Monday, December 21, 2009
I heard a semi in our apartment complex and just expected some car to be towed. When we looked out our window, we saw the fire truck pulling up outside our apartment. We were just worried they were there for our neighbor (she's my age [young] with a daughter that's the age Harley would be and she was sick the other day...) so I looked out our peephole to see if they were going next door and told Cameron 'They're actually coming here...' He answered the door and they were like 'Do you remember us?'
We talked for a while and they told us they still talk about us at the station and about how good we took care of Harley. They were genuinely impressed! It touched our hearts that they still thought about Harley and us. We told them Harley passed and they gave us their condolences. They said the day they came for Harley they wrote down our address so they could come back and check up on her, on us! They were so sweet! We want to do something for them like bring them all lunch one day down at the station. My cousin happens to also be a firefighter (different city, though) too, so I'm going to ask him what we could do for them. I just still can't believe it! I am so touched! I'm so glad Harley touched the lives of so many. Every day it seems I find someone else who Harley (or her story, even) has touched and how it changed their lives, if even for just a little bit. I love Harley so much, she still doesn't cease to impress me, even in Heaven. <3
Wednesday, December 9, 2009
Wednesday, November 25, 2009
Wednesday, November 4, 2009
Thursday, October 1, 2009
First sign: Cameron was lying in bed one night, really missing Harley. He rolled over and made a little spot for her, like she was really there. Next thing he knows he can actually FEEL her there! She knew he needed her so she came and visited him! How cool is that?
Second sign: I was in the shower, washing my hair, when I realized my left pointer finger hurt. I looked down and see an indent like one from a ‘hair tourniquet’. Let me explain: When Harley was about 4 or 5 months old, we were giving her a bath and noticed one of my hairs wrapped around her finger on her left hand (it may have even been the same finger!). We tried to cut it off, but it was on too tightly. We took her to Urgent Care, where they told us this was actually quite common. The hair gets wrapped around the finger and then starts to tighten, hence the name ‘hair tourniquet’. They had to poke and prod her poor finger with a needle to try and cut the thing off. Poor baby girl. They almost had to send us to the ER! They finally got it off and her poor finger had such a deep cut on it from that stupid piece of hair. We had to put antibiotic ointment on it to make sure it didn’t get infected. Anyway, so I look down and see the exact same mark on MY finger. There is NO way my hair made that deep of an indent in my finger. Crazy thing was it was only on the top of my finger! It went away after a few minutes, but that had to have been Harley!
Third sign: Last night, I brought 6 huge balloons (they took up my whole backseat!) and a plant with yellow flowers to Harley’s grave. I tied the 6 balloons onto a weight and then onto a garden stake we have there. I only tied 1 knot, but figured with 6 huge balloons on 1 side of the ribbon and a weight on the other end, there’s no way the balloons should come untied, right? Wrong. I then bent down to try and get some wax off some fake flower petals that were in a candle holder my sister-in-law, Rebecca, made for Harley’s gravesite. I noticed out of the corner of my eye that the balloons were a little farther away than they should be. I looked up and they had COME OFF THE GARDEN STAKE! They only floated a little ways away, so I got up, grabbed them, and then tied them back on the garden stake with SEVERAL knots this time. I didn’t realize it then, but that was Harley playing around! My little girl is still full of mischief…
It’s so nice to know that Harley still has her playful attitude. She’s still the same little trouble-maker she was here on Earth. We love and miss you, Honey Bear! You'll always be my little girl. We’ll see you again one day in Heaven. <3
The day she passed (Monday), we had to decide on the brain surgery in the morning, first off and the neurologist and neurosurgeon both said we could put it off (from looking at the CT scan earlier that morning), so we did. Then, they did another chest x-ray and saw the pneumonia was getting worse. Then they did an x-ray on her belly because it was the most swollen we'd ever seen and it wasn't getting better. We had a scare that there was an air bubble near her liver (?), and if there was we'd have taken her home right then and there because that's a death sentence.
Turns out it wasn't, so we went home to take showers and got a call from my mother-in-law that they were going to put her on a ventilator because her stats were dropping and we needed to get back; they were going to try and wait for us. We hurried back and literally RAN through the hospital to her room. I was catching my breath when my husband asked if I told her I loved her. I said not yet and gave her a kiss and said I loved her and as soon as I backed away from the bed the nurse yelled for the crash cart and everyone came in their yellow gowns (contact precaution for Harley's well-being) and started giving her epinephrine to get her heart started again, did CPR and bagged her. The doctor was yelling orders to everyone and my mother-in-law, husband and I were just freaking out crying and trying to stay out of the nurses' and doctors' way. We kept yelling encouraging words at her "Come on, Honey Bear! You can make it! Big girl! We're so proud of you!" through our tears and I kept rubbing her left foot because that was all I could reach without being in their way and I got Cameron to do the same.
They kept checking her pulse and saying she had a weak heartbeat, so we felt hope until the doctor pulled Cameron and I aside and she said they'd been trying to resuscitate her for 20 minutes and she didn't think she was coming back. It didn't even seem like a minute had passed. She then went to go oversee the nurses trying to bring her back and we cried and waited probably a minute or two more (I have no conception of time for when this happened) then decided we needed to let her go. We went to the head of her bed while they still did CPR and ran our fingers through her hair and kissed her and cried. We told her how much we loved her and how so very proud we were that she fought this long. I told her to say hi to my Uncle Wayne and (grandpa) Pa (in Heaven) for me. We then told them we wanted to stop, so they did. I remember watching them take all the lines off her and take the tube out of her throat from bagging her. They let us hold her and sit with her and our nurse, Bree, gave her other patient to another nurse so she could stay with us. She was so nice, I will never forget her.
