Well good news! Madi’s surgery should continue on as scheduled on Thursday! The cultures they did to check for infection came back clear on two and the other one showed some growth but nothing too concerning. They had planned on starting her on antibiotics before surgery so she just gets a few extra doses. The plan for Thursday is to get started around 7am. The first part of surgery will be placing her on ECMO. The easiest way to explain that is as a bypass machine. They will place large cannulas in her neck where all the blood will be taken from her body, cycled through a machine, warmed, oxygenated and returned to her body. The machine will do all the work of her lungs. The plan is for her to be on the ECMO for a little over a week. A nurse described the ECMO as “hours of boredom and moments of terror” there are many risks that go along with this, and she will be on blood thinners, so our prayer is that it won’t cause her any complications and she can come off of it easily. The next part of the surgery will be her repair. They will go back in the same incision in her neck and actually bend the trachea out to sew it up. I asked her surgeon how big her trachea and esophagus should be, and she said the size of a pencil. She estimated at least 2 hours of just sewing up each tube, so you can imagine how tedious this will be. She then plans to reinforce the suture lines with something called core matrix, she will also put a layer of that in between to separate the two tubes. This a very delicate surgery, they have to be very diligent not to harm her vocal cords or any laryngeal nerves. Once surgery is complete she will be back in the PICU and heavily sedated for a week. She will return to the OR on the 18th for a bronchoscopy, where they will look with a camera to see how things are healing. If all goes well the plan will be to wean the sedation and ECMO to get her back to breathing on her own. We know everyone has been praying for our sweet Madi, and we ask that you please continue. Especially that the surgery will go perfectly and she won’t suffer any complications from being on the ECMO support. The next week will be very critical for Madi! With that being said, we are choosing to limit her visitors. She will have an around the clock respiratory therapist in the room with her that will manage the ECMO support as well as an around the clock nurse trained on ECMO that will be in her room as well. This is a very large, critical piece of equipment and we don’t want to increase any risks or chance of infection. So please feel free to call, text and get in touch with us, and we will update as we can. The Lord has been so good to us through this whole situation and we know He is still able to heal our sweet baby girl! Please pray He will touch her and guide the doctors on Thursday and for the next long week of recovery. Thank you all for your continued prayers, and support!
Category Archives: madi
Happy 2 Months Madi
3 ThoughtsMadi Update – 8/23
Things haven’t changed much this week, which we are glad about. Still just hanging out and waiting for surgery. We took some pictures today and I learned that my phone has some pretty neat effects on it. Reach up and click on Photo Gallery. If anything changes we will let everyone know.
Madi Update – 8 / 20
1 ThoughtThings have been going well. Madi has been laying out relaxing as best she can. She is totally off her IV meds which is great. They have also taken her off both her motility medicines. No big changes for now. The doctors will be having a planning meeting on the 29th to talk about Madi’s care and upcoming surgery. Please pray that God will give them wisdom on the right method to use and how to best take care of her. Keep praying for our sweet girl!
Madi Update – 8/15
15 ThoughtsToday has been good, actually this whole week has been good. Madi has been tolerating her feeds well and peeing and pooping 🙂 which we are excited about! Good news is they are weening down her IV drips and she will only be on scheduled doses of medicine (that’s two less medicines) given through her J-tube. They have also taken her off of one of her motility medicines (another medicine gone) and if she does well without them they will ween the other one next week. All of this is in preparation for her “big” surgery which is still slated for September 11.
The most exciting thing – Madi smiled at her mom for the first time today! What a blessing!
Madi Update – 8 / 13
Leave a commentMadi has continued to have a great couple of days. She has been tolerating her feeds well and they have now added protein to her feeds to help her grow stronger and heal even quicker. No real changes in her care for now they want her to heal and grow. Keep praying for her. I attached below what I believe to be the best photo taken yet… 😉 You can also click on the photo gallery link at the top as I will add pictures from time to time.
Madi Update
Leave a commentMadi has had a great couple of days and nights. We are so thankful she has been able to rest and feed. They have been fortifying her feeds with additional calories to help her grow bigger. She has been pooping and peeing good which is a wonderful blessing. The big news is we have set a tentative date for the repair surgery and it looks like it will be September 11. It’s this date for many reasons. Pray that nothing happens that would change this date. (Things with Madi). Also today please pray for the Williams family. They had to make the decision last night to stop the machines and their 2 month old “Colin” went to be with Jesus. Megan and I have cried for many families up here and we pray that God will allow us to be an encouragement to them. You all pray for them too. We love you all.
Madi Update – 8/10
Leave a commentToday has been a good day. We are so thankful for the good days. Madi seems to be pooping on her own which is great. Please continue to pray for Madi but when you do remember the other families that are here with us. We met a precious family two weeks ago whose son had been in the NICU for 8 months. “Jud” was his name. We found out today that Jud passed away unexpectedly last Sunday. Another family said goodbye to their little boy “Cooper” that was just 4 weeks old and had a condition (I Don’t know what it was) but that same family lost their 3 year old just 4 months ago to the same condition. Mine and Megan’s hearts go out to them. We hurt for them and for what will be their new reality. But at the same time we are thankful for a precious Savior whose love is even more real in the incredibly difficult times. Pray for these families tonight as you pray for our sweet Madi. God is good even in the midnight hour. Love y’all.
Madi Update – 8/9
Leave a commentShe has continued to have a good couple of days. No changes really. Feeds are still going good and she has started pooping again. 🙂 They are going to add calories to her breast milk to help give her more nutrition and help fatten her up. Which is good.
Madi Update – 8/7
Leave a commentMadi Update – Madi has had an uneventful day. Although they did take her to the OR to replace her small POPE tube with a medium POPE tube. But everything went well and it only took about 15 minutes. We are thankful for the uneventful days.