A Special Princess outfit from the nurses

So much for tomorrow…to finish the last post, Penelope ended up with two separate infections in each lumen of her line and C. dif. The C.dif caused the diarrhea but she didn’t test positive for it for several days. They put us on precaution after she tested positive so we were stuck in the room for over a week! C. dif is not killed by antibacterial gel because it is a spore so the only way to kill it is by bleach, which you obviously can’t wash your hands with, and by ashing with soap and water. Most adults have the ability to fight C. dif so we aren’t at risk but because it is a spore it is easily transferred so we have to wash up and stay in the room so we don’t pass it around the unit but we also had to go home and wash everything so she didn’t get it again! Since chemo obviously causes the kids, well people in general, to have a compromised immune system it is much easier for them to get infected which also makes it unfortunately quite common. I have to say it is the most rancid smelling poop I have ever smelled! I mean I know poop generally doesn’t smell good, and if yours does you might want to get that checked out, but this is smell can make the most tolerant person like myself literally throw up a little in your mouth.

The line infection AND C. dif combined caused her to have the fever. We ended up inpatient for two weeks. First criteria for leaving was 48 hours with no fever, second was a negative C. dif test, and third was negative cultures in both lines. Pretty much after day two she had no fever. Check.  After the 5th day she was negative for C. dif, although she had to take this nasty oral medication for 14 days. Check.  The line infections were a little more tricky. The cultures generally take 24-48 hours to grow and if after 48 hours nothing grows at all we are all clear. Culture one didn’t grow 48 hours after the second culture was taken, which was 12 hours after the initial administration of antibiotics, so we were in the home stretch. The problem ended up being that the second bacteria that was growing was growing at the 36-40 hour mark so at 24 hours we would be a little hopeful but then the next day we would find out it still grew. The next step in the lab was for them to literally figure out what bacteria it is exactly so the could pinpoint the exact antibiotic that would work. Having taken microbiology as a pre-req for nursing school I know exactly what is involved in isolating a bacteria, which is a lot of hurry up and wait. So for several days we just hung out. It was great when we were taken off of precaution after day five. I probably don’t have to tell you but five days stuck in a 10×12 hospital room is no fun, let alone with a 16 month old who is very, VERY active. One good thing was that being on precaution gave us our own room, which is usually saved for neutropenic patients.

In the playroom with Marley, of course she was there too

After being there for about 8 days they finally were able to pinpoint that is was P. fluorescens, which is apparently a very rare bacteria to find. Leave to Penelope to be rare and original, Dr. Ahn agreed!    After switching her antibiotics and being on it here for 48 hours we were finally able to go home. Granted we went home on Vancomycin, Cefepime and Flagyl. Vanco and Cefepime both IV, both every 8 hours but Cefepime ran over 30 mins and the Vanco over an hour and a half and each alternating lumens. The Flagyl is an oral medication but I tasted it, because my dad always told me I should know what she is tasting, and it is NASTY! The one they gave her inpatient was pink and smelled good but the one we got from the pharmacy looked like crushed white pills in some kind of goo and tasted exactly the same. On top of all that, we had to flush and heparin lock each lumen each time the antibiotics were done, still do all the normal meds, she still had diarrhea AND chemo got pushed back a week. Aye aye aye…poor little bug.

The celebratory cupcake

Being the champion that she is, Penelope pushed right through as if nothing happened and finished her antibiotics. We ended up having chemo a week later, on 8/26, and it was outpatient in the clinic but turned out fine. She slept most of the time because she got Doxorubicin and Cytoxin, both of which make her sleepy and sick. She only got cranky towards the end but then Nurse Stacy gave her a last chemo cupcake! She loved it so much. I just let her at it and she licked and licked and licked the frosting until the top of the cupcake showed and then licked again and the cupcake broke open. She quizzically looked down at it, looked up wide-eyed at me and said “Uh-Oh”. I couldn’t help but giggle. She is too very cute.

Pennies4Penny is participating in the Shamu And You Walk!
Walk with Us!
Choose our 1-mile OR 4-mile course. Grab your friends and family for a fun 1-mile stroll – starting at the South Shores Boat Ramp and crossing through SeaWorld – or enjoy the longer scenic route that continues around Mission Bay. Either way, you’ll cross the finish line back at the Boat Ramp to enjoy games, food and fun at a special celebration.The Shamu & You Family Walk is a great way to help the life-saving efforts at Rady Children’s Hospital-San Diego.

