Abby looks great today. Finally a good day. No nausea, no fever, no icky pale/gray look, only a few times did she stare off with a glassy, far away look. All in all, a little fussy this morning, but fine. She had blood work drawn today, so hopefully we'll see her counts are better and she's tolerating being off of TPN.
Emily had no noticeable seizures today. The most fun she had all day was helping me clean out Nola's ears. She just loves gross stuff, which I think is pretty funny. She's been letting Nola on her bed all the time lately. It's very cute, but it drives me a little crazy because of the only not fun thing about dogs: DOG HAIR! When I come in and find Nola cuddled up with her, she takes one look at me at starts laughing, what can I say? They are both so happy.
Again?
A little play time with clean ears :)
So the girls are good, I guess that means I finally get to have a day when I can fall apart just a little. I'm walking around the house wondering how in the world I'm gonna smash 10 years of "stuff" into a moving truck. Seriously, freaking me out! I'm sad about everything we're leaving behind but so excited about having my family together again.
I guess I'm just destined to live a life of contrasts. Shadowed Joy. There's always light, but rarely without darkness. It makes it so much easier to see the only true Light. The light of the living God that does not fade :)
I'm thankful to spend even a single day thinking about what any normal person in my situation would be thinking of. Feeding kids, moving, feeding kids, moving, feeding kids, moving...well you get it. I have no idea what tomorrow will bring, so today, I'll indulge in the luxury of being just a tiny bit normal.
I'm sure I won't get too used to it, but I'm thankful for now.
I read this quote recently, and it's stayed with me: What if you woke up tomorrow with only the things you've thanked God for?
Abby's doing alright at home. She's still running a low fever (100-100.4). She looks OK sometimes and sometimes her color is bad. She gets this sort-of gray tint to her skin that makes us all nervous.
There is nothing obviously wrong with her. The initial blood culture result was negative. Praise God!
Our AC went out Thursday. I can't tell you how much fun that is in Florida. I'm kind of tired of things going wrong. It's all so much. There are sprinkles of blessings in everything that happens in our lives.
I'm ready for GIANT amounts of good with just a little bad sprinkled in for a while. I have faith and I trust God's plan, but I've also had enough.
The AC was fixed quickly enough and I am very grateful for that. I don't think it was very good for Abby to be so hot and taking her out to a cooler place carried its own risk with her low white counts. I'm hoping for a good week, because Lord knows, I need it.
Jeff and I are officially picking a move date this weekend. Talk about faith. I don't want to go into the millions of reason I am terrified of moving, but I will say I'm just praying we find some joy and excitement in this time of transition, and then that we would find a Dr. capable of handling Abby. :)
wrote this 6/22, just didn't get a chance to post...
Abby was able to come today, which is really a miracle!!!
Yesterday her low white count was confirmed and we were told her blood cultures were positive and we would stay a week or so for antibiotics. Later that day, we were told there was a contaminant in the sample and her actual blood was negative.
She stayed over night to be sure her fever stayed gone and we chalked it up to a virus.
The problem is that her blood work doesn't really make sense for viral or bacterial infection, but obviously she had something. Her white count is 1.7 k, it should be 5-10 k, her platelets were very low but are coming up. The rest of her blood work was only marginally abnormal.
This morning, I was discussing what contaminated the blood sample with Abby's Dr. She explained that sometimes when the blood is drawn from the skin it can pick up common bacteria at that site. They actually didn't stick Abby for the sample, it came from the central line. It made it a little more confusing as to how that happened. The Dr. ordered a new set of cultures that hopefully will come back clear.
Because we wouldn't have done anything other than wait in the hospital, we came home to wait. If it comes back positive (which none of us expect) we will have to go back.
In the mean time, due to the low white count, and not having a clear source for the fever, we have to be hyper-vigilant with hand washing and watching her temperature closely.
The good news is that in the hospital she was on straight IV fluids instead of TPN. We've decided to give it a try at home as well. I am so excited about that. She still needs quite a bit of IV fluids, but I'm grateful it's so much safer for her than TPN. I'm praying she doesn't lose too much weight as we switch over. She's not loving her feedings while she's sick, but she's hanging in there with a little more than half of what she normally gets. I will definitely try to get her back on track quickly to stay off of TPN.
