Unplanned 3-Night Hospital Trip but Home in Time for Easter

Well, Mason's oversensitivity after tube surgery just kept getting worse...at least the retching part, and got to the point we realized it couldn't just be ear tubes. He seemed sick, nauseous, a little feverish, and seemed like more than "just reflux" to us (usually with that he is full of hiccups, watery eyes, coughs, etc). It wasn't like that. It was like, green around the gills type, very sick to your stomach retching. He just looked miserable. We wondered if he'd gotten a tummy bug...but this was 9 days out? How could it still be that? Then his G-tube leaked and we changed it to a new one which promptly burst the next day so we had to get a backup from the hospital. When he had a seizure Thursday morning and started crying inconsolably after his afternoon feed Thursday, we knew something was off. We didn't know what because his ears theoretically should be fine...there was no infection at the time of his tubes, and no drainage from them all week. Still it seemed like the nausea/fever/seizure symptoms were red flags that SOMETHING infectious wise was wrong. I called Nursery Follow-Up at the hospital and asked where we should start, since we didn't know what doc should see him or what system might be infected...GI had already offered reflux meds and they weren't helping yet. Probably wasn't ears. Pediatrician routinely just refers us to the hospital. So she talked to his neurologist and said to bring him to ER and they'd run some tests; if no infection was found, their department would increase his seizure meds since he had not had an increase in several months (in fact we're tapering down by not increasing for weight changes).

At the ER, they did more x-rays (poor guy is probably glowing by now) of his chest, GI system and mickey tube placement, blood tests, and urine check. The urine check came back positive for white blood cells. Mason was born with a kidney problem that makes him supposedly more prone to UTIs and was on preventive antibiotics for it but a while back they took him off after good results on a kidney reflux test. The ER doc assumed this was Mason's problem and needed to be admitted for antibiotics until he could better tolerate his feeds. They also had to wait 24-48 hrs to get the results of the more lengthy urine culture to see what grew and how fast. The other docs he saw in the hospital thought it was unlikely that he had a UTI based on the low number of cells in the first sample, but Brian and I were pretty convinced it was the problem based on the low fever and vomiting. The culture did end up growing 3 different strains of bacteria and one in particular they think was causing most of the problems, so they switched his antibiotic for that. He also changed from Pepcid to Prevacid in case reflux was contributing. He got to come home about mid day today (Easter) :D

Happy to be home, enjoying some Easter goodies :D

 He's about the same I guess, maybe a little better. Still retching some, and very crampy from his antibiotics in spite of giving probiotics too. It is manageable though. Just praying it does the trick and his system gets over all this yuck soon. They have ordered a kidney ultrasound for him and he would've gotten it today; however it is Easter so we have to go back for that after our genetics appointment in about a week.

His thyroid test (which I have begged for since he was born but was always denied because "it isn't really possible to have a thyroid problem as a baby if it wasn't caught on the newborn screen) ...also came back abnormal like we have suspected ever since he first couldn't gain weight then started gaining like a crazy man. They are in such disbelief about this high TSH that they want to repeat the test in a month to make sure it is for real/consistent before they treat it. Sigh. Pray for my patience and Mason's health as we play the waiting game again. Pray that he isn't being impacted negatively by this, as a thyroid problem as a baby is nothing to mess around with...by itself it can cause hypotonia, developmental delay, weakness, etc (he has all this but how much is related to his thyroid and how much to his brain malformation is the million dollar question).

In the meantime we are celebrating this very special day and remembering one of my favorite songs ever..."this child can face uncertain days because HE LIVES!"

A Sweetie Pot Likes His Sweet Potatoes :)

Then Jesus said, “Whoever has ears to hear, let them hear.” Mark 4:9

Ear tubes are in, infection is gone, and we feel safe to let Mason try food by mouth again (didn't want to do much of that when he was hurting to swallow since we want the associations he has to be positive with food.) I don't have to do much explanation of his response...you can see for yourself what he thinks of his first oral snackage in a long time...

Thank you all for the prayers for the tube surgery...it went AWESOME! They used the gas, and once he was out, they gave an IV backup which they didn't end up using other than to hydrate him. In addition to the tubes, they were able to get his eye exam (still no glaucoma drops needed at home, yay!) and bloodwork for thyroid (still waiting on those results). He had only a touch of nausea when he woke up and wasn't really upset at all ... just sleepy :) The next day he had some tummy issues that resolved mostly by mid-day.


