Day 606

We went to get a blood draw today to see how her immune levels are to possible get the rest of her live vaccine shots. Then we had Cardiology and her doctor was extremely excited to see her. She had an EKG done on her heart and everything was great. The hole that is in the center of her heart is smaller so it's closing up. Until it's closed, it just means she can't go deep sea diving or flyer a fighter jet. I asked him if she wanted to, what happens? And he told me that he would go in and close it. ;) Hopefully it will close but he is very excited and doesn't expect to be seeing her after she is off the vent and will stop between the ages of 3-5! No long term treatment will be required. Praise God! We were so excited and very high on Ava again. Until...

We went to Developmental. We thought this was going to be a great visit because she was doing so much, including sitting up and signing and communicating. Well because she is either 16 months or 20 months, she is supposed to do so much more and she is (of course) not doing what an 18 month should. They only found her cognitive to be 13.5 months, but she does follow direction without any hand signals or motions. They don't even really grade her for using sign language. They also told me that she had brain bleeds and that she was crabby and didn't want to be touched while being in the hospital. What?! Did they have the right baby? All Ava ever wanted to do was play with somebody. Since when did she have a brain bleed? They said her upper trunk strength was poor but she is getting stronger and that they don't know if she ever will walk. That could be because of her brain. Kind of depressing but we know that our God does the impossible, right? Just look at Ava. They said they have seen worse brain scans, and the kids are doing fine.

In other news, Ava was watching me eat today and so I gave her a crouton to play with since she never really puts food in her mouth. And guess what happened? She put it to her mouth and tasted it! She didn't like it, but she knew where to put it!

Thanking God for his blessings and praying for Ava to walk, eat and be vent free...

Day 604

Ava is doing great. She came off O2 Friday morning and has been off since then. She is so happy and pulling her vent off as usual. We are supposedly getting a new nurse coming next week to work our weekend days. We are back to not having a nurse for Friday and Saturday next weekend. But if this nurse works out, we will have her on days so we can hopefully get some stuff done. Ava is on prednisolone for 5 days once a day for her cold.

Ava lost a bit of weight - she weighs 11.7 kg = 25.79 pounds. They said they want that to happen. But we don't want her to continue to lose too much.

Thanking God for Ava's progress and being able to handle a cold and praying to go down in vent settings next week...

Day 602

Ava seems to be back to her old self. She was bouncing in her bouncer yesterday and today. She still looked pale when we got home but she was so happy to see us. She snuggled up to my chest which she has never done before. I'm so in love with her! We are sick now too so I am afraid to come near her. It's so good to be home. She slept great last night so it looks as though she is on the mend. All of her therapies are canceled for the week. Monday we have to get her blood taken, see Cardiology, and go to Developmental. She is on 1/8 of a liter of O2. It looks as though we won't be able to go places again. No more church, no Christmas pageant for Ali, etc. Hopefully next year we can venture out or the year after that in the winter.

Thanking God for his blessing and praying for protection all year...

Day 600 - Oh the fun!

I spoke to the nurse and heard Ava was gagging much more and was very tired. She was up early so I thought that might have been the problem. Nope - that wasn't it. By 5pm she was on 1/2 liter of O2. I said she was getting sick and we had to call the pediatrician. Thankfully, Anthony was home for the funeral and after testing to see if Ava needed O2 (before calling the doc), she was able to be off the O2. He went to bed and around 10pm I was trying to call the nurse. She finally got back to me and said that Ava was in respiratory distress. The nurse was really upset and from what she was saying, it seemed as if Ava was going to the ER immediately. She couldn't get a rattle out of her chest, she was on 1 liter of O2 and her heart rate was 180 and breath rate ranged from 40s-70s. She couldn't get Anthony up but she wasn't knocking on the door. I was so scared at this point cause I wasn't there and couldn't assess the situation. Finally, Anthony got up and he called the pediatrician. The pediatrician said to go to the ER. The nurse was getting all of her stuff ready when we decided to call Lung Center. Anthony called and thankfully Ava's doctor was on-call and he was very calm and said it was just a cold. He faxed over a prescription to a 24 hour Walgreens. At this point Ava was up and happy and very smiley. Thank God. This was around midnight and I could finally go to sleep but was still praying like crazy. The doc said we didn't have to come home tomorrow either so the girls could enjoy Disney. Oh the "Adventures of Ava."

Thanking God for Ava and praying that she is healed and protected...

