In the days ahead when we finally get to bring Malachi home, I am 100% positive that I will be VERY stressed and VERY tired, at least until I get into somewhat of a routine. That will take time. Even then, I'm sure the stress and fatigue will be wearing. I will need to be reminded of why and how much we want Malachi home.
Our stay in the new unit unfortunately will be that reminder. From the beginning, no one really knew anything about Malachi and to this day it doesn't seem like his nurses have taken the time to know him either. Granted, they haven't really gotten a chance because they seem to rotate so often. To say the least it has been frustrating. Communication between departments and communication between the staff with us has been ridiculous. I'm finding it very difficult to get my point across that JOHN AND I WANT TO BE INVOLVED IN 100% OF MALACHI'S CARE. It is hard for me to know what questions to ask when we are unaware of medication changes or doctor concerns or any orders that have been made regarding Malachi's care. For instance, the trainer that we had for our vent classes informed us that Malachi's trach collar trials have been suspended. News to us. Heartbreaking that we heard from someone in that position and not our nurse or nurse practitioner or respiratory therapist or doctor. It just frustrates me.
Today, I came in to his room and his face was COVERED in snot. After cleaning him up, I changed his diaper because he was STINKY! The nurse had pinned his vent tubing into his shirt (which is normal) but the safety pin was through his diaper. At this point, it's just a combination of all those little things that get under my skin. Also, I noticed he had some water in the cuff part of his trach. The little sheet said it was "deflated"... obviously, it wasn't. A new medication for his secretions was started this week. None of the nurses were able to tell us why except for that it will help with his nasal and oral secretions. Frankly, they are BETTER than before his trach was placed AND it only makes his secretions thicker which can cause more issues from a trach standpoint. Unfortunately, I'm so new to this game that I am very trusting of the doctors and that sort of thing. Pray for God to give us the wisdom and know when to speak up against doctor's orders.
So it's going to be very hard and very tiring and very stressful, but I need my baby out of the hospital. We need to be home as a family. I will look back at this time and I know that God will give me a renewed inner strength to press on and serve my family--the family He has given me, each and every member.
argh! i'm frustrated for you. sad to say, this is just the way it can be while in the hospital, depending on the unit. i'm sorry this unit is not a good fit right now, but i can totally see it being used by God to show you how much more you will appreciate being at home.
ReplyDeletewe continue to pray for strength, smooth lines of communication, healing and protection over malachi, and for God's glory to be seen by all.
Love,
the Nelsons
P.S. I recently came across a book that has helped me so, so much and it's called A Differnt Dream for My Child by Jolene Philo. I link to it in my sidebar of my blog. I know you're super busy, but it really is a great book to encourage you during this time.
Friend...I'm going crazy for you!
ReplyDeleteSee...I'm all about advocating...and no just for my children. I feel like I need to be YOUR advocate. NOT Malachi's...you are doing an AWESOME job there! :0)
I know your time there is limited at this point *God willing* but if I could connect you with someone to share this with...would you be willing to? I just feel like, we ALL know it shouldn't be this hard...and that these things happen...BUT, it's preventable.
I get it if you don't have the energy or don't want to feel like you are "making waves"...let me know though! :0)
Praying for all of the home nursing to come together seamlessly!
My heart aches for you because we were there 100% just 3 years ago. And when we go back to the hospitals for surgeries we start over and the staff quickly finds out that Kevin and I are not "sit back parents" and we speak very clearly to the staff what we want for O.
ReplyDeleteThere was a breaking point in Owen's 7 month hospital stay that I finally said forget it I am not at the hospital to make friends, (nor make enemies!) so I began to speak up and ask gazillions of questions, and if they could not answer them, I asked them to find some one who could or call the doc. Kevin and I called for meetings among all of his docs and we asked for specific nurses because in the long run it helped Owen and us know of any changes.
Malachi was entrusted to you and John for many reasons. You know some of those reasons now and you will understand more later. You are one savvy, loving and smart momma! I saw that just for the few hours we had together. Trust your momma gut, your Gog given intuition and speak on behalf of your sweet Malachi!
What can we do? We are here to help make the path of transition easier. Yes, the first few weeks are kinda weird when a nurse is helping take care of your baby, finding boundaries and know what is expected of mom and nurse duties. We felt all those feelings. But I can promise you that it does become "normal". Our prayer is that you have nurses that become a part of the family.
They have for ours and it has been a huge blessing! Then there is the whole getting use to a baby with extra stuff! Again, I can promise,it becomes "normal". I will also say there are tears during the process of getting there, but that is to be expected. Keep talking to John and your other family members as you walk through this next chapter at home.
We are here and we are praying.
Hugs and love,
Kelly Carr
There is (unfortunatly) a BIG learning curve for us as parents with kids like this. You will get there...I know it's so hard....
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