When I was holding her I asked my mother-in-law to call my parents and tell them because I couldn't through my crying. I also asked her to call my boss, Ron and let him know, but when she did my husband grabbed the phone and told him for me (my husband used to work at my job with me, so he knows my boss). The first person I called myself was my co-worker, Michelle. She had just lost her 27 year old brother suddenly and unexpectedly a week or so before and she's the 1 co-worker I'm closest to and can tell anything to. I then believe I called Ivy (MommyIvy- CafeMom) because she's been such a help updating everyone for me and also because the CafeMom ladies raised over $200 for a shadowbox with a bronzed hand and foot print and I wanted to make sure I got that done because it meant allot to me and (I'm sure) all the ladies who helped raise the money. After that I think I sent a quick text to everyone to let them know and to also say I'm not responding because I was still spending time with Harley. The pastor also came (one I didn’t know yet) and said a prayer with us over her and gave us his card if we needed anything. I have no idea what I did with it, maybe it’s in the ‘So your child died…’ packet. (That’s not what it’s called, it’s very sensitive and informative. I read through most if not all of it that night because I didn’t know what else to do.)
About that time my husband was freaking out and had to leave. He started packing all of our stuff into a wagon that the nurses brought us. The social worker (I think) came in and he brought some purple ink and cards to do her handprints and footprints for us. I asked for 2 of them, 1 for me & 1 for Cameron. They also did clay hand and footprints, too. Those didn’t turn out too well and that night I wrote her name and birth and death dates, then tried to smooth out the cracks with water and it ended up growing mold (didn’t know it’d do that, I’m so upset over it...). We took off the purple hospital gown she was wearing and kept it, instead putting her in a sundress that my mother in law bought her. It was white on the top, then light green then turquoise on the bottom. It was sleeveless with a little frilly on the straps. My parents showed up about the time Cameron started packing, maybe a little before. He ended up driving home and dropping his mom off and I went home with my parents because I wanted to wait for the lady who does the bronzed hand and footprints.
I remember almost every time I’d sit her up to readjust her on my lap her nose would bleed, but it wasn’t just blood, it was clear, watery liquid with some blood in it. I kept wiping her nose off like she was still alive, still talking to her and saying things like “Your nose is leaking, Honey Bear. [Wipe her nose] There. That’s better.” After a while I stopped crying and just held her and rocked her (I was sitting in one of those gliding chairs.). I kept rubbing my fingers through her hair and touched her face and just looked at her. After a little while the blood in her body started to ‘pool’ since her heart wasn’t circulating the blood anymore and she started to get dark red blotchy patches on her feet. I rubbed them and they’d go away. She also turned more yellow. I look back at the pictures and right after she passed (when the only pictures are of Cameron and I bawling our eyes out) she had a more normal skin tone, then the later pictures she was more yellow.
It felt like forever I was sitting there with her, but also like it was 5 minutes. It couldn’t have lasted longer, or shorter. Confusing, I know, but the time drug on in a sense, but also sped by. The lady finally came to do the bronzed prints (maybe around 11pm or 11:30pm? She passed at 9:22pm.) and apologized for being ‘scrubby’ (like we looked any better) and late, but she had a long drive and tried to shove down dinner, too. We didn’t mind. She was very nice and caring, helped that I had cried myself dry, too. Harley’s last nurse, Bree, stayed in the room the whole time to answer questions and be there for emotional support. The lady mixed up the clay (4 of them) and put them on the meal tray holder thing for a flat surface. I held Harley with her back to my chest and stomach with her feet dangling and we did her hand first. I think it was her right hand but I’m not even sure anymore. We did her hand prints twice (same hand) then her feet (I think that was her right, too). Then the lady gave me her card, a receipt that she did it (she said not to worry about paying her that she’d get the payment later) and a sheet with sayings on it for the plaque. I still don’t know what I’m putting on it. Maybe her name, ‘Honey Bear’, birth and death dates and a saying or maybe even something about CafeMom because I would NOT have been able to do it without them and their donations.
The lady then left when she was done (said she got REALLY good prints!) and I laid her back on the bed. Cameron had already gathered together all of our stuff and brought it home, so I didn’t have to worry about that. He had already called me a few times (from home: he’d already dropped his mom off) and was really upset still and needed me to come home, so I didn’t stay for her last bath like I REALLY wanted. I figured Harley wouldn’t mind if I went home to Daddy because he really needed me. My thought almost exactly was that Harley had already passed and instead of staying and giving her a bath that I needed to get home to Cameron, who was still living. I have a small twinge of regret, but I know in my heart that I did the right thing.
Leaving her there, lifeless, on that hospital bed in the ‘F’ wing of the ICU at Phoenix Children’s Hospital was the hardest thing to do. I took pictures and told her I loved her, knowing she’d always be with me now and could enjoy her existence again. I didn’t think I could do it, but I did. I left her body there, alone, with Bree, her nurse to go home to my empty nest. I left the hospital where we’d called home for the last time, empty handed and broken hearted.
While in the hospital, we’d always slip and say things like “We have to be getting home now.” When referring to the hospital. I joked that “Home is where the Honey Bear is.” or “Home is where the Harley is.” When I got home that night, after 1am and after the long car ride home with my parents (and after stopping at McDonalds to get something for Cameron and I to force down our throats) I realized how true that was. For 14 months we never thought about where ‘Home’ was and what it meant. It was just some place that we stayed at, ate at, slept at, etc. As soon as I stepped in the door and saw Cameron on the couch, distraught with no T.V. or video games on (which is very unusual for our house) I realized how empty this building really was. It wasn’t our ‘Home’ anymore. Home is where your family is, the ones you love and care for. The one we love and longed to care for was now in heaven.
Her empty body, just a shell, a vessel for her beautiful soul, was left behind at the hospital. I am so thankful we transferred to Phoenix Children’s Hospital. I know this may sound morbid, but I felt some peace with the fact that her body would be at the hospital’s morgue with other children, instead of adults. I feel more precautions should be made and more respect should be shown when it’s a child’s body, especially an infant’s, ESPECIALLY MY daughter. Going off of how the rest of the hospital staff had treated Harley (and us) I wasn’t concerned. I know they (regrettably) have children earn their angel wings almost every day and they have a good reputation of being sensitive to patients’ and families’ feelings, very empathetic. I feel like every single person that works there, from the doctors and nurses to the cafeteria workers and janitors, love children very much. Everyone there cared so much for the kids; I would not hesitate to recommend PCH to ANYONE and EVERYONE.
