Wednesday, January 27, 2010

Dr. Appointment

Today was our trip to Ft. Wayne.

Mikan had four orifices examined.
1.) First a little surgi-lube was used to get some fecal matter out to check for bloody stool. Apparently, he had blood in his stool.
2-3.) Second, the doctor looked in both ears for infection (no infections found), but I'm not sure the GI doctor has looked in many ears lately. So, I'm not sure if this is fact.
4.) Mikan's G-tube was changed. The new g-tube is larger, so when we switched over it was quite a scene. Upon the insertion of the new g-tube, his site started bleeding and he did an almost complete sit up (out of pain).

Things that go without saying today...
Mikan is tough.
Jenna is tough. (half an hour after getting home from Ft. Wayne she went to class)
Our water heater needs replaced.

Dr.'s Orders as of today...
-Miralax twice a day to clean out the system
-Soda twice a week to clean out g-tube
-neosporin on g-tube site and rotate the g-tube
-something else I forget

Tuesday, January 26, 2010

One More Day...

This past weekend John and I went out with my dad and brother to see The Comedy of Errors at the Chicago Shakespeare Theatre. The play was entertaining, rejuvenating all of our interests in live theater. However, on the way home we got a phone call from Mikan's nurse informing us that, yes, again, his g-tube balloon burst. So, once again, the site is irritated and tender from the reinsertion of the tube. We see a pediatric GI tomorrow. I pray this back-up tube will last just one more day...(and that we get some answers from this new doc).

Mikan also is recovering from an enterovirus that manifested itself in a mild rash on his face. That required another trip to the doctor on Friday night after the spots continued to spread. But overall, his symptoms have been mild and we've probably already seen the worst of it.

But he is finally vocalizing pretty regularly, as this video illustrates. And although he tends to take a tumble periodically, his cruising continues to become more controlled.

Since he has broken his cup, he's refused to take any liquid from anything else. I ordered more of his cup online (I couldn't find it in any store), so I hope he just picks up where he left off when it arrives.

Wednesday, January 20, 2010

A Winter Outing

On the way home from Great Grandma and Grandpa's house this weekend we stopped by Cabella's and the Bass Pro Shop. John insisted it was some sort of rite of passage for Mikan. With the exception of doctor's office visits, this was the first (and possibly only) winter public outing for Mikan. He enjoyed all of the animals and did the dog sign and barked at anything with fur. Mikan also had a few cousins visit this past weekend. He loves being around other kids.

His cold-like symptoms have diminished. A few days ago he was still digging in his ears, but we haven't noticed it in awhile. He slept with his PMV on all night last night for the second time ever and rested well. A night without suctioning was enjoyed by everyone. He still tolerates his trach cap during the day, so we hope this means a good scope result.

And unfortunately the sipping from the straw has been halted. He dropped the cup on the ground and it cracked. I haven't been able to find a replacement for it yet. He refused to drink anything except Pediasure from it (and even then it was only a few sips each feeding). I tried to give him another cup with a rounded straw, but he won't touch it.

Friday, January 15, 2010

Mikan's New Pet

Our friend Angela brought Mikan a Build-A-Bear Dog for Christmas. He is in love with it. I have never seen him interact with any of his toys this way. We think that he thinks it's real. He talks to it, kisses it, and signs for it.

Mikan still had fluid in his ears this week, which forced us to Mikan's new G-tube finally arrived (A Mini-One non-balloon). We have an appointment scheduled in Ft. Wayne at the end of the month for it to be placed. We still suspect Mikan may have a granulation tissue problem on the inside of his stomach as well as the outside, so we're hoping this new pediatric GI has some answers for us.

Mikan's ENT and pulmonologist both sound positive about removing his trach this spring. We just scheduled another scope for early March and depending on the results, we may be able to set-up a three-day hospital stay where Mikan is studied while he is capped and then decannulated. If anything abnormal is growing in his airway, it will be removed, and then we will most likely have to wait six more weeks for healing before another decision is made.

Saturday, January 9, 2010


This past week when Mikan's speech therapist visited, Mikan decided he was going to drink from a straw. We haven't tried this with him in months, but on Wednesday, he decided he's made us wait long enough for him to swallow food.

We are obviously excited about this progress and what it means for his future eating potential.

Mikan seems to have recovered from his cold, but he is still digging in his ears. His antibiotic has run its course, so we hope he doesn't have any ear infections still. He sees the ENT Wednesday, so we will know for sure then.

Mikan's signing continues to progress. We are constantly amazed at the ways he can communicate with us. He can probably use or imitate around 100 signs. His only verbal word is "ball," but we are also seeing progress in his vocalizations.