So I keep thinking that I will have time to go back and write about all that has happened in the last few months but things continue to be crazy for us and so I have decided to give a brief update and then continue on with current news.
Graham stayed in the hospital until December 29. We had thought we would be home by Christmas but we didn't make it. Some dear sweet friends decorated our house for Christmas and we celebrated when we came home. This was such a wonderful gift, to come home to a decorated house, tree and everything. I am so blessed to have friends sweet enough to go in my attic and buy us a real tree!
Graham got a G-tube (feeding tube in his stomach) while in the hospital so that we can get enough nutrition in him for him to start growing. He burns so many calories with his work of breathing that he hasn't been growing well. He came home using a BiPap machine at night (breathing support with nasal mask), a pulse ox machine (sticker on his toe to monitor oxygen saturation) and a feeding pump. He did great at home for about 5 days and then started to have more labored breathing. He was on BiPap most of the day and we decided he needed to see the pulmanologist again. On our way to Duke we had to pull over on 540 and call EMS because Graham wasn't breathing well and was turning blue. SCARY. We got a ride to Duke and have been here since (about 2.5 weeks).
Graham has had a scope by ENT to see his airway and he has severe tracheobronchomalacia, floppy airways. We are faced with deciding whether to try and make BiPap work again or getting a tracheostomy and ventilator. This is a very difficult decision. The trach is invasive but offers some benefits. Accepting that Graham needs such serious support is difficult. Please pray for us to have wisdom and courage to make the right decision.
Graham is on BiPap 24/7 right now and not making much progress. He cannot eat or drink orally while on BiPap and he begs for something to put in his mouth. He also cannot go on any wagon rides while hooked to the BiPap. I am spending my days and every other night at the hospital with him. My mom and Matt are filling in evenings and other nights. We have hired a part time nanny for the twins. I am really missing spending time with my babies!
We praise God that Graham is still here and he has come so far from this picture.
We pray for the Lord to continue to uphold us and carry us through whatever still lies ahead.