That night, we brought all our stuff in the house from the hospital (and that’s all it was: STUFF. I’ve realized cars, houses, electronics, etc. is just STUFF. I don’t care about STUFF anymore. I could have my whole house robbed, car stolen, bank account depleted, etc. and it wouldn’t upset me as much now as before Harley got sick. It wouldn’t feel like the end of the world like it would have back then…). We just laid it on the ground in front of the T.V. in the living room. We sat on the couch, drained, wondering what to do next. It eventually ended up in her crib (also in the living room) which is where it still is today. We didn’t sleep very much that night; Cameron brought our top mattress out to the living room (we always did that so we could hear Harley’s alarms) and we just kind of laid there and felt depressed.
That’s my story of the day Harley earned her sweet angel wings.
-Katie Marie Pollock
Eternal Mother of Harley Kayleen Carson
Wednesday, September 2, 2009
Tuesday, September 1, 2009
Wednesday, August 26, 2009
Tuesday, August 25, 2009
Monday, August 24, 2009
Cat scan was just done and there was no change in Harley's brain. They are goint to put off the surgery until they have to. Katie said they have moved her to a "big girl bed" so Mommy and Daddy can snuggle with her.
Sunday, August 23, 2009
Harley was basically unresponsive all yesterday besides when she opened her eyes & peeked at me twice when I first saw her and she squeezed Cameron and mine's hands once each. We moved up to the PICU where they did a CT scan and found bleeding in her brain from her brain shrinking and the veins rupturing. She also has pneumonia all over both lungs. They scheduled brain surgery today at 2pm to relieve pressure in her brain, but only if her blood can clot by then since she was on blood thinners.
Saturday, August 22, 2009
She's been peeing very well since the catheter's been out and pooping well, too. She's now on a formula called Peptomen 1.5 that has a higher calorie count (more concentrated, basically) so they can give her less without skimping on the good stuff, so to say. They're hoping it helps with her belly still being so swollen, but so far it hasn't. They're supplementing water in her diet by giving her little bits at a time through her G-tube (one that goes to her stomach). It's not working out too well, though. When they gave her an ounce yesterday and clamped it shut (so it'd actually absorb instesd of draining out) she ended up throwing up water and stomach acid! They unclamped it and as soon as they did stomach acid was GUSHING out faster than I've EVER seen! The diaper it drains into was FILLED before the nurse even left the room! Poor baby, she just really needs the G-tube to be able to constantly drain now. They stopped the water for now and might try it again in a day or so.
The doctor has also noticed that her color is looking better! She has some days that are better than others, but overall it's gotten SO much better! We're all anxiously awaiting her blood test results to see how her liver's doing now.
Also, the last blood test they did showed lowered white blood cell counts and they were worried she might have pneumonia. We did a chest x-ray on her yesterday to check and are once again awaiting the results. Her platelet level in her blood was also low and they were debating doing a blood transfusion (she's had a few, so I wasn't worried). I haven't heard back whether they did one or not, but I'll post when I hear more.
Friday, August 21, 2009
Also, we still need $130 for the Shadow Box. We only have until Sept. 4th to get it raised or what has been collected will go back to the donaters. Please help if you can!
Tuesday, August 18, 2009
Monday, August 17, 2009
First off, we moved her over to Phoenix Children's Hospital from St. Joe's on Friday. Let's just say we felt like they'd done all that they could (or all that they WOULD, I should say) do, so we figured it wouldn't hurt to get a second opinion. So far so good! They don't cater to the parents as much, (no more private rooms with our own bathroom, there's 2 patients to a room now with 1 pull out bed/ chair per patient and 1 bathroom, but ONLY patients can use it: the parent's bathroom is down the hall. Oh, and no more free family meals anymore, either...) but it doesn't matter as long as Harley's getting the care she needs.
Wednesday night her body temp actually got pretty low, SCARY low. We bundled her up with warm blankets and put a hat on her head. She looked like a little snow baby! Her temp finally went back up to a more comfortable level around 3am. Since then her temp has still been running low, but it's for the most part stable. The doctors think it's due to her brain loss. Sometimes when an infant (or anyone) has brain loss their brain can no longer regulate the body's temperature, causing fevers for no reason and also causing the body's temperature to drop for no reason.
She also went 15 hours without peeing on Tuesday; they had to put a cathedar in. After that she peed fine. The doctor said it's common for kids with any sort of mitochondrial disorder to have problems peeing or going poop because the muscles become weak, and you use your muscles to pee and poop. Today at 8am they took the cathedar out finally and she's peeing great! She's actually peeing more OUT than she's getting IN which is wonderful since she's still bloated!
They also re-started her feeds last night! They started them at 15 ml/hr and raised them 5 ml/hr (about half an ounce) every 6 hours. She's now up to 30 ml/hr! Yay Harley! She's doing great on them, too! They're proportionately lowering her IV fluids she's getting, too.
Overall, Harley honestly seems less yellow (Cameron, his mom and I ALL agreed, it's not just a figment of our imaginations anymore!), about the same bloating-wise (her belly went down then bloated back up after they re-started her feeds) and a little more tired, but when she's awake she's still alert!
Oh, and her carbon dioxide levels in her blood were apparently a little high, but not alarming. We're going to have a care meeting sometime this week, probably Wednesday or so, with all the doctors to kind of make a plan of what we'll do for Harley. Hope all goes well! I'll update as things happen. = )
Tuesday, August 11, 2009
Honey Bear didn't have a very good night last night. She ran a fever of 102 degrees and they couldn't keep her Oxygen stats up. They took her off her feeds and put her solely on IV fluids because she was having such a hard time. Guess we'll just have to see how today goes...
Monday, August 10, 2009
Besides that there's good news and bad news. Good news is that the blood clot is still shrinking and the doctor said they'll do another ultrasound today to make sure the clot didn't just move. Lookin' good towards going home!