Day 599

Ali was really sick today and actually threw up in the lobby of our hotel as soon as we walked in. It wasn't much but this hotel isn't used to having kids because it's mainly for business since the convention center is across the street. She didn't want to show that she was sick and she seemed better so we went to the beach. It also didn't happen again. Funny enough, two years ago, when I was pregnant with Ava, Ariana threw up twice in Fl and we never could figure out why. It was even on different days. I think it's me. The craziest adventures seem to happen to me. And speaking of which...

We went to Cocoa Beach which is about an hour away. After getting Ali some medicine, we found the beach and were playing in the water. All of a sudden, I saw jelly fish in the water. I ran out and then we saw some all over the beach. That was the end of our beach fun. Especially after I saw red marks on Ariana's back and wasn't sure if she got stung or not. She didn't, so at least we got to see a jelly up close and personal. That is the homeschooling mom in me - that's what I have turned into. God always give my girls adventures with animals up close. Much fun for me ;)

Ava, Ariana and myself are still healthy... If something is going to happen, it probably will tomorrow.

Thanking God for our adventures and praying for Ava to be healthy...

Day 598

Alexandra started getting sick today. Sneezing and a runny nose. Tomorrow we go to Florida until Thursday am. I hope it's a great time and nobody gets sick especially Ava. We didn't realize Ali was getting sick until much late in the afternoon. Anthony has a trade show but he is coming back early because his brother-in-law passed on. He died of cancer - fighting it for two years. May his family have peace. So it is going to be me and the girls with a rental car and we are hopefully going to the beach tomorrow and Magic Kingdom. We told them that Ava wanted them to go on the trip because they were such wonderful big sisters.

Thanking God that we can go on vacation and praying that Ava doesn't get sick...

Day 593

Ava has been having some trouble lately. It started Sunday night when she gagged and/or coughed and started turning colors. I suctioned her but it still didn't help. We changed the trach which was gunky and then she coughed and the new trach came shooting out before we had the trach ties on. We thought maybe the vent circuit was pushing too much air in her tummy because it was alarming earlier. We changed that and I listened to her chest and I didn't hear any air moving in her lungs. I gave her two puffs of her albuterol and that didn't work so we gave her an albuterol nebulizer treatment. That worked and while I was giving her chest pt and the treatment, she fell asleep and we put her in bed. Her lungs except for the left upper lobe sounded clear. Her left upper lobe sounded not as good as the rest.

I spoke to Lung Center the next day and they said that after 6 days the change in vent settings wouldn't do this. We also got a new pulsox on Monday and it seems to be working and giving us more accurate numbers.

Today she had two episodes this afternoon where she drops her sats. One instance was her gagging the other wasn't. She dropped both times to the 70s but came up easily with bagging. We are now giving her Albuterol every 4 hours. She is doing better tonight and hasn't had any episodes. We don't know if she is having an asthma attack or ??? Both of our other girls had problems with asthma the first fall after they were 1. Lung Center said that a child with a ventilator doesn't get asthma, but I'm not so sure about that.

Our one of two night nurses (the only one who is full time), can't come to work for a while. Just found out about 4 pm tonight so I am doing a full night shift until 5am when Anthony will take over. Hopefully she will be back on soon. Please pray that will happen and we can also find more nurses. Our nursing situation is very draining and is probably our biggest problem.

Thanking God for Ava's lung growth and praying for protection and for her to get better in Jesus's name...

Day 590 - Ava went to Letchworth Park!

We had a great day and got to take Ava to Letchworth State park! We went with our homeschooling group and Ava kept reaching out to touch people's hands. Which made mama nervous and then I felt rude because I would wipe her hands after. But if you have went through your daughter having two rounds of chest compressions, you surely understand.

Thanking God for Ava's time with us and praying for many more fun times...

Day 586 - God's promises continue to come true...

Today was truly an amazing day. I will get started with our first appointment which was immunology. Amazingly, we were early but still had to wait about an hour to get seen. Ava fell asleep since she was up around 6am. She is such a good girl, I think she might no longer be a baby since she will be 2 in a few months! Anyways, immunology decided to still give her IVIG for at least 3 months and we can re-evaluate then. Since it's the winter months coming up, they also want us to keep her antibiotic (Bactrim) which supposedly doesn't harm her immunities. Her immunoglobins are now 638, down from the 760, but that still is good. The problem is one of the levels is at an 8 which is low but the good news is this level is the last to come up so they weren't very concerned. We had to rush the doctors because we had Neurology in 30 minutes and we were about a half an hour away (and we still had to load Ava and her equipment).