I feel so helpless as I watch my kids have such a hard time. As I was leaving the hospital today I walked alone with Abby down a very long hallway and began to notice single words on the walls. Grace. Strength. Faith. Hope. Love. There were many more words, but the one that struck this weary Momma was Courage. I hadn't ever really thought of faith as courageous. Just necessary. My Bible's concordance references 33 places where someone was encouraged to be courageous. I think it spoke to my heart because it's an action. I am completely out of control in these situations. There is absolutely nothing I can do to change what my kids are going through or to make it easier. But, I can work on courage as it pertains to faith.
I am so thankful for my God who not only desires to walk beside me (ps. 23:4), wipe away tears (Is 25:8), love incomparably (Eph. 5:1-2), but to give me something to do; a commission when I am helpless. How His love is lavished upon us, even as I have nothing to offer other than putting one foot in front of the other and moving forward simply because He asked me to. He gives me purpose rather than the darkness that can so easily creep in.
"Be on your guard; stand firm in the faith; be courageous; be strong. Do everything in love." 1Cor. 16:13-14 (NIV)
I guess one of the good things about being in the hospital room is I have a little time to write. The unfortunate thing is I have more to write about. As we all know by now, Abby doesn't play by the rules.
Good news first:
~The initial blood culture is negative. It doesn't mean it won't grow something, but that's good news!
~Her fever is down. It broke during the night and has stayed down today. Thank God for that.
I'm not sure/ maybe bad news:
~Abby's morning labs were a mess. Her platelets are very low, and her white count dropped from 4.2 to 1.6 over night. This could be from a nasty virus, the antibiotics suppressing her immune system or a bad draw. After discussion between her doctors and infectious disease, they decided the most dangerous thing to do would be to take her off antibiotics (even if they are suppressing the bone marrow) if she should have a line infection, it could be fatal. The best case would be fluke in the blood draw. The worst case would be a severely depressed immune system. Abby would have to stay here on precautions until her counts recovered.
~She's still struggling with the Vancomycin. She itches and continues to have a rash with it. She'll get benadryl before the rest of the doses to keep the reactions to a minimum. That's good and bad because she needs to sleep, but I don't want her up all night because she slept on the benadryl during the day.
She won't go home tomorrow like I hoped. If all the cultures are negative they will stop the antibiotics and keep her for 24 hours to be sure she's alright and the fever doesn't come back. If the white count continues to be low, we'll see what happens. The Dr. told me to plan for the week and hope for Wednesday, so that's what I'm doing.
That's it for now. Just trying to trust God's plan and praying we make it out of here soon.
Abby was admitted to the hospital today to rule out a central line infection.
This will be quick because of lack of sleep.
Abby started running a high fever today. 102.9. I actually went to the store to buy a new thermometer or two to be sure it's was really that high. It really was.
The short version of today is that Abby was admitted with the assumption she has a line infection and the hope that it's a virus. Her white count was low, as were her platelets (very low). The concern is that sometimes big infections knock out the white count instead of raising it.
Her heart rate has stayed high all day and her O2 sats are teetering between 90-93, which is a little low for her. Occasionally we see 95 for a minute or two. I can tell the sat monitor is going to drive me nuts tonight.
She was given two antibiotic's in the ER, the second one (vancomycin) caused "red man syndrome" where poor Abby turned bright red from head to toe and had hives. A dose of benadryl cured it quickly, and apparently it's not an allergy, the medicine just needs to go in slower.
The most difficult thing today has been a very persistent fever. It went down once to 99 for about an hour, but otherwise it has stubbornly stayed between 101-103. Not good news.
Within the first hour of being in our room, her overnight stay changed to at least 48 hours for antibiotics. If her blood cultures are positive, well, I didn't even ask.
Let's hope that we go home Tuesday or Wednesday.
I'm beyond tired and I just choked on my spit, and can't cough because I don't want to wake Abby--Man, someone needs to write a book on motherhood that includes this kind of day--lol!
