Feeds Update
Sam’s g-tube (feeding tube) feedings are going really well. He’s tolerating the small amounts we are giving him. To put it in perspective, we are slowly giving him about a med cup and a half three times a day. The mixture consists of puréed green beans, infant oatmeal, and his specialized formula. Yum.
We were very excited to finally be able to start the diet Cincinnati Children’s had told us about last May. It’s a diet they came up with for gaggy/retchy kids who don’t eat by mouth. This is Sam to a tee.
Sam’s dietitian (who is the best) has put a lot of work into figuring out this whole thing after collaborating with a Cincinnati dietician only a few times. Everyone here is excited to try it and see the results.
There are many reasons for us to hope he tolerates his feedings, but obviously, we ultimately want to avoid another surgery.
Because we are going so slow with his feeds, it will be a while before we can get rid of the PICC line. As I’ve told you in the past, bathing Sam is a two person job and downright scary. Sam LOVES the water and is constantly trying to drown himself, literally. With the trach, he can’t be fully submerged in water, but because he has no idea the consequence is deadly, he continues to try. With that in mind, washing his hair has become an art for us. Now, add a PICC line on his arm that can’t get wet. Hmmm…
Before last week, Sam hadn’t had a real bath since November. Yes, you heard me right, that’s over two months ago. For all you mamas out there who feel guilty your little ones have gone too long without a bath, don’t. Sponge baths can only go on for so long though.
Bath time with a trach, PICC line, and a feeding tube. We did it.
Hmmm…what can I do next?
HALT.
All that writing was before we ended up in the dreaded Children’s emergency department (ED). Sam’s skin at his PICC site was looking fabulous. Last week, we noticed some irritation. As the week wore on, it didn’t get better. Bummer.
After we sent another picture of Sam’s arm to his infusion nurse, she called right away, “I’m so sorry, but I think you need to take him in.” Exactly what you want to hear on a Friday at 4:00. He had zero symptoms so it felt very odd taking a happy little boy to the ED. In a weird way, it felt good to have the folks in the ED see what Sam is like when he’s himself. When we bring Sam to the ED, it’s because we have exhausted all of our home treatments and he’s miserable.
As a medical mama, you miss a lot of your other kids stuff. I’m grateful to the people in our community who are aware of this and send me pics.
Thankfully, we only stayed one night. In Sam’s history of hospital stays, a one nighter has only happened three times, and the first two were day surgeries when he was a baby, because they didn’t quite trust him yet. He was treated for cellulitis at his PICC site and twenty-four hours later, we were on our way home. Of course, everyone was happy to see him on the in patient side.
The next day around 4:30 p.m., Sam fell asleep on the couch watching his iPad. Uh oh. This is not like Sam. I hooked him up to his pulse oximeter (checked his heart rate and oxygen). His heart rate was a little elevated. Shoot, but not too concerned. As his heart rate went up, he started to develop a fever. Crap. Oh, Lord, please don’t let it be sepsis. After a few phone calls to the infusion team and his doctor, we were advised to bring him back to the hospital. Sepsis is always a cause for concern with a PICC, but the risk goes way up when you have a skin infection at the site. We packed ALL the things again and headed back to Children’s. My fear was trying to set in, but I was pouring my faith into my heart.
We checked in, they got his vitals, and we were in a room in record time. The nurse set up the blood culture labs before the doc even saw us. She was ready. The doc came in and ordered the necessary tests. They drew labs and swabbed for all the viruses. Side note. One of the beauty’s of having a PICC is not having to get poked. We waited.
Sam and Dad are sleeping and mama is praying it’s not sepsis.
The doctor came in the room and my heart beat a little faster. At that point, Sam’s labs weren’t concerning, but Sam was positive for Covid. Thank goodness!! He likely picked it up at the hospital when we were there, but who knows! Poor buddy. If you’re wondering why I was so happy about Covid, it’s because I’ll take Covid over sepsis any day. We packed everything up and headed home. It was a four hour round trip and another late night, but record ED time and we got to go home.
Other than a low grade fever, Sam’s rocking Covid so far. Praying it stays the course it is.
Thankfully, through all this, he’s still tolerating his feeds.
We were surprised when he actually left the mask on for a couple of minutes at the eye doctor.
Sam Strong
Faith Over Fear
Prayer Request
For those of you who believe in the the power of prayer, please pray for my uncle. He is currently in the hospital with Covid. We are praying they can get his oxygen levels up. Please pray for God’s peace that passes all understanding for his family during this time of uncertainty for them.
Lord,
You are good and we thank you for that. We ask for you to give your breath of life into Uncle Jerry right now. We pray his oxygen levels will go up and he will be able to go home soon. Give his family your peace that passes all understanding while they wait.
In Jesus Name,
AMEN!
Covid and Then Some
April was not so fun in this house, but thankfully we have all recovered. Most importantly to us, Sam is okay and we kept him out of the hospital.
It started with me not feeling too great. I already tested negative for Covid earlier in the week because we knew we had been exposed. When I started feeling cruddy, I tested again. Negative. Whew.
I had several rough days. Thank you Lord for home care nursing! On a normal day with Sam, we are incredibly thankful for our home care nurses. When he gets sick, even more grateful. Add me getting sick on top of all that. Home care nurses. No words.
Sam tested negative too, but then started getting sick a few days after I was feeling cruddy. Oh shoot. He was really sick for a good six days. He was on oxygen for four days and all the home therapies we could do that aren’t legal in most homes. We did get very close to having to bring him to the hospital, but we were able to keep him home. Again, home care nurses. Priceless.
About a week later, after I had started feeling better, I couldn’t smell or taste anything. Wait a minute!?!? I went and tested again. As I suspected...positive for Covid. What?! Those of you who have experienced these symptoms of Covid can understand how annoying it is! I’m happy to say it didn’t last too long.
Sam’s pulmonologist sent a nurse to the house to test Sam. Positive. Bummer. There was a lot of praying on my part, that he would be okay and we would be able to keep him out of the hospital.
Sean tested positive. The next day he started feeling cruddy. He was all excited to be able to get some things done around the house, but he was down for the count for almost ten days.
Will and Abby both tested negative, but had to do distance learning until their quarantine was up. Have I ever mentioned how much I love distance learning? Oh yeah, cause I don’t, not even a little. Because Abby ended up testing positive, she was able to go back to school a few days before Will. I’ve stopped trying to make sense of all the Covid rules.
During all this hoopla, I found out my grandma passed away. She was ninety-five, went peacefully, and although she was dealt a hard hand of cards in life, she lived a good life. Her legacy? She loved Jesus, taught us to pray, read our Bible, and have a relationship with Jesus.
Towards the end of her life, she could barely speak. I know she recognized us when my sister and I saw her for the first time in a long time. She clearly said two of my four children’s names. It wasn’t by chance she squeezed the two names out I have fought for on my knees in prayer countless times the past four plus years. I believe it was her heart that said those two names that day.
We didn’t get to go to her funeral, but this is where technology is a blessing. Thank you to my brother-in-law who held his phone up the entire funeral service so I could “be there”.
Me, and how I remember, my sweet Grandma.
While Sam was sick, he was scheduled to have an upper endoscopy to check on his esophagus. As we suspected, surgery needed to be rescheduled.
To recap, Sam’s last dilation was in January. His surgeon told us, when Sam can go for six months without a dilation, he’ll give us the “a-okay” to go to Cincinnati.
Tomorrow, Sam will have his rescheduled procedure. It’s been almost exactly four months since Sam’s last dilation. We are hoping and praying, he will not need to be dilated.
Sam Strong.
Faith Over Fear.
Humor for the Day
In our house we have playfully deemed my husband the principal at our school. When my kids start driving me nuts, I let them know I will be making a phone call to the principal. They usually start behaving real quick.
The teacher got a warning from the principal the other day.
This letter came “anonymously” from...my daughter.
I did tell the principal he should start video taping my classroom to see what’s really happening.
Happy homeschooling!
Hang in there, the school year is almost over!