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!