Can you see his crazy hair?? This is what it looks like when we use his breathe easy mask right after his bath and his hair is wet!
Monday, September 27, 2010
In one week, Ben will go in for his first PFT. We are very fortunate that our clinic does infant PFT’s. They are harder to perform on young children but will be very helpful to have a baseline for Ben’s lung function. He will have them done yearly. We can compare his numbers from year to year thus allowing us to add medicines/treatments as needed to keep his lungs in optimum shape.
Ben will need to be sedated for the test but luckily it won’t require IV’s. He’ll have an oral medicine, chloral hydrate administered that should knock him out fairly quickly. We know from his PICC line and chest CT that he needs a high dosage. Our guy is stubborn and a fighter who doesn’t like to go down easily!
Our test is scheduled for 9am so I have to get Ben (and myself and possibly my mom!) up by 5am so he’ll be nice and sleepy for the test. Doesn’t sound too bad, except for the fact that he can’t eat 6 hours beforehand. Unless, I want to wake Ben and myself up at 3am to eat, he won’t get any food that morning.
Once Ben is under, he’ll be put into a chamber with a jacket around him similar to his vest jacket. A mask is placed over his face and air will be forced into his lungs, later forced out by a gentle hug from the jacket. This will be done a couple times to make sure they get accurate numbers. His heart rate, oxygen levels, and carbon dioxide levels will be monitored the entire time. It sounds a bit scary but I know several other CF kids that have gone through it and the test results will be extremely helpful in the future.
The test should only take a matter of minutes. Once it’s done, he’ll be pulled out of the chamber. We will then go into our clinical trial but more on that later. Once Ben is awake he can eat but we’ll need to hang around until the doctors have checked him out and given us the green light to go home. I know it will be a long day but I am excited to hear the results. Ryan will miss out (lucky dog!) because he’ll be in Vegas for a convention so my mom is the lucky one to help me with the day. I hope to get pictures to document the day.
Please keep us in your prayers!
Thursday, September 23, 2010
Ben’s final culture results came in and…..
(drum roll please)
No pseudomonas!! Only the “usual respiratory fluids”!!!
We are so elated to hear this! As you can imagine, the hospital stay was not fun so I’m glad we were able beat the pseudo (at least for now).
We scheduled Ben’s Pulmonary Function Test (PFT’s) for October 4th. He will also participate in some research UCSF is conducting (more later). I am excited to get some numbers on Ben’s lung function. Please keep that in your prayers too!!
I had a great birthday yesterday. My husband spoiled me and I had a great night out with my friends. Thank you to everyone!!
Tuesday, September 21, 2010
Monday, September 20, 2010
Sunday, September 19, 2010
We had an uneventful but very fulfilling weekend here at the Hughes home. On Saturday, we took Ben to Home Depot to look at some things and then had a visit from our friend Kaysie. She came by to bring Ben a late hospital gift- a Thomas backpack filled with Thomas stuff. What could be more exciting for Ben?! Nothing!! Thank you Kaysie!
Ryan and I proceeded to spend the afternoon and evening watching all three Back to the Future movies while Ben played with trains and watched Thomas on my computer. The weather has turned ugly so it was nice to spend the day inside.
Sunday morning I brought out Ben’s crayons so he could color. He seemed to have more fun dumping the crayons out and putting them back in though.
Tomorrow, we will find out the preliminary results on Ben’s culture. When he’s grown pseudomonas, it usually shows up by Monday. I will put in a call first thing tomorrow morning. Please, please, keep your fingers crossed!! If Ben does culture pseudo again we will be switching him to Pulmozyme in the morning with Hypertonic Saline at night. We will also pick our TOBI up again too. There really is nothing more we can do if he is still growing it out. We’ll be on TOBI and Pulmozyme permanently until we get three free cultures.
If the culture is clear we will just continue with the HTS 2x a day and will not start TOBI again. We will go back in a month and reculture. If he cultures it then, we’ll proceed with the meds stated above.
