Thursday through Saturday

My how time flies…even when you aren’t having fun. My last post was on Wednesday. Thursday we had a few friends over. One dear friend used to be a NICU nurse. I mentioned to her about him sounding like he has a dry cough. She listened for a moment and told me she didn’t think it was a cough. It sounded more like a grunt, similar to newborn babies. I had a brief flashback to right after he was born. He was taken to the nursery for 14 hours after birth due to a fast heart rate, not maintaining body temperature, and grunting.

Our pediatrician called a few minutes later checking in on Logan. I shared our friends thoughts and was able to put the phone close to Logan for her to hear. She agreed it sounded like grunting and was most likely due to air hunger (difficulty breathing). The oxygen doesn’t make the situation worse or better. From my understanding there is nothing that can “fix” this, so we were given the ok to put him on a 4 hour schedule of morphine. We also added Ativan (anti-anxiety) back in and dropped Gabapentin (nerve pain).

Friday and Saturday were pretty status quo. Logan slept 23+ hours. I struggled with the decision to do an enema on Saturday, but so glad our nurse was here and helped me with it. Our poor baby…sigh. His stomach seemed much better afterwards though. Not so distended. I also started struggling with how quickly everything happened. He was fine of Monday and then has slept since Tuesday. Its just heart breaking. We spoke with our palliative care doctor. It was a rather painful conversation…one I’d rather not relive and hope is wrong :/

Oooo! Something exciting did happen yesterday! Logan was sleeping and Lucas wanted to read to him. We didn’t think much of it since he has been sleeping so much and nothing seems to wake him. So Lucas sits down, starts reading to him and guess who opens their eyes! He wasn’t fully with us, but he did have open eyes looking at the book. Then before Logan and I went to bed (we are camping out on the couch 🙂 ) he opened his eyes again. There wasn’t much emotion behind them, but they were open and the most beautiful color of hazel.

Today was a good day. However, I need to gather my thoughts about it before I post anything. Hopefully after speaking to our Hospice nurse tomorrow I will have more clarity on the situation.
2013-05-04 13.22.32 2013-05-04 13.22.51 2013-05-04 23.14.23

19 thoughts on “Thursday through Saturday

  1. Thank you for sparing precious time with us! Believe that “the boss” is listening… :). Your words, words from big brother and daddy has to bring him joy! :). Your Ohana (family) are in my thoughts everyday, love each other, stay strong, and much love and aloha and blessings for “the bossman” 🙂

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  2. Angels are watching over all of you and there to comfort you. I am sorry you have to give Logan more meds, but glad to know that the morphine should take care of any pain he may be having. This is such a tender time. Hugs from CA.

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  3. I am Helen Collier’s aunt, I just want you to know that you dear people have my sister’s & my prayers. God Bless all of you for all the love that Logan is receiving from you.

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  4. It is so beautiful to see Lucas with Logan reading him books. And the photo of you and him almost nose to nose – so lovely!
    I am sending lots of love and good vibes to Logan from Colorado!

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  5. Your such an ANGEL.. I read this& just cry.. I can’t even begin to imagine your pain… xoxoxo My thoughts& prayers are with you&your beautiful family;)

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  6. i read your most recent entry and my heart breaks for you all, this shouldn’t be happening. I looked at the pics and i couldn’t stop myself from crying. I’m so happy you all are able to get these pics of Logan and Lucas together, they and you will cherish them for the rest of your life. I’m praying for you all to have strength to get through this

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  7. Happy 10 months Logan! You’re in my thoughts everyday. Tia and Brett, you are more than wonderful parents, and Lucas is an awesome big brother! Much love to you Ruth family!

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  8. July 2012 BBC mama here- Tia, you and Logan, Lucas, and Brett are in my thoughts every single day. Every time I look at my July baby, I think of you looking at Logan. Thank you so much for taking the time to share him with all of us. It has to be hard to take the time to write all this stuff out, but just know that all of us who read it are appreciative. T&P, sweet mama. Happy birthday, Logan!! We’ve all got our green on today!!!

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  9. Please know that so many of us are lifting Logan and your family up daily in prayers. I had never heard of SMA until Rex Clark. I had the priviledge of meeting him in the hospital and fell in love just like we have fallen in love with Logan. I’m determined to help spread SMA awareness for Rex, Franklin, Charlotte, Connor, RJ, Wyatt, Ember, LOGAN and all SMA babies/kids. Stay strong Logan and happy 10 months to you!!!

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  10. Happy 10 month birthday, sweet baby boy! I think about and pray for your family frequently. Logan is so incredibly blessed to have you as a mommy. We were in Branson this past weekend and I remembered your recent post about going there – I was thinking about you guys nonstop when we were on the landing. My June 2012 baby loved looking at the fountains and ducks and I’m sure Logan loved it too. Keep hugging on that precious little boy! God Bless.

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  11. Another July 2012 BBC mama here. I just want to thank you for sharing your incredible mommy story with us. I hope you know that you and Logan are making better mothers out of many of us on the July 2012 board. The other day, when my dd was refusing to go to sleep, I said to her, “I just don’t have the patience.” Then I thought about sweet Logan and I realized, yes, I do have the patience. I know I will never forget Logan and everything the two of you have taught me. Happy 10 month birthday, Logan! I’m wearing green for you!

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  12. Thank you for sharing this update. My family is praying for you all and I have been thinking much of your precious boy. Stay strong Tia. You were chosen to be Logan and Lucas’ mommy and you are doing an outstanding job. God bless you and your family. Logan is an angel here on earth.

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