that is the sermon I am listening to right now as I start to type. D. Jeremiah is saying that people are sometimes healed by God using medicine/doctors. I thought that was quite appropriate for me to hear this evening ;) and a great reminder that God has healed and is still healing my baby. He has also used some special people to do do this. I think of Camden's surgeon and certain doctors and the wisdom used. Amazing....(as much as it really stinks that Camden has to go through this season, and we so can't wait to be out it, yet are so thankful for it)
and....the pastor ends with " GOD STILL ANSWERS PRAYER." amen.
The nurse called in sick this morning, and then tonight's nurse did as well, so as much as I'd like a nap, I am glad they aren't here with their germies.
Camden had a wonderful morning, then by afternoon everything went downhill. I am learning his different cries and now I am realizing that today's issue was mega gas pains. He wasn't gagging and retching as much so that was good, but boy was he in some pain. He finally relieved himself ( right in front of Miss Nichole ;p) and was kind of more himself, but it took a long time and he was extremely upset. I feel so helpless watching him like that. I started to slow his feeding rate down yesterday and then again today, from over an hour to over an hour and a half and he actually seemed to tolerate that better. He had less gagging, so I am going to keep doing that and see if it makes a difference this week. Sometimes with all his little issues it is hard to tell what is causing what...but I am trying to figure things out. Is he hurting, scared, need to be suctioned, or wanting attention? :0S I will have a lot to discuss at his GI appointment on the 8th.
Later on I tried to do the paci and he immediately gagged then had a bad gagging episode after that. Obviously I knew it was the paci that caused it. I feel so discouraged about his oral aversion and I have to keep reminding myself of how well he is doing in other areas and that everything is going to happen in time. It just gets so frustrating to see him not knowing what he should be doing with his mouth and I get so upset. I had to get over not being able breastfeed and now I am trying to get over the fact that not only can he not breastfeed, but he can't handle anything in his mouth. Speech therapy can't come soon enough because I am so ready to get started with this!
So as soon as he felt better, he was back to his active sweet self. He is trying so hard to roll over and he gets that leg going like a dog scratching fleas. ;p The vent tubes are so annoying and in his way. I finally flipped him over, but I have to hold him because he is too weak to hold his head up long enough to stay off the vent. Then his trach gets pulled on and then he ends up gagging. We need to start windowing off this vent so we can have some more enjoyable tummy time! Can't wait for that day! If he can't window as soon as I hope and pray to, I know Camden will get stronger in time and be able to work around those tubes.
He is starting to pull on things more so I have to watch the g tube or he is going to yank that thing right out of his belly. Thankfully I noticed that the g tube balloon inside had been leaking water because it was real close to being able to fall out. Yesterday he was flipping his vent tubes back and forth and he pops that off a couple times a day too. Just means he is growing stronger! :) He is settled in for the night and I am camped out here in the nursery. Another day of "healing" down.....
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I'm so glad you found our blog! After reading some of your more recent posts, I can only say that I feel your pain. All of these issues with g-tubes, vent tubes, trachs, gagging, Passy Muir Valves, etc...hang in there. I've added your family to our prayer list! We'll be checking in on your little one!
ReplyDeleteJenna
I'm hopping over by way of Mikan's blog. I have read your blog and, like Jenna wrote, I feel your pain. My daughter's 2 year "Homeaversary" is coming up on Sunday after 2 1/2 months in the NICU. So many of the things you and Camden have gone through, we have too. Your little guy is so precious and cute and from the way you write, I know he will do just fine. He has a great Mama and family on his side. I look forward to reading more about your journey, and I will be praying for you.
ReplyDeleteHave a great weekend!
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