are at the point of delaying her decannulation. We scheduled it for April 2nd, before I get super busy with the Taste of Buffalo.

We were hoping she would speak but she isn't a big fan of the valve being on. We are looking forward to the day she can say mama and daddy, Ali, Ari and Ali wants Ava to tell her, her favorite color. Ava breathes very well with the valve on, despite you can only breath in, not out. If you can take her mind off of it being on, you can get her to keep it on for at least 15 minutes.

Ava also got her IVIG on Wednesday. She was completely terrified of the needles and she had to have blood drawn. We go next week to Immunology and hopefully her blood levels are perfect and she will no longer need infusions anymore. Ava is so strong and it takes three of us to put an IV in. We should find out this week what the results were.

Thanking God for Ava's lung growth and praying for her trach to be gone by the end of summer...

Day 778

We had a great week and weekend with Ava. The weather has been incredible and Ava has loved every minute of it. She has done great this week being off the vent 10 hours a day. I am hoping tomorrow that they will allow us to start naps, but the RT said that doesn't happen that quickly. We know that Ava is ready.  We are still working out how to give her nebulizers and puffers without the vent.  Buffalo Oxygen does not have any easy answer for some reason.

Ava got her last Synagis shots for RSV last week as well. Hopefully we can get the shots again next year. She is getting her IVIG on Wednesday and we are going to ENT on Thursday. Next week we go to Cardiology, the week after Immunology, and after that is Opthamology . Quite a few weeks of appointments but it's either her three months, 6 months or annual. Love saying ANNUAL appointment. That's for her eyes - it's so unbelievable that she was so close to having eye surgery and now she only has to see the eye doctor annually. Hopefully he will say that she no longer needs to see him. We are so blessed! Ava shows us every day how smart she is. Some nurses that have seen other 24 week babies can't believe how incredibly smart Ava is and how well she can communicate.

Thanking God for blessing our family and praying for Ava to be able to come off the vent during nap times...

Day 772

We got approved today for Ava to come off the vent when she wakes up in the morning until she goes down for her nap (5 hours) and from 3 - 8pm for a total of 10 hours a day. Yeah! We also changed her feed rate to 250 mls 3x times a day. We went up because she went down to 11.75 kg with her weight. We also eliminated the 3pm feed because she most often would spit up during that time. We moved her 4th feed to at night once she's asleep just until she is fully up to the 250 a feed. We are going up 10 mls every 2 days.

We are also going to see the Syracuse feeding clinic whenever we go to GI there. It really seems like the gag that is triggered by anything solid isn't going to go away anytime soon. She has been eating stage 2 for a long time, and Ava really wants to eat solids and puts foods in her mouth. Her gag though makes her vomit up anything that is in her tummy until she can get that solid out of her mouth.

We are looking forward to this week with Ava since we are having great weather. She really loves being outside.

Thanking God for Ava's lung growth and praying that we no longer need the vent & trach this summer AND Ava can eat solids...

Day 770

Well it's been a while for a post, but that's because things have been pretty great. She is off the vent 6 hours a day, and while she is off, she is scooting around in a new walker, crawling, pulling herself up on our couch & table. She has even been on the swing a few times because we have had nice weather. 

Ava was sized on Thursday for orthotics that will fit into her sneakers to help her not turn her feet out so much. They think that she doesn't have a lot of strength yet in her upper thighs so with these and possibly some bands around her legs, we can strengthen her legs without going with longer orthotics.

On Monday, I will be calling Lung Center to hopefully go all morning and all afternoon off the vent. Ava is doing so good without it. No problems at all. She also is eating really well. Opening her mouth wide and swallowing. That will definitely be hard to get her to eat more solid foods. She is only spitting up once in a while. I'm wondering if it correlates with when she needs to be suctioned. Tomorrow it's supposed to be a nice day so we are looking forward to taking Ava out. She was pointing all day today to go outside but it was too cold.

Thanking God for Ava being off the ventilator and praying that she can eat solid foods...

