A Little Iron

The results came back from Lily’s bloodwork and we just need to add a little iron to her diet to to deal with her anemia, so the hospital ordered a multivitamin with iron.

Also, we have another day of antibiotics, and that is officially the last thing that will need to be done before they can take out the I.V. and wheel us next door. We’ve had a great experience at Johns Hopkins, but are eager to move on to the next stage of recovery.

I think we have worked are way through all of the nurses named Elizabeth on this unit. 🙂 We had an Elizabeth last night, and the double team of Liz and Lizzy today (but only until 3pm). Then Sara took over, who accent and passion for scrapbooking reminds me of a certain someone back home. 🙂

But enough about the dayshift nurses, the nightshift nurses have been great too. The night shift nurses are a little more elusive, but I did manage to snap a picture of one 🙂

Nurse Jen and Lily

Tomorrow’s lunchtime post will be coming to you from next door at Kennedy Kreiger! Signing off from RMH Baltimore


Just replace the word “Thunderbirds”with “Kennedy Krieger”

We have been approved to transfer to KKI either today or tomorrow! The timing will depend on Lily. Ortho stopped by and removed the wound vac. I was out of the room at the time, but the surgeon said the incision looked great. I've noticed that she has been really sleepy yesterday and today even after a good nights rest, so they are going check her hemoglobin levels to see if she is anemic. If she is they may transfuse, but more likely just add an iron supplement. Either way, KKI wanted that sorted out before we head over.

Thanks to everyone at JHH, KKI, and at the insurance company who worked together to get this approved. Also thanks to you dear reader for wailing and gnashing your teeth along with us 🙂


Nurse Jenn and Lily

Lily is spending another night at Hopkins. I wasn't able to get any useful information from any of the involved parties so we will just have to wait to see what tomorrow brings on this front.

While I am frustrated with insurance nonsense I am happy with Lily's progress. Her lungs seemed to have cleared up, we are getting closer to our pre-op feeding schedule, and she is be tolerating her wheelchair for longer periods of time. Still dealing with the wound vac, but that isn't scheduled to come off until right before discharge. (The noises that thing can make!)

The doctor did mention something to me about the possibility of an undiagnosed sleep apnea (lol, my iPad just suggested “panda” for “apnea”) – but it has not been observed since she was taken off the narcotics. I was hoping that was something we could explore at KKI, but who knows.

It seemed like Lily spent most of the day sleeping. Her vitals looked good, so I'm think it was just her body working to repair itself that made her so sleepy. Today's awesome nurse was Jenn. She has worked 3 shifts with Lily as one of her patients and was really hoping to be the one to send her off to KKI. One lesson we have learned in the last three and half years is what a difference a good nurse can make, and every nurse we have worked with at Hopkins has been excellent. It makes it easier to leave the hospital at night knowing she is in such capable hands.

Jenn found a tape measure for me today so we tried to get a new height for Lily. This isn't offical, but based on my measurements she grew 10 centimeters on the operating table (that's almost 4 inches!) Will have to wait for the certified results, but “Wow!”

Surprised to find out how much she grew!

That's all for now. Signing off from RMH Baltimore.



No rehab, whaa?

At the time of this post the insurance company has denied our request for rehab at KKI.

This occurs so often with them that I think it must just be part of their playbook. Waiting for JHH to set up a “Peer to Peer” – where our doctor calls their doctor.

If the insurance doctor was really a peer to our doctor why aren’t they practicing medicine and instead of being an accountant?

Feeling frustrated…


Before and After

Before and After

What a difference a week makes!

Today marks one week since Lily's surgery, and she is making great progress. She had another good night last night and we are making headway on getting her feeding schedule back to normal. Also, she is no longer on contact isolation! Which means we don't have to gown and glove up just to say “Hi”.

The plan today was to finish packing up and head over to KKI, but we've run into a snag waiting for the insurance company to approve admission to KKI. (You would have thought they would have had it worked out before today) So we are in a bit of a holding pattern for now. I will let you know where we end up with tonight's update.

Signing off from Bloomburg 10 South.


one thumb Todd

I had to use my other thumb to take the photo

Who has two thumbs and is packing up Lily’s room? That’s right – this guy. Lily is going to be heading over to Kennedy Krieger some time tomorrow! They removed the pain pump earlier this morning and added an order for oxycotin p.r.n. (That’s nurse speak for “as needed” – link provided for the curious) But she seems to be managing well with just Tylenol so we have not used it yet.

We are still not back to our normal eating schedule, but hopefully that will work it’s self out once we get moving over at KKI.

Today, In addition to our primary nurse Jenn we had a student nurse also assigned to Lily so there was always someone available to help us with whatever we needed. Of course we also had visits from the hospitalist, pain management and orthropedics team, so it seemed like someone was always stopping by 🙂

The last thing that will need to be removed before we leave JHH will be the wound vacumn. This device creates a field of low pressure surrounding the incision – the current research shows that this increases the rate of healing while reducing the chances for developing post-operative infection. So I am glad that they are using it, but will be even glad when they can take it off. That’s all for now.

To help keep everyone informed in a more timely fashion I am going to try to write two updates a day so look for the next one tomorrow around lunch time. Signing off from RMH Baltimore.



Rick and Ginger Glass

Rick and Ginger Glass

Hello everyone, I’m back at the Ronald McDonald house grabbing a bite to eat before going to bed. Lily had a good day today and we are on track for transferring to Kennedy Krieger this week (maybe even as soon as Tuesday!).

My mom and dad came down for a visit, dropped off a few items and took Melissa back home. I’m going to to miss her and already can’t wait for her and Bryce to come down next weekend.

In addition to my parents, we also had a visit with Rick and Ginger Glass. It was so nice of them to come down to visit us! I hope I didn’t gross them out by showing them Lily’s X-rays. 🙂 (I will post them if I can get a good photograph).

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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