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...