Saturday September 21st
Chris and I woke up to our alarms at 6:15am on Friday, and were out the door with lunches packed and everyone dressed and ready to go at 6:45. Kaylee only had until 7am to drink water since she was supposedly getting sedated at 8am. She thankfully drank some water on the way to the cancer clinic until 7:00. The bonus to getting up so early is that it was dark outside when we left the house, so on our way, we were able to see the sun rise. (I am trying to find something positive to talk about before I tell you about our day!)
We arrived to the clinic right on time, and usually we are called right in to get all the pre-procedure things done, but this time we waited for 30 minutes until Chris asked how long it might be. The nurse was under the assumption that we were already called to the pre procedure room, so she made sure we were next up. Kaylee was restless and asking for water, so we were eager to get things going. Once we she had her finger pricked, blood taken, weight, and height checked (and we calmed her down from crying), we were taken to the sedation room to wait on her blood count results, access her port & sign paperwork.
This usually takes no longer than 20 minutes, so after an hour of waiting (and Kaylee crying asking for food and water) I went to ask someone what was going on. She said they would be with us as soon as possible. After waiting an hour ½ (Kaylee had now been up 4 hours without any food and 3 hours without anything to drink…. to say that she was irritable is an understatement (poor thing!) Chris and I were clearly not pleased as well. They apologized for all the waiting, they let us hold her until she was sedated, and we kissed her cheek before we left to go wait in the waiting area.
The lumbar puncture and injecting chemo in her spine isn’t a long procedure, but we were still surprised to see the Dr 10 minutes after we left the room. She said “So we are done, but Kaylee’s sedation medicine wore off earlier than we expected and she woke up as we were finishing. You can go see her. She is awake.” (This was shocking b/c the anesthesiologist usually makes sure she is sedated long enough for 15 min after the procedure is done, b/c when they inject chemo in the spine, the patient has to lie still for 15 minutes. In my mind ~ Kaylee is awake? This can’t be good, she doesn’t lie still…ever… Wait…better question…she woke up WHILE they were finishing her procedure? What?! What does that even mean?! ) We rushed to her room and were not expecting what we saw. I heard her crying before I even entered the room. She was frantically looking around, would not make eye contact with us, she was thrashing, crying and screaming “Cracker!” I immediately became nervous and said “Can I please just give her a cracker?” (She was still lying flat but she was trying to sit up, so the Dr asked me to hold her still. (Seriously?) She was frantically reaching for something in the air and yelling “Crackerrrrr!!!” with tears running down her face. I desperately tried to give her juice but she just squeezed the juice box, getting it on her neck and cried even more frantically. I finally got a goldfish cracker from Chris and gave it to her. The nurse said “Maybe if we leave the room, she will calm down, y’all take a minute with her.” The Dr and the nurse left the room. I was trying to calm K down and then out of nowhere she was still making the crying face but no sound was coming out, (and this is the really scary part) I’m standing over Kaylee, looking at my baby girl who is still not making eye contact with me, Crying with no sound, and her eyes roll up in her head, she STOPS BREATHING AND STARTS TO TURN BLUE!!
Me: “OH my God! Oh my God! SHE IS TURNING BLUE! She isn’t breathing!! GET HELP! CHRIS!!!” Chris: (screaming) Someone Help! She isn’t Breathing!! DR!” Me: (at the same time as Chris) Dr! Help us!! She is turning Blue!!!”
The Dr and the nurse rushed in and immediately backed me and Chris away, finger sweep the goldfish cracker (that was in her cheek by the way, not her throat) and put an oxygen mask on K. Within a few seconds (which felt like minutes) K’s eyes flew open, she gasped for air, batting away the oxygen mask and screaming!
She was still crying and yelling “Cracker!! Cracker!!!” (She was so hungry!) I looked at the nurse who (after a min) allowed us back to K’s bed and I said “What can we do?” She said “Kaylee has to drink something before she can eat. We don’t know if a particle of the cracker is lodged in her airway, so she has to drink first.” I tried to keep giving K her sippy cup and she kept shoving it away only getting angrier. (They had her sitting up at this point)
K then starting trying to rip her port line out of her chest while screaming! The Dr asked me to pick her up and put her in my lap. K seemed to recognize me at this point, but there was no consoling her. She kept grabbing to rip out her port in her chest, and crying. The nurse asked me to give her a bear hug so she couldn’t rip it out. A few minutes went by of the nurse (and us) watching and trying to console K. I pleaded with the nurse to please let me give her food since that is all she was crying and screaming for. Since K was just getting more upset she said “ok, try one cracker.” I gave K a cracker, and she immediately gobbled it down and then reached for her sippy cup and gulped down water. She then ate the rest of the mini bag of goldfish and continued to drink water. (Keep in mind, she was still crying in between bites.)