I’ll update as soon as I know. I hope everyone else had a good weekend!!
Friday, September 17, 2010
The culture has been taken! Now we just keep our fingers crossed for a clean result!
Ryan is back and Ben took full advantage of his wrestling partner. He was up way late last night and refused to go to sleep until 10:30pm! It could have been the result of us playing “pillow fight/Ben flies through the air” until late last night….
Then the launching began…
I don’t think I’ve heard Ben laugh so hard!
Wednesday, September 15, 2010
down to Pleasanton tomorrow to get Ben cultured. We were supposed to go to San Francisco but since the doctor saw him a week ago, they said it’d be fine for us to come down for a quick swab.
So, the Little man and I will drive 1 1/2 hours for a 5 minute culture. That’s what happens when you love your doctors and will travel to them! For weeks I’ve been stressed about this visit or more the result of this visit. I hope for good news (no pseudomonas) and that the two week hospital stay was worth it all. If we can kick pseudo this round, we pray it’ll be years before Ben picks it up again. Not too sure of our TOBI treatment from here on out but we’ll discuss it when the results come in. We should get the preliminary results on Monday. Either way, we want to thank everyone who has been praying for us!
It’s just the two of us tonight, Ryan has been traveling a lot. We tend to take it a bit more easy when he’s gone, eating in front of the TV, going to bed late and sleeping in. We miss Daddy when he’s gone but enjoy our one-on-one time.
I’ll leave you with a picture of a pants-less Ben who’s been eating with a fork for weeks…
Tuesday, September 14, 2010
I’ve made a parenting mistake. Shocking, I know.
In the hospital, we tried everything to distract Ben while getting through hours of treatments. One thing was to bring up Thomas the Train website on my computer. It has videos and pictures of all the engines. This became one of Ben’s favorite activities.
Well, low and behold, my little Man remembers that Thomas can appear on mom’s computer. Lately, every time I get my computer out, he starts pointing at it and wanting Thomas.
Sunday, September 12, 2010
We’ve been busy!!
On Thursday, Mr. B and I traveled down to Pleasanton to get him checked out by our CF team. He was weighed, 29 1/2 lbs and measured, 38 1/2 inches!! His weight has held steady around 29-30 lbs but he has had a growth spurt up. At the rate he’s growing, our doctors estimated he’ll be about 5’10” when he’s done growing. Not sure where his height comes from but we welcome it!
We went over our usual questions then the doctor came in and did a thorough examine of his tummy. She pressed on it, making sure there were no sensitive areas or hardened areas that could be possible blockages. Everything felt normal and his lungs were clear! So we were given the green light to up his enzymes. Ben now takes six Creon 6’s with meals. Phew, that’s a lot of enzymes to fit on a spoon of applesauce! The best news is that I’ve already seen an improvement in his BM’s. They appear to be back to normal, hooray!!
After our visit, Ben and I continued down to Carmel where my parents live. On Friday we went to the Monterey Bay Aquarium with our good friends, Lindsay and Abby.
We had such a great time and the weather was gorgeous. Thank you to my mom who took many great pictures. It was nice to actually be in some!
On Saturday, Ben and I traveled back to Roaring Camp Railroad (where we saw Thomas) in Felton. My dad’s work was having their company picnic there so Ben and I decided to horn in.
Of course, he had the best time!
Wednesday, September 8, 2010
Warning: If you are eating don’t read. Contains some TMI :)
Ben’s rotavirus test results came back negative (yeah!) but his sample wasn’t loose enough (where we looking at the same sample?!) so they couldn’t test it for C. diff. However, our doctor thinks he doesn’t have it because he has no blood or pus in his stools. He also thinks Ben would be a lot sicker.
SO we are back to square one. Ben hasn’t gained any weight in almost 7 weeks so I think it’s his enzyme dosage. I keep bringing up the idea of switch his enzyme brand but our clinic doesn’t want to jump right to that. They want me to bring him in tomorrow (Pleasanton clinic) to evaluate him. I’m hoping at that point, we can finally make an enzyme switch.
