Visitors, Oddities, and Pleasant Surprises

Last night I was surprised with visitors in the lobby! Kylynn Maxwell and Teresa Lance Warner dropped in with a big box of cookies (the nurses loved them) and flowers. It was so fun to see them both! Lots of smiles through masks. Also, no bottled water in the cafeteria, just canned water. It was so odd to me I didn't think I could drink it. I didn't get any until I felt myself getting dehydrated. But it's just fine in the cup of ice I get each day. What will they think of next? I got a shower today and it was my lucky day. In with all the shampoo and conditioner bottles were Bath and Body works Coconut Lime Verbena, my favorite scent that was discontinued. It was so pleasant. I'm rambling. I am tired. I have no idea how I will get us home when it's time!!

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Mother Knows Best

Woke up to rounds and they wanted to send us home. Joseph hasn't eaten much and is having a lot of pain due to the abdominal muscles cramping when he moves. With a 3.5 hour drive home, I was nervous and the momma bear inside was furious. Good thing I'm very experienced at advocating. We decided one more night, which is still one night sooner than I was originally told. His muscles are finally relaxed and pain is under control. He's sleeping peacefully. We should be home tomorrow afternoon! Yay. It's exhausting having surgery and dealing with the pain. And it's exhausting being the mom to the one who is in pain. It will be so good to get home! Here's our bit of a view. I've always loved the mountains of Utah!

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Hospitals. Hmmm.

Hospital pillows are a lot like cotton candy. They look all fluffy, but smoosh down to nothing when you lay down on them. And never fails, head hits pillow, door opens and I'm back up again! And speaking of cotton candy, I forgot my brush and had to buy one from the gift shop. It's cotton candy scented. Except it's not and it's a terrible scent, but I have to use it because there is nothing else. But my hair sure looks...like I'm living in a hospital. Lol They have a lovely Ronald McDonald family room on our floor. Very little of it is accessible due to covid. But they are very kind and there are laundry facilities and a couple shower rooms open. The nap rooms are closed. I could use a quiet place right about now. There is a fully stocked kitchen and volunteers who will get you a snack. I really feel for parents who spend long stretches in hospitals with their kiddos. This area, when fully operational, is important to sanity! Everyone here is really nice. And I'm so grateful for the great care Joseph is getting. Modern medicine is literally a lifesaver!! Definitely worth a few nights away from our own beds to get Joseph healthy!

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Post Surgery Adventure

After a long night, Joseph is eating a bit,  drinking, and when the pain is in control he can stand! We just walked up the hall and back. I'm so proud of him! He has an amazing nurse during the day. She's very attentive and really listens to Joseph. His stomach muscles tighten when he moves too much, which has been very painful for him. The nurse brings hot packs whenever we ask. I think this part of recovery is harder then he expected, but he's not complaining. It's such an honor for me to be here with him making sure his needs are being met.

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No Sleep For Mom

Things I'm finding funny while Joseph sleeps his surgery away... 

The room we stayed in last night had a kitchenette with a stove and fridge and cabinets but not a single other thing. No mugs, utensils, cups, nothing. Not even a coffee maker. 

Joseph's surgeon is Dr Short. But he's pretty tall. 

Joseph's anesthesiologist is Dr Yawney. How appropriate! Oh I'm so tired!!!

Pre Loooong Nap

It's early. We are tired. I start to get nervous and I remind myself my sweet son is in the capable hands of a great surgeon. And more importantly he is in the hands of the Lord. That brings me peace. Joseph had a rough night and morning. He's looking forward to a long nap. Situations like these bring such complex emotions. Especially when they ask if I'm the only parent here with him. I shouldn't be, but I am. I worry if I am giving my son what he needs as he develops into a young man. But I'm here. And I always will be. Thank you for your kind words and your prayers. They uplift us and help us feel loved.

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Joseph and the ileocolectomy

Joseph goes in for surgery on Thursday. I'll be taking him to Primary Children's Hospital to have part of his colon removed as part of his fight against Crohns disease. Please keep him in your thoughts and prayers. We will be there until Monday or Tuesday of next week if all goes according to plan. Pray for me too, I'll be living at the hospital with him. JK, I'll be just fine. I love this kid so much!! :)

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MRI time

 At the radiologist, getting Joseph an mri. Looking to see how severe the damage is to part of his colon. Surgery coming soon. If they ever finish the mri. It's taking FOREVER!! Joseph is such a brave guy!!

Highlight of Joseph's Dr Appointments in Salt Lake City

On the way to our hotel we stop at Wheeler Farm. On the way out of town(usually the next day) we stop at Wheeler Farm. It is my children's happy place for sure!

First treatment

At the hospital for Joseph's first iv infusion. It's going to take a couple hours, but he is handling it so well! I am so proud of this kiddo, he's had a rough year, but he is still smiling!

Joseph Update

For those of you who have asked about Joseph, we saw the pediatric GI doc and he was told to add gluten back into his diet for a month. He will then go in to have an endoscopy done to see what kind of damage is happening due to the gluten. He was thrilled of course. Strange thing, he hasn't been having much in the way of a negative reaction, so its possible his system was just out of whack from his H. Pylori last winter. We are hoping and praying that is the case and that the endoscopy will show no damage.