The nurse still needed to give K a different dose of chemo through her port line. (Bad timing.) K freaked out kicking and screaming. The nurse actually worried that K had partially pulled the port out, and had to check it out before giving her the dose of chemo. Thankfully, the port line was still intact, but I had to hold her hands away because she kept swatting at the port line making it really hard for the nurse to inject the chemo.
I said “Something is obviously wrong!! I’ve been with her every day since she was born, and with her after every sedation and she has never acted this way! Something is wrong!” She hasn’t stopped crying, she hasn’t calmed down, Can’t you do something for her?” All I was told in return was “sometimes kids act differently after each sedation, and sometimes this happens.” I said “But she stopped breathing!” The nurse said “this is not uncommon with a child under the age of 2. They can get so upset, and hold their breath or they don’t get enough air, causing them to pass out. “ (This still makes absolutely no sense, b/c she didn’t “pass out” she stopped breathing and turned blue!)
FINALLY, after a while K was calming down a bit in my lap, watching Elmo on the IPad .My mind was starting to catch up with had just happened in the last hour, and I could not hold back the silent tears just as the Dr walked in to check on Kaylee. The Dr said “Its ok, it’s ok to cry… I know. You both got scared. She’s ok; she is going to be ok. You know that, right?” I nodded and k looked at me and said “Mama?” saw me crying and started to cry again, so I immediately pulled it together while Chris handed me a tissue & tried to distract Kaylee. The Dr said “We are sending y’all upstairs to the lab, so Kaylee can get an x-ray of her chest to make sure there is no fluid in her lungs. You can head home after that.” She isn’t doing all day chemo today. That will be next Friday. You will need to keep giving her the chemo injections this week, as well as the liquid chemo by mouth.” Also, don’t forget we had to give her a flu shot while she was sedated like we discussed, so she will probably have flu-like symptoms and feel pretty crummy this weekend. :<
We headed upstairs to meet the X-ray technician, and soon as we got in the big x-ray room, K lost it again. Obviously Chris and I had to put on a lead vest (which freaked Kaylee out even more.) We had to lay her down on a hard white table, put a baby version of the lead vest on her lower abdomen ,and(this part kills me too) Chris had to hold her legs down, and I had to pin down her arms straight up by her ears. Kaylee was crying and screaming “ALL DONE??? ALL DONEEEEE?” and doing everything possible to get loose and my heart was breaking into a thousand pieces each time the X-ray technician said “She didn’t hold still long enough, we have to try again!” (AHHHHHH!!!!!) By the time we finally got the ok, Chris scooped her up in his arms, and we couldn’t get out of the clinic fast enough! Our nerves were shot, we were drained, and poor Kaylee finally calmed down by the time we got to our car. I sat in the backseat with her, and fed her some of her sandwich I had made that morning until she fell asleep, while Chris drove us home.
Once we got home she was still asleep, so Chris quietly got her out of her car seat & carried her upstairs to her room and laid her in my lap to rock her back to sleep.
Silver lining of the day: When K woke up from her nap, I gave her the rest of her lunch (which she ate) and she went to her playroom to play with her toys! I was watching her in shock that she was acting like the horrible morning had never happened. She was coloring, playing with her music toys and pushing her baby stroller around the house! Chris came home from work and I said “come check this out!” She did really well for the remainder of the day, and although she didn’t eat much for dinner, she had fun during bath time, loved story time and (praise God) slept all night long!! J We actually got a bit of sleep!
Things to pray for this week: That we will find some way to make these chemo injections easier. It is hard for us to do and causes Kaylee a ton of anxiety and stress. Please pray that the side effects from the chemo we have to give her is minimal; that she will continue to eat & sleep better (not sleeping well already tonight.) We are praying that what we went through on Friday NEVER happens again. Once in a lifetime is frightening enough! Kaylee also has to get another complete blood workup on Wednesday, so please pray that she is calm for that. We are praying for complete healing & that this coming Friday will be much easier on her. We will find out on Friday if she will need any transfusions (blood or platelets), so we are praying that her blood counts will be stable enough not to need those. Thank you all for your constant prayers for Kaylee and our family! We are so very thankful the PRAY4K shirts are still selling which help us with the cost of K’s care. Thank you for reading the blog and keeping up with updates on our daughter! She needs every prayer she can get, so please continue sharing her story!
Praying everyone has a great week!
Jeremiah 29:11~ “For I know the plans I have for you” says the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”