Hello dear praying friends and family! Hope asked me to please post this on her blog and ask people to pray. I cannot say how it blesses this tired mama's heart to hear my daughter ask me to do that. . . she knows where her hope lies. . . in the God who is hearing every single word uttered on her behalf and always at work, and her knowledge that so many people love her so much to be praying for her throughout this journey. Thank you just doesn't quite cut it for the thanks I have in my heart to the Lord for each and every one of you, dear ones!!!
Here is a list of things going on and how you can be praying. . .
Hope has only had about 2 hours off and on of sleep so far tonight and the entire time she has alarms going off for her oxygen levels. Hope has had this problem much worse in the past and after much assessment, many problems and little options for treatment, they decided to let things be after she had shown much improvement. However, she still tends to desat (drop below 90% oxygen levels) at night when she is sleeping. At home we don't monitor her oxygen levels and so it's not an issue (although it doesn't mean that she isn't still desat'ing). However, in the hospital this has always been an issue because she is monitored continuously and so the alarms go off steady all night long preventing anyone from sleeping. We have tried oxygen in the past, both blow by and through prongs or even a mask, and although it helps a little, it is hugely upsetting to Hope. It makes her feel panicky, sick and she simply refuses to keep it on. Tonight she is having these same issues, but being post-op, being on a continuous Morphine infusion for pain, and a history of chronic issues, with orders for an oxygen level above 94%, the nurses are not willing to lower the alarm settings to 85%, so we are only alerted when she dips on the lower side vs where she sits at 87-90% typically when sleeping. I understand and respect the hospital policies and the nurses' rationale for refusing to change the parameters. However, it is also not good for Hope or I to not sleep all night long. We all agree that because it only alarms when Hope is sleeping, that it is not the Morphine causing this. . . it is most likely obstructive breathing when she is fast asleep, which even oxygen is only going to help so much. Her respiration level has remained steady and good with no periodic breathing (rhythmic pauses in her breathing) like she had severely in the past and still has occasionally at home even recently. So the 2 year old dilemma that leaves everyone frustrated! And mommy and Hope VERY tired! I have talked with Hope and got her to try the oxygen but it is making her feel sick and she will only leave it on for a short while before pulling it off and then go the alarms. . . the alarms wake her up and she tries to take deep breaths, but will only last so long until her exhausted body tries to sleep and on go the alarms again. . . such is the cycle that seems to have no end in sight.
Hope is also struggling with pain, so decreasing the Morphine is not a good option either. Her pump site is bothering her the most right now, and so we are currently trying a warm blanket to comfort the aching muscles. But the pain seems to rotate from her back, to her pump site, to her right foot, to her gas pain. So she's not very comfortable, however she really is being a trooper in dealing with this, and complains very little. She is moving better and guarding less than she was before the Morphine infusion had time to kick in. So it does seem to be somewhat effective and she has not had any further reactions to it! Praising the Lord for this!
We are praising the Lord that her urine output has picked up and is now in overabundance due to her great drinking this evening. However her catheter is not draining very well and so it keeps her feeling like she has to go pee. Not a very nice feeling when you're stuck lying flat in bed for 2 days. So, I can work with it and drain it better to help empty her bladder to lessen the feeling of needing to go pee. I also changed the way the catheter was secured and it is draining better than before and not hurting her so much, but it still isn't doing a great job.
Hope is also having a some weird discomfort in her right foot which she describes as a tight twisting pain. Her foot is more stiff than usual and turning in like it did a long time ago before her dystonia had begun to improve so drastically. I'm not sure what is causing this and have tried several things to help. Propping it on a rolled blanket has been the latest thing that seems to be helping a bit and making it tolerable.
Hope is also quite bloated and having a lot of gas pain and movement. This is typical after surgery, especially abdominal surgery. That is why it is hugely pushed to be up and walking around after surgery as soon as possible to get the lungs breathing better and the gas that builds up starting to clear out. Obviously Hope is not able to be up at all, and so this is going to be more difficult for her body to resolve.
So, these are things that Hope would ask and love to have you join us in praying for. Please pray that we might yet get some sleep tonight. It is 4 am, and I have yet to sleep. Hope has fallen asleep again, but the alarm is going steady. I'm going to go see if I can sneak the oxygen on again while she sleeps. . . this has yet to prove possible! She's such a heavy sleeper until there is oxygen blowing in her nose! She has horrible memories of this in the past and it really is a huge terror for her, which makes it really hard on mom to work through with her. Okay going to run and try it again. Thank you SO very much for your prayers, dear ones!!!
You are so very loved and precious to us!!!