Lines

A sure sign that Abby is in the hospital for a line infection: a crowded IV pole.




Last night was pretty bad. She had a dose of Benadryl, then the vancomycin. She completely lost her mind on the Benadryl. She screamed, kicked, thrashed and tried to bite. Those meds make her crazy. Pure and simple. We knew she was growing gram + cocci, so vanc is best, but not for her. Thankfully, they changed antibiotics after the first dose because of the awful night.

She used energy she really doesn't have. She's been wiped out all day. By this evening she could barely hold her head up. Feeds went terrible, and she drained off lots of yucky green stuff. No one knows why she has that stuff in her tummy when she isn't being fed there. It's discouraging.

Good news/bad news for the line. The bug she grew is fairly benign in the staph family. It doesn't make kids sick, unless they have a central line. Apparently that little bug lives quite happily on plastic. So she will have to do home IV antibiotics for a few weeks to sterilize the catheter. Good news is, once they have the sensitivities back, we can leave. That might be as soon as tomorrow. They also feel confident that the line can be saved. This is probably all related to the hole, and because it's no longer there, the line should be okay. Thank. God.

For now, we wait as patiently as possible for next steps. It could be--and has been--much worse. As long as nothing else grows, we should be okay. Yay for good news!


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Again?

Sitting with Abby, waiting to go up to her hospital room.

Yesterday, I took her to the ER for the hole in the line. They were able to repair the line by splicing it and adding a new piece. They also drew blood cultures at that time. We thought it was all good news.

Today, Emily had her Neurology appointment at 8am at the same hospital Abby was in, which is about 35 minutes from home. That went well. We are going to change her meds around---which I am really happy about. There is a brand new med on the market that has been available in other countries for years. The dr. thinks it will work well for her. She finishes school next week, so it's a good time to make changes.

She went to school, and I got home just in time to stop Abby's TPN, and start her feeds. I was hoping to get my car to the shop because the air conditioning is out. I happened to check messages before I left and there was one from the ER doctor.

Abby's blood cultures from yesterday were positive. I was shocked. Her blood work looks good, and her white count is fine (typical Abby). She hasn't had super high fevers, but like I said before, her temp was erratic, and she looked bad.

I started thinking today that if she has a low level infection going on, the antibiotics might actually help. Maybe she's not really just getting worse. What if there is a reason for how bad she looks? It gave me renewed hope that she's not just slowly dying. As much as I wish she wasn't back in the hospital (on the dreaded Benadryl/vancomycin combo), I hope this helps.

I'm having a hard time with how constantly nauseated and gaggy she is. I see it as suffering, and I don't want that for her. I just keep praying for peace for her. I pray that God would whisper to her heart and she would know His presence. I believe with all that I am that He is with her and maybe this unplanned visit is an answer to prayer.

As usual, I can't know where this week will take us. I just pray it brings Abby Grace some relief.

Abby and memorial day

We've had a very difficult transition home. Abby has been very, very sick, and despite our best efforts, her tummy seems worse. She is draining lots of green stuff out of the belly, even though we are sure she doesn't have a blockage. She's been pale, weak, and sweating for no good reason.

All weekend her temperature has varied significantly. Anywhere from 100.4 to 96.5. It flies up and drops just as quickly. That may explain the sweating. I checked her blood sugar during one of the sweaty, pale episodes and it was 84, so that's not it. Because she's on TPN now, we have a nurse that checks in once a week. She saw her Friday night when we got home. Abby's heart rate was in the 40s, and she asked me if she had end of life care. Ouch.

It hurts just to say it. I did not sleep well that night. Neither did Abby, so at least I was reassured that she was alright. Sunday was her best day. Her color was definitely better. Today was harder.

The last few days when I flushed her Broviac, I thought I felt it leaking, but I couldn't see anything wrong with it, so I chalked it up to maybe not having the syringe screwed on tight enough. Last night, I flushed and obvious water came out of the side of the catheter. The TPN ran without leaking, so I left it alone.

The nurse came back this morning to draw labs. I could clearly see blood where the hole in the catheter was. We wrapped it in tegaderm, but tomorrow I need to take her to the ER to fix it and draw blood cultures. I probably should have gone today, but we decided if it was well covered she could wait.

