The much anticipated, Emme Jane has finally arrived! Our good friends, April and Troy, had their second daughter early Saturday morning. She was due to come any minute all week but of course, she waits until I leave for the weekend, to make her grand entrance. I couldn’t wait to get my hands on her.
In other news, the newest and coolest CF invention arrived at our house today. A woman on Etsy, sells these harnesses for CFer’s or any other kids that require nebulizer treatments.
Ryan and I had the best time this weekend. We traveled down to Carmel Valley to attend the wedding of two high school friends. We were really excited because we knew it meant that we’d be seeing a lot of old friends. It was a blast!!
The weather was perfect and even better was the ceremony and reception took place 3 miles from my parents home. It was nice to know that Ben was close by even though I never need to worry when he’s with my mom. I’m not sure if Ben and my mom had more fun together or me and Ryan!
The drive to and from was pretty crappy, we hit some major traffic. However, Ben found that an US weekly magazine passes the time well. Perhaps he’s a Jerseylicious fan?
Looks like it!
For the last week Ben has just been acting bad. Fussing for no reason, clingy, not listening and just all around different. Ryan and I weren’t sure if it was still due to the hospital stay or not. His BM’s were also off. He was having multiple a day which wasn’t like him. He’s usually pretty regular. Something wasn’t adding up.
I talked to the CF team and they said that his Creon dosage was correct for his weight and that they wanted us to wait it out and give him some more time before they added/changed his meds. My mom suggested that he may be teething so I looked in his mouth but saw nothing except the six he already had.
We couldn’t figure out what was going on with our little man. We had been tossing around ideas all day. We HATE having to be tough on him especially when it seemed like something was bothering him. Perhaps we were entering the terrible two’s early.
Tonight, I was sitting next to him on the floor when I noticed him chewing on his fingers. Something he normally does not do. So I cleaned my hands and stuck my finger in his mouth to give the teething theory another shot. And low and behold….
We have our first top molar!!
I am so excited for Ben to be getting more teeth. I feel like he’s kinda behind with only six seven but his regular pediatrician said to not worry. I am more thankful for an explanation to his fussiness. We can help him now by giving him some Motrin and knowing what’s going on with him.
He also went in for his fifth (who’s counting at this point?!) haircut yesterday. He screamed. the. entire. time. Ugh.
Our playgroup has been buys lately, and I’m loving it. I like to have something planned for Ben everyday even if it’s just going to the mall. With no backyard, I like to get him out of the house.
Sunday, Ryan and I took Mr. B to the park. We weren’t there too long before he got stung by the bee. However, in the short amount of 
On Monday, we went to the zoo. Big mistake. It was a free admission day, sponsored by Target and all of Sacramento seemed to be out. Since it was so busy, I had to keep a close eye on Ben so I didn’t get any pictures besides this one…
We are pushing through on treatments. They take a long time but we are hoping for a clear culture next clinic visit.
A video of Ben. Because it’s just been too long…
Ben splashing from Margaux Hughes on Vimeo.
Ben’s treatments have been going okay, he’s not liking the spacer (xopenex) on his face but we’re pushing through. I’m keeping my fingers crossed for good culture news.
We took B to the park today and he got stung by a bee on the palm of his hand. I freaked out for a moment because I know a lot of kids can be allergic to bees. Luckily, he had no allergic reaction and barely shed a tear. He is such a stud :)
Tomorrow we are hitting up the zoo with our playgroup. Pictures to come.
Summertime is still in full swing here in Folsom. After our dreary, cold stay in San Francisco, we were excited to be back to the heat. The weather, in my opinion, has been perfect- high 80’s/ low 90’s. However my girlfriend April, who is due to have her second daughter any minute, would have to argue. But wouldn’t you at nine months pregnant?!
I’ve been trying to keep Ben busy since we’ve been home. Today we went over to our friends house to enjoy their backyard and some water toys. Our Hawaiian tan has disappeared due to the florescent glow we endured for two weeks, so I thought it was time to get out and get some vitamin E.
I brought over some watermelon and B ate the whole thing!
I thought I’d update a bit more on our discharge. Ben’s PICC line was pulled pretty easily without tears. They just had to hold his arm still then gently pull the catheter out. Look like he’ll have a bit of a scar just like the spot on his ankle from his first line. He did have some skin irritation in the area where the tape was. He still does have some sensitivity to tape.
