I have some majorly awesomely exciting news that I know that you want to hear. Are you sitting down yet?
After over 14 months of trials and tribulations, Mandy is finally coming home!!!!!!!!!!!
Teresa and I are so excited. We have dreamed of this day. We had most of what we needed, and it’s all been sitting there at home for over a year. After a while, you start to wonder if it is ever going to happen. And it finally has.
So here is what is happening now.
Teresa and I are staying at the hospital doing our final training. We will be staying here for about a month ( we’ve been here about a week and a half now) We finished off the respiratory part, and most of the medical. We have a few things to finish up, including becoming CPR certified. That should happen next week. After that we will be doing 24 hour care for about 2 weeks. The hospital has a special area setup like a small apartment. Mandy will be moved over there and we will take over her care. The staff will be available if we need them but the idea is work through things ourselves. Once that is complete, then Mandy will be released to go home.
In our absence our house is being completely setup. Our living room will be “Mandy Central” with her crib, dresser and changing table and equipment being the centerpiece. I’ll try to snap a picture so that you can see it.
And we found out that we will get some help. We will have nursing and attendant care to help us.
Now on to Mandy herself….
She is continuing to slowly gain weight. She is up to 14.3 pounds as of last night. She is becoming very active now, constantly kicking and rolling around in her crib. The only problem is the pulse oxygen monitor. It is very sensitive and frankly was not designed for babies. So every time she starts kicking or if the wire to the sensor is not set just right, it sets off her alarm. I got woken up 3 times this morning, rushed over to check on her, just find out that she had gotten tangled up in the cord, and was barely moving her foot. After the third time I picked her up and rocked her back to sleep. I see some long nights coming ?
She’s teething now. In fact she has 4 teeth in. So she is chewing on everything in sight, including her g-tube and pulse ox cord. Every time I catch her holding one, I gently take it away and tell her no. But how do you tell a baby that what they are doing could hurt them. The G-tube goes into her belly, and will be very painful if she manages to pull it out. If she chews a hole in the g-tube, it will spray formula all over.
There has been some progress in her respiratory care as well. Her doctor has changed her from just using heated air to an H.M.E. (heat and moisture exchanger) during the day. It’s essentially a filter that fits over the Trach and holds in moisture. On Monday they are going try a passing air valve, which forces her to breathe out through her mouth. But the coolest part for me is if she can tolerate it, then we will able to hear her cry and make noise for the first time since she was born! I cant wait!
We have made some major progress.
There are still a lot of questions to be answered. We are not totally clear what will be paid for by our insurance and what we will have to pay for. The biggest concern is her formula which is very expensive. I checked online and it was something like $139.00 a case. Regardless we will have to make some adjustments to our budget. But I know that God has never let us down. He will provide as he always does. ?
So I would like to request prayer for the following;
Strength to finish the training
Wisdom to work out the kinks
Favor where we need it
God’s provision for everything we need
Thank You for all the prayers and support. We would not have gotten this far without them.
Love in Christ