My last post on Thursday night, was the end of a better day for Hope. . . we were thankful and encouraged. We were reminded that this is a long road of ups and downs, as Friday (yesterday) was definitely a worse day. Hope could not even tolerate more than 5 minutes in the reclining chair without major spasms plaguing her. There were lots of spasms throughout the day, pretty much every time she moved or was moved. . . spasms mean screaming, as they are extremely painful. . . and screaming means everyone in the family is exhausted physically and emotionally after a long day of it. I decided to call the ortho clinic nurse before the weekend, with a few questions.
Although she was concerned about an increase in pain, as we talked through the symptoms Hope was having and asked Hope a few more questions, the nurse determined that they were not neurological symptoms. According to Hope, and the nurse agrees, it is "unhappy muscles" (probably nerves and ligaments too), that are not used to being in the new position that Hope's torso was changed to. Particularly because the pain is not radiating and it is in one location over her left scapula, which has changed it's position, the nurse believes it is likely muscle spasms. This was helpful to determine because if it is neurological symptoms, then we are to take Hope back to the hospital immediately. However, if it is muscle spasms, then we just wait it out and provide comfort measure directed towards muscles. I asked about giving Hope an over the counter muscle relaxant rather than the Ibuprofen to see if that might help, and the nurse thought that was a good idea. In addition to the heat, massage, and position changes, I also asked the nurse if we could not push Hope as hard to spend more time up in a chair, as long as she was having such bad spasms. Again the nurse agreed that it was a wise compromise to increase her deep breathing exercises and give her a break from the chair when her spasms were so bad. Because Hope is up to the bathroom about 5 times per day, and does a little bit of standing with those trips, as well, that also counts towards her time of being upright and getting her lungs better expanded so as to avoid a lung infection, which surgical patients (especially long surgeries like Hope's) are at higher risk for. We were very appreciative of the nurse and her helpful assessment and advice!
Today was again an up day for Hope, with less spasms. We also had a thought to try the wheelchair again, rather than the recliner chair. Perhaps the positioning would be more favorable for Hope's back, and result in less spasms. Hope was very fearful of trying either due to all the spasms. . . and her fear makes her more tense, which then makes her more prone for the back spasms. . . it's a vicious cycle! So we tried the wheelchair, and Hope did much better. She was able to sit up for two meals today! This is especially good because Hope has been more prone to choke over the last few days, and had a few episodes on Friday. This definitely puts her at higher risk for lung infections. So we made the rule that she has to eat sitting up. It went much better today. She only had one choking episode when she was crying, feeling short of breath/unable to breathe while resisting going into her chair for the first time today. She sucked spit down the wrong pipe, which made her even more stressed. . . poor girlie. I think that her lungs are not at full capacity right now, because of this increased propensity for choking, as well as increased complaints of shortness of breath, and not a lot of time being upright. She is great at being obedient and wise when she is calm though, and tonight she was asking me to practice her deep breathing with the pinwheel before bed!
The other thing that can affect her breathing is the Morphine, and we are also running out of it. So we decided tonight after a good day, to not give her evening dose of Morphine. I gave her Ibuprofen at bedtime instead. We will give her Morphine in the morning before getting her up and moving again, and that should provide pain coverage for up to 12 hours, which would be the majority of her waking hours. Then she is getting half of the Morphine and we'll be able to stretch out her prescription a bit longer. We still have two more weeks until we see the surgeon for follow up post op. We are praying that this was wise timing for this change. We had already cut back on the Tylenol/Ibuprofen during the day, as it did not seem to touch the spasms which are her worst pain by far anyways. So we still have those options for pain control overnight. Hoping and praying she'll just have a great sleep with no waking up for bathroom or spasms!
The other BIG news for today was that we did Hope's FIRST post op shower! We were all dreading it, and trying to pick a wise time around pain meds, less spasms, good breathing, etc.! So we went for it this evening. Trevor put on swim trunks and got in the tub with her to help support her neck and trunk while she sat on a mat in the tub. I ran the shower nozzle and did the bath as gently yet swiftly as I could. Hope even helped out as much as she could. Her hair was bad. . . really really matted, which Hope has always been prone too since a child! Her fine, yet thick hair, mats very easily, especially when lying on it for a long time and turning her head back and forth a fair amount! So not only was it difficult to wash, but the combing it out, was horrific! And Hope still has a very sore stiff neck, and already has a sensitive scalp (especially her "baby hairs" as she calls them at the nape of her neck, which was one of the most matted areas).
The whole process took about 2 hours to complete. We were all very exhausted afterwards, but relieved that we had got through the first shower! The first is always the worst! Hope's dressing did start to lift off on one end, so I'll be needing to watch that closely. Hope's hair combing was horrific, as I thought it would be. But Gabs and I tried our best to distract her with stories, give breaks when it got too overwhelming, use LOTS of spray in conditioner, split it into chunks of hair and alternate to give sections of her scalp a rest when it got so bad, and anything else we could think of. It didn't make it easy, but she did get through it, and she honestly was an amazing little trooper through a really unpleasant thing for sure! And Gabs was such a sweetie to comfort and distract her sister with me! I took some "before and after" pictures for fun. . .
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| Hope did a great "scary" face for us here. . . that hair was certainly scary!!! She was on her way to having some dreads if we had left it for much longer! : ) |
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| Sooooo much better! Her smile was quite precious here, especially if you knew the behind the scenes story. . . she was exhausted after the 2 hour shower/comb hair gong show (half the hair combing was in her bed, and the other half had to be in her chair so I could get to the tougher areas). Lots and lots of tears. Then she stayed sitting up to eat supper, and this was then taken on her way to bed. She actually was quite tired and sore, and NOT smiley. . . but when I asked for an "after" picture for her blog, she mustered up a pretty genuine and sweet smile! How she blesses our hearts!!! : ) Soooo thankful for a clean girl!!! : ) |
So Hope and I are going to have to stay home from church again tomorrow, as she is not able to sit up nearly long enough to make it through the service. Although Trev and I will take Hope to the bathroom before he leaves in the morning and he'll hurry back after church, a sweet friend is going to come and hang out with Hope and I, in case of any necessary bathroom trips before daddy can get home! At least we can listen to the church service online at home, but how we miss being with out church family. . . maybe next week!
It is our church's week of prayer this coming week, and our family has picked a half hour time slot that we will be praying every evening this week! We are excited to be making this commitment as a family! We have many people and situations that we already pray about. . . near and far! However, if anyone has something that they would like us to include in our prayer times this week, please share it with us. . . we'd love to have the opportunity to pray for you, dear ones! Thank you for your continued prayers for our girlie. Her biggest prayer requests at this point would be pain control, progressing in her ability to sit up/stand/move, healing, protection again lung or incision infection, and rest! Hope is also going to start doing some school work from home this next week, and listen in on classes live. We'll start slow and see how she does, then increase as we can, so she doesn't fall so far behind.
Much love to each of you, dear ones! Praising God for His love and provision each and every minute of the day, and praising God for you!!!
Lotsa love and prayers,
the Peacock flock : )
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