Day 759

Today Ava went to Lung Center. I thought we would just be going back to 15 minutes a day for a week or so, but I was pleasantly surprised. We took her off the vent the whole time she was there and she was completely 100% saturated (with oxygen). Her CO2 levels were low as well. The doctor decided that we can start back at 3 hours twice a day for two weeks and then we will go off all morning for 4 1/2 hours and the same for the afternoon. We are so excited! After that we will wean her completely off during the day except for nap times. Once that is complete, we will start with nap time, then bedtime. At some point, I believe she goes in to be monitored while she sleeps. We were told this will move more quickly now that we are into many hours of being off. Can you imagine if she is off the vent around the clock by summer? If we keep her healthy, that will probably happen! Praise God! It's so amazing what a year will bring. It's almost 1 year since she has been home. I don't think Ava can imagine her life without seeing her sisters and family every day. We are so blessed to have her.

Thanking God for the gift of Ava and praying for more nursing...

Day 757 - A sleeping nurse

Ava had a great day today and is really enjoying eating and trying to break lose from the vent. She gets so excited when her sisters run or play ball. She doesn't seem to have a lot of secretions and seems to be back to normal. Our night nurse is supposed to be in at 7pm and we are looking forward to that. Today is our last Sunday to have a day nurse, but she is hopefully going to be coming in next Sunday since we have an event to go to.

Tonight though, after we went to bed we heard the vent alarming continuously. Anthony got up to check and he found the nurse sound asleep in her leopard snuggie. I got up went in, and the vent was still alarming. Ava's sats were only 92 (which I think was the pulsox), but the vent is so loud, we can't even sleep in the other room without hearing it. I even changed her pulsox probe and she didn't wake up. She was asleep for at least 15 minutes while I called the nursing agency and let them know. Anthony finally got her to wake up and she went out to her car where she couldn't get it started because she ran out of gas. I looked in her nurses notes and she gave her 2 puffs of albuterol because she was supposedly wheezing and then she must have fallen asleep! Thank goodness Ava didn't need to be resuscitated tonight. So it looks like we won't have a night nurse on weekends again. We really need prayers for more nursing. The situation seems to get worse and worse.

Thanking God for Ava and praying for more great nurses...

Day 754

Ava is doing much better today. She still has some extra secretions so Lung Center has advised us not to sprint her until she is completely back to normal. Some kids regress a bit after getting RSV.

This afternoon we got our oxygen delivery (from our new oxygen company) but because they don't have a lift they couldn't take a new tank upstairs. They left us two tanks by the bottom of our stairway. The one going up the stairway wasn't hooked up yet when Ava had an issue. Of course an issue has to arise at this time. Ava woke up from her nap coughing so our nurse suctioned her. She put Ava on her changing table and noticed that she was breathing hard and having a hard time. She started to get her ready to suction when she called for Anthony because our portable tank wasn't full of O2. She changed her trach as well and didn't find anything in it. Ava's oxygen saturations were at 41 and dropping. Anthony rushed to get the O2 line hooked up and fill one of our tanks. Ava eventually started to come up very slowly. Thankfully he was home that day since I wasn't, because I'm not so sure Ava would be here without him getting her the O2. We really have no idea what happened but we have been told RSV really can do a number on kids.

Because of the RSV, it's going to take her a while to get back to the 3 hours off and more. I'm really disappointed especially since she can't get around that easily with the vent. She doesn't like to be attached to it. We might not go to Lung Center since we will just be starting her off the vent for 15 minutes again. I will call on Monday to find out if we will go to her appointment on Tuesday.

We do have other good news: Ava has been keeping on her food down since she was ill. She is also eating about a packet and a half of her organic baby food. We are going through it really fast.

Our night nurse was sick on Tuesday when she was here and if I would have known, we would have sent her home. We haven't had a nurse most of this week: No nurse Saturday - day, Sunday - day, Monday - night, Wednesday night - our day nurse came in at 1 am, Thursday and Friday night. It's been a crazy week. We are in the process with the help of one of Ava's ICU friends to get Medicaid nursing. I have a nurse interested in working during the week at night. Hopefully that will work out. Our weekend day nurse is taking off on Sunday's, so we have another shift open there. Please pray that we can get rest and have more nurses we can trust with Ava.

Thanking God for Ava staying home while she was sick and praying for more nursing and for peace in our home...