Saturday, June 28, 2008

Moving On Up

Ryan was transfered out of the PICU onto a regular floor today. I have spent the day with the boys while Jason has been with Ryan. I will stay with him all of the time now, kind of like rooming in after a baby is born at a regular hospital, so I have been getting my bag ready in between games of hide and seek and Jr Monopoly. I am excited, but scared. I have heard it can be a rough transition, going from nearly constant attention of a nurse, to having an nurse managing mulitple patients. Keep your fingers crossed for me. Jason said Ryan still doesn't have much of an appetite, but he is consistently taking his minimum of 35 mL every three hours.

Friday, June 27, 2008

Another day in PICU

Ryan is officially off of all of his heart medications and he is doing great. This allowed them to take out his artrial line which means we get to hold him again which is wonderful. His lungs are still not back to 100% and the diuretics they are giving him cause him to have low levels of potassium, which they are chasing with supplements and other medicines, but until that is straightened out he will stay in the PICU. Maybe tomorrow we will be able to move to a regular floor. Have a good weekend.

Thursday, June 26, 2008

Eating Again

Eating is the big news of the day. After Ryan was safely off the vent, they started him right back into taking bottles. He has done pretty well, although it may be awhile before he is back to eating as much as he did presurgery. Right now he is at around 30 mL per feeding (he had been up to 65). They took at one of his IV's t0day, so only about 100 more to go (actually more like 5). He is down to only one heart medicine which they turned down today and expect to turn off tonight. If he does well with that, they will be able to remove the line that monitors his artrial pressure and we will get to hold him again (right now, we just have to kind of prop him up with one hand and hold the bottle with the other). That's about it for now, Jason is here for the night shift and I am heading home to have dinner with the big boys. Hope all is well for everyone. Thanks to all who have posted and are thinking of us.

Wednesday, June 25, 2008

Breathing On His Own

Ryan succesfully kicked the ventalitor habit today. They spent most of the day weaning and about 5 he was alert enough for them to remove the breathing tube they had placed in his nose before the surgery. This was a big step forward. They also took off the O2 sensor that had been placed on his forehead, so he looks like our Ryan again. It is very good to see, I actually starting taking pictures. I am headed home to do bedtime with the boys and if that goes well, I may post some pictures, but I wouldn't bet on it with my little night owls.

Another Day

Ryan is still doing well. His chest closure went smoothly yesterday and they were able to turn off his sedative medications, so he is in the process of waking up. They have said this will take up to a couple of days. He is starting to open his eyes a little and wiggle. If he continues to wake up, they will be able to take out his breathing tube this afternoon. This is the next big step. Grant and Kyle are still doing well, loving life with Grandma and Grandpa. Kyle had a t-ball game yesterday and hit a home run, all the way to the grass. He was very excited. They have both colored pictures to hang in Baby Ryan's room. We are thinking by Friday, they may be able to see him again. The hospital has a sibling support group that we may check out, then do a quick visit and dinner in the cafeteria, which will be their favorite part.

Tuesday, June 24, 2008

More Good News

Ryan had a good night! They are actually closing his chest as I write this. This is a day ahead of what anyone had told us so this is very good news. It means we are one day closer to being out of the PICU (pediatric intensive care unit). I am still trying to get used to the routine around here, which is a little different the the NICU (neonatal intensive care unit). Hopefully, by the time I do he will be ready to move to a regular floor.

Monday, June 23, 2008

Answered Prayers

The surgery was a sucess! It was by far the longest day of our lives, but we could not have asked for a better outcome. The surgeon said that he had a perfect anatomy to accomplish the switch. Ryan did end up waking up before they came to get him around 11 and he was none to happy about the lack of food in his tummy. I think it made it a little easier when we did have to say goodbye because I knew he would be asleep soon. We were able to wait in the Ronald McDonald room which was more comfortable then the general waiting area and the nurse was great about giving us updates when they got started, when they finished the aortic side and most importantly when he sucessfully came off of bypass. The surgeon came at the end and eventually we got to see him in the PICU around 7. As expected, he had many, many tubes and IV's and other medical things connected to him, but he looked as though he was sleeping peacefully and his color was good. As usual his nurse was very nice and explained as much as she could to us. I never thought I would miss the NICU, but I had grown comfortable there and was able to participate in his care. For awhile at least, all we can do in the PICU is sit by and watch. I am going to try and spend some time at home the next couple of days while he is sedated and will try to post a few more pictures. Thanks to everyone who thought about us today.

