This weekend was a rough one. One I pray we never relive again. I will spare you all the horrible details and sum it up with that a second abdominal surgery within 2 weeks of the first major one + failed epidural + fever + respiratory troubles + spinal headache = HELL! Would not usually post such a harsh word but that may be putting the weekend lightly. I never thought I would ever see Charlie in worse pain than post transplant or even our worst bouts of pancreatitis. The last 3 days were undoubtedly our toughest to date. The good news is that because Charlie is SUPER AMAZING he really turned the corner today. He got out of the ICU this morning and is now back on the 5th floor. Earlier in the day he could hardly bear the pain to walk half way down the hall. Tonight he took Carter for a ride on the double trike! Never underestimate Charlie’s strength. He is one tough cookie! Other good news-Carter mastered riding his bike without training wheels today. The hold up was 100% due to poor parenting in that we never really worked on this before with Carter. The boys run everywhere-who needs bikes right?! This summer he really wanted to learn to ride his bike and because we have lived at the hospital this was postponed again. Today, he finally had a chance to try again and took off riding on the rooftop of our apartment. He is so excited! As are we! The staff here at U of M continues to take such good care of not only Charlie but our entire family! So much so that I even got a pair of pjs brought to me tonight! Both boys have become friends with several of the various team members at the hospital. They especially love playing with the child life team. There are more than just medical needs when your family resides in a hospital and the staff here does a good job of remembering that. Dr. C makes us feel as if he loves Charlie as much as if he were his own child. He was devastated to come out of the OR to tell us he had to open him back up. Said he was up all night thinking about how he could fix this problem without requiring surgery but the attempts were unsuccessful. It was devastating for all of us but like he told us “it is what it is and we just have to move forward.” We will continue to do that. I am not sure we would get through these days without the help of our families and the support from all of you! We had parents in town all weekend, my brother came to visit (turned more into babysitting Carter) and my Aunt Karen is here with us now. We are beyond blessed with the support we have! Thank you for the continued prayers for our family! Praying Charlie gets out of the hospital soon-maybe even before Carter’s next surgery on Friday! #Whoknowswhatdayitis #Whydon’tparentsgetmeds #ineedIVcaffeine #whoknewthatatrikecouldmakemyheartsohappy
Posted on: Wed, 17 Sep 2014 03:20:11 +0000
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