Jack's day

Jack did extremely well today. He was VERY cranky before the surgery because he was hungry and tired. Jack and I had to be at the hospital at 6:30 for an 8:30 surgery. He was good for the first hour but he cried off and on for the second hour. His normal schedule is to eat around 5:30/6:30 and then go back to sleep until around 8 so he didn't get to eat and he refused to close his eyes. The nurses took him to the OR around 8:15, they started surgery around 8:45 and I was back in recovery with him at 9:20. He was MAD when he woke up but promptly took 7 ounces of formula and was a happy boy. The anesthesiologist did a caudal block on him which is supposed to keep him numb for about 6 hours. It helps keep the need for narcotic pain meds low and usually Tylenol and Motrin controls their pain. Jack rested for about 45 more minutes and we were able to come home! Jack and I came home and took a 2 hour nap together and he has been a happy boy all day. He has been a little extra cuddly but that is fine with us. He has been standing and crawling with out any problems. Luke had a plastibell circumcision but they had to do a regular with Jack. It is a little more painful than the plasibell and it is more swollen and red. Hopefully Jack will be in the same good mood tomorrow and just need some Tylenol and Motrin. Thanks for the prayers. Will post a picture or two of Jack from my iphone in the next post.----R

Another (scheduled) day at the hospital

Arkansas Children's Hospital really is our second home. It's a good thing Rachel works there and we are both very familiar and comfortable with the place. Tomorrow morning Jack will have a quick visit with Dr. Jackson before he is put to sleep and gets circumcised. Keep Jack in your prayers tomorrow - the surgery is scheduled for 8:30am. We hope he does as well as Luke did (happy and back to his normal self the same afternoon).

Luke is still doing great at home. He's very happy, eating just as good or better than before, and seems a little more energetic. Maybe he has needed some extra oxygen for a while and we just didn't know it... He will have fun tomorrow morning when he has the house to himself and no competition for whatever he wants to play with.

We will post updates and let you know how Jack does tomorrow.

Great being back home

It's great to be back home with Luke. He and Jack are happy to be back together. I think both boys have been worn out this past week - both napped very well yesterday and they are sleeping in this morning. Luke is doing well with his oxygen and seems a little more energetic than usual. He may have needed the extra oxygen for a while, and because of that we are switching to another clinic at Children's Hospital that Luke will see monthly. Now that he is a year old, he has outgrown the high-risk newborn clinic and the new clinic works closely with other departments (pulmonary, cardiology) and can keep a closer watch on his development.

Luke has a pulmonary appointment the first week in November and will stay on oxygen at least until then. It doesn't seem to bother him while he plays and crawls around all day. He enjoys grabbing the tubing and chewing on it, and Jack will play with it sometimes too. It will be a long weekend of trying to clean and get caught up with everything - being at the hospital unexpectedly for nine days leaves a lot to be done...

Out the door!!

Luke is on the way home! Ken is glad to be going home and to be able to sleep in his own bed. I am glad my whole family is under the same roof again. I will sleep better tonight.

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Hoping to be home tomorrow

Luke is still doing well. It's been a busy morning and here is the latest:

His oxygen is down to 1.5 liters and will continue weaning, trying for one-half liter by tomorrow.

Feedings are still going well. The pulmonary team is fine with using oxygen at home for just a few weeks until Luke is fully back to normal.

We should also be getting an updraft machine and will keep that and the oxygen at home throughout the winter. That way, if he starts getting sick again, we are prepared to treat him quickly at home (and hopefully avoid another long hospital stay like this).

I've talked to nutrition about his feeding plan and this afternoon we are receiving the oxygen equipment and being trained (it's different than what we had at home before).

Luke is playing a lot - really getting tired of the hospital and ready to be home with Jack.

Moving on up....

Good busy day. Luke got his feeding tube out today and has been eating good all day. We stayed on 2 liters of oxygen because the doctors did not want the nurses to go down on it until cardiology made their recommendations. Luke got transfered to 5E bed 5!! If Luke behaves then he may come home on Friday or Saturday. The cardiology team recommended that Luke goes home on oxygen for a couple weeks and then we can wean him off. We will then go back for a follow up and get another EKG/ echocardiogram. They also want Luke to be on semi-isolation for his protection. They call it protective isolation. It means no going places that he could catch something from someone else. It is going to be another long winter of not going many places! I am going back to work tomorrow and working until Saturday. We will update when we have some more news. Thanks for all the prayers and everyone who has brought us dinner! It makes life a lot easier.


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Pictures of Luke eating

Luke just ate well! His feeding tube is out and he did great job with the bottle. Here is the proof: