Ryan turned 8 months yesterday. He is still as cute as ever and even gained a little over a pound in the last month. Yeah! We admitted him at 16 and 1/2 pounds back in July and he hovered there for quite some time. In the last month though he started packing on the pound(s) again.
We still don’t have any further information about his diaphragm. They are giving him some time to strengthen it through a CPAP machine (the same machine they hooked him up to a week ago Friday connected to the nasal tube) for positive pressure (PEEP). He remains comfortable with this support. Thankfully he hasn’t needed intubation (a.k.a. the ventilator). He struggled a bit late last week, but they were able to get him comfortable again, or maybe it was the three hours of mommy holding him. Either way, his sats leveled off and he was able to keep his nasal tube.
For those keeping track, he is still on an Ativan and Methadone wean. They slowed down the wean today as he exhibited signs of withdrawal on Saturday and Sunday with a fever and agitation. He’s very snotty today so it might also be a tiny cold. He was blowing snot bubbles out from behind both of his nose tubes (feeding and nasal tubes). It seemed like my entire visit was spent wiping snot from his tape and asking the poor nurse to suction the snot again.
We also did two sessions of exercises and stretches which Ryan hates. I can’t imagine having to do this with him every day (although if that meant having him home I’d do it in a heartbeat). He cries when he’s being stretched and it breaks my heart. After a few minutes though he settles down and then fusses again when he’s had enough.
No word on the H1N1 shot for the girls. My pediatrician is still awaiting their shipment. I am trying to make other arrangements, but so far the shot is slow in coming to our area.
On that note, Sherry – you commented about the side effects of the shot. Can you please give me specifics? A website or article reference would be great. I obviously don’t want to compromise the health of my two healthy children.
And if you would please keep those healthy children in your prayers. Their friends are dropping like flies from strep, H1N1, and the regular flu. As of yet, my girls are not exhibiting any signs of sickness or the crankiness of presickness. The crankiness of not wanting to go to bed, yes, but not of sickness. I’d like to keep them healthy so I don’t take any germs to Ryan myself. I wore a mask today to be safe since three mothers called me between Sunday and Monday morning giving me the bad news of fevers and vomiting in their houses. Yuck!
The good news: amid the fussing and complaining I received during therapy today, Ryan also gave me some smiles. Here is proof:
(c) 2016 Leighann Marquiss
Comments (19)
no H1N1 here but abby is finishing meds for strep and i am taking lexi to the dr today.
happy 8 mo birthday little ryan. we love you.
still praying for him. will include the health of you and the girls also.
love you all. thanks for the cute smiley pix.
He has some amazing long and beautiful eye lashes… happy 8 months baby boy.
Once you get home and mobile, we’ll have to fatten you up with protein shakes. LOL
Happy 8 months, Ryan! He is such a beautiful boy. Prayers for you all.
What a beautiful smile! Happy 8-month day to Ryan, we’re keeping your family in our prayers.
What an adorable picture! Happy 8 months, Ryan!! I remember those therapy sessions with Polly, by the end of them I felt like crying myself! Sometimes I did. Love and prayers to you all!
Richelle
Happy 8 months little boy! He is so cute, I love the smile!!! We just got the kids their reg flu shot. I don’t know what to do about the H1N1. Our ped doc won’t give it with good reason. He’s concerned about the rush and the amounts of mercury in it. We have had half a dozen schools in Colordo Springs that have been shut down with it. Everyone around us seems to be getting it, I am praying God would lead me to do the right thing.
We are praying for yall, I pray you all stay healthy and Ryan continues to move forward.
Congrats to baby Ryan on 8 precious months, God is good. I did hear that Fairfax County will be giving H1N1 shots this weekend through out the county, so you may want to check with the local hospitals to see if they have heard anything. They are in limited supply so hopefully you guys can get them. Praying for you all and especially that the girls stay healthy.
I love the picture of Ryan. What a cutie! It made me smile too!
So glad to hear that Ryan is doing well! I love seeing pictures of him and this one was so sweet I wanted to cry. I’m glad you got to hold him, too. I’m sure that did YOUR heart some good. Thank you for keeping us updated on your sweet boy and precious little girls. Prayers are being said for you guys in Arkansas!
Blessings,
Leslie
Happy 8 months Ryan!
Leighann we are having to get all sorts of vaccinations ASAP because of the disease scotty came down with. It is very SCARY but we are trusting the Lord to protect us all. Scotty has no immuine system adn a potentially fatal interation of one of his meds and the flu. Thursday all my kids go for hte vaccines… the older two get H1N1 and Scott gets regular flu. Then after a cvertain amount of time they will all get more. Scott can’t get certain vaccines yet due to having IVIG and a severe reaction to it. He has turned into a heart patient and is a t risk for all sorts of things now. He is on baby aspirin to prevent aneurisms and heart attacks… TWO years old! I never thought we’d be here but the grace of God is abundant and we are learning how to deal and survuve and even thrive amidst the changes. All the choices and decisions are at times overwhelming as you know. WE never would have done H1N1 for them but now all that has changed and the benefits outweigh the risks. Ultimately our trust has to be in Christ adn I am continually learning this leasson as a mother as I am sure you are.
You are constantly in my prayers, especially as right now I am thinking of you as I try to understand all these changes for us.
Sending love
Aww!! I love his smile! Happy 8 months Ryan! He is absolutely adorable! Praying for you all.
Precious, precious smiles! Happy 8 month bday, Ryan!
As for H1N1…we struggled with the decision as well…..for probably a similar reason you struggle….our plate is full enough without our healthy kids getting sick (from the vaccine)! Here is a website that was helpful for us…..http://www.nytimes.com/2009/10/10/health/10primer.html?_r=1. Hope it is informational for you as well. Plus our pediatrician (and 2 different cardiologists) were very pro-H1N1 vaccination (our peds own son was the first to be vaccinated in our office)….which was very helpful in our decision making process. Ultimately….I agree 100% with Sarah Joy when she said….”WE never would have done H1N1 for them but now all that has changed and the benefits outweigh the risks.”
Looks like we might be seeing you next week….Aron has a cath scheduled for Thursday and I feel certain we will be in CICU at least overnight.
Hey Leaann, this is teresa dumpe. I hope you don’t mind but I have been reading your blog. And I want to let you know that your girls need the H1N1 vaccine to protect little Ryan. Your pediatrician should be able to go over the side effects with you. But from my understanding it is minimal compared to getting the virus and passing it on to Ryan who is an infant with multiple health complications and susceptible to catastrophic complications from H1N1 virus. I hope this helps. Teresa
Wish I could hold you today, little 8-month-old. Love, Marmi
happy 8 months. you guys make me smile. it helps ease the weariness of grad school. <3
happy 8 months to Ryan… I keep seeing people write about this H1N1 and I am a bit nervous coming back to America… wondering if we should get it before we come back…
Oh he looks good! Happy 8 months old! And I agree about the vaccination, you need to protect him! My son is right in the thick of H1N1, and I wish I could have vaccinated against it. While it’s not a bad thing for us to be dealing with, I can’t imagine baby Ryan dealing with it. H1N1 is EXTREMELY contagious!
I too am up in the air about the H1N1 vaccine. Ryans nurse said she should get it, but I’ve been told there is a lot of Mercury in it and I don’t really know how I feel about that. Whatever you choose, I’m sure it will be the right choice for your family!! HAPPY 8 MONTHS TO RYAN!! I LOVE THE PICTURE!! so precious!!!
http://www.ryanschd.blogspot.com
oh, my gosh, the little guy is adorable… God bless him. I hope he can come home soon! Prayers