Emily also had the worst seizure day she's had in months on Sunday. Poor girl. She sees Neuro Wednesday.

On a less depressing note, we had a family BBQ today. It was lots of fun and the distraction I needed. I made these cute things:







We made lots of other goodies, but those cupcakes ROCKED!

Obviously, a lot going on around here. I can't say that I'm looking forward to next week, but each day is an opportunity for something good to happen, so I won't wish it away :)

Home

This hospitalization for Abby has been a roller coaster ride. She wasn't here to recover from something, but that is exactly what I want her to do. It's hard to gauge where she is when she's just as sick as she was a week ago. She is a little stronger with the TPN. They upped that from 12 to 14 hours. But in every other way, she's the same.

I keep hoping a new formula will be the trick, but there doesn't appear to be a trick. We are probably going home today. I'm happy about that, of course. But I'm still nervous. She's a lot of responsibility. The medical team here is in and out all day long. They make adjustments to here care constantly. A 400cc fluid bolus because she looks dry, a new med, a different formula concentration or feed rate. I struggle at home with guessing at all of that.

I feel inadequate or ill equipped to care for her. She is my full time 24/7 job, and when she isn't doing well, I feel like I'm failing. The one single thing I devote most of my life to is not well. I know I work hard and do my best, but that doesn't make my daughter better either. It's frustrating.

So, I've lost count now at the number of times I've brought that child home sick, today adds to the count. There will have to be a place where we stop putting her through all of it. This was as close as we've come. I know in my heart that it wasn't time yet, but I feel horribly guilty for forcing her to hang on when she feels so bad. I would have felt negligent in not giving TPN, so I'll live with guilt.

I just keep praying that we are making the right decisions for her, and that we can find a way to make her comfortable. We are increasing Zofran, and adding Neurontin for belly/spine pain. I don't know if that will help or not. We will follow up with the spine doc outpatient.

Gotta go for one last belly x-ray, then get ready to go home :)

Quick update

We're still here in the hospital. Yesterday was a very good day. Abby seems to be doing better with the new formula and her zofran dose was increased from every 6 hrs to every 4. That helps.

She tolerated for feeds well yesterday, but Sunday was awful. Polar opposites. I have no idea where she'll land today, but she's looking a little green.

The plan is to keep her here until she begins to gain some weight. She also needs to tolerate formula.

So far, bringing her in was the right thing to do. She's still very fragile, but I can see some strength there that wasn't before.

Everyone else is doing well.


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Huh?

Abby made it through her first night in the hospital just fine.

She actually did very well last night. She slept almost the whole night.

She had a very bad day yesterday. Her nausea was severe and she seemed to be in pain. The doctors here all began evaluating her, and I thought they were very good. The peds attending, resident, GI, and radiologist all reviewed her scans together first thing.

Shockingly, the 'mass' in her abdomen is her spine. We know it curves in (lordosis), but she is so thin now, her spine is only 1/2" from the surface of the abdomen. The ligament or scar tissue we felt was actually the j tube palpable from the belly. I'm not sure what that means yet. It could have some affect on motility. It isn't causing a blockage, but could be causing low back pain. She complains of significant belly pain, which could actually be spine, since it's right there. There were no fractures in the spine though.

We changed her formula immediately. She's tolerating the new one marginally well. Her nausea is worse than ever, but she needs to get some weight on her before we can expect much improvement.

TPN started tonight, for which I can only be grateful. If we chose not to, we would be making a decision about her life that I am not prepared to make. We were asked about how much we want to do for her at this point- for the first time. We don't want her to suffer, but I feel at peace that she is in Gods hands. She can't starve when we can help her. So, we keep trying.


TPN hanging



Giving daddy a kiss

I'm not sure how long she will be here, but I do have one more thing to add to our prayer list. We need our NC Medicaid to go through. We have insurance, but we need Medicaid also to bring her home on TPN. It's very close to being done, but she needs it now :)

Thanks for keeping my sweet girl close to your hearts and in your prayers.

Hospital

Quick update: Abby will be admitted to the hospital tomorrow around noon.

A few prayer requests for her hospital stay:

- please pray that the doctors will see Abby how she is at home so they know how to treat her.

