Well as promised, but 3 weeks behind, here is our update! Madi has been home 3 weeks today, we can not believe it has already been 3 weeks! We will start and tell you how the discharge and first weeks home have been and we also had our first outing and dr’s appointments today! Madi came home on December 22nd, in style riding in an ambulance. Honestly, I was nervous about bringing her home, I was afraid that we would have all these emergencies or things we didn’t know what to do or how to handle them, and thank the Lord it has not been like that at all. Just being home and in our environment has been amazing. We are so much more comfortable knowing where everything is and being in our element. We came home with 24 hour a day nursing care, but being that it was the holidays we had some shifts unstaffed. It ended up being nice and we were able to enjoy Christmas day just us four. Nursing has been an interesting situation, it is definitely different having someone in your home. Some nurses have been great, and others we have had to ask not to come back, but overall we are making it work. We are down to 16 hours a day and so I have some help while Matthew is at work and in the evenings so we can get some rest. Madi has been struggling with her weaning of her medications and has had some withdrawals so we have to adjust those dosages so this doesn’t keep happening. Right now if we stay on this weaning schedule she will not be off these medications until April or May. She had some “seizure like” activity this week with her weaning which was very scary so we are following up with neurology later this month as well and possibly repeating her MRI and EEG.

Today was the first time we have left the house with Madi, much less the living room ha-ha and everything went very smoothly. It is amazing the things we have to take in case of emergencies and we felt like we packed the whole house to go to the dr today. We met with our ENT surgeon, better known as Madi’s best friend (Dr. Adele Evans) We know Madi would not be here without God bringing her through everything, but we know that the biggest part of that was accomplished through Dr. Evans. We have no doubt that Madi would not be here if it was not for her and everything she has done and continues to do for Madi. We definitely consider her to be much more than just our doctor and she will forever be our friend! She truly loves Madi and has always made sure she received the care she needed. We also saw Madi’s other best friend, her general surgeon, Dr Leah Sieren. She was the first Dr that we ever met once Madi was transferred to Brenner’s, she has been with us this whole journey and played another huge part in Madi’s care. She will always be our friend as well and we are so thankful that the Lord gave us these two very special ladies. We couldn’t have imagined a better team for Madi! We stopped in and visited the PICU team, where Madi fought for her life for almost 6 months. We love them all as well and were so glad to see all of them today and they were definitely glad to see Madi! Everyone of them took such good care of Madi and were there for her good and bad days, we couldn’t be more thankful to have had such a great group of people to love our daughter and help her be where she is today. We had some other special visitors as well, Dr Kon, who is the adult cardiothoracic surgeon. I think Madi holds a special place in his heart too. We met with some special families who we have made friends with, and many other people that I know I have forgot to mention that have helped us so much along the way. It was so nice to walk down those hallways with our sweet baby in tow and not be going to see her in a room. We hadn’t pulled in the parking deck there in 3 weeks, and it was so strange being back there today!

Madi is thriving so far at home, she has already weaned off of her oxygen. She is still on the ventilator 24/7 but it gives her little support and mostly pressure to keep her airway open. I try to explain her malacia as trying to suck a really thick milkshake through a straw. Once that straw collapses there is nothing moving in or out of it! That is what happens to Madi’s airway when it collapses and that is why she is on the ventilator with constant pressure. They don’t like to wean any respiratory support during flu/winter months so when we go back in March we might can talk about some small changes to give her a little less support or at least our goals for the future. We still have to meet with the Kids eat program which will monitor her weight and how her feedings are going. She is still fed by J tube 24 hours a day so we would like to transition to G tube eventually and be able to get her calories in without having to feed her 24/7. She will have many follow up appointments and this will definitely be a long journey but we feel like she has come some far just in 3 weeks. We are so incredibly thankful to have her home, there were days we questioned whether she would even live to come home from the hospital! God has been better to us than we deserve these last few months and we know He has special plans for Madi and we can’t wait to continue to watch her grow and improve over time. This will be a very long process but we are glad to be headed in the right direction!

Thank you everyone for your continued support, prayers, and encouragement. There is no way we could have survived over the last six months without the love, prayers, and support you have shared with us!

We will try to update the website often and are posting some new pictures for you to enjoy as well!