Okay, better now. Praying for a normal temp and negative blood cultures :)
I'll start with my most awesome news today and that is that Emily and Abby's Personal care hours were reinstated. I couldn't be more shocked. I have been praying constantly as the last few weeks have been very hard on me without my helpers. We've done well because God is faithful and He provides, but it hasn't been easy. I'll be able to catch up a bit now. Whew!! Thank you Lord for that awesome answer to prayer.
We were also blessed by some new equipment for the girls. The family that lost their sweet son 2 weeks ago generously donated a stander, bath seat, walker and other goodies to my girls. I can't wait to post pictures of the girls standing, they are getting so tall. It was as much a treat to talk with his mom about raising our very special children as it was to get some new stuff to do with the kids. I love how God speaks to my heart through the lives of others. He definitely spoke to me yesterday, so thank you Kathi!
My baby girls Sarah turned 11 on Monday. I'm going to sit down and write the story of my miracle Sarah soon. I was going to do it for her birthday, but I didn't have time. Sarah is so special to me. She is an everyday reminder of the power of God and the way He restores lives.
This week is vacation bible school at our church. I LOVE this week. It's so much fun and our special needs class is, of course, the best! I am transitioning out of leading the group because we're moving. I'm so thankful for the others willing to step up and lead, but I will miss it. I'm not going tonight to give the new leaders some time, but I want to go!
Abby reminding us that God created birds!
creation kids :)
Emily and Hannah
Abby kind of needs a break. I took her to VBS Monday and Tuesday, but she's not feeling so great today. A lot of activity, no matter how much she loves it, is hard on her. She's a little pale and nauseated today. Her belly is puffy, so I think a day off would help a lot. It is very sad for me to see her struggle even through one of her favorite things to do. She's okay, but she's not okay.
We saw Abby's GI doctor today. Friday will be exactly 5 months from when she was admitted to the hospital. I'm disappointed that she hasn't made more progress. I know she's much better than she was, but it's still so far from where I want to be. We are not moving her IV fluids for another week and then we'll see how she looks. He told me today that when she goes off of TPN, she'll probably need to stay on regular IV fluids for a while. Her nutrition requirements are almost met, but her daily fluid requirements are at about 60%.
It's a frustratingly slow process and I am tired of it. I see Abby's personality changing a little. She's tired of it too. I continue to trust that God has a plan in this, but it's hard to understand. I always go back to Hebrews and the "Hall of Faith". None of those people knew what God was trying to accomplish and yet thousands of years later their faith speaks to my life. Hooking up an IV bag to my poor Abby for 5 months isn't that big of a deal. But learning to trust a plan that makes no sense to me, I'm sure holds some eternal value for all of us.
I continue to hold tightly to the belief that God loves Abby more than I could ever imagine loving her. She is safe in His arms, especially on the days when I''m disappointed that she doesn't feel as safe in my arms.
"May your unfailing love be my comfort, according to your promise to your servant." Psalm 119:76
I'm almost afraid to say that things might just settle down for us a little bit for the next few weeks. Every day has been packed from first light to moon light with pure busy. I am a Martha who longs to be a Mary. I want to sit with Jesus and learn from Him, but I usually find myself pulled into "busy" by life.
Abby is always front and center for us now as nearly 5 months of illness is our focus. There is good news with her. She's tolerating the new formula relatively well and we are weaning off of TPN. If she continues to do well she'll be off in 2 weeks. I'm definitely nervous, but excited. The constant risk of infection looming over our heads is something I will not miss. I also won't miss the hospital feel of our house. I will miss the security of knowing whatever she does with her feedings during the day, she has a back up. She's almost made it to her full feeding goal, but not her full fluid requirements. It'll come, I'm sure.
As soon as she is stable, we plan to move...just pack up and leave town. I can't wait to share the responsibility of the kids again. Not just the work, although I'm looking forward to the help, but the weight of all of the decisions that have to be made for their care. Jeff did accidentally pull Abby's g-tube out--balloon and all yesterday. He went to pick her up from her wheelchair and the line caught on the chair and out popped the tube. Thankfully, we were able to get a new one in quickly. Drama, drama, drama!