There is a bit more of a concern because Ben was born with Meconium Ileus, a blockage in his intestines that had to be operated on. There is always a chance that scar tissue has grown over and is causing some blockage. Luckily, this probably isn’t the case for Ben, but the clinic may want to take an x-ray of his tummy. I’ll know more tomorrow.
Thank you to everyone who has offered advice, any and all are always welcomed and appreciated!
Tuesday, September 7, 2010
Just when I thought our little man had turned a corner, health wise, he barfs. Last night. Everywhere.
So, I took him in this morning to our regular Ped to have him checked out. He still doesn’t have a fever but continues to have loose BM’s. He is losing weight and I can tell in his arms and stomach. He still doesn’t want to eat much and last night when he threw up, I knew I needed to get him in. They took a stool sample (lucky them!) and will have it tested for Rotavirus and C. diff. We should have the results back later this week.
Until then we are off dairy and on a high starch diet. We’ll see if this helps. I’m also talking to his clinic about switching enzyme brands. Currently, we are on Creon but have had trouble with them since the hospital. The IV antibiotics could have destroyed all the good bacteria in his intestines causing tummy issues. We have added in probiotics (good bacteria) to see if this helps at all. I sure hope we get good culture results from that hospital stay because the after math has not been pleasant. I do hope that it’s nothing more then needing to start a new enzyme or going off dairy. I’ll keep you posted!
Saturday, September 4, 2010
Somebody is feeling better. Somebody is on the mend. Somebody went out and got some vitamin e. Somebody has turned into a complete water baby…
Ryan is gone for a “Man’s weekend” down in So Cal with my dad and brother so I decided to invite my good friend (and Ben’s God mom) up for the weekend.
Megan and I decided that Ben needed some fresh air. He’s feeling and acting a lot better so I knew it was time. Whenever we take him to the pool, he runs toward it. He doesn’t do rafts or inner tubes and I can hardly hold him back. Sure enough, my little (ha!) 18-month-old is a water champ. Ben will even jump off the side into the water.
Are you looking to get a blog makeover? Carla did a great job on mine and if you’re interested head on over to Masto Mama Designs. She designs blogs to help pay for her and her children’s life-saving Meds.
Thursday, September 2, 2010
I knew yesterday wasn’t going to be fun when Ben woke up crying. Something he hardly ever does. Sure enough, an hour after getting up, he had a fever. It reached 102.4 at it’s highest in the afternoon. But after a cool bath and more Motrin, it came down to 99.6.
I called UCSF in the morning even though I knew what they were going to tell me- to just watch him and if anything changes to call. Luckily, nothing respiratory was affected so we don’t need to do any extra treatments or antibiotics. Respiratory issues would also be cause for concern and may require a trip to UCSF. His energy level was low and was managing to eat a bit so I knew there was nothing any doctor could do for us. Our NP made a note in Ben’s file and I’m sure she’ll call us for a follow up today.
We had a quiet day, playing with trains and watching movies. Mr. B went to bed an hour early and slept over 12 hours. Luckily, it looks like he’s doing better this morning. A lighter fever that went down after Motrin. Our NP thinks it was viral, something he could have picked up at playgroup, Gymboree or the grocery store. It doesn’t matter to me where he got it, we aren’t going to stop doing any of those things. The other mom’s in our play group know of our situation and are extremely comfortable with it and would never bring their children around Ben sick. They always call me ahead of time to let me know if there is something I should be aware of. Gymboree is a place for him to socialize and get out his energy and I wouldn’t stop going there either.
It is always physically exhausting when Ben is sick because I go into disinfection mode. I boil all his paci’s, change his bedding, wash the stuffed animals he sleeps with, disinfect ALL his toys, wipe down the surfaces in the family room with Clorox wipes, vacuum and boil or clean any nebs or spacers that need it. I hope this helps him get over whatever he has quickly. In fact, we both went to bed early last night!
Let’s hope that Ben continues to improve through today. He already seems to be turning a corner and I’m thankful for that.