We need 48 more team members by September 15th!!! Please join our team!

http://shamuandyouwalk.kintera.org/pennies4penny

Penny and her family  have been extremely busy with doctors appointments and hospital stays.  We appreciate your support even though there may be long periods between updates!  A lot of times it’s easier just to post a mini-update on Facebook, so be sure to follow us there.

On the 17th, I got to see Penny, Carina and Aaron at my nephew’s birthday party.  Penny’s hair is growing in a bit and she’s so cute with her peach fuzz head.  I’m also very happy to share that her mobility is improving and she’s now crawling again!  It brought tears to my eyes to see her boogie around my brother’s house.

I know Carina or Aaron will get in here with a better update soon.  Right now their life is reeling.  Thank you for your patience!

~Rhea

Penelope and her Best Dog Marilyn watching fireworks

Just when we thought that light at the end of the tunnel was getting closer and brighter we hit a long bumpy road…that went uphill. Round 6 of chemo was only a one night stay, as we expected, but smooth would not be the word I would use to describe the time following chemo this round. It would be more like…ugh. My sweet ladybug weighed in at a whopping 12.8 kilos (28.16 lbs) at admission this round. In the chemo world, or at least the protocol Penelope is on, when you weigh less than 12 kilos the dosage is calculated by weight and when you’re above 12 kilos it is calculated by body surface area (not sure what happens when you ARE 12 kilos). Dr. Ahn explained that because Penelope was over the 12 kilo mark that the increase in dose would be a big jump for her, she is a tiny giant. We were supposed to expect her to feel, look and act worse. What happened was not what I expected.

The week and a half following chemo was difficult, for her and for us. Poor little girl was sick and crying all the time and all she wanted was mom to hold her, no playing with her no sitting next to her, hold her. This obviously made it very difficult for me to get anything done, including post, because I was…well…holding her, and she isn’t one of those babies that fits in a carrier. With the throwing up three of four times in a 24 hour period my laundry went through the roof, as if it wasn’t hard to keep up with before! On top of the clinic and doctors visits that whole time I was completely exhausted. Once that period started to clear up, I was absolutely forced to deal with some of my own medical issues that I had been ignoring in the wake of Penelope being diagnosed. So the short week I had where she felt well enough that I could leave the room I had several doctors appointments myself to add to her doctors appointments. When we thought all was well and running smoothly again life decided it would come along and correct our thinking. The night of the 19^th Penelope woke me up screaming and crying in her sleep.

Trouble maker taking all the diapers out of the bag

It didn’t make much sense because she only did this type of screaming when she was getting her GCSF shots and she had been done with the cycle for three days already. I calmed her down each time and she went back to sleep. The next morning I heard her chatting it up with her friends Elmo, Lamb and Hippo in her crib and went in to get her. After our morning hugs and snuggles I put on KPBS and started coffee while she ate her Cheerios. Within an hour of getting up she was rolling around on the floor and covered in diarrhea. Like armpit to ankle covered. Mom and dad spring into action and we get her in the shower and hose her off get her dressed and then chalk it up to chemo. The diarrhea didn’t stop at all and just continued to get worse. I called our nurse case manager, Chrystal, on 21^st and she told me to watch for a fever and any additional symptoms and call her if something changes. That afternoon around 3pm I was giving Penelope a bottle to put her down for a nap and she pulled the bottle out of her mouth, sat up and looked at me and just projectile vomited all over her and I. Major freak out time for Mom. Aaron had just gone to run errands that I needed done but had been putting off because of the poop situation we had going on so it was just me and her. I grabbed an empty cup on the coffee table and caught the next round as I rushed us to the shower, again, for the 4^th time that day. We just hosed off, she puked some more, we washed up, added our clothes to the laundry pile we had going and called Chrystal. While I waited for the call back I am cleaning the carpet and checking Penelope’s temperature. When she calls back I let her know there was no fever and we were due to be in the clinic on Friday so she said just to be safe we would move our appointment to the next morning, Thursday, at 8:30a and she would also have a doctors visit. Just to clarify, clinic visits aren’t always doctors visits but doctors visits ALWAYS have a clinic visit an hour before. That night there was no more puking but the poop didn’t stop and just got more and more watery and after throwing up Penelope just refused to eat or drink anything. That night we all slept in the living room on a pad on the floor.