The balloon holds the tube in her stomach, the other part sits on top of her belly where the food goes in.
~We took Emily to a Memorial Day parade that Sarah was in with her Girl Scout troop. She liked the parade, but she mostly liked Nola being there. It was really cute.
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~We found a house in North Carolina that seems perfect for us. An elderly couple with scooters lived there, so it's fully accessible. I couldn't have dreamed a more perfect place to live. As a matter of fact, I did dream this house. It's an older house, which I love. It's not extravagant or elegant, but it looks like a home to me. It has an elevator and wide doors. There are no steps to get outside and the best part is it has a small house out back for family. We love to have family visit, but it's hard to have people in the house so long with the girls. I always thought it was a distant dream to have a guest house. This house is right in the middle of our price range and $30,000 less than the house we're in now.
We are praying for a miracle regarding this house. We aren't sure we can swing it with our current house and lenders not wanting to lend in this market. God is a big God and if this is where we are supposed to be, it will work out. But, it will be a miracle, so I am boldly asking Him for it. I can't wait to see how He answers. I need some pure-good in our lives now!!
~Speaking of good, I've been a Martha lately because I was getting ready for Hannah's graduation. Company coming in, and party planning have kept me very busy. It all went very well and we couldn't be more proud or excited for Hannah. I know I'm going to miss having her here everyday when she goes to college, but it's a very cool mix of knowing it's her time and wishing she would stay. I have raised a child that I not only love, but like. She's smart, funny, confident and overall just a cool girl. She absolutely does things that drive me crazy, but I'm sure I drive her nuts too.
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~We also found out 5/31 that effective 6/1 our personal care hours for the girls would be cut in half. That's always fun for summer. We are down to six shared hours per day. I'm not sure if the Lord is just closing doors for us here as we prepare to move or if I need to continue to fight for Emily and Abby. It's very confusing. I'm going to appeal because we still have a while here in Fl and need the help. I wish it could be easy sometimes. It's just not. :(
~On a sad note, one of my blog friends lost her precious son this week. He went to bed and just didn't wake up here on earth. He is so much like Emily and Abby, and his mom has been an amazing source of strength and wisdom for me. She understands how I feel about my girls and has been able to help me many times just by saying just the right thing. I've never met her in person, but I grieve her sweet boy and my heart aches for her loss. I can't help but see myself and my children in her situation. I have always done so. I look at pictures of him now, looking for something, anything, that's different about him from my kids and it's just not there. I have laid my daughters down to bed the last few nights with an extra kiss and a routine that slowed down just a bit. I think there is never enough time. Please pray for this family as God walks them through this time.
~I am going to try hard to get in to a summer routine quickly and pray that our move goes miraculously smoothly. I am going to work on being a Mary in my Martha world this summer. I am excited now, because I'll finally see what God saw last March when Jeff lost his job. I'll finally get to see how He brings this crazy, hard year to a close.
~Speaking of closing, I'll leave you with the first 18 years of our sweet Hannah. Enjoy!
I'm so glad you stopped by. I invite you to follow me as I follow Him. Your comments are welcomed and appreciated. I hope you are encouraged by our immeasurable God and pray you see the Author of our lives in the words I write.
I'm married to a fabulous guy and the mother of four amazing girls. 19 year old Hannah who is in her second year of college, twins Emily, 15 and Abby, forever 14, and Sarah is 12. Emily and Abby were diagnosed with Cerebral Palsy that left them unable to walk or talk, with only a few words (yes, no, more). Even with severe physical limitations, their smart, funny personalities bring us incredible joy. Sadly, Abby passed away September 2012.
I write and speak about the journey of 'my way' becoming His will daily in my life. This is truly a life of faithfully hanging on.
"Now may the God of peace, who through the blood of the eternal covenant brought back from the dead our Lord Jesus, that great Shepherd of the sheep, equip you with everything good for doing his will, and may he work in us what is pleasing to him, through Jesus Christ, to whom be glory for ever and ever. Amen."