Bad news is that her liver is still failing. The whites of her eyes are turning yellow, a trait that happens due to a failing liver. They put her on a new med that'll help her liver function, I hope it helps and maybe just maybe will 'kick-start' it into working again? Ya never know...
Sunday, August 9, 2009
Saturday, August 8, 2009
Tuesday, August 4, 2009
Wow, what an improvement since Thursday! They put her on TPA (a risky blood thinner [but potent] that they don't normally use because of the risks) which broke her blood clot down enough to take her off the TPA and put her on Lovinox, a normal blood thinner given as a shot in her belly. It has fewer risks and she can even be sent home on it if need be.
Her seizures have once again lessened (yay!) and she's more awake, too. She was even yelling at the nurses when they bothered her this weekend and opened her eyes more! She's got her little attitude back, it's so cute! Okay, that's the quick update for now. I'll try and update again later, gotta get to the baby! = )
Monday, August 3, 2009
Thursday, July 30, 2009
More bad news to report is that her liver is starting to fail. The exact words were ‘not processing proteins’ and that her liver had ‘high enzymes’. For those of you who don’t know this is the next phase of Alpers Syndrome. They didn’t really tell me a plan of action for her liver failing, just that they’re trying to get all the levels of things like protein and potassium stable in her blood so she can go home and we can spend time with her. The only time frame I was given was weeks to months, it just depends.
Her bloating is a little better, but she’s not back to her normal self by no means. Apparently protein helps with bloating by keeping fluids in your blood stream instead of them leaking out and causing bloating. Well, the Lasiks, on the other hand, helps bloating by flushing out the excess fluids, including the protein. So they’re trying to keep protein in her and flush out the excess fluids, so it’s a vicious cycle. They are cutting back on the Lasiks and the doctor said she should be off of it in a few days. Also, this new ‘Boost’ formula supposedly has more protein in it and that’s why they switched from PediaSure. What I’m thinking is if her liver isn’t processing the protein correctly, then is that why she’s bloated? Just my train of thought…
Lastly, her seizures are still pretty bad. A little better today because she got more sleep, but still pretty bad. I talked to the doctor today and he said he’d look into raising her Phenobarbitol (the anti-seizure med they cut back on) back to the normal level it was at when we were home.
So, once again, there’s really nothing any doctor here on Earth can do for her, so it’s up to God now. Please, if you do pray, just say a quick one for her so that she’s at least comfortable and can enjoy the time she has. Thank you.
Tuesday, July 28, 2009
When I ask the nurse about the constant bloating she just says her Lasiks was upped and the potassium was stopped. Other than that, I guess they don’t care. When I tell the nurse about her seizures she just says she charted it and will let the doctors know. This is really upsetting us that they aren’t addressing our concerns. Last time Harley was in there they did very well at ‘making us happy’ and addressing our concerns and I don’t understand why this time would by any different. If she’s still swollen by tonight I’m going to ask to talk to the doctor myself and let him/her know how upset we are by all this. Poor baby is so uncomfortable from the swelling and excess seizures she won’t talk to us anymore and is sleeping all the time again. I don’t understand why she was doing so well and now she’s back to where she was before. I guess we’ll just have to wait, probably do more med changes and see.
Saturday, July 25, 2009
Also, they started her on physical therapy yesterday! She came in and worked with Harley and even came back today! I'm so relieved they actually listened to me! I knew it wasn't like them to just ignore my request, but that's the impression I got everytime I asked.
Harley's swelling has gone down DRASTICALLY. They started giving her Lasiks every 12 hours to help her pee out the excess fluids and wow, what a difference! Her skin isn't as tight anymore and she stopped whining and talking all night: she actually sleeps through the night again! Poor girl was just so uncomfortable she couldn't sleep before.
Another thing accomplished is that they lowered her dosage of Phenobarbitol (seizure med)! She seems more awake without an increase in seizures! We're pretty sure they did this because her levels of Phenobarb in her blood lab were high, not so much at our request, but either way we'll take it!
She's also seen the pediatric GI doctor and all that he said was as long as she doesn't throw up any more blood he's not too concerned. If not then that means it was probably from some bruising and irritation from her GJ tube. If she does (it's highly unlikely since she hasn't since Monday) then they'll go down her throat into her stomach with a camera and look around for hemmorages, ulcers, etc. He's pretty confident he won't have to do that, though.
Harley on the outside is also doing GREAT! She's so much more awake (probably the most awake she's been since before her first stay in the hospital!) and looking at everyone and talking to us! I could've swore I heard her say 'Mama' a few times now (or it's just wishful thinking, but maybe not!) and when we ask her questions sometimes she'll say 'Uh-huh' like she's saying yes! Coincidence? Maybe, but it's sure cute anyways!
Well, that's all for now. Hopefully with the next update I'll be telling you all that Harley's home again!
Thursday, July 23, 2009
In the ER they said she was dehydrated and wanted to start an IV for fluids. They poked her and poked her but couldn’t get one started. They even had the SWAT nurse, supervisor and another nurse from the PICU come to the ER and try to get an IV started with no luck. At this point they gave her fluids through her G tube for lack of anywhere else to give them to her. Then, they had phlebotomists come from the lab to draw blood from Harley (2 of them) and they poked and prodded her even more with no luck, either. The ER doctor then came and tried to do a central line IV in her thighs with no success (he even used ultrasound to make sure he was poking her in the right place). At this point they said they would have to basically put an IV in her knee cap (straight in the bone!) to get her fluids because they’d exhausted all their other sources unless the PICU doctor had any other ideas. He ended up coming down to the ER from the PICU and put a central IV line in her neck, first try. Poor baby didn’t have any pain killers and STILL did GREAT! After that they were able to draw blood so they could do the lab that would tell if she needed to go to the PICU or a normal room; we ended up in a normal room.
