A much better day in some regards, yet kind of scary in another.
We had a good conversation with the medical staff in rounds today and got really solid answers from the Cardiologist. There are just some things that still need to be dialed in. Our Cardiologist assured us that there is probably nobody in this building that wants to discharge Beckett more than him, yet his goal is to discharge him in such a way that we are discharged FOR GOOD (well, until his next surgery in a year or two). With that being said, we had a few issues today…
Beckett keeps throwing up. Yes, babies throw up, but for Beckett his spit ups are very traumatic for him. However, what’s all the more scary is that we have had to change Beckett’s formula to a formula with no long-chain fats. This will help his pleural effusion not come back. But this new formula has effected his stools, and his vomit has gotten pretty chunky. Well, we were concerned about this because we were picturing Beckett choking on those chunks during one of his spit ups. Well…..Leah and I returned to Beckett this evening after dinner in which he had just woken up in the lil swing he was in and almost immediately began to spit up. This time, however, it escalated pretty quickly as Beckett’s eyes got huge, he began to arch his back, his face turned purple and Leah firmly demanded me to “Go get someone, he’s choking!!” So I ran out if the room, politely and sternly asked if someone will come into Beckett’s room because my son is choking. They responded very quickly and began to assess him and suction his mouth. It was actually pretty scary for both Leah and I. I think at one point Leah said to me, “Wow, I’m usually pretty calm and collected in emergency situations….I guess it’s a little different when it’s my own son.” So we got Beckett calmed back down and began conversations as to what we are going to do going forward to try to fix this. I think for now they are going to try to go down on the volume of his feeds, but we are hoping to figure out better answers tomorrow.
We are still hoping to go home sometime early next week (I feel as if we say that every week), but if Beckett continues to “misbehave” (no fault to him), it could possibly be longer than that.
I was scolded by Leah for my post last night. You see, I usually try to get her to proofread what I post (for clarity, grammar/spelling, accuracy, and maturity…..she makes me delete things often 😉 ), but last night she had a pretty bad migraine and fell asleep before 10:00pm (which is pretty early for us), and I wasn’t going to wake her to just proofread a post. Well, I don’t think she’s upset that I was being transparent, but I think I came across ungrateful and not thankful for the care we have/are receiving. And I tried to skirt the line the best I could to share my frustrations without being crude/unfair/close-minded. So I should retract a few things I may have said about his care because it isn’t that our nurses and doctors don’t care, I think I just lose perspective at times and am not fair in my “judgement”. So for that, I apologize. I don’t believe it’s wrong to get frustrated, but I do see it as an opportunity to figure out why I’m frustrated and try to work through that situation with a different set of eyes, ya know?
Anyways, that was today. Fairly good…yet really scary! But Beckett is still here, and we have been blessed with another day. To God be the glory. “May You please continue to heal my son, in Jesus name!”
— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.
That was a scary thing to go through with Beckett today and thank the Lord you were both there as it started to happen. Be assured of continued prayers for Beckett’s total healing, for you and Leah, as well as the doctors, nurses and other medical staff. Keep hanging in there and always remember we’re praying you through.
When I was faced with a frightening situation (such as you are on a daily basis) I got an answer that was kind of sweeping it under the rug. Change of shift, and I had to suffer for 3 hours thinking that my loved one was dieing. After taking photos, and calling family members I was assured, they were in a coma I was their mouth, when you get an answer you don’t understand make darned sure you go to the floor nurse. When you get a nurse you don’t like make sure you don’t get them in the morning, or ever again. You are their mouth, you are their world you are their eyes. You are all your little baby has. Hang in there, the staff knows how hard it is on you. I was told they are there for you as much as for your baby. It is also their job to make sure you fully understand AND they will tell you when they think you are not coping that you need to go eat sleep get away. They don’t need to deal with two patients. But they are there for you and they will not get angry with you. Give them a card telling them thank you it goes a long way. Have a family member send a tray of cookies to the staff on the floor. They know the procedures, they will not get angry for any words you may have. I went to the floor nurse, the attending nurse did not hold it against me. I apologised to the nurse in front of the superior for my not understanding (although they didn’t take the time to explain it to me so I would have understood) All is good make sure you eat like a rabbit, and walk the halls so you stay healthy. I gained 50 pounds and thought I was taking care of myself. Again as always sending prayers and asking for God to send Angles wings around you Beckett and the Medical staff.