A very long update

The past few weeks have been a little crazy. Logan has had lots of appointments and we took our first camping trip.

We saw Dr. Southerland (Urology) a few weeks ago. He had ordered a renal ultrasound to make sure that Logan's kidneys and bladder were working good. Ultrasound showed that Logan's right kidney was full but his bladder was empty. Dr. Southerland wants it rechecked in 6 months, so I don't think he was too concerned. Logan had some blood work done back in march to make sure he is producing testosterone. Luckily, after a HCG shot, his testosterone levels shot up, so we know that testicles are there! His surgery is scheduled for May 13th, and the bronchoscopy will be done at the same time. I don't think Logan will have such a hard time recovering from surgery now that he has his trach. :) We are hoping to only be in the hospital for 24 hours.
Logan also had a swallow study the same day. It didn't go like I thought that it would, to say the least. The first taste he got was a spoonful of food. He has only had taste. I know that Logan was overwhelmed by the amount of food in his mouth. He did however swallow, but couldn't complete the swallow. It sat in the back on his throat and was eventually aspirated. He was given more of a liquid and was able to get more of that down, but it is hard when Logan is on the vent. The pressure from the vent pushes up whatever is in his throat, and can push it up through his nose.
After the swallow study, it was recommended to see Dr. Alexander, who is Logan's physical medicine rehab doctor. He is amazing, and can get us whatever we need. We go see him on May 7th, so we can get recommendations for speech and vital stim.

Logan was put on Amoxicillin last Thursday for yet another ear infection. Man, I tell you, we can definitely tell when he is getting sick. He gets thick secretions, and lots of them. It's much harder to keep him clear. Anyways, Friday he started puking randomly when he was getting fed, and it continued throughout the weekend. Finally on Wednesday I had enough of it. Brian and nurse Rene brought him to the ER and we found out that he is allergic to Amoxicillin. We got his antibiotic switched to Biaxin and he is doing great with it. No spitting up since then.

Last weekend we took Logan camping with no nursing. Just Brian, Logan, and myself. It felt good to be a family without nursing, although, I love our nurses and don't know what I would do without them! Of course Logan was not feeling the greatest, so it was a little rough at night time, but overall, it was a successful trip. We are looking forward to the next one.

Logan went to the eye doctor today and had a great check up. Dr. Young said that Logan is near sighted, and may or may not need glasses later on. There are no scratches on his corneas and he said that Logan's eye lashes are soft and he is not concerned with them rubbing on his eye balls. He said that they should grow out as Logan continues to grow.

Logan got his vest a few weeks ago. The vest is used for chest PT and really works for him! He hated it at first, but now he goes to sleep and makes noises when it is shaking him :)

 

 

 

Overall, it has been a great few weeks, and Logan is doing great!

As I lay here thinking about today's adventures, I can't help but wonder about the future of my family. We take one day at a time, as we have for 14 months now. I had a very important appointment on Friday that opened my eyes to something I never thought would be an issue.  I can't go in to details because decisions have to be made, and every aspect needs to be considered, but just keep us in your prayers so that the right decisions will be made.

A day with Logan

My mind runs a million miles a minute most of the day. Trying to work to make a living, and schedule our lives around doctors appointments and appointments for home visits, do house work, cook, and make sure I spend quality time with Logan and Brian, I feel like I need two of me. Things can be very stressful at times, but Brian and I are thankful we have great jobs, and bosses that care. Without that, we really would be lost. A day with Logan is a full time job...it's nothing like taking care of "healthy" child. It's more like taking care of a child that is sick all the time. Although yes, Logan has a genetic disease, but he's pretty stable, but still considered sick.
I just wanted to walk everyone through a day with Logan. I'm not asking for a pity party from anyone, but I just want everyone to know the real reality of taking care of Logan.

7am- Breathing treatment, Xoponex, and chest PT
7:30- Bath in the tub with PMV or thermovent on, or sponge bath with PMV on. Gtube & trach care done after bath.
8-9- Move Logan to the living room and suction a lot because of the breathing treatments.
9am- First bolus feeding & meds given, oral care done also
9:30= Flush gtube and flush feeding bag
10am- More chest PT & gets down on the floor for exercises
10:30- PT on Wednesday for 1 hour- Working on head control and supporting the spine
11:30- OT on Monday's for 1 hour
12-1pm- Usually napping
1pm- Bolus feeding
1:30pm- Chest PT to clear secretions
2pm- Usually playing
4pm- Bolus feeding & flush 30 min. later
5pm- Breathing treatment & chest PT before bedtime
6-8pm- Playing, watching TV, usually asleep by 8pm
8pm- Bolus feeding & meds given. Flush 30 min later
10-pm- Put in crib, diaper changed, humidifier filled up, and everything restocked.
11pm- Bolus feeding & flushed 30 min. later, rotated from sides to back
1am- Breathing treatment and Chest PT given, trach care and gtube care done
2am- Bolus feeding, and flush 30 min. later, rotated after feeding
4am- Breathing treatment & Chest PT given
5am- Bolus feeding & flush 30 min. later

So as you can see, unless he is sleeping, Logan is a full time job, Thank God for our incredible nurses that help us care for Logan. There would be no way that I could do this everyday and work.


Logan is doing pretty well after his hospitalization. He will be finished with antibiotics tomorrow, and I can't wait. Poor thing has had a upset stomach ever since he has been taking it. We are going to UNC on Thursday for Logan's ultrasound, meeting with the surgeon, and his swallow study. I can't wait to finally see what Logan is capable of doing.
Swallowing is such a task when he is on the vent, so we will see.

Back to normal

We got to come home Friday afternoon, which was a great thing. Trach cultures came back positive for pseudomas sensitive to Cipro. So, Logan is on cipro for 10 days. It can be very harsh to the stomach. It can cause thrush or yeast infection so we have been giving Logan some yogurt with active cultures in it to fight these things off. Poor thing has had diarrhea  for a week now. But I am happy to report that Logan is pretty much back to his normal. He still doesn't want to come off of the vent any, but is tolerating his PMV trials inline with the vent. Logan is talking so much right now. I have been able to get him to say "mama", "dada" and he has started saying "nana"! Such a smart little guy :)

Next Thursday we are going to UNC for Logan's ultrasound, appointment with Urology to schedule surgery, and his swallow study. It's going to be a busy day and I hope Logan does well with it all.

We are getting all kinds of new equipment for Logan. He's getting a vest for chest PT (which he hates), borrowing a kid cart with a vent tray until ours comes in, and Logan is getting a big boy bed soon! His bed will be able to recline him, and has rails on it. We are super excited :)