Of course since we already knew everyone in the PICU on the 4th floor and on the 5th floor pediatric unit they would send us to the 2nd floor where we know no one. It’s been okay on the 2nd floor, though. WAY more confusing on where to go (we still have to stop and ask directions!), but we can handle that. First night we were in a 3 patient room with another family (that had NO bathroom in it; we had to walk past the nurse’s station down the hall and use a really short toilet for kids) and the second day I asked if we could move next door because 1.) It had a bathroom and 2.) The baby girl that was in there was discharged. Our nurse talked to her supervisor and got us our own room (a 2 patient room, but it’s all ours’!) with our own bathroom & its right by the nurse’s station! Only bad thing is there are no cots on that floor so that night Cameron & I slept uncomfortably on the couch until we woke up in the middle of the night and Harley’s nurse said she brought the chair from our old room over for us. How sweet!
Anyway, back to Harley. She was dehydrated with low levels of potassium and sodium, so she got bags of fluid for each and her levels went up by that night/ next morning, only then she was bloated from so many fluids so rapidly (and it didn’t help not getting up and moving around like when we’re at home- I requested physical therapy, but my requests are still unanswered. We’d do it ourselves, but with the IV in her neck it makes it more difficult.). We saw the neurologists, who were concerned that her special formula for seizures wasn’t producing ketones in her urine like it’s supposed to do. They suggested the geneticist evaluate her for a metabolic disorder, and as of now she doesn’t have one (thank goodness… poor girl has enough issues!). They are now in the process of switching her over to normal formula because her seizures are pretty well under control without her urine testing positive for ketones anyway. The neurologists are also re-evaluating her meds (FINALLY: only took Harley being admitted into the hospital to do so!) and I’m hoping we’ll be out of there in a few days. I work Friday night and Saturday morning to make up hours I’ve missed this week, so I’ll be able to update then, too.
Monday, July 20, 2009
Other than that, she seems pretty congested, but at least she can cough it up and out of her chest. Also, she's been doing GREAT with no oxygen during the day (for the most part)! It's just been SOOOO nice to have her more awake and interacting with us! I haven't even thought about getting a picture of her with her eyes open yet, we've been too excited about her being more awake!
Oh, and she has her little attitude back! When she grinds her teeth we put a pacifier in her mouth, right? Well, now she tries to spit it out, which is fine if she stops grinding her teeth, but if not we force it back into her mouth. She used to just accept it, but now she waits till we aren't looking (or she thinks we aren't looking) and spits it right out. It's the cutest thing! She's not grinding her teeth as hard (at least she doesn't make her whole mouth bleed anymore) so we aren't too worried about her spitting them out. That's about all for now!
Monday, July 13, 2009
Harley also got to meet her uncle Guy from Washington State (Cameron's brother) and visit with her Papa from Prescott Valley (Cameron's dad). They enjoyed seeing her and she seemed to enjoy the extra attention she was getting.
Well, that's about it for now. We're just trying to get her out of bed and keep her awake as much as we can. I'll keep everyone updated!
Thursday, July 2, 2009
Now, you would assume her being on so many meds she would be dependent on them and start having seizures and throwing up more, right? WRONG. (?) It surprised us, too! She did SOOOOO much better OFF the meds than when she's ON them! She didn't throw up ONCE all yesterday, had maybe 1 or 2 seizures (only for a few seconds) and was awake and happy! I talked to her, she'd look at me and make eye contact and she was more affectionate, too (gave me more kisses). She stayed awake for about 4 or 5 hours STRAIGHT and just seemed to be doing all around better!
Here I thought my daughter was getting so bad that she's too weak to stay awake for longer than an hour at a time and I come to find out she's just been knocked out from her meds! My poor Honey Bear! I'm going to call her neurologist and make an appointment for sooner than the one that's already scheduled: I want some of these meds GONE if we can help it (and it's looking like we can...) or at LEAST decrease the dosage.
Harley's been doing pretty good, though. She didn't throw up ALL yesterday and has only thrown up once this morning and it was only a little bit. Yay Harley! I'm sure she's happy, too. Thank you all for your continued support and I'll update again when I get a chance!
Tuesday, June 23, 2009
Monday, June 22, 2009
Okay, first off, Harley's J tube surgery went great! We left for St. Joe's Hospital about 10:30am and got back to Los Ninos around 4:30pm. She was only in surgery for about an hour and then off to recovery where Chaplain Michelle (from St. Joe's Hospital: she came around alot when we were in the PICU) baptized her for us. It was short and sweet, just like I wanted.
The J tube has helped with her throwing up, but it's only slowed it down instead of stopping it like we thought. Now she's only throwing up mucous and clear liquid, sometimes stomach acid. She's only threw up a few times where there's any formula in it at all. Also, the first few times she threw up after the surgery there were spots of blood in it. That scared us, but the nurses were right: it was just from the surgery and it stopped. She's now only throwing up 1-3 times a day and she's actually getting more of the formula through her system, which is great! I wish it would have stopped the throwing up completely, but I'm sure Honey Bear appreciates not throwing up so much.
Okay, now for the BIG news: WE'RE GOING HOME TODAY! Or so they tell us. Cameron said he thinks Harley even knows because she's been more awake and happier today! I'm in close phone contact with Cameron, who's at the hospital with her (I have to work) and so far it's still on for today, even though we still haven't received her O2 monitor. Cameron also said they still have to check out apartment out (which we weren't aware they had to do!) which is okay, except her room itself. We moved her crib into the 'dining room' so she can 'hang out' with us, plus it's just EASIER, and we have no where else to put her toys. It's piled in her room, in her closet, etc. We still need to go through her clothes and get rid of alot of them, too. Oh, and they told Cameron we may need to move her crib AGAIN because it's by the kitchen, which has a stove, and she's on oxygen. Uuuugggghhh
Wednesday, June 17, 2009
Tuesday, June 16, 2009
Harley has still been throwing up every day. The doctor's wrote the orders for the J part of the GJ tube to be put in (to extend it to the intestines so she CAN'T throw up) and has contacted the surgeon, so I guess it's now just a matter of getting it scheduled.
