Jacob was discharged today and boy has it been a busy day!
I will post pictures tomorrow but Jacob is doing great and I am so happy! I have been so busy organizing medical equipment, supplies, getting feeds put up and meds organized. There is so much to do but boy is it worth it.
DAILY ROUTINE
MEDICATIONS:
Jacob gets meds at 8am, 4pm and 12am
Aspirin- Mon.,Wed.,Fri. at 8am
Vitamin D- Mon., Wed., Fri. at 8am
Lasix (Diuretic)- Everyday at 8am, 4pm and 12am
Captopril (Blood Pressure)- Everyday at 8am, 4pm and 12am
Diuril (Diuretic)- Everyday at 8am
These meds are only until Saturday:
Clindamycin (antibiotic)- Everyday until Sat. at 8am, 4pm and 12am
Mupirocin ointment (antibiotic ointment)- as needed for skin
FEEDING-
Jake is on gravity feeds at 9am, 12pm, 3pm, and 6pm
at 8pm I put up his night time continuous feed which is done by his pump.
Gravity feeds are done by hanging a suringe up higher than Jake. By gravity it goes down a tube into his g-tube. When done I flush it and that is that. It takes about 20 minutes for it to go in. I have to vent him before and after or he gets fussy and gassy.
For the pump I put a larger amount in the bag and its good until 12am. It goes in very slowly continuously. It runs over a 10 hour period but I have to change it once in the middle so its not sitting out that long. I put fresh milk in at midnight after his meds. The pump dispenses it slowly over that time. I took a class on using the equiptment. Its great because Jake sleeps through the night since he doesnt wake up hungry. I take it down at 6am.
FOOD TYPE
Right now I am transitioning Jake to formula. He is on a 27 calorie diet. Normal formula is 20 calories so I have to do 7 scoops per 10oz of water. I will mix his daily amount in the morning because its good in the fridge for 48 hours.
I am also fortifying the rest of my breastmilk until its used up. To do this I do 3oz of breastmilk and add 2 teaspoons of formula.
He is on Similac Lactose Free formula since Aidan and I are both lactose intolerant.
So for now I am using half breastmilk and half formula. When I run out then he will be just on 27 cal formula so it will be MUCH easier.
VENTING
Jake can't burp so I have to burp him by venting. It is easy, I just attach a empty suringe to his extension tube and any air will come out.
So Busy Busy but enjoying every moment. So nice having Jake wireless!
Please continue to pray for Jake and that everything will go well and he can go back to WV on Monday after his followup appt.
Thank you all and if I don't post for a while it is because I am so busy but I will try to update when I can.
Thursday, May 13, 2010
Wednesday, May 12, 2010
Overwhelmed
I am sorry I have not updated. I am very overwhelmed right now with getting things ready for discharge and figuring out his feeding, meds and appointments. I promise I will update soon. I am hoping to get some more answers tomorrow.
Please don't worry if I don't post right away, a lot going on right now!
Please don't worry if I don't post right away, a lot going on right now!
Monday, May 10, 2010
The Plan
Talked to the docs, here is the plan:
Jacob will be released on Thursday. We will go to the Ronald McDonald House and stay through the weekend. We will meet with Dr. Swazst on Monday for a follow-up appointment and then we can go home!
There is nothing on the cath that makes them think he is high risk or needs to stay here. Everything looked good. The pulmanary vasculature looked good so the bloodflow to the lungs is good. There was a lot of blood moving through the shunt and the heart is large because of that which is normal for these kids. After his second surgery they remove the shunt and it will shrink back down. So the amount of bloodflow could be the reason for the fast breathing. If so it will get better after the second surgery. The other contributing factors is the restricted septum he had.
Either way the cath was very positive and its good to know that everything is functioning the way it should.
His heart squeeze was a little low, still normal but not as strong as they like. This will also get better after the second surgery but until then he is now on captopril which is a blood pressure medicine. They will watch it the next few days.
I will update more later but thank you for the continued prayers!
Jacob will be released on Thursday. We will go to the Ronald McDonald House and stay through the weekend. We will meet with Dr. Swazst on Monday for a follow-up appointment and then we can go home!
There is nothing on the cath that makes them think he is high risk or needs to stay here. Everything looked good. The pulmanary vasculature looked good so the bloodflow to the lungs is good. There was a lot of blood moving through the shunt and the heart is large because of that which is normal for these kids. After his second surgery they remove the shunt and it will shrink back down. So the amount of bloodflow could be the reason for the fast breathing. If so it will get better after the second surgery. The other contributing factors is the restricted septum he had.
