200am - Just as promised, Jaxen was switched from one sedative to another. With the combination of drugs, the tentative plan is to waken him and pull the breathing tubes at 10am - unless Jaxen has other plans, which they are prepared for! So far tonight he has been a perfect angel. . . besides a low heart rate, which the doctor is still okay with, our new night nurse has yet to believe all the rumors she hears about Jaxen being a rebel! The Jaxen's "team" hasn't left his side all night and this room has been dubbed "Camp Jaxen". . . everyone is prepared for a fire ant to awaken at anytime! *fingers crossed* that everything remains this calm and collected. . . if sitting here running through all the scenarios isn't bad enough, watching them wheel in the pediatric crash cart is enough to worry me half to death! Now they say that it's just a precaution and that when he wakes up, everything that they will need will right there which will limit the running in and out like crazy craziness! But deep down I know part has to do with his little heart rate being so low. The Peds doctor did warn me that they might have to bag him in the beginning if he fights, just to make sure he's getting enough oxygen, but they have 100% faith that he can and will handle everything on his own.
845am - Jerry and I actually got sleep. I know doctors and nurses went in and out a million time last night for labs / medicines / monitoring / etc., but I honestly needed the sleep and they promised to wake me if something was going on. About 800am, I came to and notice Jaxen was fighting them quite a bit - so now I am wide awake. Jerry's helping hold him down and keeping him calm. It's so hard for me to stand over the crib and watch him struggle and cry. I have to walk away frequently. . . I am not built to be this strong. Doctor's know of Jaxen's alertness and will be down in 40 minutes {finishing up with another kiddo} or less to remove his tube. Until then it's a battle of strength. . . Jerry & the team of nurses VS Jaxen.
1000am - Daddy is awesome.
1015am - Breathing Tube, Catheter, and the stomach tube are OUT!! Only thing still in are the IV's and the feeding tube. . .
1230pm - So Jaxen is awake and updates are going to be a little more spread out. He is a fast little guy and this morning he has already managed to pull his feeding tube halfway out. = \ Jaxen is off all his IV medicines - only getting fluid from his IV - so I've advicated for him to get a dose of Tylenol. Nurses seemed fine with that and will be in soon to give him something for the pain. The speech team should also be up here shortly to interact with Jax. They are going to figure out if he's swallowing good and make sure his throat is okay so he can get the feeding tube removed and start eating on his own. The guy hasn't gotten but one feeding since being admitted Sunday. Other than waiting for the speech team, Jerry and I have taken turns holding and comforting Jaxen. He still fights but seems to be getting some good naps in and is less restless. I will try and get you all updated after our visit from the speech therapy team.
200pm - Jaxen managed to cough the feeding tube out some more. They had to call for a chest xray to verify it's placement and calculate advancement. The feeding tube is going to stay in tonight so that he can get some nutrition. Jax ate some applesauce for the speech lady but he was still pretty out of it. Tomorrow morning Jaxen will be their first visit around 830-900am - and if he willingly eats and drinks for them, the tube can come out then. Unfortunately, it looks like we might be here a while longer. . . when things calm, Jerry and I are going to have to figure out what we are going to do with Chloe and Jacob AND figure out something so I don't miss my own doctor's appointment on Friday. = \
1000pm - Sorry for the lack of updates, but Jaxen is FINALLY getting a lot of deep sleep - in fact, I fell asleep with him around 5pm and didn't wake up until 730pm! A much needed, solid sleep! In fact, we found out later that the PICU Doctor came in a we were passed out cold and they let us sleep. I feel bad that I slept so hard and missed their visit, but the doctor's are thrilled we were able to sleep.
Let's see if I can catch you all up on the events this afternoon. Jaxen has had his burn dressing changed, linens changed, and a little sponge bath. They tried to feed him once but he wasn't taking to the tube feeding - it was upsetting him. This evening they started it really slowly, while we was sleeping and they've increased the speed {however, he's getting agitated again so I might ask them to turn it down a little}. As much as he doesn't like it, it's giving him some energy and helping dilute the medicines in his systems because he's more awake now. All the night nurses are on shift now and most of them have stopped by to see Mr. Jaxen. . . he's got quite a following of girls on this unit! :-)
Other than the feedings, we are just hanging out. Jerry and I got to talk to the kids this evening. The first question out of both their mouths was if Jaxen was feeling better. Chloe wants to know when we are coming home and Jacob talks about how much fun he's having with Grandpa. :-) It was good to hear them both laughing and giggling together. Brought smiles to our faces and made me miss them even more.
Sorry to cut it short but I am not feeling so well - baby is not letting me forget he's here too. Apparently, it's time for gymnastics so I'm going to lay down and see if he calms.
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