Preparations

I’ve been getting prepared the last couple days. Doing laundry, making calls, getting the house clean, making sure Carl the fish is settled :) and feeling anxious.

I can’t say thank you enough to all the CF mom’s out there that have offered me advice. It is extremely helpful and helps dilute my feelings of anxiousness. The anxiousness comes from the unknown. The more info I have, the better I am feeling.

My dad graciously offered up his hotel credit so we can stay in SF tomorrow night and Sunday. We won’t have far to go on Monday morning for check in.

I have disinfected all of the toys we’ve borrowed and have also received a kids table to bring with us. I contacted our NP and she said there was room in Ben’s room to bring it. This way, if we’re unable to go to the play room, Ben can still get out of his crib and play. As you can see, he’s already enjoying it.

Dinner tastes better when you’re seated at your size table :)

The Cystic Fibrosis Research Institute is have their annual conference this week in San Francisco. I had hoped to go but knew this hospital stay would be a possibility around the same time so I held off in buying tickets. However, I’m so excited that I will be in the city tomorrow to meet some of my blogging friends!

PS- we are taking Ben here on Sunday and are so excited- a day with Thomas the Train at Roaring Camp Railroads. This is why we waited until Monday to be admitted.

Questions

I’ve gotten most of my questions answered today. We need to be at UCSF at 8:30 Monday morning. PICC line will be put in at 10. He can’t have any food after 4 and only clear liquids til 8. She did warn me that they will have to put an IV into him to sedate him to put in a PICC line- aka I’m going to have to hold him down. I am not looking forward to this at all. A PICC line is really the best choice, an IV can blow out his vein because these are strong drugs going into him. Even though it may be a bit more traumatic in the beginning, it’s really the best choice.

There will be a chair that folds out into a cot where somebody can sleep at night. Either myself, Ryan or my mom will be with him at night. We had people volunteer to stay with him but I think it’s best if we just limit it to the three of us. There’s less confusion and break down in communication. We are the three people Ben is most comfortable with and I want to make this experience as comfortable as possible for him. However, we WELCOME all visitors!! If anybody wants to come visit, please let me know.

Thank you again to for all the well wishes. Thank you to my play group who put together a fun package for Ben that involves Thomas the Train. He is going to be so excited to play with it. I also had a girlfriend offer up a huge bin of toys for us to borrow. There is a play room at the hospital but if there is another CF patient also in the hospital, we will need to coordinate times. CFer’s need to stay at least 6 feet away from each other. Germs like pseudomonas, are contagious between CFer’s. We don’t want to pass on B’s pseudo nor do we want to pick up new bugs! We will also have a private room, all CF patients do. There will be community showers, a washer and dryer, refrigerator, and microwave. Looks like Lean Cuisine and I will become best friends :)

I also made sure to ask who would be in charge of Ben’s care while at the hospital. I didn’t think Dr. N would be in charge, I know he has a lot going on at the regular doctors office. I wanted to make sure I know who to go to if I have an issue. I can tell it’s very political, I can only go to specific people. There will be three residents filling the doctors orders (year 1,2, and 3), a pediatric pulmonologist attending, and a pediatric pulmonologist fellow. Plus multiple nurses. That’s a lot of people but I hope to quickly establish  comfortableness with them. I want them to know, I am no wall flower and am comfortable with all that’s going on. Two weeks is a long time and I just want to make things as pleasant as possible.

The good news is there is wi-fi in the hospital!! I’m loading up my ipod, burning DVD’s, packing books and trying to figure out if I can start a new hobby by Monday to take with me- chances are no :)

PS- R.I.P. Philip the fish. Carl is now a one-man-wolf-pack.

(if you have no idea what that means, watch The Hangover, it’s hilarious!)

cheering up

Yesterday was a long day. It was emotional and physically exhausting. I was on the phone all morning, updating everyone on what was going on. Thank you to everyone who emailed, called or texted me about Ben. We already have a list of visitors!

