Wednesday, June 27, 2012

Days 9 & 10

Day 9

I'm doing this update earlier in the evening so when I finally get home tonight about 9pm I can crash. I didn't go to bed until after 11pm last night, something I rarely do but i got to talking with another CF mom and ended up staying up too late.

Last night Ethan's IV's kept beeping every hour. Ken said that Ethan woke up every time the IV beeped so he was up every hour. He went right back to sleep but had interrupted sleep all night. Needless to say he was in a mood this morning. Thankfully he snapped out of it after breakfast.

Today we enjoyed a visit from my old boss and one of her two kids. She visited when it was time for us to go outside for an hour so the kids ran all over Kaiser's campus and Ethan was sweaty by the end. When we tried to leave the building to play outside, the nurse hadn't suspended his security tag and the elevators opened and started making a weird sound. We weren't getting in. Soon after a ton of nurses and security guards came down the hall to make sure he wasn't be abducted. They fixed it and we went outside.

Ethan took a great nap today and now after a dinner of Nutter Butters and milk he's watching Monsters Inc. for the first time thanks to MacKenzie Gilmore. He still hates hospital food so he snacks mostly while we are here. I'll have to put that on the list of stuff I need to fix when we get home.

Ken & I enjoyed a lunch out at Inn & Out today. It was nice to get out of the hospital together for awhile. We thought about catching a movie while Ken's mom was with Ethan during nap time but the timing didn't work out.

Tonight Ethan is with my sister overnight. He's always excited to see his TT. Hopefully he will sleep all night tonight!

 Day 10

Last night Ethan slept from 915pm-8am!!!! The longest night yet! Unfortunately, he wasn't in the greatest mood when respiratory came in for his 1st treatment at 830. He took his 1st neb fine, but by the time they started the 2nd he wanted me to hold him. I can't hold him during treatments because I can't inhale the meds while pregnant. We switched to his vest and he hugged me the whole time, then my dad came in and held him laying on his chest with neb running. Ethan was obviously still very tired from 2 nights ago when he was up every hour when the beeping woke him up. Thankfully his mood improved.

We headed outside for an hour again today. He always comes back sweating and ready for a bath.

Ethan took a 2 hour and 45 minute nap today! He was in a great mood when he got up.

We enjoyed a nice visit with Jennifer Guzzo & Shirley Neal tonight. Ethan enjoyed watching Matt play with his toys during his treatments. He certainly misses playing with his friends. We're hoping to get more of his friends here to visit by the end of the week.

Ken just text me to tell me that Ethan's favorite nurse Kuy came by (on her day off) to drop off a pair of pajamas for Ethan. Only problem was they were a size 6. She loves him and he loves her! Last night my sister said that he said "Love Kuy" to her when she left before bedtime.

Tonight was an early night for me. I actually made it home before 7pm which doesn't typically happen. I'm really really tired after having 2 nights in a row where I haven't gone to bed until after 11pm. I'll be so happy if they tell us on Monday or Tuesday that we can finally go home. Tomorrow is his Day 10 culture!

Day 7 & 8

Day 7

Ethan had a great night of sleep last night. For the last couple days he's been able to go back to sleep between 6 & 7am so he's now getting almost 9 1/2 hours of sleep a night, which is great for the hospital.

Despite the extra sleep Ethan was cranky this morning and probably could have gone back to sleep at 10am if we'd have the time in the schedule of treatments to make it happen.

Thank you Sara Friedman for bringing us a foam mattress pad to use on the uncomfortable pullout chair bed and for the blanket. Also, thank you Wendy Flanagan for a great homemade lunch, especially for making Ethan's favorite Kraft Mac 'N Cheese. That's the first meal I've seen him devour all week. Ken really appreciated the beer too!

Ethan had a day filled with visitors, including my dad, his papa who came by for a quick visit. Ethan took a 2 1/2 hour nap today! The longest all week. I would have slept too if it hadn't been for the beeping of the IV and people coming in and out. Ethan was in a great mood after his nap and afternoon treatments.

We've lucked out the last few days and have had no neighbors. Today they put a newborn next door. I hope that mom can get some rest with my loud singing toddler banging doors. We're trying to keep him contained but he's now obsessed with opening and closing the bathroom door.

Tonight we had a special treat, dinner from Chili's brought to us by Mike Jones & Alene Sayles-Jones. Thanks for the great grab bag of toys & activities for Ethan! I foresee us taking that bag out when he gets bored and having him choose something to play with.

Ken & I rented The Muppets from Redbox tonight so Ethan can watch it for the first time tomorrow. Ken's mom is with Ethan for the night and Ken gets to spend most of tomorrow and all tomorrow night with Ethan on his 36th birthday!

I am constantly blown away by the generosity of friends & family who have continued to pray for us, bring gift cards, meals, bring activities, toys & books for Ethan and come by to see Ethan. I hope that one day we can help out one of you when you need us.

 Day 8 - It's already been a week!

Today went really fast! When I arrived this morning I was able to talk to Ethan's pulmonologist briefly. She made sure that the nurse made it possible for us to get outside today. An hour later Ethan was headed outside to play for the 1st time in a week. He hadn't been out of his room since Tuesday. He was so excited and talked to everyone we saw outside. He ran around on the grass and loved being unhooked from the IV pole. It wasn't even a struggle to get him back inside.

He definitely has cabin fever. He's moody and has begun throwing food & toys.