So sick and so happy...for the picture

The clinic appointment was strange. I collected a stool sample from home that morning because Penelope woke up covered in it again and we just hopped right in the shower. They sent the sample for culture and put us in an exam room just in case she had something that could get the other kids sick. We waited for a while for the lab results to come back and Dr. Ahn surprised us by seeing us. She was inpatient but sees when her patients have appointments on the computer and she came right over. They didn’t see anything really wrong. Her ANC was 2700, which is perfect, her platelets were 37, which is low but not a critical (20 and transfusion) low at that point. Dr. Ahn ordered hydration for 2 hours because her blood sugar was low from not eating and she was dehydrated from the diarrhea. She told me to watch for petechiae or new deep bruising. As we laid on the exam table watching TV as she hydrated I noticed the petechiae dots starting to pop up, not in bunches but singularly in a lot of different places. I told the flow nurse and Dr. Ahn called for platelets and for Penelope to have IV hydration at home. We ended up being at the clinic from 7:50a until 5p with two big poops in between. Once we left we had to fight traffic back home and meet the home care nurse to set up the IV. Home care got to the house around 6p, set up and left by 7:15p and then…more poop…in the shower again. We got her out of the shower, put on her jammies and I made several failed attempts to feed her and give her a bottle but ended up just bouncing and rocking her, and me, to sleep.

Friday was better-ish. We had fluids, she was in a little bit better spirits and although she still had diarrhea like I have never seen before, she was enjoying her shower time now at least. We went for a walk that day and that I about all we did. Her stool sample came back negative for both C. diff (Clostridium difficile) and Rotavirus, which are the two things they thought was giving her diarrhea, so we just thought we had to ride it out and see if it got better. Aaron and I were okay with that as long as she was hydrated and still smiling. The frequency of the bowel movements seemed to decrease even though it was still a whole lot of very watery and very smelly poop. Saturday afternoon after our home care visit Penelope started to act very sleepy. It was about her nap time so it wasn’t terribly alarming but when I went to lay her down she seemed warm to me. I thought I was just being a worry wart of a mommy but as she slept her cheeks started getting flush. We took her temperature and it was 98.6. Thirty minutes later it was 99.5. Thirty minutes after that it was 100.1. Ten minutes later it was 98.9. We continued to check her temperature every 15-20 minutes for the next three hours. We have a temporal thermometer as well as the axillary one and the axillary one hit 100.8 and we called the on call Hem/Onc doctor. By the time he called back, maybe 15 minutes later, I was showered and changed, we were packed and Penelope’s temperature was 101.4.

I will leave it there for tonight. I had a long night and day with her here at Children’s with diarrhea, blood transfusions, crying and crankiness, being quarantined to the room and dad being out of town for work. I totally apologize for not having a chance to update you before now but in the last 25 days it has been nonstop. Just with all of her medical issues we deal with on a daily basis we have all the normal things everyone else does too. Aaron works full time, I have a house to keep up with (cleaning, laundry, grocery shopping, errands, and meals to prepare), we have a marriage to remember and a beautiful daughter to cherish good times with when she feels well. We actually were able to make it to one family function, my little cousin Robert’s birthday, which I absolutely didn’t want to miss. I also helped get Marley to radiation and clinic a few times a week since her dad had to work. Time is just flying so thank you to those of you who continue to support us, pray for our little girl and understand when we can’t get updates up quickly. Please know that we appreciate you all and you’re always on our minds. I will continue the update tomorrow since we won’t be leaving here until sometime next week and it is just another long story from our admission until now. Thank you again! See you tomorrow!

Quick catch up – after the TPA worked that holiday Monday we had labs that following Wednesday and of course her lines wouldn’t draw again. We did the TPA all over again, making it a long clinic visit that day. After an hour in her lines, they pulled the TPA out and they were able to draw from them again. Needing TPA twice in less than a week made me very concerned since this was a newly inserted line and I was afraid that something was going wrong with it leading to Penelope having to, once again, have surgery. I spoke with the Nursing Director of the clinic, Susan, and she said there are several other things they can do before surgery if it continues, like a dye study to check for clots. We made a follow up for Friday to draw labs to check her counts and to double check that there wasn’t a need for TPA again. Friday went amazingly – whew!