Ryan could tell that I needed some cheering up- insert the fair. It was exactly what I needed. The weather has cooled down so it was the perfect night to take Ben. He had been to the doctors earlier, getting caught up on his vaccinations.

At the fair we saw animals

(he’s waving to the chickens, adorable I know)

  We ate greasy fair food

now, this was my favorite part. I love fair food and so does Ben. The giant corn dog was perfect for him! He just munched on it while we pushed him around. Ryan and I also indulged in a beer or two. After the day we’d had, we deserved it!

His favorite activity by far was the pony ride.

He wasn’t afraid at all and even managed to squeal with delight.

   This pictures shows just how excited Ben was even while we were waiting in line

  On our way out, I convinced Ryan to try and win Ben a goldfish by throwing ping pong balls into little tiny goldfish bowls. Something he really didn’t want to do. So we agreed that he would try 8 balls for two dollars. Surely, we couldn’t win a fish with just 8 balls?!

Nope we didn’t win a fish. We won two. Meet Carl and Philip. Ben is now the proud owner of fish.

Let’s just hope that Sailor leaves the poor things alone.

I’ll update more about our hospital stay as I find out. Of course, I have a ton of questions and I hope to get them answered soon. 

Culture results

*update: we will be admitted early Monday morning to put a PICC line in him. We will be there 2 full weeks. He will be on Tobramycin and a couple other antibiotics.

Ben is still growing pseudomonas. He will be admitted Monday if not sooner for 2 weeks of antibiotic IV’s at UCSF. I’ll update more as I know.

July clinic visit

As I said in my last post, our visit was okay. Ben was crabby and I had a lot to discuss with the doctor so it made for a long day. We got through it though and are now waiting on our shipment of HS to start our new regiment.

We decided that Ben needed some help in getting the mucus out of his chest. The first idea brought up was Pulmozyme. However, I had some reservations about Pulmozyme. There are not longer term studies on the effects of the drug in children under 5. I had hoped we could do something more “natural” like Hypertonic Saline. Luckily, Dr. N seems to favor HS over Pulmozyme and thought that was a good place for us to start. Hypertonic Saline is just extremely salty water that Ben will inhale through a nebulizer. This can be done while he is vesting. The solution helps break down the mucus so he can better cough it up. We will start off at a minute, having him inhale the HS. From what I’ve heard, it’s extremely hard to take a first. It makes you cough really hard and can irritate the lungs. All good things but they will need to be introduced slowly. Especially on a little guy like Ben.

We will hear the results of his culture today or tomorrow. Not sure of where we will go, we need to wait to hear the results to make a final decision.

Ben is feeling almost 100 percent back to normal . However, he does seem to be clingy lately. He has been going down for his  nap earlier in the day and that seems to be helping. Could be more teeth coming in. We’ll just have to watch and see.

I do have a question for other CF mom’s out there with kiddos on HS. How did you first introduce it? Did you slowly work up to 20 minutes? Any advice? Thank you!

Click HERE if you’d like to read an article in the New England Journal of Medicine about HS in CF patients. Very informative!!

Quick clinic update

Just wanted to give a quick clinic update. I'm sorry I wasn't able to update sooner, we've been super busy down in Monterey.
Ben clinic visit went great! However, they were 45 mins behind and Ben was in a crabby mood. Luckily, Ryan's aunt volunteered to go with us which helped immensely. Ben's lungs and ears are clear (yeah!!) and at 29 1/2 pounds, he's in the 95th percentile!! We ares starting Hypertonic Saline (HS) Monday. HS is just extremely salty water that helps break up the mucus so he can cough it up better. We wait to see what his culture grows out to determine our next move. I'll update more when we get back!

Twas’ the night before

our clinic visit! Our clinic visits are usually pretty easy because we don’t have weight issues with Ben. He is well above the 50th percentile, something we are so thankful for. So, I don’t have to worry about that. I am only worried about what will come after our visit- the culture results. I am trying to remember to cross that bridge when we come it though.

