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...

Day 751

We got the test results from Friday and Ava has RSV. Human respiratory syncytial virus (RSV) is a virus that causes respiratory tract infections. It is the major cause of lower respiratory tract infections and hospital visits during infancy and childhood. A prophylactic medication (not a vaccine) exists for preterm birth (under 35 weeks gestation) infants and infants with a congenital heart defect (CHD) or bronchopulmonary dysplasia (BPD). Treatment is limited to supportive care, including oxygen therapy. So with that note, she has been on oxygen since last Monday. She also gets 2 Synagis shots a month to reduce the chances of that. We also pretty much don't go anywhere. Ariana must have gotten it first and then Ali but Anthony and I and the nurses haven't gotten it. The only place we go to is to our co-ops gym and swim and to Target or grocery store. It's very easy to catch and in older kids and adults it seems like a runny nose or cold. Don't know how we can possibly stay away any more than we already do. It's a good sign that if she has something as bad as RSV where kids go to the hospital, that she can handle it without much extra help.

Ava was off O2 until 4 pm today but she started satting lower 90s. I put her back on and she's been higher ever since. Her heart rate is back to normal. It definitely makes me nervous because we don't want her to go to the hospital and possibly get something else. Please pray that she gets back to normal asap. We go to Lung Center next Tuesday and it would be great to get back to weaning off the vent.

Thanking God for Ava life and praying for strength in both Ava and our family to get her over this illness..

Day 748

I decided to take Ava to the doctor today since she doesn't seem to be much better. She usually is better faster than this. She was also pulling on her ear so I thought that maybe she had an ear infection and I can't do much about that. Anthony has been away since Wednesday so my nurse and I went to a 1pm doctor appointment. They took a swab of her nose to see if she has RSV. They actually think she does and it could possibly get worse. I told them we should probably go on steroids since they would do that for normal children. She has been spitting up all her food for the last couple of days so we are mixing half of her feed with half Pedialyte. The doctor said to mix more than half of Pedialyte to make sure she doesn't aspirate which could cause an infection.

After we got home, Ava slept in my arms for a couple of hours and when her sisters got home from my parents house, she was very excited to see them. She is on 1.5 liters of O2 and the nurse actually put her up to 2 liters in the middle of the night without letting us know. I don't know what she was satting when she did that. Hopefully we can wean her more tomorrow. Her temp seems to be better and her heart rate and breath rate seem to be back to normal.

Thanking God for Ava's strength and praying that she gets back to norm soon...

Day 746

Ava didn't sleep much last night so she was very tired this morning. She was ok yesterday but very lethargic. We let her sleep downstairs for a morning nap and we discussed calling the doctor to put her on steroids. We decided to call Lung Center and they said to change her trach. We had an instance Monday night that she was turning blue and shaking. Her O2 sats were 100% and I turned her O2 up to 4 liters but she was still blue in her arms and feet. It was pretty scary but after I held her the color came back and she stopped shaking. Her heart rate was above 150 so we were able to give her an albuterol. We are giving her round the clock Tylenol & Ibuprofen. Not sure if we should have called 911, but they probably wouldn't have known what to do. We don't want to go to the hospital since we know it's filled with RSV patients.

Ava seemed to get better this afternoon so we decided to skip the steroids. If she gets worse tonight, I will give them to her. She is satting mid-90s when she is asleep and besides being tired she is pretty happy.

Thanking God for Ava feeling better and praying that she continues to get better and doesn't need steroids...

Day 744

Today we went out for a doctor appointment and Ava started needing oxygen while we were there. It happened so fast. She started getting a fever later that day and her heart rate and breath rate were high. Her heart rate was over 180 and her breath rate was up to 80 bpm. We thought it could be possibly because of the shots last week since she got sick after her last shots and needed to go on steroids. We have no idea what's going on but she is on 1 liter of O2. Hopefully she will get better soon and we won't need steroids. She won't be going off the vent this week though.

Thanking God for Ava to be home with us and praying for her to be healthy...

Day 740

Ava is now able to go off the vent for 2 hours twice a day now. Next week Thursday we should be going longer. She is doing so well. We really need her off the vent soon since we don't really have night nursing and Ava loves to scoot around the house.

She got her live vaccine shots today while her sisters were in the doctors as well. Ariana got a bit of a cold and has asthma problems. I don't think I have ever taken three kids in to the doctors at one time. So grateful I had our nurse since Anthony is away. But once Ava is off the vent and the feeding tube, my life should be a breeze with three right?! I am having a lot of fun teaching the girls and they are amazing me with how much they information they retain. Ava even is communicating beyond what I can imagine. She is really enjoying eating ice cream and whip cream and is feeding herself.

We found out that our Friday, Saturday and Sunday nurse is going to take Sundays off now. She knows how much we need nursing, but she still decides to take them off after being on our case for at least 5 months. That will be a lot of fun if we don't get a Saturday night nurse. We have a new night nurse starting Tuesday night and hopefully she will enjoy our case and take us on 5 nights a week.

Thanking God for Ava's lung growth and praying for her to eat and breathe on her own...

Day 738

Today we had Neurology at Children's Hospital. The doctor was amazed by her and called Ava a "wonder baby" and we are "wonder parents". He said that when you do have a lack of O2, you can see seizure activity but since we haven't seen it, it most likely won't happen. Ava isn't on any on seizure medication and has been off of that for 6 months.  Please keep her in your prayers for this. We all know that she is only a "wonder baby" because of your prayers and God's plans. We don't have to go back for a year! Yeah!

In other news, our only night nurse called in on Sunday, citing illness, but she called yesterday that she is scared of the vent and Ava. She gets a lot of low minute alarms. This doesn't indicate a problem but that there is air coming out of her mouth or from around her trach. Ava doesn't drop her O2 saturations or heart rate so there isn't a problem but to position the tubing and stop the alarm. The agency feels that she doesn't want our "case" because she wants something easier like a g-tube case. She came to train at 1am this morning with another nurse that we had just that night and she said she still is afraid. So we are back to not having a permanent night nurse. The agency did get a few nights and thankfully our day nurse is coming in after working a day shift to work the night shift. Thank you God for her!

Thanking God for Ava and praying for more dedicated nursing...

Day 733

Today we were on the Kiss 98.5 telethon for the hospital. They were raising money to get a navigation unit for ENT.

Here's a link to our video. http://bcove.me/6h190s24  Ava was fussing like a normal two year old and she didn't like all the noise when people clapped. When we left she kept signing "more" as if she didn't want to leave. She very much loves all the attention. Typical of the baby in the family. Whenever she sees someone clap she thinks it for her (probably because we cheer her on all the time at home).

Anthony has been away since Sunday and he won't be back until Friday night. Our nurse didn't even show up for work last night. I texted her at 11:45pm and she wrote back saying that she was at Buffalo General because her father had a heart attack. I have no idea how long she was there and didn't call in, but this is patient abandonment. I'm very sorry for her situation but every body needs to call into their jobs and say they can't come in. She could have had her family call our agency. Tonight will be the second night in a row without a nurse which means we cannot sleep.Thank goodness my parents have taken the kids overnight so I can sleep in the morning. We have had 5 nights of call-ins/no nursing in a 7 day period.

We went down on her Peep to 7 and we should be getting down to a PEEP of 4 or 5 depending on her lungs.

Thanking God for his grace and praying for more nurses...