Also, Harley's O2 (oxygen) has been dropping when she sleeps. It's normal for anyone's oxygen to drop when they're in a deep sleep, but Harley's has been dropping a little lower than they'd like. It's not too bad, only drops 1% or 2% below where they want it, but it's not good, either. She now either gets oxygen throughout the night or what they call a 'blow by' or something like that where we set up the O2 mask by her face, but not on it, so it blows O2 in her face. Still, it's only on 1 liter, so that's not bad.
We finally finished her antibiotic drops for her eye Sunday and the antibiotics for her ear infection are done tomorrow. Yay! Two less medications for Harley! Hopefully that's the end of the infections and such and Harley and her body can just focus on getting better.
Last thing I'll add today: we've finally signed a DNR. But, let me add, the only thing it prohibits is putting her on another ventilator. We still want everything else done, if need be like CPR, giving her O2, AED (heart shocking device if her heart stops), etc. It is JUST for ventilators. It's my husband's wishes, I'm more of a 'case by case' basis person and for me it all depends on how Harley's doing at the time. I understand his wish for her not to be on a ventilator, though, and I agree that it was a sort of 'torture' for her (not really, but it was such a discomfort that we don't want to put her through that again).
All in all, though, Harley is still fighting like the big girl she is. She still recognises her dad and I and kisses us back (when she wants to) when we kiss her lips (she puckers her lips against ours). When I touch her chin or rub her cheek she'll give us a faint smile, too. I still have my Harley and that's all I can ask for. : )
Monday, June 8, 2009
On top of the throwing up, Harley now has a staph infection in her left eye (I didn't know that was possible!). We've been putting eye drops in (3 times a day) and that has seemed to have helped (otherwise her eye gets really crusty; has even crusted shut a few mornings).
On top of the staph infection, she also has an ear infection in her left ear, too. Apparently kids who throw up often are prone to getting ear infections. Our doctor said a study was done where they found stomach acid (or some enzyme from the stomach) in kids' ears who threw up alot (like, if they're sick and throwing up constantly, more than once a day or so). So, now we've started an antibiotic for that.
Harley's appointments to see all her doctors have all been set up and she's started going to them. First one was on Wednesday for the geneticist. Not much happened, they checked her out and had Cameron fill out paperwork for the first in-office visit. Dr. Amatto (geneticist) also had Cameron fill out paperwork for us to get genetic testing done, too. Not really to see IF we are carriers or have Alpers Syndrome (we obviously both are carriers and if we had Alpers we'd most likely have showed symptoms by now) but mostly for informational IF we have future children (it's looking like no at the moment...).
Harley had a swallow study done Friday, too. She was sat up in a therapy chair (like the one we have for her at Los Ninos) and given baruium in different consistencies. First they did the consistency of honey (with chocolate flavoring), which she swallowed, but aspirated (it went in her trachea/lungs). Next they did the consistency of pudding (tasted apparently like marshmellows...) which she swallowed a little bit of, aspirated a little (not as much as the consistency of honey) and kept the rest in her mouth. I thought she was choking! (But we were watching her airways on X-ray and could see she wasn't.) They used a syringe to take out what she wouldn't (not couldn't, WOULDN'T) swallow and when we got back to the hospital I suctioned out the rest. She is such a chipmonk! (Like me, I guess...) She kept most of the stuff in her cheeks! I made sure to brush her teeth really good, too.
Other than that, Harley's doing okay. I think she's ready to go home, though. I think we're all ready. Once we get her home I think she'll improve some more. It'll let us all relax a little bit and just enjoy being a family and spend more time together.
Thursday, May 28, 2009
Harley has 12, yes 12 prescriptions. Only 4 are covered by insurance. Most of them are injectables (we need needles to draw them up, but ultimately they go in her G-tube) and insurance doesn't like to pay for those. So, Los Ninos is doing all they can to get them covered and to get us on more programs that can help us out. They've been really great to us at Los Ninos. The only complaint we've had about ANY of the staff there is (and I quote Cameron): "Aww, this nurse makes us wake up in the night (for Harley's meds)." And I can live with them making us be responsible! Anyway, the new 'release date' that we're shooting for is early next week.
We FINALLY got our carpets shampooed (is that how you spell shampooed?), actually Cameron rented a Rug Dr. and did it himself- he didn't know it'd be that much work! We threw out a couch to make room for Harley's crib in the living room and now we're just looking for a tall table to put her meds on when we're getting them all together. In the meantime we'll just use a TV tray. Our house is close to being ready!
Monday, May 25, 2009
Other than that, Harley is doing great! She stopped throwing up, at least for a few days now (we think it was because of her medicine Clinazapan [probably didn't spell that right, but I tried], it was a pill that dissolved under her tongue and once we started disolving it in water and giving it through her G-tube [which was 'okayed' through the doctors] she stopped throwing up, it seems). Also, we FINALLY had her re-evaluated by the speech therapist at Los Ninos and they confirmed that she CAN swallow! We can now give her ice chips (even though she didn't like cold things before this, but maybe she'll give in a little since the only other thing that goes in her mouth is a toothbrush). It's a small step, but an important one showing that she's improving towards being able to eat (or at least drink her formula from a bottle)! How exciting is that!?!?
I know this is going to be extremely hard caring for Harley at home now, but she'll appreciate being in a familiar environment and being able to just relax. We're in the process of setting up our house for her (moving her crib into the family room, getting rid of all the clothes that are too small for her that we started to do, but got lazy and stopped, and also get rid of some toys of her's- we're not mean, she just has AAAAALLLLLLLLLLOOOOOOOTTTTT of them!) so it'll be move convenient for us to take care of her, and so she can hang out with us instead of lock herself up in her room! (Lol!)