Penelope was ordered some braces for her legs as well as for her back and we were able to pick them up and start wearing them this round. She has AFOs (ankle-foot orthotics) for her legs and a brace to help alleviate the curvature of her spine from surgery as well as the size of the tumor that pushes her to the right. She hates them but she has to wear them for a few hours everyday until we go to the spinal defects clinic.

Round five put us in the hospital over Father’s Day weekend. We were directly admitted on Friday morning and we got there really early so we could start early and be able to get out early. Things didn’t go exactly as we had planned. Apparently there was some miscommunication and our nurse wasn’t aware of our pre-admission clinic appointment when they drew her lab counts, had me sign the paperwork, took her physical and history so she started doing it all over again. We got to the hospital at 8a and by noon we hadn’t started chemo, which I thought was an unusually long time. Aaron and I were uncomfortable too because even though they knew we were coming, our room was lacking normal conveniences like the bed chair…really it was lacking two chairs at all. Since we were sharing the room for the first half of the day, one of us was standing for the majority of the morning. We asked the nurse for another chair and she told us it would be a half hour because they were going to rounds. A half hour?? For a chair?? I was a little bit frustrated and went out to the nurses station to see if someone could get me a chair. It’s a little bit frustrating when your nurse isn’t available. Sometimes it feels like everyone has the “that’s not my job, I’ll call your nurse” attitude. I think it is just ridiculous. I understand when people are busy but when I walk up and they’re are just sitting there chatting then someone can get moving on it. Needless to say I was able to get a chair. After rounds our nurse never made it back into our room, which led to the question of where the chemo was. We made sure we over hydrated Penelope with 20 ounces of milk before we came, I put the cotton balls in her diaper before we left the house so as soon as we got there they could have a urine sample, we thought we did everything we were supposed to do. Having done the pre-admission appointment normally allows them to preorder the chemo so we can start quickly. You can see what happened here.

I finally was able to get the charge nurse for the shift, the amazing Carol, to come in and get things rolling. We obviously still had to wait for the chemo and ended up getting started at 1p but it was about the best we could expect after the morning. It is just so difficult to keep a 14 month-old busy in a small double room for that many hours. So the way the chemo ran, for this round, is she got the Cyclophosphamide (which they refer to as Cytoxin for some reason) which requires prehydration over 2 hours and runs over 1 hour. With our extra milk we were hoping that her hydration would be high so we could decrease the hydration time but as I explained above, it didn’t quite work out that way. After the 1 hour of Cytoxin, we started the Etoposide (ETOP) which runs over an hour for 3 days every 24 hours. The ETOP requires posthydration on day one but day two and three it is up to the doctor on call and how well Penelope is holding up. This would make us discharged at 3p at the earliest on Father’s Day. Because protocol calls for the chemo to be given every 24 hours we really had no other option unless the doctor on call felt it would be okay to bump her ETOP up on days 2 and 3. When the doctor made rounds we discussed it with her and she mentioned being able to possibly do it but she would have to review Penelope’s chart. I suppose that is the best we can do at this point.

Everything went smoothly. Penelope was super cranky after the Cytoxin and that didn’t change over the next few days. Luckily our roommates left on our admission day and we didn’t have any other roommates over the weekend so it made it nice to be able to manage her being cranky. The doctor approved us starting her day 2 ETOP early and her day 3 ETOP at 10a! It ran over an hour and we were out by 11a! Having stayed in the hospital on Mother’s Day it was nice to not have to stay on Father’s Day, at least not for the whole day. We went to dinner that night and Aaron got a Chargers BBQ tool set and I framed the poster from the first benefit show for him. He had been wanting it done for a long time and it was a difficult size to find but with a sweet Micheal’s coupon for custom framing I was able to have it done.

Over the next two weeks we just tried to catch up again and hang out as a family and with some of our friends. We went on some walks when the weather was nice. Penelope and I went through our closets and donated a few bags of stuff to the Goodwill, which took a little longer than it probably would have doing it by myself but it was fun. We put together her kitchen that Grandma Alyce bought her, which she loved but got very frustrated that she couldn’t stand up to play with it. I just sat with her for a little while and helped her play.