We are going home on Hyper Sal and TOBI. Our prescription hasn’t arrived so B’s had a few days off of HS and his cough seems to be subsiding. If his cough flares back up when we start HS we’ll talk about switching him to Pulmozyme. We will be doing 25 days of TOBI then culturing him on the 17th. Ben will need to have 3 pseudo free cultures before we are declared pseudomonas free. We will be doing on/off 28-day cycles of TOBI until then. Keep your fingers crossed for good news. If Ben can’t get rid of the pseudo we will be talking about starting a new antibiotic called Cayston. For some reason I can’t create a hyperlink to Caystons website, so you can read about it here: http://www.cayston.com/. This is a couple months away if at all so we aren’t putting too much thought into it.
Ben is having some trouble getting back into our routine. For two weeks, he got to eat what he wanted, got his paci 24/7, watched endless amounts of movies, had new toys given to him daily and didn’t hear the word “no”. So it’s been a bit of an adjustment, getting back to our normal routine. Our CF team warned us that it may be hard for him but just to give it time. I hate having to discipline him so much, he’s usually such a good boy. It’ll just take some time and patience on everyone’s part. When I took him to Gymboree yesterday, he ran all over the place. He wanted nothing to do with any organized activities (parachute, song time) but I figure it’s his time to do what he wants. I’m not going to force him to sing songs with me. Anyways, he has 2 weeks of pent up energy to get out. We’ll be keeping our fingers crossed that things get easier for him in the next couple days.
The Thomas toddler underpants are great “no-pull-diaper-off” cover, Aunt Molly! Plus, he looks stinkin cute in them….
WE ARE HOME!! I’m sorry I didn’t update yesterday, we were just too exhausted. Ben’s CT scan went well, a bit hard to see him sedated again but he did great with everything. Even better is the news we got from the scan.
The preliminary findings show no damage, only a slight amount of mucus (which is not concerning because he does have a small cold), no inflammation or air pockets. This is EXTREMELY good news!! Most lung damage is irreversible so we are so thankful that Ben has none at this point. woohooo!!
We were unable to do his PFT’s which was a huge disappointment. We couldn’t move him in time from the CT scanner to where PFT’s are done. We didn’t want to sedate him a second time in one day so we will be having them done in the next couple months. I wish we could have had them done there but I am satisfied with scheduling them in the next couple months.
Of course, Ben is so excited to be home! Carl survived and so did our cat. I got a good nights sleep and feel like a new woman today :)
Yes, there is a countdown!! We are still a go for discharge on Monday afternoon. Ben’s CT scan and PFT’s will be done Monday morning. They will want to watch him for an hour or two after he comes out of sedation but hopefully after that we can go home!
His cough is still holding so we’re not sure if he has a cold or it’s all the new nebs he’s on. There is some gunk that comes up when he nebs but it could be from the start of a cold. However, some kids develop a permanent cough from Hyper Sal until they are taken off. It’s meant to irritate the lungs to induce coughing but for some it may be too much. I’ll be discussing the possibility of discontinuing the Hyper Sal with our Pulmonologist to see if that helps clear it up. If so, we may go home on Pulmozyme versus the Hyper Sal. He has no fever and is on antibiotics so our doctors aren’t too worried about it. We’ll just have to wait and see.
I just had to pass on a tip for all the other CF mom’s out there. My aunt and cousins sent Ben a portable desk in the mail (that they beautifully decorated) and it has been fabulous!! I am able to put it on Ben’s lap during his nebs or vesting and he is able to run his trains on a smooth surface. Thank you to the Mike York’s!!
Don’t you just love those chunky thighs??!
I said “I Do”. Hands down, best decision I ever made. I knew I was going to marry Ryan after our first date. When you know, you know.
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A little Manny update:
Last night was sad. A little girl down the hall passed away and we could hear the families sobs from our room. My heart goes out to her family. I hope they find some peace and comfort in the up coming months.
Ben is holding the same with is cold. A runny nose and a few extra coughs during his treatments. The doctors are not concerned, they just come in to listen to his lungs more often. We are still on track to leave Monday, probably late afternoon after all his tests are preformed.
