Parker...you're room is waiting

Remember last summer when we did this for the 4th time??? Well, this Friday Parker will be going in for his next EGD (#5) Friday morning to check his EOE. We'll also be checking on his fundoplication, since he's been complaining of some pain in his chest. So, we'll be checking in to Boys Town early. We'll follow up with both allergy and the GI doctors in a few weeks and see what final results are and where we go from here. I'm hoping for a quick day, some decent coffee and maybe a nap in the afternoon. If you've got extra happy thoughts or prayers and want to direct them for any of those things, we'd happily take them. An update to follow soon!

Parker's Next Round

As your making out your to-do lists for the week, if Wednesday is looking a little light for you, we'd love if prayers for Parker could get added to it. The little man will be going in for his latest Esophagogastroduodenoscopy with biopsies for his eosinophilic esophagitis - or an EGD for his EOE. Such big words for such a tiny boy! We've done his a handful of times before so I'm not worried, but I'm hoping for a quick day in and out. Boys Town is the place to send them, Wednesday morning is the time. We'll keep y'all updated. And thank you as always!

Parker New Years Update

I had taken New Years Eve off work to do fun stuff going on around town with the dynamic duo.After an appointment with the ENT 6 weeks ago, I found out this wasn't going to happen. Parker needed to have another procedure. Not only did I know this wasn't going to happen ahead of time...I had no idea how crazy the day would be.

Payton woke up at 2am that morning and refused to go back to sleep. She was sick and nailed herself, me, my hair, blankets, pillow, etc. One moment caused a huge mess. After getting her cleaned up, I had to take a shower at 2:30 am. The fridge broke around 4am with the water line for it spraying water on the kitchen counter and floor. Both kids were up at 4:30 am wanting to watch Chuggington. I had to stall Payton's requests for cereal because Parker wasn't allowed to have anything. When Parker and I went out to the car to head to the hospital, I discovered my car had been egged along with several others that were parked on the street. And the cup of coffee the hospital brought me upon arrival tasted like it had been sitting for 2 days.

Parker and I checked into Boys Town at 5:30 am so that he could have semi-permanent tubes placed in both ears. His others had fallen out and he was already having  problems and losing hearing. The ENT has also been watching several cysts in his airway behind his vocal chords for a while. They're from being on a ventilator for so long. He's been having some issues with his reactive airway so the doctor decided it was time for them to come out - by laser.

 Surgery went fine. Because of what they were doing with the airway and his normal self, he was put under pretty deep anesthesia. HE was in recovery quite a while before coming back to the room. Once the haze cleared a little we sat on the bed and played with balls and cars, the nurses brought him popsicles and Dr. Lusk let him look at pictures of planes on one of his several trips in the room to check on us. With a promise that I would call or go to the ER on the very off chance something weird happened above what I could manage at home, we got our discharge orders and were able to go home. I grabbed myself a special load of caffeine on the way home which didn't make much difference since I'd been up since 2am.

 A quiet night at home, take out to celebrate New Years and my birthday and everyone here was out pretty early. I settled into the recliner with some champagne, a piece of my lemon cake and one of my Christmas gifts.

Parker is doing just fine. He's been a little rough in the throat  this past week post-op but nothing major and is sounding better. We check in next week with the doctor and then will just be every few months after that to monitor things. It's been 3 procedures in 9 months, and 4 in just over a year, for the little man. Praying for a new year with fewer procedures and more good coffee.

Parker Procedure Update

Friday was another early morning for Parker and I at Boys Town. We've been on a routine of meds for his EE for several months (it's a little exhausting). The things with EE is you can't cure it, and there's no way to tell what it is that makes it worse or causes that allergic reaction. So that leaves us trying to find a medication regiment that will help alleviate those symptoms and make it easier for Parker to eat.

It's a drive but I absolutely love the West Boys Town hospital. It's a beautiful facility and the staff are absolutely wonderful. Parker and I got lucky and bumped up in the schedule by half an hour (Yay!) and things moved very quickly after we were admitted. Dr. Kunnath came in and we chatted, he played with Parker and sat on the bed to watch Mickey Mouse with him. I'm so grateful to have found a GI doctor this fantastic.

Once Parker was ready to roll, the Child Life Specialist came in and showed him the anesthesia mask, let him pick what color tape he wanted for his IV, and read a book with him. The in an effort to help Parker's giant tantrum I knew was coming when they took him back, she brought him a bubble gun. She told him to shoot bubbles at the doctors when they came in. He figured it out really quickly and started yelling "wook it!" to everyone that came in. They let him take it back to surgery with him, and he got to keep it until the moment we left. It made things a lot easier for him to go back to surgery.