On day five of her ten day GCSF shot schedule she was having a terrible time sleeping. She woke up screaming in agony about every 30-45 minutes. It was awful. She ended up sleeping with me in the bed and kicking dad onto the couch but he had some middle of the night work to do this week so it wasn’t terrible. On day seven her ANC was up to 24k, which is 8 times normal which probably explains the sleepless nights, so we held her GCSF shots day seven and eight and when we go in today we will check her counts again to see if we do her GCSF for days nine and ten. Penelope has an MRI on Friday and has to have a doctors visit and a history and physical done before the MRI so we are taking care of all of that today as well. She is continuing to do amazing with the increase in her leg function. It really does seem that with every round of chemo she is able to move more and more. As of today she is able to get her legs underneath her and crawl, in a modified way and a slower than normal rate but she is working it out. We brought our dog, chihuahua fox terrier mix, Lola home and she definitely seems like motivation for Penelope to move quicker since Penelope tries to catch her.Her bald spot in the back is also starting to fill back in! Yay baby girl!

Our next round of chemo is only a one night stay. We will be admitted on Thursday the 8th and released on Friday the 9th, given everything goes smoothly. This round she is getting CARBO, Cytoxin and DOXO, which is a little bit frightening to me only because the DOXO makes her sick and the Cytoxin makes her very cranky so even though we are only staying one night I have a feeling we have more in store for us when we get home than we have had in the past because of the combo of drugs but it puts us one more round closer to the end and that makes it all worth it to me.

I know that everyone has been patiently waiting to get an update and I definitely appreciate your patience! You’re right, no news has been good news for us on the cancer front. Since there has been a lapse in time since my last post and my lovely munchkin only allows me so much uninterrupted time to post I may have to catch up in more than one post.

Since my last post we were able to get to the PACU for the anesthesiologist to get her IV in and he did it in one poke! We finished her last day of antibiotics and we went home for a few days with no lines and no medication! We took full advantage of the weekend and got a regular bath in and everything! We went back in at 530a on 5/26 for the placement of her new line and were directly admitted right after to start her next round of chemo.

Round four went somewhat well. Penelope seemed to get much sicker than previous rounds. She threw up in the hospital twice and she threw up at home several times as well. It just breaks my heart when she does because her little face looks at me with such confusion as to what’s happening and I feel awful not being able to explain to her what it is. Previously when she’d get sick it only happened once or twice and only when she got the drug Doxorubicin so it was much easier to manage on all levels. This round during our hospital stay Penelope got to try some corn dog bites! It was just a corn dog cut into pieces but she seemed to enjoy herself with the hot dog as well as the corn for a while. Then it just went to the corn bread part. Something is better than nothing for us at this point! We got a parting gift from the hospital when we found out that our discharge planner was able to get coverage for us to do our GCSF shots at home from now on! Hip hip hooray! This was the best discharge we have ever had!

Once we got home things got really busy. Penelope was discharged on the 28th and it was Memorial Day weekend! Saturday and Sunday we caught up with a few things around the house and just decompressed like we always do. Monday we had people over for the holiday and to kick off summer. Penelope’s new best friend Marley came over with her parents, Krystonia and Henry, Robyn, Annette and brought Marilyn and Harley (our extended dog family). Everyone had a great time all day but of course when I went to flush Penelope’s line it wouldn’t flush and she cried a lot more than normal. The dressing that was on the line at the insertion point had blood on it and of course I panic, rightfully so if you ask me! We ended up going to the hospital and luckily didn’t have to spend the night. They put TPA in her line, which is medication used to break down any fibrin sheaths that are blocking her line. She and I stayed for an hour and a half, the nurse came and drew out the TPA and it worked! We got to go home that night and all rested peacefully.

I am pushing my luck with my ladybug right now so I better cut it here. I will definitely post again tonight because there is so much to catch you up on. Thank you for your continued love and support!

Not an hour after I posted my last post…Penelope’s IV went bad. Same story, OCCLUDED PATIENT SIDE alarm, no kinks anywhere, wouldn’t flush, came out completely bent.

A little blurry but this is the IV catheter that came OUT of her arm/wrist

It came out and luckily the echo medication for sedation was oral so we didn’t need the IV right then. They gave her the sedation medication dose for her weight and of course it wasn’t enough for my tough cookie. Penelope starts getting a little bit loopy and wants to move all around the crib so I had to make sure she didn’t bonk her head anywhere. It reminds me of trying to sedate a large animal, like an elephant, wobbling back and forth and fighting the sedation. They gave her another half dose, she fought that again and I actually had to swaddle her and rock her, with all the fight she had still, until she finally crashed. They did the echo, I got a shower and rushed back because the CHET team was coming to insert the IV.

