Day 430 - A praise the Lord kind of day...

Ava woke up about 4 times during the night last night, with some gas pains and needing to be suctioned. Nothing too bad, she did sleep most of the night. She was pulling on her ear a bit so they checked it out to see if there was an ear infection. Thankfully there wasn't one, although I think I have one. After she had her morning spit up, she was fine the rest of the day until later this afternoon. I think she was tired of sitting in her chair or she got some water from her vent tubing and she started to get upset and desatting. Well, I started to give her some O2 from the ambu bag and she still wouldn't go up her in O2 saturations. Her sats were going down to 60s and then 50s, when someone called our nurse and she ran over, took over and bagged Ava with the other bag that we won't use at home. Ava got better and then she seemed to have maybe gotten some water in her trach again, so we were going to suciton her. She started desatting and I put the bag on her while her nurse was going to suction, but the bagging wasn't helping. Finally the nurse noticed the bag which is always attached to the O2 is not attached so Ava is not getting any extra O2. The reason for these issues is because she didn't have the O2 that she needed. Ava still needs prayer that we can never have this situation happen again and that she can breathe and cry without needing O2. This made me think that I have no idea how our PMR bag is attached to the O2 canister. It wasn't explained to us by the VNA, so I will look into it tomorrow.

I did speak with a woman today from surgery about Ava's GJ (feeding system that goes into her tummy and intestines). She didn't realize Ava didn't have a Mickey (where she is fed directly through to her tummy. She was fed like this for at least 10 months) and she wondered why she had a GJ (which is where the feed is fed directly into the intestine). I explained my theory, which is: we thought she had bad acid relux (which she may have had months ago and could possibly have a little bit), and we put the GJ in. Once we took her medicine away (Miralax) which seemed to (and did) cause her extreme cramping and desatting, her "extreme" pains and desatting went away. She still has some gas, but it doesn't look to be acid reflux. The staff was also dumping her gastric juices because it was filling the gravity tubes fast. The surgery NP didn't like that the gastric juices were getting dumped because she needs them. Around this time, Ava showed us that she can toss up some of her gastric juices twice all over the place. The surgery NP thinks that is because we are blocking most of her intestine with the feeding tube and the gastric juices are not going through the intestines like they should. Now, the plan is to speak with our pediatrician about changing it back to a Mickey where she is fed through her tummy after we get home. It would stop her from coming home for awhile if we did it now. They can do it easily (once we are home) and we already have an appointment for surgery the end of April. Please pray that this works because this could mean that Ava could not need her feeding tube at all. We still need to work on her eating and drinking, but pray for this as well. ;)

I also received her prescriptions to be filled and dropped them off at Rite Aid today. Only one couldn't be filled by them and I will have to go back to the hospital to have it filled. We have all her appointments scheduled as well. Ava is also starting a new steroid hydrocortisone tomorrow (instead of prednisolone) and hopefully that will go exceptionally well.

The great news of the day is that Ava's eye doctor came in to visit her. He checked her eyes and he was happy to see that she could "track" with her eyes. After putting dilating drops in her eyes, he later found out that her eyes are in perfect condition. She is far sighted but most babies her age are. Her ROP (retinopathy of prematurity) has resolved itself. If you look back on April 22, 2010, that is the day the surgeon was prepared to give Ava eye surgery. Thank you Lord, for all that you have done for Ava and thank you to all of YOU for your prayers. Keep them coming! You can see today, just a part of what all your prayers have done for Ava! Praise God!!! Let's storm the heavens and get Ava off this vent. Let's shock and awe all unbelievers. Ava is only here because of God and your prayers.

Thanking God for Ava's eyes and praying for Ava's lungs to breathe on their own without a vent...