Either way the cath was very positive and its good to know that everything is functioning the way it should.
His heart squeeze was a little low, still normal but not as strong as they like. This will also get better after the second surgery but until then he is now on captopril which is a blood pressure medicine. They will watch it the next few days.
I will update more later but thank you for the continued prayers!
Recovering
Jacob is back in his room. Cath went well. Pulmonary vasculature looks good. Flow is good. Shunt and aortic arch look great. Pressures are all good. Squeeze of heart was a little on the lower side of normal so they put him on Captopril for that. They said this is common.
As for the breathing nothing is wrong with the blood flow to the lungs. Could be from the septum or from the size of the shunt. They remove that in the second surgery. Hopefully it will get better as he gets bigger but at least there is nothing wrong with the arteries!
Waiting on Dr. Swazst to decide if he can go home or not. If he does it will be Thursday so they can watch him on this med for a bit.
He is in some pain right now. It is so sad to hear him wimper. They also found that the sticker from one of his leads had burned into his skin. It is so red and sore. They change them daily not sure why this one did that. Maybe it did not get changed. Hydrocortisone for that. My poor little boy.
Thank you all for the prayers.
As for the breathing nothing is wrong with the blood flow to the lungs. Could be from the septum or from the size of the shunt. They remove that in the second surgery. Hopefully it will get better as he gets bigger but at least there is nothing wrong with the arteries!
Waiting on Dr. Swazst to decide if he can go home or not. If he does it will be Thursday so they can watch him on this med for a bit.
He is in some pain right now. It is so sad to hear him wimper. They also found that the sticker from one of his leads had burned into his skin. It is so red and sore. They change them daily not sure why this one did that. Maybe it did not get changed. Hydrocortisone for that. My poor little boy.
Thank you all for the prayers.
Update
They could not get the cath to go in through the groin so they had to go through his neck. So far everything looks good. Keep praying please!
Jacob is in the Cath
Jacob just went back for his cath. Please Pray!
Talked to Dr. Rome before he went in. This doctor is amazing at what he does but not the best bedside manor. He called Jake odd lol. I think I prefer the word "Unique" now. He said he should be breathing fine right now and not need oxygen. He said unfortunately these kids have such a complicated physiology that breathing fast can be a sign of many things. Hopefully this cath will give them a clearer picture of what is going on with him.
So please pray all goes well. I will update when I talk to the doctors later. This could take a few hours.
Thank you everyone.
Talked to Dr. Rome before he went in. This doctor is amazing at what he does but not the best bedside manor. He called Jake odd lol. I think I prefer the word "Unique" now. He said he should be breathing fine right now and not need oxygen. He said unfortunately these kids have such a complicated physiology that breathing fast can be a sign of many things. Hopefully this cath will give them a clearer picture of what is going on with him.
So please pray all goes well. I will update when I talk to the doctors later. This could take a few hours.
Thank you everyone.
Sunday, May 9, 2010
Cath Tomorrow!
Happy Mother's Day!
I got out of the hospital for a short while today. Went to the King of Prussia mall with my mom and my sister and her family. It was nice to get out for a bit but I missed my boys! Today was extra hard on me being apart from Aidan on Mother's Day. It was very hard but I had a good day despite the sadness I felt from missing him.
Jacob's Cath is supposed to be tomorrow morning. No time yet. Praying they don't reschedule him again. Praying he does well. Praying for so much tonight. I am so afraid for him having to go back on the vent again and through yet another procedure.
Not sure which I fear more... Staying here or going home.
I was looking at Jake today watching him work so hard just to breath and a part of me got really scared. I do want to go home, I miss Andy and Aidan. I also want Jacob to be ok and I know he is so fragile. It is up to the doctors but I fear both. I don't want to be here another 3 months but I also am so afraid to go home. I have no problem taking care of him. I do everything for him while I am here. Completely comfortable with the g-tube. I just am afraid of all of the "What if's". It is nice having a full time nurse right there but I guess we will have to leave at somepoint. It will be nice for him to know life outside of the hospital. I can't wait until his second surgery has passed. They are so much stronger after that.
Today's update...
Feeding Issues:
He always gets tacky at that time of day. I promptly told him that he was not aloud to give me trouble on Mother's Day lol. This did not work, he was very worked up because he was hungry. He always gets hungry early but we can't feed him too much or he will get sick. So his sats were in the 90's (they like them to be 75 to 85 for their phisiology) and his heart rate was around 180. We took a walk then he calmed down.