I’m going to a bridal shower this weekend and a baby shower tonight. It’s wonderful to celebrate with my friends some of life’s joy. Ben and Ryan will get some good quality daddy/Ben time this weekend. Something they will both love!

I’m hoping the weather will cool down next week so we can indulge Ben in some greasy fair food. Little Ms. Lucy has been there already and has only good things to say! I

I’ll post a clinic update tomorrow. Keep your fingers crossed for good news!!

Cousins

Ryan is traveling again for a couple days. We always miss him but enjoy some Mommy/Ben time. I try to do more blog postings so he can keep up with what we are doing and doesn’t miss us too much :)

Today, Ben and I went down to the Bay Area to visit my family. My aunt and cousin are up from Arizona and I hadn’t seen my other aunt and cousins in a long time. It had been over a year since we’d last seen them so I decided to end it when my aunt was up visiting.

I don’t think Ben could have had more fun. He loved playing with his second cousins (I think that’s what they’d be to him… first cousins once removed??) and was glad to get some boy time in!

There were legos, trucks, trains, books and boy toys galore. Ben was in heaven! I loved it because it gave me a chance to visit with my aunties.

We also dipped him into the pool. The weather was beautiful, not too hot but just warm enough.

  Ben found this pool shark which he gave multiple hugs to.

Can you see his fat rolls on top of his swim diaper? Those make me so happy.

As usual Ben dined on the fruit we had.

Again, gotta love the fat rolls!

     We miss you daddy, travel safe!! <3

Goodbye!!

We are saying goodbye to our TOBI treatments!! Today is our last day and I’m pretty excited. As I thought, Ben just needed a break. He returned to the treatments just fine. At the end of each treatment we would clap our hands and praise him. He even got to the point where he would see me coming with the neb in hand and walk over and sit in my lap. He does his vest without any complaint either. I am one lucky CF momma!

On Friday, we’ll travel down to SF to our usual 10-week clinic appointment. They’ll weigh him, listen to his lungs, discuss his eating habits and take a culture. A couple days after that, we should know if he got rid of the p*word. Maybe, if the amount growing has gone down significantly, they’ll say we could try one more month before we go into a hospital visit. We’ll have to see.

Ben is now saying “nigh-nigh” before he goes to bed. I tell him its time for bed and he starts waving at everyone (including the tv) and starts walking to his room. He says nigh-nigh and will play in his crib quietly until he falls asleep. Again, I am one lucky momma!

Snuggling with “Bunns” and “Mr. Giraffe” before he goes to bed.

Finally

Ben has finally turned a corner. His cough is nearly gone, just a little coughing during vest time and in the morning. It makes me so happy to hear him healthy again!

We’ve been hanging out inside since it’s been hotter then heck. We are going to the State Fair one night but are waiting until it cools down around Tuesday.

Here is a taste of what’s been going on in our home lately. Ben has been a very busy little man!

Working on his post office skills

 

Playing with his new train set

(he’s been sticking out his tongue lately and has discovered that he can lick his chin)

Playing with his new wheely bug

During the heat we try to keep him hydrated. He drinks plenty of water mixed with a bit of Gatorade and we let him eat plenty of salty foods. His favorite has been pickles! However, he eats them like a piece of corn and leaves the skin behind.

Hope everyone’s having a good weekend!! 

Ben’s summer cold part 4

Ben’s runny nose is finally gone but he still has a nasty cough. It has subsided a little but it’s no where near gone. This weekend will make it two full weeks that he has had it. I hope for it to be gone soon. His spirits and appetite are normal so I’m thankful for that.