Waiting Game

Lots of waiting today. Ryan had a good day yesterday and a good night. They opted to leave him on the tiny dose of prostins and let him rest. I held him alot during the day and Jason and I both came up last night and this morning for his last feeding at 6. I was afraid that this morning he would wake up hungry, but the nurse was able to sneak on last ounce at 7:30 (his cutoff was actually 8) and she did her assesment early so he has been sleeping for now (as I have said, the nurses are super human). They aren't entirely sure when they will come and get him for surgery, which I think I have said before, but he is the 3rd case of the day so the nurse estimated late morning to early afternoon. That's about all for now.

Thanks to everyone who offered to watch the boys. Our neighbors, the Haukap's entertain them almost daily and they had a good time with the Stockwell's last week and I am sure the will be at the Salmond's at some point this week. While Ryan is in the PICU he will be sedated while he heals and I will try to spend as much time with the older boys as we can, but once he is moved to the floor, he will need to have Jason or I with him at all times, so I will for sure be taking up more people on offers to watch them, which I so appreciate. As I have said, my family is amazing, showing up anytime we have asked, for as long as we have asked, but I know even saints need a break at some point.

Lots of good thoughts today. I will post when I know more. We are supposed to get updates at 1 hour intervals throughout the surgery, but it will probably be late this evening or tomorrow when I post again. Take care.

Saturday, June 21, 2008

Meeting with the Surgeon

We met with the surgeon, Dr. Laughlin, and his nurse first thing this morning. We already had a pretty good understanding of the surgery, so it went fairly quickly. Ryan is the 3 case of the day, they predict he will go to the OR around 12, but it could flucate depending on the first two cases. They said the procedure itself takes around 3.5 hours, but the total time he will be away is much greater due to anesthesia, line placement and time afterwards to transfer to the PICU. The major surprise was that if all goes well, he will stay in the PICU for 3-4 days, then out to the floor and possibly home within 7-10 days. I was thinking 2-3 weeks and it completly freaks me out to think he could be having open heart surgery Monday and we could be taking him home the next Monday. We have the best nurse today. Actually, all of our nurses have been amazing, but Candy is a little older and gave us a good explanation about what to expect after the surgery. It's strange how things work out sometimes, that she was our nurse on the day we discussed the surgery.

Friday, June 20, 2008

Surgery

Ryan's surgery is scheduled for Monday. It's a strange mixture of relief and terror to finally know the date. We are meeting with the surgeon tomorrow morning to go over the surgery, although I think we already understand exactly what they are going to do. Today was a little stressful. They decided to again try to wean the prostins and then two hours later cardiology called and said to start weaning his oxygen as well. When I had talked to neonatology earlier, they had said we would do one then the other. It really didn't matter, by the time we started to wean the O2, his levels were already in the 70's, so they stopped. By 9 they had permission from cardio resume the prostins, so one step forward, one step back. Nothing much else going on at this point, just hoping for all to go well this weekend. Thanks to all who have posted and all who are thinking about and praying for us. It is nice to know Ryan has so many people cheering for him.

Good Night

Ryan had a good night. They cut the dose of prostins in half instead of turning it all the way off and have given him a couple of doses of a diuretic to help him get rid of some fluid that may be making it harder for his lungs to oxygenate his blood. Jason said they were planning to try stopping the prostins again today, so keep your fingers crossed. We want his heart as strong as possible for surgery. Jason and I are doing good, we have fallen into a little bit of a routine, I come in the morning and stay until late afternoon. Either Grandma or Grandpa comes to watch the boys so Jason can leave and go to work. He then comes after work so I can go home and be with the boys. Grandma is planning to take the older boys to our neighborhood garage sales today, so hopefully I don't go home to a house full of new "treasures".

Thursday, June 19, 2008

News from Cardio

I finally actually talked to the nurse practioner from Cardio this afternoon. While they are still saying he doesn't need the prostins, they at least are conceding that turing them off completly does cause problems. She mentioned a couple of things we could try, cutting the dose in half and weaning him from the O2. She was going to coordinate with Neonatology. Tomorrow is the big day when they conference on their pending cases and hopefully set a date for surgery. The nurse today said we could expect 2-3 weeks recovery in the hospital after the surgery. I just talked to Jason and he said Ryan had a really good night. He had a good day as well, Grandma came up and got to hold him. She was a little nervous, but got used to it pretty quick of course.

Not so fast

Spoke a little to soon about getting off the prostins. Although the O2 helped a little, he still needed to start back up again at 2 this morning. At least now it seems like cardiology does agree that he has some need for that little extra bit of mixing the prostins allow him to maintain. They are planning to do a repeat echocardiogram (ultrasound of the heart) and hopefully make a plan from there. They will still discuss his case at conference tomorrow. In other news, he is completly off IV nutrition and up to about 2 ounces of breast milk per feeding. He has never had any problems with food, not surprising for one of my babies.

