Thursday, May 26, 2011

Late update

It's late and I'm tired but I feel compelled to write an update before I forget my thoughts.
I am thankful for my family, for Don, my mom and my kids, my brothers and sisters and nieces and friends. All the kids have been very concerned. AJ and Steph have come up every day, Carter has called. Alika even spent the night with me and Sean at the hospital last night. She said it was easier than staying home worrying about him.


Sean had an alright night last night. He had a couple of half hour coughing fits and they had to turn up his oxygen but other than it wasn't bad. This morning he woke up and was miserable. They had a hard time getting his blood draw this am. It is so strange and sad to me how quickly he has adapted to being sick. "I don't want another poke." He adjust his own oxygen cannula in his nose when it's bothering him and gets frustrated with all the leads and wires. He put his oxygen tubing behind his head instead of under his neck because it's more comfortable. He has learned so fast. He can't make it to the bathroom in time because by the time I've unhooked enough equipment to get him to the bathroom he's already going. Mostly he's been to sick to get out of bed. Tonight he wanted to use the toilet so I had him pee in a urinal he thought that was kind of cool.

I've thought about having someone give Sean a blessing. It will come as no surprise that I have had many offers from family and friends but have just said that I would think about it. This morning I was "thinking about it" but didn't do anything about it.
Around 9 this morning we took Sean down to x-ray in the wagon. He thought that was different and almost smiled. I saw Lou Borgenict one of my pediatricians from SLRMC on the way. After the X-ray Sean was very upset and I was carrying him. We were walking down the hall and I thought I saw David (Ryder's dad) pass in front of me. I said "David" and he didn't turn around but he paused. I thought maybe it wasn't really him but I said "David" again and he turned around and looked confused, who is that crazed looking woman holding a sick kid and why is she talking to me?  Then he realized who I was and came over and asked what was wrong. I told him Sean was really sick and asked if he would come up and some point and give him a blessing and he said he would come right now. He walked up to Sean's room with us and gave him a blessing. All who know me know I am not an overly religious person and I don't go to church but some of those Mormon faiths remain and blessings is one of them I don't know why I asked David, it was like the words came out of my mouth before my brain even thought them. He gave a very special blessing that I don't think anyone else could have given because he really knows our story. It meant a lot to me and was very special. After he left Alika asked if he was a minister and I said no, he just a Mormon dude, an Elder. (Could be a high priest I have no idea). Alika asked "Mormons just carry around oil in their pockets in case someone comes up and says "give me a blessing?" I said, pretty much especially ones that work in hospitals. His blessing was more than just about Sean's health it was about Sean's life and we needed that.
Sean has liked having Alika around in the hospital. Tonight after everyone left and it was just me and him he was very upset and wanted to go home. He is well enough to miss home before he was too sick to care where he was. Tonight his IV infiltrated and the IV team had to start a new one. It took the four sticks and Sean was screaming "no more pokes, your hurting me." I was holding him and it made me cry. Don was sitting in a chair crying. Yesterday when the doctor was telling me how sick he was and that he could have died I was crying. I was holding Sean and he had his face in my neck and I was sobbing. Alika was sitting in a chair sobbing. Sean said "STOP IT!" I said "stop what?" and he said going "hu hu hu."(Making crying noises). He said "you're making me sicker." That made me laugh but he told me I couldn't do that either.

Jenny and Ryan have both been up. They were appropriate and pleasant. They smelled so bad though. Jenny came up yesterday with her friend Crisitn and her mother who is a heroin addict. They were so pitiful. So ignorant, and smelly but also very concerned and sincere. I don't mean to sound so critical of them but I was just thinking thank God that they are not Sean's life. It was the same when Ryan came. I appreciate the love and concern they feel for Sean but am glad he lives in our world and only "See's" there's and it's not his. I know I'm not articulating this well but I felt like I was watching a movie of parallel lives and seeing what Sean's life could be or would be. I'm not saying we are the perfect family because I know we are not but I really believe we are the perfect family for Sean. He is such a member of our family that thinking about him dying is just intolerable. I am so thankful that he has turned a good corner today and especially this evening.
My final picture for the evening is Sean actually smiling!!!! Medicine is wonderful. A little boy who 48 hours ago was in septic shock and they didn't know if he would live is already smiling. Thank you clindamycin and claforin. And especially thank you to the doctors, nurses and tech's at Primary Children's they have been wonderful. On that note the nurse in the ER said "you look familiar." She was one of my students over 10 years ago. Four of our nurses on the floor are my former students. I feel a sense of pride in having hopefully made a positive impact on all these terrific nurses who are taking care of my biscuit.
Ok so that wasn't my final picture of the night. This one is.
This morning I was listening to the doctors rounding out in the hall and talking about Sean. They were discussing all the possible differential diagnosis for bilateral multi focal pneumonia's, legionnaires disease, mycoplasma. I wanted to yell out "hey don't forget the pneumonic plague." His x-ray looked considerably worse today than yesterday but the attending Dr. Fassl who is wonderful said that he wasn't concerned with the CXR so much as how he was acting and his WBC and CRP. The CRP had cut in half so they don't know if it's the Clindamycin that made the difference or it was a coincidence. I'm not willing to take the risk that it was a coincidence and stop it and neither is anyone else. The question now is when will his oxygen need be decreased enough that we can take home with or without oxygen and what medications do we take him home on and do we do them PO or IV. Decisions, decisions.
I don't know if anyone is really reading all the way through this but if you are thank you for your concern and prayers you are all appreciated.

3 comments:

Jaclyn said...

Thank you for the update. I have checked your blog and FB at least ten times today hoping for an update. I'm so glad he is making some improvements. That boy will get better soon and be home with the family that loves him to pieces soon. He may have been born of Jenny and Ryan but he is ours now and we all love him. I know that for me personally I am just as upset and worried about him as I would be about one of Catherines boys. Sean is lucky to have your family but we are all lucky to have him in our lives. I'm thankful he was able to have a blessing for his sake and yours. The Lord grants us tender mercies in our time of need and he gave you one today by sending David to bless Sean. The Lord is aware of the smallest sparrow and he is certainly aware of Sean (and you). Please keep us updated with anything you can. The girls and I have been talking a lot about cousin Seaners as they call him and we are waiting in the wings to help in any way we can. We send our love and prayers to all of you.

Stephanie-jean Life:SemiCrunchy said...

I am with Jac! Sean means so very much to our family! I remember crying in the ER and hospital room with Sean when he had RSV and how hard that was. I remember looking at Jenny and Ryan and wanting to slap them silly because I could tell that sadly, I loved this little boy more than they did. I am glad that David was able to be in the right place at the right time. I am sure that he was there for a reason. I am thankful for the priesthood blessings that I have received and that my babies have received. Dan asked just the other night if Sean had received a blessing, I told him I honestly didn't know, but that you would do it when the time was right. Glad that you did. Sean is such an important part of our lives and I, like you, cannot imagine it without him. We sure do miss getting to see him and all of you. Nate sends his love and spit faces :)

Anonymous said...

This post made me cry (not hard to do lately, especially concerning Sean). So glad David was there, and glad you asked. I am also so so so happy that neither Sean nor Ryder have to live in Jenny and Ryan's world. Hallelujah for that. I still lay awake some nights worrying about Ryder's sisters and wondering if we made the right choice, but I love that I never worry about Sean (well, except for him being sick, you know what I mean!).
Thanks for being such a good example to me of the kind of mommy I want to be. We'll keep praying for Sean and all of you, glad things are looking up!

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