- pray we would finally find the right formula for her. She will start a new one tomorrow.

- wisdom for all involved in her care. She needs to improve.

- protection from illness.

- peace and health for my other girls while I'm away.

Thank you SO much!

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TPN, again

I'm up early after a mostly sleepless night. Abby's GI appointment yesterday went well. We saw the Dr., nutritionist, and had an x-ray. Jeff was able to go, which was really nice.
Abby is really struggling and will almost certainly begin TPN. Her weight dropped 2 pounds. She's grown 3" in 7 months though. She is 5 feet tall now. She seems so long, but that's actually only 10th percentile for height. She was >3% for weight. Her body mass index was only 11.5. They gave me a lot of other numbers that I didn't quite understand, but the bottom line is, she's too thin.
The Dr. still believes he feels a mass in her belly and is reviewing her CT, ultrasound, and x-ray with the radiologist to figure it out.
She will have to go in the hospital for a while to get TPN going, then hopefully we can work on it at home. I should hear more about the plan today.
At first, I was relieved to have some help with her. It's very difficult being solely responsible for her care. I want her stronger and healthier and I'm not getting there with what we are doing. Having her in the hospital where other people see her too seemed like a good idea.
This morning, I'm thinking of packing for the hospital and getting the kids ready for me to be gone. I'm quickly remembering how hard it is to be away from home. The good news is, we are treating Abby before she is sick this time. That is an answer to prayer. I don't think she's strong enough for even minor illnesses at the moment. Getting some weight on her will go a long way in helping her recover.
I should go, this could be a very long day.

19 years

19 years ago today I was enjoying my baby shower, unaware that in less than 24 hours I would become a mother. I was 21 years old, not married, in complete limbo, and not sure of what to do next. Thankfully, I had the divine ignorance of being young and idealistic on my side. It carried me through, until I understood a little more about life :)

I wasn't sure I could be a good mother. I didn't think I was equipped to care for a child the way I wanted to. I even thought seriously of adoption. Jeff did not think that was an option. It wouldn't have been for me either, after I saw her sweet face. I wasn't always the mom I wanted to be, but she sure was a great teacher.

Little pixie Hannah came screaming into the world at 7:35pm. She was tiny (4lb 10oz), but perfect. I loved her instantly and overwhelmingly. I, like most mothers couldn't have prepared for the way I loved her. Many times over the years, I have been incredibly grateful for the gift of a healthy first child. She changed my entire life




She was so fun! I loved every single stage of childhood. I didn't think I could love my infant more, then she would do something new. She learned to talk early and well, but didn't walk until she was more than 16 months old. It's really is a miracle. Every little thing babies learn to do amaze me. So many things have to go right for all of it to work, and so often it does. Amazing.




She's home from college for the summer now, and she and I are trying to figure out this new mother/daughter thing. She's fast becoming her own, but to me, she still feels like my child. I know she always will be, but we're in that in between place. She is figuring out life, and I am learning to let go. Parenting is definitely a journey.

Happy Birthday Hannah! You are a beautiful young lady. You have been a wonderful child. You were stubborn, strong willed, sometimes just flat out hard headed. You were also smart, imaginative, inquisitive, and funny. All of it made me who I am, and reminds me of the extravagant gift God gave me in you. Every second of my life is better because you are in it.


~ my girls and me on Mothers Day.




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CP

Up and down, up and down, up and down. All day long. All night long. Every thing I do is interrupted. Cooking, cleaning, talking, thinking, sleeping.

They always need something. They always want something. Of course they do. I would in their place.

I'm not mad at them. I just really hate CP sometimes. My kids are 18, 14, and 11. We should be at a place in life where our kids are more independent. But I just put a pacifier in the mouth of a 14 year old. I turned her on her side and started a lullaby cd.

CP is so frustrating. I read other blogs and hear the news every day. There are terrible things out there. Cancer. Fatal genetic diseases. Heart defects. SIDS. Scary, awful, fatal diseases. But they have something I don't. They have research. They are fighting. They hold fundraisers, races, bake sales, and lemonade stands. They focus on saving their babies, and if they can't save them, they work to save others. They fight for their kids because somewhere out there in the big land of all that's medical, there are people working for a cure.