We know he is hearing a little better at least, since the tubes, because he is WAY hypersensitive right now. He was startling a lot when he woke up from the procedure, and now he just is very defensive about what he touches if he is afraid it will make noise. While he usually likes to kick and play generally, now he holds his legs very close to his body and only reaches out to explore with hands or feet if he feels very safe. He gets VERY upset if someone does it for him. He is also really sensitive to movement and full tummy now, more than usual. So it will take a little adjusting before his senses calm down I think, and adjust to this "new" sense of hearing performing better! Even so he has started laughing over sounds now, not just things that feel nice (which is his usual smile stimulus). He laughs over his "jingly" lion and ball toys, and even smiles after turning to the right (which he doesn't normally do because of his torticollis).

Overall we are encouraged that the tubes should really help him in the long run, and are praying they stay put a long time and don't clog up. We're also praying he tolerates the new foods well since he isn't tolerating much in the way of formula increases (and we are supposed to be working our way to 27.5 oz a day...right now he's at 25 oz and seems to finally be in a holding pattern on his weight..but he's getting long too so this is good news as long as he continues to make steady, slower gains--should make it easier for him to move/build strength now that he is more in the 50th percentile than the 75-90th that he was in a couple months ago).

The Countdown to Ear Tubes...Can't Come Fast Enough!!

Yes, Mason has had quite the ordeal with those poor little ears of his. We have lost count of how many infections he's had, maybe 7, since he's been home...not even sure if it's separate infections or just the same couple bugs that don't ever get better. We just know it's been a long haul and many restless nights and way too much Advil and antiotics (that don't work). We just finished Biaxin and the state of his ears after it was done sounded even worse than before he started...now we are back to Cefdinir which sort of holds things at bay for a day or two. But both the boys and I are sick again with a cold so with all the congestion it's not looking promising for much improvement by the end of this course either...

BUT we are so so excited to have ear tubes on the schedule, we wish it could be today, but "soonest available" is what we got....

"Hey did somebody say something about ear relief...FINALLY??"

Next Tuesday, we're supposed to be there at 5:30 am. They said they'd call if someone else bailed out earlier (and I highly doubt anyone waiting as long as we have will cancel if their baby is hurting too). Anyway, the other good news is that during the procedure, his cornea specialist wants to come and do a good dilated eye exam (Lord willing, we sure hope so!!), and check his eye pressures to see what his glaucoma is doing. We may even be able to do some labwork while he's under (assuming his veins will cooperate; Micah's didn't during tubes, so we'll see).

"YAHOO!! I can't wait, Mommy!!"

Our biggest prayer request is that he has no complications from anesthesia and that they'll be able to do it with gas as opposed to IV/intubation. Overall it shouldn't take really long ... maybe half an hour? And of course that everything they want to accomplish is a success, especially the tubes giving him some relief and hopefully helping him hear better too :) Pray for that part as well...he is very sensitive to anything "new" because of his low vision he's hypersensitive in other areas ... we imagine if he does hear considerably better, it might be a little traumatic for him after not hearing very well all this time. Pray this transition is not difficult on him and that he is able to quickly enjoy the benefits of having it done. And pray too that the tubes stay in, and function, for a long, looong time :) Thank you all!!

Hmm.. I like the idea of tubes...but not goin' anywhere without Mickey :)

He Loves His "Buzzy Puppy" :)

"A cheerful heart is good medicine..." Prov. 17:22 NLT

Uncle Tim requested a vid of Mason laughing ;) Enjoy!

A Week of Firsts :)

Every day that passes brings us closer to spring...in fact, the boys got so excited about the warm weather that they dressed up in summer clothes ;) We saw the first buds on our tree in the front yard (it's a tradition to look for them) and so we've thoroughly enjoyed finally getting to be outdoors and let Mason experience some of the big, wide world :D
This last couple weeks, for the first time, he...

• Went to the park with Micah (two parks, actually!)

• Ate a restaurant (well, "ate" would be overstating it a little., but he did come with us to Jack in the Box!)
• Shopped at Home Depot, riding in the back of the cart in his car seat
• Strolled around the mall (he especially loved rolling across the fun light pad projector thingy)

He's also doing some fun new things even at home...

• sitting in his high chair, playing with toys

 

• tolerating his bath much better (check out his fresh, clean, curly hair!)

 

• Jumping in the Jumperoo without his Huggabebe support pillow

• trying out his new Child Rite seat (the oversized bumbo for kids with hypotonia and goes to 65 lbs, yahoo!!)

• Meeting his Great Grandma, Great Aunt Donna and Great Uncle Allen (look close, his legs are in the pic!) :D

Learning to laugh (hehhh!!)

Micah had his own share of firsts this week, including, and best of all, trying ICE CREAM (yes, real cow milk!) for the first time since we knew of his allergy at age one! FINALLY, a dessert he loves as much as me :D Hopefully he'll still love it at his birthday in June...

 He even got to get one from DQ later this week :D Can't wait for the custard shops to open on Monday!!

He also got to build a cool Lincoln Log mansion/hotel with Great Uncle Allen :)

Thank You, Lord, for spring!!