I know I sound like a broken record but I can not say thank you enough to all the families that have sent us a package. Ben is LOVING all this new Thomas toys (even his toddler underwear, Aunt Molly!) and they are keeping him occupied during the day. Thank you!!
We have some good news and some bad news. Looks like Ben may have picked up a slight cold while here. This morning he woke up phlegmy and sneezing. However, things seem to have been cleared out this morning with his treatments. During his play time in the play room I’ve been a disinfecting monster. I’ve changed his sheets and have wiped down every possible surface. Let’s pray that with the extra treatments he does, we avoid a cold.
The good news is that his vitamin levels are looking good. They draw blood every couple days (from his PICC line) to test his liver function. Too much Tobramycin can affect the liver so they want to make sure he’s on the right dosage and that it’s not causing any damage. Last week his vitamin D level were low so he was also put on an added vitamin D dosage beyond his typical 1ml 2x a day ADEK intake. So far everything is looking great. Upping his enzymes has helped, his BM’s are back to normal.
On Monday, we plan on running some tests. Tests that we’ve been avoiding doing because they require some sedation. With his PICC line in and us staying at the hospital, it makes sense to get them done now. He will have a high-resolution CT scan done on his chest. It’s basically a chest x-ray that will show us if there is any lung damage or if any air is getting trapped. He will need to be slightly sedated for this because it can take awhile and holding him down is not an option. Dr. N also wants to run a clinical trial PFT test on him. Another Dr. N is coming out from Copenhagen and will arrive the Monday we are due to leave. If Ben cooperates, he will not need to be sedated, it can be preformed during his nap. I’m not too optimistic about that happening so we will see. The clinical trial is a new gas (not too sure of the name, it’s really long!) that gets inhaled into the lungs and can measure lung function in young CFer’s and preemies. Since Ben is around, Dr. N had hoped to perform the test of Ben. Of course, we completely trust him and know that he would not perform anything on Ben that could be harmful. I’m hoping we will get some good results from these tests. They will give us a baseline of Ben’s lung function so we have it to compare later on.
That’s it for now, we’ll continue to keep you updated!!
First of all, I have to say Happy 29th birthday to my wonderful husband!!
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Things at the hospital have been going okay. We were moved down a floor which may not seem like a big deal but it was. I felt like we finally had a flow going, knew the nurses and had some-what adapted. We were on the oncology floor and are now on the regular pediatric floor. It’s loud down here because the children are a lot more active and our room is smaller. We are taking it day by day and every time they hook up his Tobramcyin, I am glad we are here. We are getting some good medicine in him that will hopefully clear out the pseudomonas for good.
We have also upped his enzymes from 4 to 5 a meal. He was having diarrhea from the antibiotics which developed into a nasty diaper rash. The good news is we have medical grade diaper rash cream that cleared it up in a day. We decided to up his enzymes just in case he had outgrown his last dosage. Our dietician was also concerned that he hadn’t gained any weight in the last two and a half weeks. He’s obviously an extremely healthy weight, they just get a bit concerned when he stops gaining. So, we are now keeping track of his calorie intake over 24 hours.
Here are so new pics in our new room:
I know, a blog post is way overdue. I am mentally and physically exhausted but I know people want to know how Manny is doing.
I can’t believe it’s already Saturday. It’s like the twilight zone in here. I thought I was going to be bored and have so much time on my hands. WRONG!! I barely have time to eat and I pass out at night. I’m trying to keep Ben entertained all the time and the hour break I have, I either shower, catch up on emails or blog.
The first couple days were very hard. We had some major adjusting to do and there was honestly a moment where Ryan and I thought we’d have to say, this isn’t going to work, and pack up and go. But we are learning to take it day by day. We quickly had to establish our own routine with the doctors.
Usually when a CFer comes in they are sick. However, Ben isn’t really “sick”. He’s only in for antibiotics. They wanted him on a strict treatment regiment. They wanted him to Xopenex 4 times a day, vest 4 times a day, take Hypertonic Saline 2 times a day and also do Pulmozyme once a day. They wanted him to do his inhaled treatments first and then vest. That’s over four hours of him sitting still to do treatments. Not an easy thing for a toddler to do especially when they’re not in the comfort of their own home nor are they used to it.