It’s been uneventful around here. I went through Ben’s toys and took some into the used children store, Once Upon a Child. Ryan and I disagree about how many toys Ben has (I think he doesn’t have enough, Ryan thinks too many) but we have come to an agreement that when new toys come in, I either pack up and save the old ones or move them on. Most of the “baby” toys I have put into tub containers and packed away for our next one because we no longer have a baby in this house! So I took in two toys today and some outfits that Ben never wore and I never cared for. They gave me a lousy 8$ for most of the stuff and said they didn’t want the others.

So, for lunch I decided to treat Ben to a milkshake and fries with our earnings. Not the healthiest lunch however he had a healthy breakfast so I didn’t care.

Our next mission is to tackle taking enzymes whole. Right now, I open them up onto a spoon of applesauce but today I saw of video of Radek, taking his like a champ! Ben has taken his whole on a spoon of applesauce but it takes a lot more work so I’ve gotten lazy and have just been opening them up. Well no more! Rad is younger then Ben so I’m pretty confident he can handle it. I’ll keep you posted ;)

Wordless Wednesday

Somebody

stole my pj pants

Put them on his head

ran around

used them as a cape

and generally, looked adorable!!

 

Don’t leave your pj’s on the ground mom, they could turn into my new toy

Update #3

Manny’s cough is slightly better. He is still coughing during the day and during his vesting but not so much in between. I called our nurse practitioner (NP) and she said that we just need to wait it out. He’s on inhaled antibiotics (TOBI) and oral (Bactrim) so there is really nothing more we can do. They aren’t too worried about his cough, he did have a slightly irritated ear when we were in last week so she said it could have also turned into an ear infection.

Seeing Ben take so long to get over an illness has really opened my eyes. He isn’t fully vaccinated because I didn’t think he needed all that medicine at once. But I have heard on the news that Pertussis, the whooping cough, is coming back because parents aren’t vaccinating as much. This really scares me because our clinic told us that Ben could possibly die if he caught the whooping cough.

Ben has been vaccinated for the whooping cough but not for others. However, I made an appointment to get him all caught up today. It just isn’t worth it to me. With CF, Ben just can’t get over a cold as easy as healthy people. This is why Ryan and I have been adamant about people being vaccinated before they are around him for long periods of time. I thought we were protecting him enough by asking the people around to be vaccinated but now I realized he needs to be too.

I know this is a hot-button subject and I am not trying to start an argument. I have been on both sides and I just want what’s best for Ben. We are just doing our best to raise a happy, healthy little boy!

Update

Little Man’s cough is still holding the same. His nose is continuing to run. I’ll put in a call to our CF clinic tomorrow, it’s been a week since his cough started. We are only on day 2 of our antibiotics but I think a week is a long time for him to have this cough. Not sure what the next step will be. Poor guy!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

When we were home for a couple days, I took Ben to Dennis the Menace Park in Monterey. It was cold and dreary but I wanted to get him out for some fresh air. The huge train in front of the park was his favorite (duh!).

Ben and my mom climbed all over it.

 

The swing bridge was his second favorite thing. I was pretty proud of him, he wasn’t scared at all. He just ran out on the bridge and started to bounce it!

 

The next day we went to the Monterey Bay Aquarium with my aunt and new cousin Jessie. I didn’t get a chance to take any pictures because it was packed with tourists, but Ben had a great time. He loved the big tanks filled with sharks and fish. As usual, he loved splashing in the little pool with fake fish.

I also let him put his hands into the touch tank to touch the starfish and sea anemone. However, that promptly ended when he picked up a starfish and threw it! I thanked the MBA volunteer and high-tailed it out of there.

Afterward Ben made me very happy when he had a milkshake, french fries and quesadilla for lunch. I love seeing him take in those calories!!

Ben was also very lucky to receive a hand-me-down Thomas the train set from his Papa and Nana. There has to be at least fifty pieces of track, over twenty trains and multiple scenery pieces. My father-in-law is going to make Ben a train table to put the track on. Thank you Nana and Papa!!

Lastly, I leave you with my favorite new picture of Ben.