But seriously, it'll be nice once we're all home. I know it will be alot of exhausting, never-ending work, but who said being a parent was easy? I'm not a hero like firefighters, police officers, military men & women, doctors, nurses, etc. I don't have an extrodinarily big heart like Mother Theresa. I don't have patience like a saint (if you know me at all I've probably blown up on you- I'm that bad sometimes!). I'm just being 'Mom'. I see my baby girl needs me so I do what I can. I can't perform a miracle to make her brain grow back so she can walk and talk and play like normal again (though we all wish we could), so instead I am her advocate. I look into her eyes, almost straight to her soul. I see if she's mad, I listen if she swallows (when everyone else says she can't), I talk to her and hold her and find out what she wants (as best I can) and I let everyone know. It's the only thing I can really do for her (besides research everything until I stumble upon something helpful and find out the doctors are 1 step ahead of me), so I'm going to do it!
Thursday, May 21, 2009
When she IS finally released, she'll be going to Los Ninos Hospital, 24th Street and Thomas (down the road from St. Joseph's Hospital, where she is now). It's a 15 bed independent and free-standing hospital that specializes in acute and sub-acute care for infants, children and teens. (Taken right off the website!) It's basically a place to go before you transition to home from the hospital. They will train us and make sure we are well prepared to care for Harley once we're on our own. They also have resources that will help us once we do go home. I feel confident that Harley will continue to improve once she's home, back in a familiar environment, and can relax (sort of). I'm going to make sure we still get physical therapy coming in and I'll try to get a home health agency involved, too; that will help us out even more. For now it's just patience, patience, patience while we wait to find out what's going on and to get our last minute questions answered. Thank you all for the continued prayer and support. Wish us luck and keep praying for a miracle!
UPDATE @ 3:00PM-
They are FINALLY releasing her! She'll be going over to Los Ninos Hospital for a week or two. I'll let you know how it goes!
Monday, May 18, 2009
Harley started throwing up on Thursday night. Not just a little, but almost continuously, it seemed. Every time we'd clean her up and change her sheets it seemed like we'd turn around and she'd be throwing up again. We'd stop the feeds through her G-tube after she threw up, anywhere from 15 min to an hour to give her stomach a rest. As soon as we'd start it up, it seems, she'd start throwing up again. Poor baby. It went on all night, too. As soon as morning came she stopped, though, which was good because she had to get a test done on her eyes.
She's still cute, even if she has an eye patch on. She did really well with the test. We put her in a wagon and brought her to some room on the 8th floor where they put more probes on her head and 2 on her face. Then they put an eye patch on one eye and flashed a strobe light in her face (I thought people who are prone to having seizures can have one triggered by strobing lights...) at different speeds. The fastest one made me think I was going to have a seizure and I've never had one! Poor baby. They did that to both eyes then put patches on BOTH eyes and sat her in the dark for 15 minutes then did it again. The whole thing took an hour and a half! She was such a trooper, though!
Friday night she threw up more, but not as much as Thursday night. Saturday we went to the only skilled nursing facility for infants, kids and teens in Arizona. It's called Hacienda and it's about 45 minutes away from our house at (if you live in AZ and can relate) 16th Street and Baseline. It's a pretty nice place, like a hospital, but more like home, just like we've been told. It's 2 babies/kids to a room, and there's just enough room for the 2 cribs/beds and maybe a side table and chair. We can sleep in her room and they said they have cots, but it will be a tight squeeze. They also have 'Angel House' which is like a boarding house for parents. You have to go through the social worker there to book a room because space is limited. The facility is right next to a park so we could take Harley out for walks to the park whenever we wanted, too. The nurses seemed very nice and caring, the nurse who toured us told us "Never give up hope. There are children in here who aren't supposed to live who end up walking out of here!" when we explained Alpers Syndrome was fatal. That REALLY scored points with me when she said that. The atmosphere was nice, seemed kind of depressing when I walked in, but everything was explained to us and I felt MUCH better about the place by the time we walked out.
The other option would be to take her to Los Ninos Hospital (technically a 'hospital', but more like a short-term care facility to teach parents how to take care of their kids after they're released from the hospital with medical equipment, G-tubes, ect.) which is down the street from St. Joe's Hospital (where she is now) at 24th Street and Thomas. It's a small place with nice nurses. When we arrived, the nurse who was showing us around was holding this really cute little baby (maybe 4 or 5 months old) with ALOT of hair and he was just looking around and smiling at us. She said they were slow and that her and the other nurse were just feeding the babies (the other one had a little toddler girl with pigtails she was feeding). It, too was more 'homey' than the hospital and exceeded my expectations.
I think what we're going to do is take her to Los Ninos and attempt to take care of her ourselves there. If it overwhelms us, we'll take her to Hacienda, and if not, we'll take her home and attempt to get some home health agency to come in and help us out. My mother-in-law has even changed her shifts around to Fri. Sat. Sun. so that she can help out when I'm working (Mon. Tues. Wed. Thurs.) and I can cover weekends so Cameron isn't so overwhelmed. She IS a nurse, so that'll be SOME nursing assistence to get us started... : D
Saturday night was awful. Harley had 2 seizures (they apparently weaned her completely off the Atovan [for seizures] and didn't tell us, so I was TOTALLY caught off guard) and I didn't know they were seizures at first because they were NOTHING like the ones she had at the beginning of all this. I could only tell they were real seizures (and not the myoclonic seizures from the brain damage) because she'd stare off into space, her mouth relaxed and wouldn't move, and between 'contractions' she'd cry or try to (you can see it in her face). She had 2 and both lasted about 4 minutes. I video taped them on my phone and showed the doctor when she came in to check her out. GOOD IDEA, GO ME! I was lucky to have one of my favorite nurses, an older one named Lisa who was VERY experienced and knew EXACTLY what to do (write down when it started, write down her vitals, watch her and how she's moving, write down when it's done, call the doctor, etc.). After the doctor came in and said she'd write for a dose of Atovan to be given she went right away and got it as soon as she could (I then called the nurse's station because Harley threw up and she was walking in the door before the nurse's station answered). We got her cleaned up, changed her sheets, turned off her feeds, and gave her the Atovan. She seemed to calm down and stopped having seizures after that, but it made us realize that we may not be able to take care of her at home, alone. Can we handle rushing her to the ER everytime she has a seizure? It would sure be nice to have that care facility closer to home... But it isn't so... tough. Anyway, they ended up just stopping her feeds and putting an IV in around midnight.
