Amazing what a day can do!

I was so amazed at Jacob's progress today. He smiled two times and I got to hold him all day!

TUBES AND WIRES AND TESTS:
I am so happy to report that Jacob had all of his tubes and wires removed except one IV and a small amount of oxygen. They took out the RA lines, the pacing wires, the art line and the chest tube! He only has one IV left just in case he would need it during the stay. He is still on the oxygen just to give him a little help with his SATs while he is recovering. He pulled it off multiple times today and did ok without it but we noticed his breathing was more labored so put it back on just for the next few days. I am amazed that this all came off so quickly.

He had a chest x-ray this morning and it looked great!

With Tubes and Wires

Look Mommy no lines or tubes!

BREATHING:
Jake still looks much better than he did pre-surgery. His retractions have come back a little and I notice a very faint strider at times but nothing like before. During his first stay they found that he has trachia malasia. It is floppy and causes the breathing issues he has. It may take years for it to fully go away. We still think the shunt contributed to his breathing though because he has improved dramatically. Even though the retractions have come back some, he is only breathing 30 or 40breaths a minute on average. He used to breath 70bpm. Even when he was drinking a bottle he would only go to 50s. That is huge for him. It will not change overnight but hopefully for Jake it will be a bit easier.

MEDS:
Jacob is off all IV meds which is great because everything he is on right now he could go home on. He is off of the Milrinone and the Dopamine. He gets tylenol every 6 hours. We just started all of his meds that he was on at home. They increased his aspirin to once every day. Instead of M,W and F only. He gets Fetinal for pain and he was getting Oxycodone but we are no longer going to give him that because he had an allergic reaction. His eyes became very itchy and his eyelids and nose puffed up and were red. He would not stop trying to scratch them today so I had to hold his hand to prevent him from making it worse. They gave him benedryl but it did not help too much.

Poor Itchy Jakey. Reaction to his pain meds.

Instead we are going to try morphine. I get nervous about morphine because that is what he coded on. The doctors all are aware of that but they said that he was only 4 weeks old then and much smaller. He also had been on anethesia that day and was given two doses within an hour. I agree that most likely it will be fine now and we have to keep his pain managed. They are only going to give him a small amount and only if he needs it.

RESTLESS AND AGGITATED
Jake was restless all day today. I don't think he had a lot of pain or headaches it was more like he was just aggrivated at his surroundings. Everytime he would start to fall asleep the baby next to us would cry or alarms would sound from other kids monitors. Its so hard for him to rest because he is in a pod with 3 other kids. He is not used to so much going on. He was awake all morning and afternoon. I felt so bad but nothing would work. Even meds did not help. He was not screaming but he was wiggling around and fussing. Finally around 3pm he got about an hour of sleep in. I am praying he gets more sleep tonight since it should be quieter and he will be on his overnight feed.

Good news is they are moving him to the STEP DOWN UNIT tomorrow. He should have his own room and be able to get some much needed rest. I think this will make his recovery even better.

FEEDING:
Last night Jake was given 3 bottles. The nurse that night wanted to see what he would take since his breathing was so much better. He gave him 20mls the first time, 40 the second and Jake took 60ml the third time. He must have just been really hungry because today he had a bit harder of a time. He only took 15ml by bottle each time I tried. He is still getting used to taking so much by mouth plus he was on pain/sedation meds and just had surgery yesterday. I think it will be a slow process but we will get there.


I met with our speech therapist at CHOP. Lauren said he sounded really good and she is comfortable with us trying the bottle 3 times a day for about 20min each time. She said that we should still follow his cues on whether we can push him or give him a break. If he gets to tired or shows signs of stress we don't have to do the full 20min. Jake's respiratory rate does go up and his strider is audible during feeding but still less than it used to be so hopefully with more practice he can start taking more by mouth. This would be great since we have so many tummy issues with that tube.


We increased his daytime feeds to 75ml instead of 70 and he tolerated it very well. He is still on 400 at night. We were able to find out that the formula he is getting at CHOP is the same formula we use at home. So far he has not had any retching or even any gas issues. He is still having regular bowel movements and urine output which is great.

Please continue to pray he keeps doing well and feels better each day.

We Love You Jake
Mommy, Daddy and Aidan