First of all Liam has been off oral steroids for a little over 48 hrs now. He only desats occasionaly but goes back up on his own. Still its only been 48 hrs and liam has been known to wait a few days to a week before major desatting.
Pulmanology isnt going to do the bronchio scope until he starts desatting alot. Pulmanologist was trying to arrange it for us to be set up at one of the houses or a hotel and discharge liam to keep him close and have us check in everyday. But pedi surg isnt done with us yet. Miniatis plan as of yesterday was to repair the right diaphragm later this week if pulmanology didnt find anything. Pedi surg didnt come by today, i think tuesdays are big surgery days for them, so I wont know more until tomarrow.
Liams swollow study yesterday was amazing, didnt get a chance to blog it. It test showed that he has amazing oral control and perfect swollowing. Hes just alittle butt that likes to spit the good he doesnt like out at you. Also we learned that if he doesnt want the food he fakes coughing and retches. Its funny and frustrating. It means hes going to fight oral feeding immensely.
Because the swollow study went so well we got to start solids again yesterday. We fed him stage 1 sweet potatoes and stage 2 bananas. Banana was a new taste for him and he didnt know what to think about it at first but ended up eating a healthy portion. We also learned that stage 1 foods and liquids he has an aversion for because theyre too liquidy.
Today I talked to our wonderful nutritionist here Carey. She recommended doing baby foods with meats because of the callories being higher. She also recommendedwe get liam off elecare. We talked about his supposed severe food allergy and because theres were never test done we both agreed he probaby didnt have one. I told her about the soy we started using in december before all the respitory issues and she also agreed that he probably is lactose intolerant. So today liam started prosobee soy formula. Hes been doing perfectly fine. You cant even tell we switched formulas.
I was able to order liam lunch for the very first time today. It was exciting. I stuck with what Carey told me and ordered liam some foods with meat in them:
Chicken and brown rice
Beef, carrots and corn
sweet potatoes
We started with the chicken. Liam though I was crazy trying ti feed it to him and he fought me with every bite but we got in a good 8 bites.
Then we switched to the beef. Even though it was stage 2 it was thick and very grainy. Liam liked this least of all. He started his fake coughing and retching. After a few bites I finnaly got the bright idea to mix it with the sweet potatoes to thin it. The newly created mixture was better. He ate alot. I think he liked it even though he tried to spit it at me a few times. Liam ate more than he ever has.
And even though liams feeds have only been increased for a few days and we only started solids yesterday, im seeing weight gain. His little cheeks are getting so puffy and his leg rolls are getting rolls. I swear he grew a stomach over night, like an almost normal baby stomach. Its happening so fast that its almost like hes just swelling.
Liams getting so much better at sitting. Yesterday he sat all by himself for like 2 min no help at all. Today he sat on my lap and rocked himself back and forth. He also played in his bed. For liam today has been such a big day.
Although Im always asking you guys for prayers, tonight I have a request for other families. I just found out tonight that there are othef CDH families currently here. One family is here on the 6th floor with me. I have yet to meet them but would love to. Theh are here for a repair of reherniation is what a nurse said. There are also 3 babies up in ICN right now fighting for their lives, 2 of which were just born yesterday and are on ECMO. For 1 baby the out look looks grim. I remember being up in ICN and all those feelings. Please pray for these families and their sweet babies. Im casting aside my own worries tonight and concentrating my prayer o these families. I hope thag I get a change to reach out to these families. Thank you for your continued support.
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