She just got IV fluids until Sunday afternoon. They were giving her half feeds through her G-tube and half IV fluids. When I left last night it was a little more G-tube feeds than fluids and today she's back up to the normal amount of feeds and they still have her fluids going a little bit. She hasn't thrown up today, either! Good girl!
Thursday, May 14, 2009
Yesterday I FINALLY got to go with Harley on a wagon ride! It was about 8:30pm and she actually had her eyes open and looking around! (no bright sun to hurt her poor little eyes) It was nice and cool with a slight breeze, just enough so she could feel it on her skin and in her hair. It was PERFECT out, I couldn't have asked for better weather.
Monday, May 11, 2009
Another big decision is where she's going once she's released from the hospital. We can take her home (we're kind of scared to do that) or to a group home or even a 'halfway' home. The 'halfway' home (which is probably where we'll go) is for people who get discharged, but aren't quite ready to go home (like if you're in a wheel chair, but live on the 2nd floor with no elevators) or need more experience with the medical equipment you're getting sent home with, or if you don't know if you can go home or need a skilled nursing facility (group home). We're going to go 'tour' them and make a decision sometime this week, maybe.
Other than all that bad news, Harley seems to be doing okay. On Mother's Day, Harley and I hung out at the hospital and I spent alot of time just holding her and talking and singing to her. She seemed to really like that, even tried to smile! (I think.) I enjoyed just having Harley and spending time with her while I still can. Cameron got me a purple frosted cake that said 'Happy Mother's Day Katie!' (honestly I still haven't eaten any of it- brought it to my mom's house, though and I'll have some at lunch). My mom and dad gave me a beautiful January birthstone pendant of a girl (gold with a CZ head and the [garnet, I believe] birthstone in a triangle for her dress and gold 'beads' linked together for arms and legs) and a thick gold chain. I have a whole necklace with my family on it, but my mom wanted me to have one just for Harley for Mom's Day. It's really beautiful, I love it!
Friday, May 8, 2009
Thursday, May 7, 2009
Harley seems to be doing a little bit better every day. Yesterday, Daddy and Grandma (Cameron’s mom) took Harley out for a wagon ride. She even got to go outside! It’s the first time my poor Honey Bear’s been outside in over 7 weeks! (Since she was admitted.) She kept her eyes closed the whole time, but that’s because she wasn’t used to the bright light. Grandma also worked with Harley in moving her arms & legs. She even got to hold the TV remote! It’s okay, we told her we wouldn’t tell Daddy. She’s starting to control her head better, too. She’s been opening her eyes wide open for us and looking all around her room and even watching some TV.
Tomorrow around 8:30am Harley will be going in for surgery to have a GJ tube put in. It’ll be a valve in the side of her abdomen with a tube that runs to her intestines. It’ll be in place of the feeding tube because it’s more permanent and causes fewer problems. I’ve been told it’s a common procedure, so we shouldn’t have anything to worry about.
That’s about it for now… Once again, thank you everyone for all your support!!!
Tuesday, May 5, 2009
Sunday, May 3, 2009
I just don't know what to do. I spent all yesterday crying, it seemed. I've talked with my mom and blamed God for hating me and wishing I could just die and let her live. I don't know what else to do. I can't really take off work because I've taken off all the time I can & now I NEED to work to pay the bills. (I'm not asking for handouts, just stating a fact.) I feel guilty because I got life insurance for her (like 50 cents a month for $5,000 coverage) through work, but I was too cheap to get the $10,000 one for just $1 a month. If she does die, I can't afford the perfect funeral for her like she deserves. Then I hate myself for thinking about my daughter's funeral when she really isn't doing too bad, physically.
Our first neurologist (we've had 3 so far) met with us yesterday and I asked him how a person's brain can be shrinking and yet they're still improving on the outside. He just said if the brain isn't affected in one concentrated place you can't really tell (and her's has been affected all over...). I just don't know what to do.
I'm working today and tomorrow and have Friday off for a 'Care Meeting' with all her doctors and I really hope I can keep composure for that. I'm hoping they can tell me 'Oh, no, she's not going to die. She'll be okay, this is just a minor set back. Her brain miraculously stopped shrinking!' but I know that'll probably be far from what's said.
I just keep thinking about it and wanting to cry. I'm at work, so I can't. If my daughter only has a month to live, shouldn't I be spending every waking minute with her? Why is money more important than spending my daughter's last days with her? Is keeping our apartment, where we won't mentally be able to live if she does pass, more important than her? Just some things in my train of thought...
I know I've been a good mom through all of this (even the doctors have said they're impressed), but that can't stop me from thinking these things. I was even telling my mom I can't imagine having to shop for toddler caskets and planning out a funeral for a baby who didn't see her 2nd year... My mom said she'll get all the info, put it up and will hopefully be able to shred it when she comes home. I have such a good mom.
Okay, I'm going to stop thinking bad thoughts and go back to optimistic while I'm at work. I just had to vent and get this off my chest to someone and it's easier for my to type or text than talk about it in person or over the phone. PLEASE just keep praying for a miracle, everyone. If anyone deserves one, it's Harley...
More discouraging news: she went in for an MRI Saturday and the results were that her brain shrunk a little bit more. Only a little, but still... Since she's been awake, doing therapy and is alert, shouldn't she be getting better instead of worse? I just don't understand it and it's SO frustrating having to work and not be there to know ALL of what's going on. I have so many questions and there are limited people who can answer them for me. My mom's having the doctors set up a meeting with me and all of them to discuss what's going on since I haven't been there. Hopefully that will help.
Other than that, Harley's been doing good. Her chicken pox look so much better and they're scabbing over nicely. I've noticed her arms can extend more now and she can open her hands, which is very promising! She seems to be more tired now, not really wanting to open her eyes much. It may be from med changes or being tired from therapy, so I'm not too worried.
That's it for now. Wish us luck and please pray if that's what you believe. Thanks so much for all the on-going support and love!!!