Lily is getting settled back in at home. She didn’t sleep well last night. We think it had to do with the tummy issues she’s been having. Once she did her business she fell asleep and was out for most of the morning. She rested until lunch time and then got up into her stander for a bit. We’re trying to get back into her “home” routine as much as possible. She is starting back on Ritalin today, which is a drug used for people with ADHD, but in people with brain injuries it has been shown to help with alertness. We’re hoping to see some good changes from this.

Todd and I were able to attend church today for the first time since Lily’s surgery. It had only been a few weeks since we were at church but it seemed like forever. I really missed our church family and was so glad to be back. We’re hoping that Lily will be able to come with us again within the next few weeks. We’re very grateful to the Wetzels, the Bitners, the Jennings, the Houcks, the Masts, the Weavers, Deirdre Frauman, Kathryn Fournier, and Jenine Nicholas for the yummy meals they provided for us!

Thanks for your prayers and love!

 

 

Home again, home again, jiggity jig! Todd and Lily came home today!! I am so glad they’re back! I snuggled Lily for awhile and then we caught up on Once Upon a Time together. She is now sleeping in her own bed. I think Todd is happy to be home, but needs to be “reintegrated into society” after being in the hospital/rehab with Lily for 12 or so hours a day. 😉 It is a tough gig and I remember how hard those days were when I was there with her three years ago.

We would like to thank everyone again for the cards, donations, gifts, visits and meals we received these past few weeks. We are so grateful to everyone who supported us in some way! It was a huge blessing!

I am taking Bryce to his first MMA (mixed martial arts) competition tomorrow! I’m excited to watch him compete. He really loves MMA and he’s pumped for this!

Thanks again for the love and support! xoxo

 

 

 

 

Lily had another good day today. When we arrived at her room this morning, she looked very awake and alert and even gave us a few smiles! 🙂 She looked wonderful. Her bowel issues are getting better, and the doctors even cleared her to start getting formula again (very slowly at first). We had a good day spending time with her in her room. However, she has a very mild case of pnumonia, which she may have gotten through a combination of aspiration and/or lying in bed. She has not had a fever but the respiratory therapist heard a little something in her lungs. She is still on some antiobiotics, and combined with breathing treatments, this should be taken care of soon.

I am sad because I have to head home tomorrow so I can go back to work on Monday. I know I am going to miss my baby girl. It'll be hard for me not to be with her, especially because last time we were here I stayed with her full time. But, her dad will be with her and he will do a great job! Besides, I do miss Bryce TONS and can't wait to see him again. I'm sure he doesn't miss us very much, though. 😉 I also miss my doggie and cats! Can't wait to snuggle them all!

Thank you all for your continued support and prayers. Much love from our family!

 

This evening, Dr. Gans, the ortho resident, removed the drain from Lily’s incision, which is great! This will enable them to eliminate two of the antibiotics she is on at the moment. Yay! One less tube attached to her! 🙂 Today was a good day!!

I am usually not one for “signs,” but today there were two signs of Lily that encouraged me that things were getting better for her and that she is such a fighter. One was a beautiful butterfly bench in the courtyard, and one was a bouquet of lilies in the hospital chapel. It was just a reminder to me that she is always in my heart and I love her more than anything!!

Here is Lily with her awesome nurse from today, Rachael!

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Lily is having a much better day today. She “went” which is great! YAY for poop! 🙂 I think that alone has made her feel better. She is also off supplemental O2 and is just breathing normally now! YAY for air! 🙂 The team is starting on small amounts of Pedialyte for now and if she tolerates that well, they will start on her regular formula tomorrow. They are running it in very slowly at the moment to make sure she does well with it.

She's sitting up in bed now watching TV with her Dad. 🙂 She is still pretty tired and worn out, but that is to be expected. This was pretty major surgery and it's going to take her little body some time to recover. The team thinks she will be at JHH until Tuesday, and then transfer to KKI for rehab for 2-4 weeks.

The photo to the left is a miniature of the Christus Consolator statue that is found in the rotunda of Johns Hopkins. When Lily was at KKI in 2011, I visited the statue a few times to pray, and I left her picture at the foot of the statue as many others had done. The statue is about 10.5 feet tall and is awe-inspiring when you see it in person! I saw the miniature in the gift shop and had to have one. If you ever come to JHH for any reason, you need to make a special visit to the statue. It is beautiful.

I can't believe it's Friday already. This week has been one long blur. I have had to remind myself of what day it is several times since Tuesday. I honestly cannot keep track of the days. But, there is nowhere else I would rather be than with my supergirl! I know I won't want to leave her on Sunday. 🙁 But, her Dad is awesome and will be by her side when she is transferred to KKI and he'll cheer her on during rehab.