We had to wait for Neurology for over an hour. Ava was asleep again for this appointment. The doc poked her a bit to see if she had her normal reflexes and she didn't even wake up. We had her head measured here at 44.4 cm but just a few hours later someone else did it for Lung Center and found her to be 47 cm. So I will need to call Neurology and let them know. The doc also wanted a list of her head circumference every few months. Gonna get that together off this blog. ;) He said he is not concerned and I asked if "she is doing good?" And he said "really good." PTL! He also is taking her down to 1 time a day for her Keppra (anti-seizure medication) and we will go off it a month from today entirely. We still don't know for sure if she had a seizure but she has had no signs of one since.

After that we had a long break until Lung Center and I was so giddy with excitement. We went early and everyone was so excited to see her. Our pulsox probe (which detects the amount of O2 in her blood) was acting up and not accurate. They hooked Ava up to another machine to detect the amount of CO2 and the O2 saturations and she looked really good. CO2 in the 30s and O2 at 99 - 100%! I told all of them about how Ava pulls her vent off repeatedly and how she walks away in her walker away from the vent. While we were waiting, one of the other Lung Center docs, came by (and who probably doesn't know much of Ava's success) made a comment about this coming winter being hard and that we will need to get through the next 3-4 hard winters. At that point, I was kind of shocked, because I wondered if she knew something that I didn't, with Ava doing so well. The doctor came in after I spoke to everyone and he decided that we could go down in her pressure setting to 25. He did listen to her with his stethoscope when she was off the vent and he said that he could hear her air volume diminish to at least half. But after we went down to a pressure of 25 from 27 (which is the volume of air need to keep her lungs open) she did great and didn't have any change in her volumes or CO2. They decided to try 23 (which can be a final lung setting depending on the person) and she did the same - really great! So in 3 weeks if she continues to do well, we will have VNA come out and change her vent setting to 23. In 5 weeks we will go back to Lung Center and I don't know what's going to happen next. Just keep praying! God is working amazing miracles with Ava!

Thanking God for Ava's healing and praying for her lungs to no longer need a vent and she can eat like God has intended...

Day 584

We had a great weekend! Lots of fun adventures to tell you about. First she pulled her trach out on me again and Anthony was asleep because he took care of Ava during the night. Ava was in her walker next to our dining room table. I had to grab the trach across the room and put her on the table. She started crying because I don't think she liked being up there. It's amazing to hear her cry. This was the first time I heard a "real" cry and not just a little squeak. It gives me shivers and I get so excited to think that we could hear her someday soon. I had to get the lubricant out and put it on the trach and get it in. I don't know how long it was between figuring out the trach was out and getting a new one in, but it must have been at least a minute, and she still was pink. So amazing but still so scary. Please God let her be vent free.

Earlier when her vent came off when she was in her walker, she scooted away without the vent on her. She actually signs that she is "All done" with the vent. Hopefully she will do it to lung center. ;)

In other news, we bought a Suburban so we can drive around as a whole family. We were able to go for ice cream Friday night. Saturday we went to the park and took Ava on her first walk. She actually smiled the whole time and we also sat her in the grass. We pulled grass for her to touch and she even layed back in it. She loved it and it was so amazing to show her this at her age. I also had her touch an egg when I made some Apple Cinnamon bread. I had her crack it with me and stir the batter. She loves going places and enjoying new experiences. She is such an easy going child. God has blessed us so much with her and our other two ladies.

This past week we were also able to go down on her feed for her to eat only 16 hours a day at 53 ml per hour. It really helps to make her mobile and not be attached to a feeding pump. They also want her to slim down a bit and it might help her lungs not to have to work so hard. Did you ever imagine that a 1 lb. 2 oz baby was going to have to slim down? So funny. But we have been working on her legs quite a bit with her in her walker and her bouncers. She is also tired of playing with her toys. She goes through toys so fast. Anybody have some clean toys that we can borrow for a few weeks and give back?

Only a few days till all our doctors appointments. I can barely contain my excitement!

Thanking God for helping us and praying for incredibly awesome blessings this week...

Day 581 - ENT

Today we went to ENT (ear, nose and throat) specialist. This doc is really good and fast. He told us that if Lung Center goes down on her peep and she doesn't need the vent, we will go down in her trach size and she will breathe around it. She will naturally start to breathe out her nose because you can hear her breathe through her trach. He took the vent off and even put his finger over her trach and he said he would have never done that in the hospital. He was very happy with her results. She was acting a bit agitated but I don't think it was the vent being off but being in the stroller and wanting out. Even with the vent back on she still seemed agitated. We will be back in 3 months or sooner if the vent settings go down fast. I have no idea what Lung Center will do.

On her therapy side, she is really trying to stand now. We still have to hold her but she is planting her feet on the ground. So awesome!

Thanking God for this excitement and praying for her lungs to no longer need a vent...