We have had a few up and down days, both emotionally and physically. Sometimes I find myself avoiding to just sit down and go through the emotions:) when we get sleep we are all happier, last night was a good night so hopefully a good day will follow.
Saturday and Sunday Garrett wouldn't let us pick him up. He would say bed every time you moved him and had a low grade fever, we couldn't seem to stay on top of the pain. Monday was a complete opposite, he wanted to go on his "walk" and then played awesome. Monday was my low day. With everything we have read most of the lymphatic leaks we have found are a sit it out and wait. They had finally put him on a bland low fat diet which does wonders for his spirit. His drain atomatically started to go cloudy. About 3/4 of the day they put him back to clear liquids. As a parent you just want to kiss it all better and solve the world. Dr Fishman told us there are to 100% answers to this. There just isn't enough cases to know what works. We have been in Boston for two weeks now and many days it feels like we are regressing. His output is higher than it was pre surgery which gets discouraging.
The night before last he had no output. We have loved our nurses, and our night nurse was ecstatic. About 7:30 I changed Garret's diaper. It was saturated as where our bed linens. His drain was plugged. He was in a lot of pain most of yesterday. About 4:30 they came and flushed it. He had only had about 70 ml output all day compared to 1300 the day before. After the flush the pulled about 600 ml off in a two hour time period. They had also pulled all his Iv pain meds the night before last. They say the oral works a lot better and last longer, trying to talk your two year old into that theory at 1:00 in the morning is a little stressful:) he spits it back in your face and is determined not to take it. When he woke up for the morning we couldn't keep up with the pain. After he took the medicine we'd fill up the srynge and let him squirt it at john. He was pretty good when he was awake.
They did another ultrasound ( we had one on Monday also) there was to much fluid yesterday to tell much. He has a small cyst they are hoping to inject with a scarring agent to see if that will slow down the flow.
His drain is plugged this morning again and is leaking from the the placement site, they talked like they may have to replace it. His drain has bothered him more than the incision. I hope they can leave it alone. Today we get to be off of the tpn for 8 hours. They will still give him the same amount just in different intervals. They prick him a few times to check his sugar. He hates that. He is getting so he wants to be covered up with a blanket especially when the nurse is in the room.
We are still praying for a miracle. We have felt so much love through all of this and still feel so blessed for the sweet little spirits that Heavenly Father sent us. Excuse all the typos I write this on my phone and auto correct is only so good:)
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