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.
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!
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!
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!
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.
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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.
Life is full of decisions :)
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