Another issue we have had to deal with is everytime he eats lately he seems to bare down like he is constipated. This causes his heart to brady real quick (low heartrate). Its obvious its because he is bareing down and its really fast and comes right back up. Adults do that to but we don't realize because we are not on monitors. Along with that he is wretching some. Most babies can spit up but Jake has a nissen and can't throw up or burp so he can only wretch (like a dry heave) Horrible to see but its only one or two times and after a feed so we think its from gas. He has only done it this week since he has been on an antibiotic. Wondering if his stomach is more sensitive due to that. So the plan is to vent his g-tube more. It's how we burp him. We attach the extension tube and put a syringe without the plunger on the end. Open the extention and the air will come out. Wierd, just odd. But hoping it works, hate to see him uncomfortable.
Cath:
The heart cath is tomorrow and we should get data on his heart and lung function. It will be nice to know exactly what is going on in there. Heart echo's and xrays give an estimate. This will be actual pressures and information. If there is any narrowing they can fix it while in there. He will need anethesia and a vent so please pray for him. It will be hard to see him go through this but I know he is a fighter and will be ok.
Prayers requested:
1. Pray for Jacob tomorrow and that everything looks good
2. Pray Andy and Aidan get better so if we can go home later this week, we can all be together.
3. Pray for our family that we can get through this time and be happy and at peace even if we have to remain seperated for another few month's
4. Pray that Jacob will be safe if he does come home and for me to have the knowledge to know if something is wrong and be able to keep him safe. I feel like I know him well and I will be ok but these kids are some complex. Pray for God to watch over us.
As always, Thank you for all of the prayers and support.
I got out of the hospital for a short while today. Went to the King of Prussia mall with my mom and my sister and her family. It was nice to get out for a bit but I missed my boys! Today was extra hard on me being apart from Aidan on Mother's Day. It was very hard but I had a good day despite the sadness I felt from missing him.
Jacob's Cath is supposed to be tomorrow morning. No time yet. Praying they don't reschedule him again. Praying he does well. Praying for so much tonight. I am so afraid for him having to go back on the vent again and through yet another procedure.
Not sure which I fear more... Staying here or going home.
I was looking at Jake today watching him work so hard just to breath and a part of me got really scared. I do want to go home, I miss Andy and Aidan. I also want Jacob to be ok and I know he is so fragile. It is up to the doctors but I fear both. I don't want to be here another 3 months but I also am so afraid to go home. I have no problem taking care of him. I do everything for him while I am here. Completely comfortable with the g-tube. I just am afraid of all of the "What if's". It is nice having a full time nurse right there but I guess we will have to leave at somepoint. It will be nice for him to know life outside of the hospital. I can't wait until his second surgery has passed. They are so much stronger after that.
Today's update...
Feeding Issues:
He always gets tacky at that time of day. I promptly told him that he was not aloud to give me trouble on Mother's Day lol. This did not work, he was very worked up because he was hungry. He always gets hungry early but we can't feed him too much or he will get sick. So his sats were in the 90's (they like them to be 75 to 85 for their phisiology) and his heart rate was around 180. We took a walk then he calmed down.
Another issue we have had to deal with is everytime he eats lately he seems to bare down like he is constipated. This causes his heart to brady real quick (low heartrate). Its obvious its because he is bareing down and its really fast and comes right back up. Adults do that to but we don't realize because we are not on monitors. Along with that he is wretching some. Most babies can spit up but Jake has a nissen and can't throw up or burp so he can only wretch (like a dry heave) Horrible to see but its only one or two times and after a feed so we think its from gas. He has only done it this week since he has been on an antibiotic. Wondering if his stomach is more sensitive due to that. So the plan is to vent his g-tube more. It's how we burp him. We attach the extension tube and put a syringe without the plunger on the end. Open the extention and the air will come out. Wierd, just odd. But hoping it works, hate to see him uncomfortable.
Cath:
The heart cath is tomorrow and we should get data on his heart and lung function. It will be nice to know exactly what is going on in there. Heart echo's and xrays give an estimate. This will be actual pressures and information. If there is any narrowing they can fix it while in there. He will need anethesia and a vent so please pray for him. It will be hard to see him go through this but I know he is a fighter and will be ok.
Prayers requested:
1. Pray for Jacob tomorrow and that everything looks good
2. Pray Andy and Aidan get better so if we can go home later this week, we can all be together.
3. Pray for our family that we can get through this time and be happy and at peace even if we have to remain seperated for another few month's
4. Pray that Jacob will be safe if he does come home and for me to have the knowledge to know if something is wrong and be able to keep him safe. I feel like I know him well and I will be ok but these kids are some complex. Pray for God to watch over us.
As always, Thank you for all of the prayers and support.
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