He loves most of his nurses, respiratory therapist and even the food service workers will come in and say "How's my favorite boy?" He has a reputation for being compliant, talkative and smiling at everyone who he comes in contact with. There are nurses that come in just to say hi to him. His favorite nurse is Kuy. He met her his first night when she put in his IV. Ever since then he remembers her name and says "Hi Kuy" every time he sees her. He is by far his favorite.

Thank you MacKenzie Gilmore for lunch! I think we'll definitely have enough single servings for a couple lunches and maybe even dinners this week. We'll bust out the play dough tomorrow!

Ethan's settled in for the night with Ken. They watched part of the Muppets movie tonight, had respiratory therapy and gave me a call to say goodnight. I love hearing Ethan say "Good night, sleep tight, don't let the bed bugs bite" and miss having him across the hall at night. Hopefully he'll be home and asleep in his own bed by next Tuesday and psuedomonas free.

Saturday, June 23, 2012

Days 4, 5 & 6

Day 4

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.

Wednesday, June 20, 2012

Days 1, 2 & 3 in the hospital

Day 1

I just got home about an hour ago from the hospital. Ken is settled in with Ethan for the night. He did very well with the IV. He cried initially mostly because the nurse was holding his arm so tight, but after that he was a champ! He talked and sang the whole time.

Ethan is being scheduled for a PICC line to be put in tomorrow. They will sedate him for the procedure. This will be a better long term IV for him.

The doctor is saying we'll be staying for 10-14 days. They have increased all of his treatments. There's too many to list. They are basically treating him like he is sick by boosting everything up.

We were pleasantly surprised to learn that they have a playmat that was sanitized for him to play on the floor and toys that have been cleaned too. His only hangup is that he can't go very far on the mat with his IV attached which is very frustrating for him. He looked very tired when I left tonight so I'm hoping he sleeps well for Ken. I felt bad leaving to go sleep in my own bed, but I'll be there all day everyday for the next two weeks.

Day 2

 Day 2 begins. I slept decent last night and heard this morning that Ethan finally fell asleep at 1015 and slept until 6am. 8 hours is a horrible nights sleep for him but it's something.

They still haven't scheduled his PICC line so we can't feed him until we know what time. It's really frustrating because they knew all day yesterday that we were coming in so they should have been planning for it. He can't eat for 6 hours before the procedure. He didn't eat well last night at dinner so I know he's really hungry this morning.

 Day 2 is almost over! Ken and I came home tonight to sleep while Ken's mom stays overnight with Ethan.

Ethan was sedated for his PICC line (long term IV that is placed through the inside of his arm and into his chest to a larger vessel). He was sedated for 3 hours and it took a little over an hour for him to wake up. He was very hungry when he woke up and wanted water. He hadn't had anything since 7pm last night. By the time he'd woken up this morning it was within the 6 hour window where he couldn't eat or drink. We made it back to the room about 4pm and he finally ate about 530.

Ken and I are so thankful that we have family who are willing to take night shifts with Ethan so that we can go home to eat a regular dinner and sleep.

It was hard to leave tonight. Ethan was very unhappy to see us go, especially daddy. After a minute outside the door he stopped crying.

Tomorrow will be our first normal day in the hospital. I hope we can keep him occupied in the room and that he takes a nap.

Day 3

Day 3 was a success! Ethan had a very good day and it went smoothly. Ken's mom has been staying with me during the weekdays so that with two of us things can run a little more smoothly.

Even after handing in a special menu Ethan still doesn't like hospital food so he mostly eats snack foods and milk. We have added a snack to his day since he's waking up at 6am when the nurse first comes in for the day.

He is doing great with all his respiratory treatments and tolerates all of it.

Thank you to Valerie Barber Luedke for a homemade lunch today! It was so nice to eat normal home food and you spent so much time on the little details to make it healthy and a special treat. We appreciate it so much!

We were very lucky today that he took a 90 minute nap despite many disruptions. He slept through until his IV machine started bleeping so loud it made me jump, so it woke him up crying.

The music lady came by today with her mini harp and sang to him for 20 minutes. He loved it! He would have loved it more if he hadn't just woken up from his nap. Anyone who knows Ethan knows that he loves to sing and talk very loudly. He has a reputation on the floor for being heard all the way down at the nurses station, 4 rooms down the hall.

My dad is with him now and my mom is coming soon for the night. We are starting to establish a routine and are hoping to get him outside tomorrow, hopefully without the IV pole.

We will definitely be in the hospital for 14 days, possibly longer depending on his next culture which should be taken a week from Friday on Day 10. It looks like July 3rd is the first possible day we'll head home.

Monday, June 18, 2012

Here we go again...

I've been awful at blogging over the last 6 weeks and so much has happened. The most important is that Ethan's pseudomonas is not gone. He had a culture last week and the results came in this weekend. He still has a light growth of pseudomonas. We are headed to the hospital for a 7-10 day stay later this morning.

We've gone through two hospitalizations before so, in theory, this should be a breeze. I can't help but feel just as overwhelmed as I did two years ago when he was in the hospital. I may appear to be strong and have it together, but inside my heart is breaking because I want to protect him and make everything better.

Every time I look at him I think of how perfect he is and it's hard to believe that he has this horrible bacteria inside of him. He looks so healthy on the outside and acts like any other kid. He has no idea what's going on or what is going to happen this week at the hospital. I wish I could shield him from all of this.

We are hopeful that the IV antibiotics will do the trick and rid his body of the pseudomonas quickly. I'll try to update my blog more frequently, but facebook is probably the best place to see updates on Ethan.

Thank you for all your prayers, offers for meals, and help!