After a full weighted dose of sedation medication

So the CHET team got called to a trauma and we had to wait a while before they would come. Penelope woke up, of course, so when they came she was full of it. They tried 3 times with no luck. She fought and cried and every once in a while got distracted by the bubbles the Child Life Specialist, Andi, was blowing for her. Now we wait. The next step is the anesthesiologist but since they are in the OR all day we just have to wait until they call us. Once that happens we go straight to the PACU for another poke, hopefully one that sticks.

Smiling even at 3 weeks old

We are still here. I apologize, again, for not posting sooner but as you can imagine my days are filled with entertaining a 1 year old with an IV in a hospital that only has a playroom that is open during certain hours. Things have been up and down since Aaron’s last post. The IV that Miss Carol saved blew out that day, forcing them to call the CHET team to put in a  new IV, which they did in her foot this time. The foot IV worked out fairly well because she has limited mobility in her feet, although it made it difficult in the physical therapy gym and impossible for the orthopedic tech to do the molds for her feet. We did pretty well for 3 days and at the end of the third day, Tuesday night around 10:30p, the foot IV came out. She has to finish a 7 day course of treatment on the IV antibiotics from the day her Hickman line was removed and that means the CHET team came again to reinsert the IV. The CHET team always gets called for Penelope now because she is a hard stick and generally the CHET team is able to get it done in one poke, which saves all of us a TON of trauma. They put it in her left hand this time, which I wasn’t thrilled about but apparently the veins in our hands are stronger than the veins in our feet.

At least she is still eating her veggies!

Having her IV in her hand meant that the ortho tech could come back and do the molds for her braces! I am not sure if this was in a subsequent posts but Penelope is under the care of a rehabilitation doctor now. Dr Ahn felt that it would be better to get this doctor involved in her care because then her therapy would be a little more intense. The rehab doctor thought it would be best for her to have braces made for her lower legs to keep her ankles flexed and limber while she is gaining her strength back. She also thought it would be good for us to consider a soft brace vest for her back. She wouldn’t have to wear either all the time but the back brace would help to prolong the onset of scoliosis, which they feel is a strong possibility with her back surgery and the size of the tumor pushing her to one side.

Of course since we were up way past Penelope’s bed time due to the new IV placement at 11:00p and she still, like clockwork, woke up at 6a so by the time her nap rolled around she was overly tired and very difficult to get to sleep. I finally got her down around 9:15a, which is her normal nap time but it was a fight let me tell you. Of course, with all of our amazing luck, the ortho tech comes in about 15 mins later to fit her molds. AMAZING He was able to do both of her feet while she slept, I told you she was tired. But when it came time for the mold of her body for her back brace we had to take off her shirt and sit her up so she woke up. She did really well with it though and it was very quick and painless but the process of getting her BACK to sleep was brutal. She gave up around 11a and slept until 1:30p so I took a nap too! Our day shift nurse, Siobhan, was very attentive to Penelope’s IV, checking it often to make sure it was still good just because she knows all to well what poor Penelope goes through with these IV’s. Around 5:30p she noticed that her little chubby hand was overly chubby, so basically swollen. She started to unwrap the tape from the IV and saw that the IV wasn’t even in, and it was bent at that! On with the CHET team…again. This time they were able to get it in her right hand, again, insisting it would be better because the veins are stronger…blah blah blah. Within an hour the IV was alerting OCCLUDED ON PATIENT SIDE meaning there was something blocking it on Penelope’s side. There were no kinks and then I saw that the insertion point of the IV was right on Penelope’s wrist and with just a splint on it she was still putting pressure on it causing it to kink. I panicked and called Siobhan.

Old school Penelope with Dad our first night home

She grabbed the tape and put another piece of tape on it over the insertion point and then wrapped a no-no around her hand. Alone the no-no may have worked if Penelope couldn’t get the Velcro off but instead of putting a no-no on the other hand she just put a sock over it. We ALL want this one to last until Friday morning, our last dose of antibiotics is at 8a. After that dose we get to go home!! This weekend should be pretty fun. Grandma Alyce is coming to see us for the weekend, which will be some much needed help, support, and love from her and time for Aaron and I. Since Penelope will be line free, I am hoping it will be nice and we can go to the beach!

