It has officially been 2 weeks since Madi had her trach placed. She is doing really well. Right after her surgery she was placed on paralytics and sedation and was able to come off the paralytic last week. They have slowly been weaning her sedation as she tolerates it and that is actually the ONLY reason we are still in the ICU. This is the first time in Madi’s life that she hasn’t been so critical that she needed constant intensive care. If she continues to tolerate the weaning schedule she should be off of all her drips by sometime next week. She came off of her morphine yesterday so she has 2 drips left to wean. She is waking up more, and loves looking at herself in a mirror. She has had her trach changed for a new one twice now and will have another change on Tuesday. Normally, they are changed weekly, but we may be able to spread that out once she comes home. Some of her home healthcare team came out yesterday and set her up on the home vent. Sometimes children don’t tolerate this transition or it takes them a while but she went right on to it and has been doing great. This will be the ventilator she will come home with! Even if she only needs pressure to keep her airway open she will still come home with this. She will be coming home with a 24 hour nurse, this is probably the change we are most nervous about. It is strange to think about having someone you don’t know in your home to help care for your child, but we will start interviewing companies for that in the near future. The home vent company is coming out Monday to go over some needs we will have for the house and for her care at home. This is definitely going to be a different and exciting experience for us. Matthew and I have to complete our trach training and have to make sure we are signed off from the hospital that we are competent to take care of Madi at home, we will also be completing our infant CPR course. Life has not been the same since Madi was born, and it definitely won’t be the same once she is home, but it will be wonderful! We can not wait to finally have everyone together at home, no matter the circumstances! The prayer is that over time things will continue to improve with Madi. Her airway should get stronger, hopefully her reflux should be less etc. but we will just have to wait and see what all the Lord does through Madi. Her daily routine is quite overwhelming! She gets around 10 medicines, some every 8 hours, but most at least twice a day. She will require trach care everyday, and  g and j tube care everyday. Her milk is fortified for her to get more calories so that will require some extra mixing and it gets added to her feeding pump about every 4 hours. She will continue on her continuous feeds, which means she is fed 24 hours a day through her J tube. This is just a little of the care she will require once she is home, along with normal baby care! We will have to suction her trach frequently so we will have a suction machine, oxygen, ventilator, and a heater/ humidifier that goes with that. She will have a lot of doctor appointments to keep us busy, and will also have physical therapy coming to the house. She has a long road ahead of her, while she is 5 months size her development is still close to newborn! She doesn’t have any head control and will have to work on that as well as strengthening all her muscles to try and move ahead in those areas. All of these problems are good to have! They mean we still have Madi, and we will get to bring her home. Our lives will be forever changed in a new way. One of us will most likely always be home with Madi, if it is cold or flu season it is much more dangerous to take her out. Hopefully after a little time and better weather we can return to some sort of routine.

So as soon as next week we may be transferred to the IMC, which is the intermediate care. No more ICU! We will stay there until she is discharged and we will have all of our training there as well! These are definitely exciting times!

Please pray for Madi over the next few weeks. They haven’t given us a timeline at all, but we are assuming at least January to come home. We have a lot to do to get our house ready for her to come home. Her medical supplies, which are delivered once a month, have to have somewhere to go. She won’t be able to stay in her room most likely since we will have a overnight nurse so we will have to rearrange the house somewhat. I don’t like clutter and chaos so I am already wracking my brain with options of not having our house look like a hospital storage room! We do want life as normal as possible for her so we’d like to have the house as normal as we can.

Thank you all who have kept us in your continuous prayers! We know we would not be where we are now without everyone’s love, prayer and support! We know there is not a way to repay you all for all your kindness and giving to us but just know we are so thankful for each one of you. We will update as things change and especially when we have a potential coming home date!