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!!