Of course the anesthesiologist always comes in to talk before procedures. He came in and asked where he had had his previous major surgery (the fundo and g-button) at. When I responded it was at the Med Center, he immediately confirmed it had been with Dr. Abdessalam. When I said yes, he told me he had been in on that case and remembered us. He started saying details from the day (which I remember vividly), Parker's medical history, and us. I was floored. He gave me a very nice smile and said it was nice to see us again, it was a treat he doesn't usually have a chance at.

He carried Parker back to surgery in a blanket (holding the bubble gun) while singing him a song. 

He came back after the procedure to tell me everything had gone perfectly. He said "it's been a pleasure" when I got a big hug. When he walked out of the room he gave me a sweet smile, and I stood there stunned and started to cry a little. How lucky are we that the same sweet, gracious person can appear twice in life to help Parker - once to live, the other to thrive? (I still have tears thinking about it now). 

Parker's scope appeared normal. Now we wait for biopsy results - they took 6 samples - and a follow-up appointment with Dr. Hopp. Thanks for all for the prayers!

Payton...sans tonsils and adenoids

Payton was able to have surgery on Monday. Things went well. We did not have to be admitted which was a huge blessing. New tubes in both ears, tonsils and adenoids gone and a scope all done. We follow up in 2 weeks with the doctor. No complications, just a slightly cranky girl, who thinks that I'm putting lady bugs in here ears when we have to do her ear drops now.

Before...

 After...

Payton surgery update

Payton and I were at Boys Town early Monday morning for her procedures. After being checked in, doing all the paperwork, signing all the consents (which is about as much paper as buying a house I think) there was a sudden change in plans. She had a low grade temp when the nurse was doing her assessment. She went to get the doctor, who came in and his first words were "bummer". Yep.

Dr. Lusk and the anesthesiologist checked her out. They're calling her with a sinus infection and junk on her ridiculously large tonsils. That combined with the fever and already compromised lungs which could pose a risk, it was a no go. They sent us home.

We're on 10 days of antibiotics trying to clear her up enough to get things taken care of. We're back on the surgical schedule for July 9th. If you were one of the people offering up prayers, good vibes, sparkles, fairy dust, good juju or whatver else you might have for her. Please pencil her in on your calendar for the 9th.

The Latest

Things have been a little crazy so here's a few quick updates!

We met with the behavioral doctor at Boys Town to talk about their lack of sleeping. She gave us some things to do - including keeping a sleep diary, much later bedtimes, etc. Well, things haven't exactly worked as she had intended. Later bedtimes led to major behaviors (biting, hitting, throwing things) that they never do other wise, refusing to nap, meltdowns at mealtimes, etc. We go back to see her this week, so we'll let you know how it goes.

We had an appointment with Early Intervention this past Tuesday for speech therapy. Parker is coming on quick with the talking. So for now, we've officially been discharged from speech therapy. This means as of this moment we have been discharged from all therapies with Early Intervention. We can always call them if something else comes up, but for now we're done!

The babies have a new favorite game. It's a little like a modified version of Twister. We throw colored construction paper all over the floor. Then I call out a color and they run to each. They giggle the whole time! And it's great for them to work on their colors :)

Tubes

After a very long night, I was with Payton bright and early at 5:30 Monday morning at Boys Town Hospital for her to get tubes in both ears and a scope done. She did great. In fact, the anesthesia worked backwards and has actually made her crazy ever since. If you notice, the clock behind her says 5:40. We were already in her room and changed into her XS hospital jammies. She's checking out the little socks they gave her to wear too.



 If you've ever driven by Boys Town and seen the little round windows all over the building, they are in the patient rooms and you can sit in them. They are just Payton's size.

Her nurse was great, she even remembered us from last year when we were there twice with Parker. We were home early in the day. Her only problem was that she wanted to know where Bubba (her name for Parker) was. Daddy had taken him to respite care so that we could make sure we had things with her taken care of. Not a problem, everything came out fine. Now, let's hope its a while before she gets any more anesthesia.

The ENT

June 1st, Parker had another follow-up with the ENT for his 1st ER visit and to checkon his tubes and airway. I didn't know that 4 weeks later we would be back there with Payton.

Miss Payton has spent the past 7 months with persistent fluid in her ears. Every time we end up with the pediatrician she's on the verge of another infection if it's not already there. After her follow-up from her ER trip, the ped agreed it was time for her to go. With a little sweet talking I was able to get her in in 10 days. I got a little squeeze from the doctor when he came in (we're buddies now). They did a hearing test which she passed, but there is still fluid in both and a brewing infection in the left. He agreed, it's her turn for tubes. He will also look and see how her adnoids look and whether they need to come out as well. He's going to also review her chart and see what he thinks about doing a scope while she's under. They found cysts on Parker's airway when they did it to him from being on the vent for a long time and he may double check she doesn't have the same thing.

Scheduling called within a couple hours and we're on for July 25th at Boys Town. If I can just keep her well until then. :)