Saturday, February 27

Tommy's tonsil and adenoid surgery

On Thursday Tommy had his tonsils & adnoids removed, new ear tubes placed, blood work drawn and an echo. This story is long, not pretty, but we made it!

Aunt Tami and Grandma Sue came along to be wonderful help physically and emotionally on surgery day itself. We started out in the sibling playroom for an hour while we waited for our surgery time. It was the only place that mommy could find without food! Since Tommy had gone without food for awhile and couldn't eat until after surgery... it was hard being around folks in the lobby that were eating. So we played instead. Thanks aunt Tami for playing with the car track with me.Then we got back to the famous waiting room. Cousin Andrew lent us his video machine and great movies and it kept Tommy's mind off of all else. The surgery was a tad bit delayed so we waited... and waited.

And then waited just a bit too long. And he fell asleep.

When the anesthesiologist came to get him for surgery HE DIDN'T WANT TO GO. So mommy had to gown up and take little Tommy back. I cannot adequately say how much I don't like taking any of my kids back to OR. It's just a place that this momma's heart cannot see or even begin to image. It's a place that I know there are doctors and nurses and staff trained to care for Tommy. But I don't want to see that room. Instead, I had to swallow all of those feelings down hard and carry my little son back to the OR and help them hold him while the orange smelling gas mask attached to his face started to relax him. I was sad beyond belief. Prayerful that God would watch over Tommy and take his anxiety (and mine) away.
After the surgeon gave us the good news of the results.... we were off to our room to get settled. Tommy was very sleepy and on 3 liters of oxygen which we knew was the reason we would stay overnight. Once he got to the room I rocked him from 5:30-9:30pm and so happy to have in back safely in my arms. From there things got a little stressful.
We tried to wean oxygen a few times but as usual he desated. I finished rocking him at 9:30pm and place him in his crib. I 'nested' in our isolation room... unpacked stuff from our suitcase, cleared garbage, arranged his g-tube supplies so I could find in the dark easily, made the pull out couch with blankies and in general got things 'just so' if that is possible while in the hospital. I remember laying down at 10:15 and thinking to myself, I'll sleep for an hour (if I get to) and then I'll change Tommy's diaper again and feed thru g-tube. Just as I drifted off to sleep, very comfy, with the contents and location of everything in our room memorized.... the nurse rubbed my shoulder and said "Sandi I have some not so good news..... we need this room.... you and Tommy will need to move down the hall to a shared room". My only reply was "SHIT".

It's not fun moving in the dark, by yourself (a nursing asst did help), when your child doesn't feel good. But I know these nurses only do it when they absolutely need to. So off Tommy and I went to our new room shared with a sweet little girl. I nested again, fed him thru his g-tube, changed his soggy diaper and then..... rocked him to sleep and thought I would dare to lay down again and get some rest, it was about 2 am. I was tired. Tommy was comfy, dry and medicated and tummy full. I remember I did my usual routine while sitting in the rocking chair of brushing the wires and oxygen on the floor over to the left so my feet, without looking down, could safely carry Tommy to his crib. I can remember counting the wires... iv... oxygen... chest leads.... okay good to go. As I placed Tommy asleep in his crib he started to fuss... and I looked down at his face glowing from the monitors and noticed it was all squeeshed. The oxygen must have gotten caught under the chair and I didn't have enough line to make it to the crib. So I picked him back up, now he was crying much louder and in my confusion I was looking back to the rocking chair and noticed the oxygen and then back to Tommy's face and noticed blood smeared over his face and dripping from his hand.... his iv had been tugged and pulled out. The nurse had placed the iv stand on the wrong side of his bed, the left side when his iv was in his right hand. And I didn't notice. I grabbed his hand and started applying pressure to his slippery hand. The blood made the floor slippery, scared him because it was slimy on his face .... in general we both freaked out. I forgot where the call button had been placed and fumbled around with a 35 pound kid on wet floors to find the call button. I heard a voice from the other side of our shared room sweetly say she could help. And within a couple of minutes the nurses came in and we got his hand securly wrapped. Heavy sigh. I insisted the iv be left out at least until morning. I rocked him back to sleep and again placed him back in his crib. It was near 4am now. I curled up on the little couch, slept in the fetal position, twirling my hair and sucking my thumb until nearly 6am.
Tommy slept thru until 8am yesterday. And then the oxycodone became our enemy. It made him constipated and mean. The pediatrician wanted Tommy to nap during the day without oxygen and stay about 90 oxsat. But he just couldn't nap. I rocked and rocked. We watched a movie. I sang. Grandma Sue and I bathed the blood from the night before off of him, hoping a warm bath would soothe. I fed him. No nap. It was nearly 3pm when the pediatrician finally agreed, he's not going to nap but has been off of oxygen all day and kept above 90. And we got the green light to leave. My parents and I packed that room up within 5 minutes. Literally we were waiting at the nursing station for the discharge papers. Ahhhh, home.
Once home I set up the playpen beside Hannah's bed and Tommy slept there for 12 full wonderful hours. I woked every three hours to medicated, change diaper and feed thru his gtube. Sweet sleeping Tommy! Him and Liam were so glad to see each other. I have bathed them this morning and we got lots of snuggles! Liam and I have been busy with arts and crafts while Tommy took a morning nap. Tommy is LOVING ice cream, yogurt and his beloved banannas. He is just on tylenol now and doing really well.
And that's our story :) I'm off to get a manicure and pedicure with my sister and probably have a glass of wine later tonight! So glad to share with all of you that we made it thru. It wasn't pretty but we did it!