Cerebral Palsy isn't like that. We fight for quality of life. We work night and day to prove the Dr. who diagnosis our child wrong. We are told there is no way to fix this from the first day. We celebrate every single accomplishment knowing it's never enough. All that work will never bring them back. All I can pray for is grace and strength to accept what is. I have to be thankful for the parts of who them that I DO have. Some days, that is so much harder to do that than others.

Some days caring for my daughters like newborns for 14 years catches up. Today, all that needing me only represents all that's wrong. Every cry, each call, feels like flares going up in the dark. Distress calls signaling the need for help. I alone respond to them and wish for a single day that I didn't need to. I it wish for them as much as I do for myself.

I shouldn't do it, I know I shouldn't. I should not be laying in bed wondering what they would be like. I shouldn't mentally fill in the holes in my daughters' heads where brain has died. It doesn't help any of us to visualize the dark places that silently went without oxygen suddenly spark to life. It only hurts more to wonder if they would play soccer or be interested in boys. Would they go on church mission trips like Hannah did? Would they be good students or hide progress reports until I asked for them? Would they be best friends and keep each others secrets? I'm sure they would sleep in on Saturdays and complain about homework. I mean, they are 14.

The precious glimpses I do get of their personalities and sense of humor makes me miss them even more. I miss the children I've never known, and still hold two I couldn't possibly love more.

It never gets easier, but there are better days than this one. Maybe tomorrow is one.

-Andrea

A day in the life

9:35am: Sitting in the dr.s office with Abby, again. She's been feeling terrible lately. The last 4 days have been miserable. She's not tolerating feeds. She's been lethargic, pale, and retching. She looks like she looks when her line is bad, but after days of waiting for a fever to kick in that didn't, I'm getting her checked out.

I could not be more tired of having a sick child. I could be more heart broken over her constant suffering. I feel so bad for her. Ok, docs here. Let's see.


10:39am: We are sitting in the lobby in radiology waiting for a CT scan. We need to know what's going on in that tummy. The dr. is concerned, as am I. Abby's very nauseated right now and they need to put contrast in the belly to see the intestines. I am quietly praying she doesn't throw it up, or worse, retch for two hours.





I'm also praying they hurry. She gets so anxious waiting for tests. I talked with the dr. today about something for anxiety for her. I think she's been through enough without needing to stress about everything.

11:02 am: Beginning the test. Contrast dye, then wait an hour. Scan the belly and hope for answers.



Uummm, ya. We are NOT getting that whole bottle in.




125cc's in. I think that's the best she can do.


11:20: Waiting. Nauseated. Watching the cooking channel.




11:45: So sick, laying on mommy.





11:55: The scan is so quick, and Abby is so good. We can't wait to go home and get Zofran.






12:25: Been waiting 30 minutes for the radiologist to talk to the dr. so we know what to do next. She's feeling a little better.

12:42: Heading home. Thank God. The dr. will call us there.

4:40: Four concerned, anxious hours later the pediatrician called back. I need to back track a bit here. The "mass" GI thought they felt on our last visit is still there. Abby is very, very thin now. We keep thinking the area we feel in her belly is poop that's not moving through (for several weeks now). The ped. thought that too. it can solidify and become very difficult to move. She's been so sick we were concerned about a blockage forming. The CT showed no signs of blockage, but it also showed absolutely no fat tissue. None. The radiologist had never seen a scan with so little fat. The only thing in the area we're concerned about (and Abby is tender in) seems to be abdominal muscle. The pediatrician is concerned muscle is breaking down because she has no fat. She will talk to GI tomorrow, but it looks like TPN is in our future. Abby just isn't looking well :(. I'm very sad, but not surprised.

7:08pm: Homework done, kids fed, dogs fed, a load of laundry started, quick whispered conversation with my husband about Abby (without worrying her), and about to begin bedtime meds/routine.

8:10pm: Emily's foot catches the strap to her computer bag as she's being put to bed. It spills out and the screen cracks. Now, unusable. This. Is. So. Bad.








8:57: Seriously need this day to be over. Say good night to my sweethearts, say some serious prayers, indulge in a long hot bath, pray for sleep.










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