Saturday, August 14, 2010

Settling In

So sorry I have not wrote much as of late. Things have been pretty hectic around the Baker household. We are adjusting to being back home. I am still somewhat in shock that we are here so soon after Jacob's surgery. He is doing so well, it is so amazing.

To look at Jake you would never know he just had open heart surgery. He smiles, laughs and plays. he watches his brother Aidan's every move (It is so cute). His incision is almost fully healed over. I am amazed at how great it looks. He still gets Tylenol every 6 hours. It seems he gets fussy around when it is due so I am going to continue it for a little while. He is also teething so it helps with that. I still can't believe that he has been on just Tylenol since day 4 after surgery.

Jake is still on Oxygen. I am trying to ween him off of that but its a slow process. He tries to rip it off of his face ever chance he gets but his pulse ox lets me know because he usually deSATs to low 70s or even in the 60s soon after. We have a concentrator which is about the size of a nightstand. I was using his portable tanks but those don't last long. Right now he is on .5 of oxygen. I go between that and .25. Last night I had to go up to 1 because he kept deSATing. I never did figure out what it was but he was fine all day today. Maybe he was just a little uncomfortable. He tends to deSAT if he is in pain or even due to his position. He deSATs when he lays flat. May have something to do with the way he breathes.

Praying I can get him weened in a few weeks because it is not easy to move him around. There is extra tubing I can use with the concentrator but it does not seem to work as good. I have to turn it up higher. Plus a cord running through the room doesn't work well with a 3 year old running around. So basically we set it up in the living room and that is where he stays for the day.

Tonight the power kept going off which did not work well for us. Jake is hooked up to the oxygen concentrator, his pulse ox machine and his feeding pump. Luckily I had the feeding pump and pulse ox charged but the concentrator would not work without power. Therefore I had to bring in his portable tank as a back up. Problem is I only have one tank left and I have doctors appointments to bring him to on Tuesday. I need the tank for that. Seeing him hooked up to all of this equipment and having the power go out made me realize I may need to look into a back up generator.

If anyone knows of anyone who has one that they could donate or sell to us pretty cheap please email me: We would really appreciate it!

I have already contacted our power company and alerted them of the equiptment we have here. They have it on file but said that they can't bring our power up any sooner than anyone else.

Jake is now on 8 different Medications. Here is his new schedule for meds/feeds

Lasix (0.6ml), Captopril
(3 ml), Prevacid (2 ml), 1/2 Baby Aspirin, Bethanichol (0.6ml), Diuril (1.2 ml)
(0.6ml), Captopril (3 ml), Bethanichol (0.6ml)

(2 ml), Diuril (1.2 ml), Sodium Suppliment (2.5 ml), Aldactone (1.2 ml)

(0.6ml), Captopril (3 ml), Bethanichol (0.6ml)

The biggest change in Jake since his Glenn is his eating. Pre-Glenn Jake would only take about 15ml by bottle. He would get very tired and I would have to put the rest through his tube. Now Jake takes at least half of his feed by bottle. Sometimes just about the whole feed! He would take the whole feed everytime if I would let him but the Speech therapis at CHOP said to only let him go for 20 minutes. Anything after that and he will be burning more calories than he is getting. So anything left after the 20 minutes I put in his g-tube.

It is so great to see him taking more food by bottle. He even likes to hold onto the bottle with both hands as he is drinking. It has eliminated the pain issues he used to get by doing the whole feed by tube. We still have a ways to go but this is a HUGE step in getting him towards "Normal" feeds.

Dr. Szwast said that the shunt can make it harder for them so he probably feels much better now that it is out. My big challenge now will be finding out how to transition his night feeds to the daytime. It is not normal to feed all night long and Jake gets 400mls at night. He gets 300 during the day. The majority of his daily intake is at night. Jake has never tolerated large volume very well so it will be hard to move it all over. I will be working with speech here and hopefully they can help me with this challenge.

His speech therapist in Philly also said we should be able to try baby food soon. it may be even easier for Jake because he can taste it and not have to worry about the suck, swallow breathe coordination.

OVERALL it has been a great week for Jake here at home. We are so glad to be here and thank you to all of you for the prayers you sent up for my beautiful little boy. We are so blessed in so many ways. His next surgery will not be until he is around 3 years old. Praying we get a nice long break away from the hospital until then.

The Bakers

Jake and his CHOP Buddy and fellow HLHS survivor Adam.

Happy to be home and in his own bed!

1 comment:

  1. Wow Kathy, Jake looks GREAT! And his color is fantastic - so pink! Love him!!!