Hope slept fairly well last night but expressed pain whenever awake or moving, so I kept up her breakthrough pain medication as well. However, we both fell asleep in the wee hours of the morning and didn't wake up as early as I wanted to get a start on her breakthrough pain med for the morning. So her morning ended up being fairly miserable trying to get on top of pain. We are definitely finding 7:30-10:30 am or pm as times that her pain intensifies due to the long acting Morphine wearing off. So we're trying to make sure that time is covered well by the breakthrough pain med.
Gabs spent the night with Hope and I. Her and I shared a parent bed in the room, so it was a bit of a tight fit. . . ha ha!. . . especially when the littlest body sleeps like she has the bed to herself! ; ) Loved having BOTH girls. Being apart at night is one of the toughest parts of hospital stays. Trev arrived at about 12:30 and had a very happy Hopey to see her daddy. I had got her pain med loaded up so that we could get her up into her wheelchair that has been hugely revamped for her new body shape.
She did GREAT being up in the chair, and while mom caught a quick shower, Hope and Daddio went for a nice long walk. Hope did fantastic and even though our goal was a 30 min sit in the wheelchair, she lasted a little over 1.5 hours! She was begging her daddy to keep going and said that the chair actually felt more comfortable as she continues to have positioning issues when in bed due to her bulky back dressing, and her ribs hurting and causing shortness of breath when lying on her sides. Here is a picture from that great couple hours. . .
|What a cutie!!! Ahem. . . TALL cutie!!! : ) Can't believe how tall she sits now!|
Still I would say that overall, Hope is doing a bit better day by day. She is still having terrible neck pain, although she did tolerate and even enjoy us rubbing very gently her neck with an essential oil mix, for comfort! Her headaches were less today, although still present. She had less back spasms than yesterday. She complained of a lot of rib pain that cause her to be short of breath when lying on her sides, so that has been frustrating to not have a way to position her in bed comfortably, or even relatively so! Earlier today, Hope said, "Mom, there is just NO way to get comfortable!" My sweet girlie. . . how I ache to be able to make all this suffering go away! We are needing to stay focused on the little achievements or improvements, by God's loving grace and mercy, rather than the long road yet ahead. Here is a picture of Hope finding comfort in a LONG hug with her daddy! So sweet. . .
|Finding comfort and security in the arms of her daddy as he lovingly leaned over her bed for almost 10 minutes to hug his hurting girlie! What a great daddy!!! : ) So sweet!!!|
The side or rib pain causing shortness of breath, has Hope asking for oxygen still. In checking her oxygen sats while off blow by oxygen, we realized that she is dipping down to low 80's. So she is still requiring some oxygen support, especially since she is symptomatic in feeling short of breath or unable to breath, as she describes. This likely has to do with pain and taking more shallow breaths. So again, most issues come down to good pain control at the root cause! As long as Hope is needing oxygen support, then we will need to be at the hospital. However, the surgeon did stop by today as he was called in, and he mentioned going home possible tomorrow or Monday! So, we were determined to work at her being up in the chair, and other things that will need to be in place for us to go home!
Hope wanted me to tell you about the funny thing her daddy did today. . . he made some fresh salsa at home this morning before coming to the hospital, and brought it as a snack. He fed some to Hope, but as usual, he had gone a little overboard with the hot peppers! Hope's mouth was on fire, and she drank almost an entire 350 ml glass of water in just a few minutes! Daddy felt bad, and Hope teased him by saying, "Daddy, did you do this to try to make me drink more fluids!" Ha ha ha! It was great to see her humor and wittiness back! : ) And to be honest, daddy's unconventional method did in fact get our girlie drinking better today! Praising the Lord for mysterious ways! : )
With great drinking and the last of IV fluids, Hope has now started diuresing or pulling out all the fluids from her puffy body (head to toe, she has been so swollen), and peeing it out! She has been going hourly this evening, and diruesed over a litre of fluid in just 4 hours! So funny how this girl follows patterns. Yesterday, a nurse commented that Hope was diuresing now. . . I laughed and told her, "Oh no. . . this is not Hope diuresing, when she is, you'll have no doubt! I remember last time she peed about a litre in four hours!" And voila!!! : )
This is great for Hope's wound drainage, and her general puffiness! However, it does mean frequent hourly trips up to the commode, and a lot more movement means a lot more pain! So tonight she has been very sore and uncomfortable! Praying that it will slow down now and she will be able to get some rest. She is listening to me write this note, waiting to fall asleep right now!
Going home tomorrow would be most wonderful for all of us. However, we also want to be wise in not pushing Hope too fast or being unsafe. With going home on some major narcotic pain meds, and with Hope's unknown cause of her respiratory/cardiac arrest when on Codeine only, it feels a bit scary to do this. We have not gone home on pain meds since Hope's tonsillectomy! So please pray for her safety, and for wisdom for the surgeon and for us as to when we go home. He said today, that we could make the decision as to which day we go home . . . feels exciting and nerve-wracking at the same time. We need the Lord's wisdom, and peace to trust Him in the days ahead at home, and our precious girlie's future!
We got to see Hope's very first in hospital PT who we have not seen since March 2012! It was so wonderful to catch up with her and for her to see how far Hope has come since those days long ago! We even got to meet her sweet little son, now 2 1/2, that was kicking Hopey from his mommy's belly as Hope was snug and safe in the PT's arms in the pool during therapy! It was a very special visit with someone who played a huge part in Hope's very early weeks of recovery.
Well, dear ones, I think Hopey has now dozed off, and so as I continue to doze off myself, I should join my two now sleeping girlies, and get some rest while I have the chance! We are so thankful for you and your precious prayers, suggestions and thoughts on things/info that might help Hope's recovery. God is so faithful and He is carrying us through this. I will be honest to say that it is hard, very hard! Hard to watch your precious child suffer and continue to suffer with little you can do to help comfort her. Hard to make tough decisions. Hard to keep going when you're so tired. Hard to be apart as a family. Lots more, but I'm sure you get the idea, and I just dozed off again! So blabby Heather is going to stop blabbing with all my dear friends that continue to lift us up, as well as praise the Lord for His loving kindness, His healing, and His mercies that are new every morning. Circumstances can be hard and overwhelming but His grace is always sufficient! We are clinging to this promise and truth!
You are so very loved!!!