Gideon’s lungs to clear up inside & out
Gideon’s heartrate, blood pressure & rhythm to maintain stable & good
His hematocrit to rise
To have EXCELLENT results from his chest X-ray, labs, EKG, Echo & other studies in the morning
My big 3 boys at home with daddy
Today was backwards day. Gideon was rocking it this morning though he was a bit fussy so he got the swing which wasn’t that awesome for him. I don’t remember all the events or details of the day because he’s been through the ringer today, therefore, I’ve been through the ringer today as well but he is stable now and resting again. He had 2 separate episoses of fits (not seziures) and desaturation. The first one got him put on CPAP to help him breathe which it slowly did, for the most part. But his work of breathing was awful all day long even though his sats came up some and his rate did decline. He was still sucking really hard to get any air. His 2nd episode earned him the ET tube again (breathing on the vent) but now his lungs can fill full & relax while he has more time to heal.
His dayshift nurse made that name banner for him today, isn’t it cute!?!?!
We aren’t 100% certain what happened or why, we do know it’s likely in part due to stopping 3 cardiac medications cold turkey this morning which put a lot more workload on heart and started the fluid backup into his lungs. We think that due to that, he was tuckered out from trying to breathe so hard and likely aspirated a bit when he did breastfeed, which he did this morning and that exascerbated his already angry, fluid filling lungs.
I was sad that he had to get intubated again, but now I’m so thankful he can rest and breathe easy. I don’t have to listen to him gasping, grunting and squeaking for air, his lungs are filling full and he doesn’t have to work for it at all. He is getting chest physiotherapy every 4 hours now which is where they come and literally beat on him with a bell on a stick to break up some of the fluid accumulating around his lungs and suction it out so they don’t collapse. He seems to enjoy that, he always likes to be tapped.
There are many details I’m forgetting but for now, I’m just thankful that he is resting comfortably and he is able to oxygenate well with no work of his own. I pray for good answers in the morning and forward progress for him tomorrow (which is now actually today, yikes, I need to get to sleep).
Bo went home on Tuesday and got the bigs home on Wednesday so he is home with the big kiddos. We will try to schedule help for him at the house as often as I can find people to come over and play with the kids or take them for a walk or to the park or outside to ride their bikes or in the back yard to play ball or do crafts inside or play a board game or read stories, etc. I will try to update the care calendar and add some meal dates to it tomorrow to feed the boys as well.
As for me, I’m fine at the hospital. I have some food here or can grab something from the cafe/room service menu when I need. I have clothes and laundry, things to do that I’ve had here for a week now and haven’t even looked at yet so I guess I could use some time to get the stuff done? Peace and tranquility for Gideon so I don’t have anything else to do… I spend most of my time at his bedside and I’m pumping milk for him so I have to pump/store/wash 4-5 times per day and I do feed myself and shower everyday to make sure I stay strong. I pray a lot and read scriptures over him because that gives me a lot of comfort to speak Gods word right to him in his bed. I’ve learned that I like visitors earlier in the day when possible rather than in the evening. I’m too exhausted in the evening and want to eat, shower, do Gideon’s 8:00pm routine with the night nurse and rest but I’m often so late, I don’t get to eat until after that then shower, pump, do an update and before you know it, it’s after midnight and I’m still going. He gets labs at 1:30 and xray at 4:00 and now he will have physiotherapy on his chest which is very loud so there is no way I’ll sleep through that so I do need to try to get to bed a little bit earlier so I can get more than 3-4 hours of sleep per night. .
Today was just a speedbump for Gideon. All part of his healing process. He needed more rest and time and just had to SCREAM loud enough that we listened and he can have that now.
THANK YOU for praying! Positive updates to come in the morning!
2 Replies to “Thursday Night – Week 1 day 7”
Praying for all of you. I’m so sorry you’re all going through this. Gideon’s a little fighter. Praying for strength for Gideon so he can heal and put this all behind him. Praying for strength for you so you can get through this.
You are such a wonderful caring mother and we continue to pray for Gideon and also for you and Bo to help keep you strong. We send lots of prayers and love to all of you and look forward to the day we can meet you and hold Gideon. Lots of love and prayers❤️🙏