Thank you all again for the support and prayers! They are working! 🙂

Much love to all of you! xoxo

 

 

 

 

We have just returned to the RMH after a long day of being with Lily at the hospital. As Todd mentioned earlier, she had a rough morning today. She slept fairly well, but early this morning her oxygen level dropped and she had to be put on oxygen. She also threw up quite a bit. The team has stopped her formula temporarily and she is only on IV fluids for now until they figure out what is going on. She was pretty sleepy for most of the morning, though.

She also hasn't had a BM (sorry, I know this is TMI) since before the surgery, so the team has been taking steps to make that happen. She was given a suppository (which didn't work) and then an enema (which worked–but only a little bit). They are contemplating what to do if this does not happen soon.

We got her up in her chair again for about three hours today and she did great! This was the first time I had seen her in her chair since her surgery and I was amazed at how TALL she looks now!! I just couldn't believe how much straighter and taller she is. She looked WONDERFUL!! She tolerated the chair very well until she got tired and then we put her back in bed. Being upright as much as she will tolerate is the best thing for her right now. This helps her lung and intestinal functions, and will help start to increase her stamina.

The team did x-rays of her stomach and chest this morning. They wanted to see if she had aspirated anything since she had vomited this morning. They also wanted to check her tummy to see if there was any obstruction happening which would cause her not to be able to “go.” Her chest x-ray showed a little something on it, but they are not too concerned about it because she is already being treated with broad-spectrum anti-biotics and that should take care of it. The only thing they found on the tummy x-ray was that part of her bowel is “asleep” at the moment. They used a medical term for it which I can't rememeber right now. They said this happens sometimes after a major surgery and that time is the only thing that will “wake it back up” again. Meanwhile, they will still try methods to help her “go.” Poor baby. I could tell that this was bothering her today, but nothing seemed to help. Hopefully we will have some better news tomorrow morning.

I just want to give a shout out to our awesome nursing team here! They have all been fantastic, but today's nurse, Emily, was amazing! She was so proactive in communicating with us everything that was going on “behind the scenes” with Lily's team, when they thought they would have answers about things, why they didn't have answers yet, and making sure that all the tests, meds, and procedures she wanted to have done today were DONE. She was such an advocate for Lily today for so many things. We couldn't thank her enough for being so proactive and detailed! Thank you, Emily!!

Acutally, Lily's whole team has been pretty awesome. We are truly in the best possible hands here. And the building is phenomenal! All private rooms–and it is so quiet on Lily's floor. You hardly even hear any of the other patients on her hall. It is a beautiful, sparkling building and is about as comfortable as you can get in a children's hospital.

When we left Lily tonight, she was just about asleep. I am praying for a peaceful night's sleep for her and for her tummy issues to be resolved soon! She is such a fighter and so tough, but I know that she gets tired and can't be strong all the time. I told her I would be strong for her if she can't be.

Fortunately, there were leftovers from tonight's dinner at the RMH, so Todd and I ate that for dinner when we returned. It is so nice to have homemade meals here instead of eating out. We are so grateful for the groups that volunteer their time to make meals here.

We are going to try to get some sleep ourselves. Thank you all for your continued support and prayers.

Much love!

Melissa, Todd, and Lily

Lily’s team was just here to do rounds. Dr. Sponseller seemed very pleased with how she is doing and said she can move to the step-down unit today as soon as they can have a room ready!! Yay Lily!!

She had an OK night. The nurse increased her pain meds just a bit and put them on continuous delivery because we agreed that she was uncomfortable. However, everything else looks great, so we are being kicked out of PICU!! 🙂

I stayed with Lily last night and it was a rough night for me. The couch I slept on was sooooo uncomfortable! Todd and I will be trading off later this morning and I’ll go back to RMH to sleep. In a bed. 🙂

One last post before I officially collapse for the night. Lily is doing fine in the PICU. She is on a steady but small dose of hydromorphone for pain. She is also receiving Tylenol intermittently. Her nurse came in a little while ago and said she has no movement restrictions so PT and OT will probably be here tomorrow to get her up in her chair and maybe do some other work with her. She also said they expect her to “fly out of here” to the PACU by sometime tomorrow. This is all great news!
Todd and I got to go out for a quick dinner after we checked into the RMH. We ate at this great place called Ale Mary’s and it was just what we needed. It was good to get out of the hospital after a very long day.

I am spending the night here. I wish more than anything that I could snuggle up in bed next to Lily, but she has so many tubes and wires attached to her at the moment. I want to make everything all better and comfort her. All I can do is sit by her side and rub her head. She is so tough and brave and I love her so much!!

Thank you all for the prayers, love, and support today. It means the world to is to know we are being lifted up on your prayers. God is gracious and answered our prayers for a smooth surgery and best possible outcome. I thank him for giving me the strength to make it through the day.

Until tomorrow–goodnight from Lily and me!!