SO I spoke up and told them we were not going to be doing 4 treatments a day. Between meal time and playroom time, it just wasn’t going to work. We can only go to the playroom a couple times a day because he have to avoid another 5-year-old CFer here. I want to make sure he gets as much free time as possible and with four treatment sessions, it wasn’t happening.
The next issue was wearing a mask. They wanted Ben to wear a mask every time he went outside his room. A 17-month-old wear a mask?! Yeah right! I couldn’t even get the loop over his ear. Luckily, Dr. N comes around every day to see how we are doing. I expressed my concerns about him not being able to wear the mask and so he spoke to the nurses and told them to back off. It’s not hospital policy only strongly recommended. Like the treatments, I understand where they are coming from. However, Ben is different and first and foremost he is a kid with lots of energy.
UCSF is also a teaching hospital so we have anywhere from 5-10 people coming into our room a day. We often have groups of med students outside our door learning about Ben. It’s great because I can learn some new things. I try to listen in as much as possible. But this also means that we have a lot of people talking to us, telling us the same thing over and over. When our nurse first brought in Prevacid for Ben to take (which he normally doesn’t) I asked why he was being put on it now. Our nurse didn’t know and said she’d pass on my question to the doctor. Well, for the next day and a half I had people coming in saying, I hear you have an issue with the prevacid, and I kept saying, No I’m just wondering why he’s being put on it now(I felt like Ron Livingston in Office Space, “What’s this I hear about your TPS reports?”) ha! I realize that doctors need to start some where and I don’t mind. It’s just taken some getting used to.
I can honestly say that everyone who comes through the door comments on how adorable Ben is, how big he is or how big his feet are. He is charming the pants off everyone especially the nurses. He has been amazing through this. He his able to be “unleashed” for a couple hours a day and we use that time to run him around.
I want to thank everyone who has sent us a package or note. Ben has received four in the last two days! We are having no trouble keeping him entertained especially during treatments which is a huge stress relief for Ryan and I. People have been so generous that we are sharing some of our new stuff with the kids on our floor. We plan on leaving behind most of it, to the kids that are here or in the playroom for kids to enjoy for time to come.
We are on the pediatric oncology floor so when my spirits are down, I look around at the fuzzy-haired, pale, children around us and realize how truly lucky I am. Dr. N, our nurses, and our multiple doctors have been amazing and we are so thankful for a fabulous group of doctors looking over Ben.
Here are some new pics. Our scenery hasn’t changed much :)
I’m glad it’s Wednesday because I’m too exhausted to write anything.
I’ll update tomorrow on our routine, Ben’s meds and how I’ve already had to go toe-to-toe with the doctors. Stay tuned!!
Putting the PICC line in was horrible. It took three of us to hold his hand down to put in his IV that would deliver the Kettamine (his sedation). He’s on Ryan’s lap, crying and reaching for me. Not an easy thing to do. However, they got the IV in pretty quickly and he calmed down as soon as the drugs hit him.
I put him on the gurney and they immediately hooked him up to monitors and gave him a couple minutes to go under. The Kettamine didn’t put him fully under just enough to not feel pain or know what’s going on. You don’t want to give kids too much so they closely monitored the amount he was given. Well our little guy is a fighter and wouldn’t go quickly. They had to give him quite a bit. Everyone kept saying how stubborn he was being, ha!
Finally he was out, and they put up a small drape to put in his PICC line. It took them quite awhile, over an hour when it usually only takes 20 minutes. They couldn’t get the tiny catheter around his shoulder. With a PICC line, the patient has a tiny, plastic tube that goes into a main artery. This way we can’t blow out a vein over the heavy drugs and they can also draw blood from it without having to stick him again. A painful process to start out with but worth it in the end. When it was finally over, they left him on the gurney waiting for him to wake up. It took over an hour so they finally let us go back up to our room. He continued to sleep for over an hour and a half.
Thank you to all you have contacted us. If you’d like to visit us or send us some mail, please let me know. I’ll figure out our address tomorrow and post it up.
We had a great weekend in SF. The weather was crummy, cold and windy but otherwise we made the most of it. Of course, we had the hospital stay looming over us.
Ben had a blast in our hotel room, rearranging the mini-bar.
Seeing Thomas was so much fun. The weather was freezing but Ben had the best time.
Ben didn’t particularly enjoy the train ride around the park because it meant he had to stay in one place :)
We did have a blast and are excited for next year!
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