Since all of this happened the week she was due for round four of chemo and we still have to have her Hickman replaced, we are back here on Wednesday morning at 5:30a. She is scheduled to have her Hickman placed at 7:30a, check in time at 5:30a, and then she will be directly admitted into the Hem/Onc unit to start her hydration, draw labs and get ready to start chemo. This round is another 3 day round and best case scenario we will be home Friday night, which is what we are crossing our fingers for! The end of this stay should be pretty mellow. She has an echocardiogram  today and antibiotics. Hopefully I will get in a shower today. This stay has been a tough one for me for so many reasons but I want to go home more than I have ever wanted to go home before. I could just go home and curl up in bed and stay there for days, wouldn’t that be nice!

Old school again, with Grandma Alyce and Poppa Ken

I didn’t mean for this post to get this long, which just reminds me I need to post more often when things happen. It’s just hard to concentrate sometimes and I have had a much more difficult time emotionally this round which lends itself to being a little blue and makes me want to sleep when she sleeps. It’s a snowball effect. Keep Penelope and her precious IV in your hearts until Friday morning! We need to have a drama free next 24 hours!

Last night I spent the night at the hospital and let Carina get some well needed rest and a little time with her friends.  We don’t get much alone time together nowadays , but I really think it’s important to still live life while all of this is going on.  Even if it’s separately for the moment, I think it’s still important to remember that you’re a regular person – not just the parent of a very sick child.  Otherwise, it makes the situation that much more of a problem.  If you can’t get out, at least every now and again, and have a little bit of fun and get a good nights sleep then, in my opinion, you’re just compounding the problem.  You’re going to have a sick baby (still) and a burnt out Mom – which is definitely not good.  Anyhow, Penelope and I had a fun night – we watched movies and ate goldfish and gave each other ‘big hugs’ (she wraps her arms around your neck and pats you on the back when you say big hugs).

Then the morning came – we got ready and headed down to the cafeteria, which opens at 630 am (she was up at 545am).  BUT – on the weekends it doesn’t open ’til 8am!  Ahhh!  I needed coffee or an energy drink or something!  Too, if the little one doesn’t have some cheerios shortly after she wakes up she gets a little grumpy herself.  So, we just walked around for a while trying to kill some time.  Penelope was riding in her little wagon and was trailing her IV stand behind her.  One of the nurses had showed us a cool trick where you set the back end of the wagon on the front of the IV stand and you can tow both at the same time.  It works really well…unless you hit a bump…

We’re heading down the hall towards the elevator and the flooring switches from linoleum to carpet, not a problem though, I took it slow and deliberate, but that didn’t matter.  The IV stand sticks on the ledge that transitions linoleum to carpet – the wagon pops off of it and the IV stand comes crashing down forward, right at the baby!  I catch the stand about an inch above her head – but break some of the tubing in the process!!  At this point it’s IV fluids that are leaking everywhere.  I grab the baby, ditch the wagon in the hallway and run into the elevator to head back up to our unit (once again we’re on the second floor and our unit is on the third).  As I get out of the elevator it’s no longer leaking fluids, it’s leaking blood!!  I guess once the pressure of the fluids wasn’t pushing in that her heart decided to keep pumping blood out!  So we get to the nurses station and I’m pinching the tubing with my fingers, had a pool of blood in my hand and a trail of blood splatter behind me.  Holy Moly!  Now I’m kinda freaking out, but Penelope has no idea what’s going on and is just waving at everyone while nurses are scrambling to get towels to soak up the blood.

One nurse, Carol, who is totally awesome and was a HUGE help to us when Penelope was in really bad shape, jumps into action.  She starts dishing out orders, clamps the line and has our ‘actual’ nurse get some caps and switch things out.  At this point my heart is going a million miles an hour, I have blood all down the leg of my pants and all I’m thinking is that I really, really, really hope that she doesn’t have to get her IV replaced.  So far, in our hospital experience, they’re not too good getting an IV started for Penelope.  Fortunately, they were able to quickly flush it, start a new tube on the existing IV and all was well.  Big sigh of relief there!

All’s well that ends well, so we’re good to go.  As you can see from the pic, Penelope was none the wiser, all smiles, and is now sleeping. 

Just a quick update, have a great weekend!

Best

Aaron