Day 4 - Today was hard! We are all very tired already. We hit a wall today. Ethan's used to sleeping 11 hours at night and 3 hours for a nap. He's now sleeping 8 hours a night and taking a 90-120 minute nap in the afternoon. He's cranky, moody, and is refuses to take his enzymes even with his favorite flavor of applesauce. He's begun to hit Daddy, throw toys and isn't eating any of the meals they bring him even though I've hand selected everything. He mostly snacks all day and drinks milk.
We are starting to get into a routine and seeing some of the same nurses and respiratory people so it's nice not to have to explain everything over and over again. Everyone who meets Ethan loves him and brags about how cute his singing is and how strong he is.
We are starting to see the effects of a prolonged visit in our own moods and attitudes. It's difficult to remain level headed and calm with a 2 1/2 year old who is screaming and throwing tantrums.
My sister, Kristin Schwiesow Saldana is with him tonight and thankfully he fell asleep about 9pm, instead of 10pm like he has the last three nights. He should sleep until at least 6am, assuming alarms don't go off from his IV.
A special thank you to my mom, Gail Stark Schwiesow who stayed with Ethan last night and got up and went to work today. We love you and appreciate you!
Please pray for endurance and patience for our family. This appears to be a long uphill battle and pseudomonas is unpredictable. We'll know more most likely next week.
Thanks to those who have helped us by staying the night, visiting, bringing lunches, bringing little things for Ethan to do and most of all praying for Ethan. I am constantly amazed at our friends generosity, love & support.
Day 5
And I'm off for another looooong day at the hospital...
Today was an early morning for me. I got here at 7am with Starbucks in hand for me and my sister.
Ethan slept from 9pm-6am when the night time nurse started messing with him. My sister said he really didn't want to get up. He lay there for an hour resting. He is in a much better mood today. We're still having some problems getting his enzymes down him, but it's easier than yesterday. This morning was the first time since we got here that he ate some hospital food. He had cheerios, a piece of toast with jelly & a bite of pancake and, of course, his favorite milk. I haven't seen him eat that much since Monday.
We met with his pulmonologist this morning and here's the plan: We'll do a culture on Day 10 (next Thursday or Friday), wait til Day 14 or 15 for results to come in. If it's negative, we'll go home with TOBI for 2-3 months to ensure it's completely gone. We'll then have a brochoscopy when it completes to see that it's really gone.
If it's positive we will stay an additional week until Day 21, culture again, but head home regardless of results. We'll do TOBI for 2-3 months and do a brochoscopy when it completes. If it's still there at that point we will discuss another hospitalization or decide whether it's not going to go away at all.
Of course, all of this is a tentative plan and we're still hopeful that after his culture on Day 10 that it will be negative and we'll be headed in the right direction.
Right now, Ethan is enjoying Nutter Butters for his snack and watching Cars 2 over and over again :)
Ethan's new thing...refusing to take his enzymes until we call Grandpa. As soon as Grandpa tells him to do it, he takes them. What a stinker!
Taking a 2 hour nap on Mommy. Comfortable for Ethan, not so much for Mommy but I didn't dare move.
Day 5
Today ran very smoothly during the day. Ethan had a really hard time taking a nap in his crib because the nurse kept coming in to mess with his IV pole and he kept wrapping himself up in the tubing. By the time I came over there he kept putting his head on my shoulder and saying "Mommy" in the most pathetic voice. I did what I never do...I decided to lay down with him. Within 10 minutes we both were asleep. I was stuck in the same position in one of the most uncomfortable chair beds ever made for 2 hours straight. I didn't dare move. He needs every minute of sleep.
After his nap we enjoyed a visit with Matt Nelson & he even brought some dinner for us. Ethan loved eating the french fries, but again wouldn't touch his hospital food.
Just as I was about to leave at 8pm, Ethan tugged too hard on the tubing and Ken thought he might have pulled something loose. We had the charger nurse come in because there was blood in the tubing. She checked it and he hadn't tugged anything loose, however the nurse who had done his antibiotic, who usually doesn't work in peds, had not hooked up the antibiotic right and there was no air going through the tubing to keep it clear, so there were bubbles and that's why there was blood buildup. I could tell the charge nurse was upset that our nurse had messed up. She fixed it and all was well.
When I finally left closer to 815, respiratory had just come in for his treatments. We're hoping for another early night but it doesn't look likely that he'll be asleep before 930.
Ken said they weighed him tonight and he has gained almost a pound. I don't know how that is physically possible considering how little he is eating.
Ken's dad is our secret weapon for getting him to take his enzymes. All we have to do is call him and Ethan instantly takes them when Gary A. Dean tells him too!
I have tomorrow off until noon. Ken's on tonight and his brother is coming tomorrow morning to help him. I have a lot of laundry to do and I might go get myself a pedicure tomorrow although the thought of it makes me feel guilty for doing it.
Day 6
Day 6
Ethan fell asleep about 940 last night and even though there was quite a lot of beeping from the IV's he didn't wake up until the beeping woke him up at 330. Ken told him to go back to sleep and he did. At 615 when the nurse came in, Ethan ended up going back to sleep until 715. He was much better rested today.
Ethan has been in a pretty good mood all day. He started taking his enzymes without having to call Grandpa. He had a nice long visit with Uncle Tim this morning while I took the morning off.
After Ethan's treatments & his lunch, or lack of lunch, we laid him down for his nap about 115. A little after 130 his pulmonologist came in and Ethan said his normal "Hi Doctor". Ken told him to lay down on his pillow and go night night. Ethan did it. We put the blanket back down on the side of the crib where you can see us. After 10 minutes of talking with the doctor he decided to take a listen to Ethan and when he lifted the blanket to peek in Ethan was sound asleep. He ended up sleeping for 2 hours and 15 minutes.
We had a great dinner & visit with Pam Jones Perry. It was great to have a home cooked meal!
It's been a low key day. Ken is definitely ready to go home after being here for more than 24 hours. My mom is staying with Ethan tonight. Hopefully there won't be any beeping tonight.
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