The night was rough. She didn't sleep well and kept requesting things that were not available. She screamed for 20 min straight for a Cafe Rio salad... the burrito was not cutting it at 2:30 am.
Not really the day I was hoping for. Awaiting good news from the blood cultures. Pumping her full of antibiotics, trying to entertain and keep the girl happy. She made requests all day long for all sorts of things (Cafe Rio, Pizza Factory & breadsticks..pizza with the little brown things, chips and guac, sprite). She was not afraid to demand it from anyone and she expected it right then no matter the time. Dr. Nygard came in and informed me that we would probably be here until Tue. The peripheral blood draw came back negative which meant the infection is probably in her port. I didn't fully understand what that meant. Everyone left to get things done/in order and I was waiting for Slade to come so I could feed him. Nygard came in and broke the news. They wanted me at PCMC as quickly as possible so they could remove her port due to the infection. They also wanted me to go by ambulance. I was shocked and said I didn't want to go my ambulance again. That was traumatizing and not the best experience. She hadn't fevered for 3 days and her vitals were fine. I couldn't believe it. Another thing gone wrong. Feeling really unlucky and bummed about everything. I didn't want to refuse the ambulance but basically said that I DID NOT want to go that way. I asked if it would make a difference if my dad went with us... they said no because even though he is a doctor he doesn't have all of the supplies. Not sure what they bargained, but gave us the blessing to go by car. I was stressed and crushed. I didn't know what to do with Slade. I feel like I have hardly seen him for the past 2 weeks. I am nursing him and that always adds the extra challenge. It is also a challenge to have him at PCMC because he wants to get down and play and that is difficult when you are dealing with a sick 2 1/2 year old. The Stevensons offered to keep him while my mom came with me to PCMC. We got everything arranged and bags quickly packed. Slade came so I could feed him one last time before I left. As we got in the car Taleah said, "That hospital was fun, but I like Primary Children's better." Little did she know that was where we were going.
The drive was ok. She slept for about 3 hours of the 4 1/2. That was helpful. I tried to sleep to gear up for the next few days, but only slept one hour. My mom and dad followed behind us.It was POURING rain and I felt like that just added to my anger. We arrived to PCMC and a flood of emotions hit me. It feels all too fresh... because it is. We are settled and awaiting the info/time for surgery. Fasting again.... on steroids. TORTURE! She will be an add on so there is no telling when we will go. But we have to be prepared and fast for the earliest time possible. TORTURE! This whole hospital will be awake tonight. I am sure of it!
My feelings are all over the place. I am pretty mad and upset. All of the "9 out of 10" things....keep being the "1 out of 10" for us. It sounds terrible to say but I feel like with all of the prayers in her behalf... that these things shouldn't be happening. I know that is not the way it works. I know things could be worse. Just doesn't seem right. Was it something I could have prevented? She has already gone through so much in 2 weeks. Her whole world has changed and been flipped upside down. Should she have to have added obstacles? Should she have to endure additional suffering? I don't think so. This is a lot to go through for lessons and growth. I must really need to grow and learn. Wish I could do it another way. I don't have the best feelings tonight. I don't want to even think about what the next few days will bring. PRAYING for good news tomorrow or some positive something for Taleah. Side note... We received blessings from Scott. They were very sweet and helped a little. Still anxious/nervous/scared.
Wish I could take this from her. So much!
Tosha, this post breaks my heart. I can't even comprehend, as a mother, what you must be feeling and it's ok to feel all these things. The lord will guide you through this but it only makes you human to want your baby to heal quickly and painlessly. I wish you the best of news in the morning and hope to hear the good news soon. Prayers and lots of them!
ReplyDeleteTosha, im so sorry this is happening to your little girl... i can't even imagine. we've been keeping you in our prayers. i hope things start to look up from here on out. I'm so grateful your so open with this and are willing to share all of your feelings, I'm sure its not easy and not something you really want to do . but i like to hear how things are going and pray that your family gets comforted knowing everything is in the Lords hands and i see you know this. i hope you have good news when you wake and pray you and your little taleah get a good nights rest.
ReplyDeleteIt's so hard seeing the big picture when you are stuck in the middle of it. It's tough being the odd man out over and over again. I wish you a good night full of rest and good news for tomorrow. We love you!
ReplyDeleteTosh im so sorry. Im sure ur sick of hearing that by now from everyone being that it doesn't or can't help but really I am. I can't imagine one hour in ir shoes with what you guys are going through...im sure id be upset to wondering how much more has to happen. Its so hard because we don't know why or understand why this has to happen. In times like this im sure its so easy to loose faith or at least question it but hang in there and have faith that things will work out. I hope u both can get a goodnights rest and all goes well tomorrow and u can get rid if this nasty infection so you can focus on one thing at a time...thinking of you guys and wishing u the best!
ReplyDeleteWhen our son had leukemia his port became infected too and had to be replaced. They said it's actually quite common, esp. when they are quick to put in the port too soon, when the white count is still too low.With his infection his temp shot to 104F and he was shivering and sleepy. After the port was removed and antibiotics given and a new port surgically placed he got better and the second port lasted for the remainder of his treatment.We are also just like you; the "Murphy's Law" family; the unlucky 1/10, rare reaction, exception, unusual statistic, unlucky, one-out-of-a-million and I know, it really SUCKS!!I feel we're cursed!
ReplyDeleteOh Tosh - I love you so much and my heart breaks for you guys over everything that is going on. Don't forget our motto: "I can do hard things, I can do hard things!" I actually found the talk I was telling you about where Sis. Dalton shared this motto. And she stated that she would actually change her plaque to say, "In the strength of the Lord, I can do ALL things!" And I know you can too!
ReplyDeleteSatan wants nothing more than to let this horrible trial in your life destroy you, destroy your faith, destroy the beautiful family you and Scott have created. He will fuel that anger as long as he can to accomplish this. Fight Tosh fight! :) You are a great mom with so much love to give that beautiful little girl. Let her see your faith too. You have an amazing support system. Don't let Satan tear you down. Maybe it would be therapeutic to write a blog entry that only discusses the many small and large blessings that have come during the past two weeks. I know that the many prayers being offered in your behalf are being heard and that the Lord can give you the comfort you desire.
Again, I am so sad that these things are happening. I wish I could remove some of the burden from you. I wish I could give you a full night's sleep. I wish I could promise that there will be no more bumps in the road. I can't. But I can promise to never cease in our prayers and love. And I hope so deeply that you can feel that this message is written in love. I hope it isn't coming across in a preachy manner. I just love my family and hate to see you hurting so deeply. Love you. Please let me know if there is anything I can do.
You don't know me, but I started following your blog after I saw a link from your husband's cousin's blog (Annie Squire). I want you to know how heartbroken I am for your situation, and I have been reading every day and following your rollercoaster of feelings & experiences. I can feel the love you have for your daughter, and I can't imagine how difficult this must be for you & your family. I will continue checking in to follow sweet Taleah's progress. I'll pray for good things for your family!
ReplyDelete--Corie