Tuesday, February 23

Surgery on Thursday

Tommy is ready for surgery on Thursday morning. He will get his tonsil/adenoids out, new ear tubes in, an echo and bloodwork drawn..... all while under anesthesia :)

Bags are almost packed. I'll be going to my parents the night before so the drive on Thursday morning at 'oh dark thirty" won't be so bad. My parents are supportive with my favorite dinner and I'm sure a little pep talk.

Since Tommy is on antibiotics right now we decided to keep him in school yesterday and today. And I really think that was the right decision, he is making so much progress in attention span while there, I would have been disappointed to have him out for the whole week.

We had friends over last night for dinner, so Liam played with his friend Mitchell (Tommy chased him all over the house). Before dinner, I got to sneak in an hour at the gym. Nate and Hannah were at their dad's house last night, but they are doing really well. I forgot to say that Hannah made honor roll at Sehome and is competing in Tacoma for cheerleading this week. Nate is getting ready for spring bicycling, his moles class just ended and there is a LONG ride this saturday, he registered for a/p and honors classes for the remaining three years at Sehome with the guidance counselors last week. As for Colin, his elbow grease surprised me this week, our home wireless internet got set up, vacumming and mopping occured, dishes and laundry done.... all with a smile! Thanks hubby.

I've got lots of pictures from our active last weekend.... maybe tonight I'll post.

Saturday, February 13

Homemade scented playdough

If only this was scratch and sniff. Mmmm. I used the basic playdough on the stove recipe to make a nice soft playdough, colored it, and added smelly scents. Mmmm. I think I like it more than the kids. The little clipart atop the containers was just for my own pleasure!

Saturday, February 6

The brawl and a few cents

The children's appt for an echo and follow up visit to cardiology (this happens every 6 months) ended up in a BRAWL. Tommy and the echo technician, with mommy trying to restrain him enough for the echo to be completed. But let me share that even with Tommy's hypotonia, he is one strong boy! It felt like the echo tech gave up to soon, I was encouraging her to continue and kept saying "trust me, he is fine, the screams will end exactly at the moment you stop". We got just enough pictures from the echo for the heart doctor to clear him for the T&A surgery later this month. His exact words included reminding the anesthesia folks that the right lung needs special care. It was at that moment that I realized I needed someone else in the room to help understand and ask the correct questions. But my mom was over in the sibling playroom with Liam (I misread the rules and even though he is 3, he isn't potty trained yet so still needs an adult to stay with hime, oops). So I put Tommy in his stroller and told the doctor I needed him to either write down what I need to say to PASS clinic or include in his notes. But I need to understand also. We talked for a bit and with Tommy in his stroller it was MUCH easier for my total listening to be on the doctor. In addition to the T&A surgery, he will receive an echo under sedation so it will be easier on all. And there is interest in sedating him for echos from now on. Whew! God definately had His hands wrapped around all the folks because the visit went from bad to very good and Tommy's care plan changed for the best for all.

On the way home, we were treated to my mom and dad's for a wonderful dinner. My mom can make the best tasting pot roast you have *ever* eatten. My dad had spent much time pruning their apple trees (which I believe are at least 50 years old). And their farm looks so beautiful in this spring like winter we are experiencing.

And then made our way slowly north back to Ferndale. I ran into the grocery store in town with the boys really quick to grab a few things and decided not to bring my entire purse with me, just grabbed some cash, and then could hold little hands better in the parking lot. Well at the check out I was a few cents short, frustrated, angry at my choice to not bring my purse, and discouraged that I would tote two kids back to the car to get change... and exactly at that moment God placed a friend in my path. A friend that has inspired and encouraged me these past three years and always looks terrific even when she is running out to the grocery store for diapers. A friend that has never judged my decisions but rather shared that there are always different paths and left choices and decisions about my family, to my family. A friend that has so many talents but never boasts. A friend that is a great mom. A friend that had 16 cents :) ".... a sweet friendship refreshes the soul..." proverbs 27:9.

Preschool makes learning fun

On Thursday we spent the day at preschool. I wanted to observe the boys in their activities and see if I could suggest anything to help with Tommy's attention issues, I was speechless though. I'm TOTALLY impressed with the speech, occupational therapy and sign language services that the boys are receiving there. These therapists are *amazing*. It helped me to meet with the SLP because Liam's 'homework' for speech didn't make sense to me, but when she showed me the short term and long term goals and why these excercises work, it makes sense now.

Their preschool teacher Mrs G, their sign language teacher Mrs L, their aide Mrs M, the gtube feeding aide Mrs L, are in the classroom with the ten kids. The structure, pace, and accessibility for each kid is so delicately addressed. Kudos to that team at Cascadia! Super duper stuff.

Wednesday, February 3

For a few days

The next few days will be filled with school for four kids and appts at Children's. But we will miss daddy! Colin left very early this morning to head to Montana because his uncle passed away. We will see him again on Sunday. Take care daddy, we miss ya!

Tomorrow morning I'll be in Tommy and Liam's preschool class to see how things are going. Then we are traveling down to Children's for Tommy's every 6 month cardiology checkup. He will have his typical echo and then we get to talk to the doctors about his moderate mitral valve leak. This is also a clearance from them for tonsil and adenoid surgery on the 25th. We will go to PASS clinic on the 18th, but need the heart folks to give their okay for the surgery. Please pray that my anxiety for this upcoming surgery will be kept in check by the benefit that Tommy will experience. I'm just so plain worried.

Nate and Hannah have officially started their second semesters and are enjoying a few new classes. Both did very well with their grades from first semester, I'm so proud of both of them. It's a strange feeling parenting young adults, they need you ALOT less than I ever expected. I feel a bit lost lately in parenting both of them.

Grateful heart for: Ilex bum paste, my family & friends who continue to encourage me thru the rough parts of life, our great help in the afternoon with the boys Janna, coffee, Hannah's cheerleading competitions, and God. Pictures to come these next few days, hopefully!

Tommy Adventures