He continues to be plauged by name mistakes. The labels they have printed for me to label his bottles of milk have the St in Stratman cut off and they are printed in all caps, so it appears as if his name is Ryan Ratman.

Wednesday, June 18, 2008

Much better today

Although I was scared to death about stopping the Prostins again, he is doing much better tonight. The extra O2 must be helping because his O2 levels remain in the 70 which is where the want them to be. This is good news because being off the meds is apparently the most important precursor to surgery. Now it is just a matter of waiting for Friday's conference to get a surgery date and hoping he continues to do well without the Prostins.

A couple of people have asked about the older boys. They are doing great, just getting spoiled by grandparents. One day, one wanted McDonald's and one wanted Burger King, so grandpa drove to both places. We are so lucky to have such an amazing family so close. Aunt Ash and Uncle Anthony also took them for the day on Saturday, going from 1 kid to 3 which as any parent knows is quite a feat.

News from Cardiology

The good news is that Ryan was completly off the O2 by 3 this morning and has had a great morning. Still breathing to fast to nurse or take a bottle, but I did get to hold him all morning. The other news is that cardiology wants to try to discontinue the prostins (medicine that keeps one pathway open) again. Apparently the prostins make the heart tissue more delicate and thus surgery more difficult. They believe that his heart is doing enough to pump the blood, but that his lungs like that of all newborns are not up to 100%. This time, we put him on O2 for awhile before stopping the prostins to try get his lungs expanded a little. So far so good. I will keep you posted. They have also indicated that they will wait until next week to do the surgery, which is more then we knew yesterday.

Thanks to everyone who has emailed or posted comments. Reading message from all of you is one of my favorite parts of the day. I just realized (or actually Jason pointed it out) that I misspelled our last name in the website address. I don't think I can change it and some of you may have it bookmarked, so I will just leave it as Straman.

Tuesday, June 17, 2008

Good News from the Cath Lab

Ryan's cath procedure went very well. The cardiologist said they did not find anything unexpected and that the surgery should be a straight forward arterial switch. Apparently the coronary arteries can sometimes cause problems, but his were as they should be and should not cause any problems. Things didn't go as well this afternoon, but they are looking up now. Another thing they looked for during the procedure were the two areas of his heart that are allowing oxygen rich blood into his system. One is being kept open using a medication. The cardiolgist felt that the other (the atrial septal defect) was large enough that the prostins could be discontinued. Ryan did not agree and his O2 levels went from great to not so great. The neonatologist elected to put him back on and his O2 levels returned to normal. Now I am waiting for them to wean him back off of the O2. We still don't know when his surgery is scheduled for, only that they will try to talk about it before Friday. I am still trying to figure out exactly how the cardiology department works. I am hoping sooner rather then later, but we will see.

Waiting

Ryan's cath procedure is scheduled for today, but we don't know exactly when. I hope it is soon since they discontinued his feedings at 3 am and if he wakes up I think he will be really hungry. Other then that, he had a good night. He continues to be the superstar of the nursery as far as weight gain. He gains around 100 grams a day which is unheard of in the NICU. It's really funny, the nurse always has us pick him back up so they can zero the scale and check again. One even went an got a different scale. He is still doing good with his bottles, drinking them down in just a few minutes. A couple of times we had to use the tube because his resperation rate was to high, but they say at this point it is great that he can tolerate anything by mouth.

Monday, June 16, 2008

Pictures




As you can see, the boys got to come and visit on Sunday. Grant was pretty interested in the new baby. He sat beside him on a chair and kept saying "Shh, Baby Ryan sleeping". He would also look around and say "another baby, another baby". Kyle was ok, but I think he was a little upset.

Other news today, I talked to the cardiologist that will be doing the cath procedure tomorrow. We still don't know when they will even talk about scheduling the surgery. He said they typically have a conference with the surgeons on Fridays, but they will try to talk to them about Ryan before that. He did say that he will show us the "pictures" of Ryan's heart after the procedure, so we should at least know if there is anything else major going on.

A funny thing happened while I was holding Ryan today. His heart rate monitor kept sounding an alarm and showing his heart rate in the 60's. The nurse checked and he was fine and said that they lose signal alot, but don't read that off. When I went to put him down, we noticed that the sticker had transferred to my chest somehow and the monitor was picking up my heart rate.

The Weekend and the Week Ahead







Ryan had a good weekend, lot's of big firsts. On Saturday, they took out the remaining umbilical line which meant we got to hold him for the first time. They also started to feed him through a small tube in his nose. So it was one tube out, one tube in, but is was worth it to get to hold him. His first feeding went so well that they let me feed him a bottle at the next feeding. Since I nursed my older boys, this was also my first time feeding a baby a bottle, but it went very well. On Sunday, the nurse practitioner actually said that I could try nursing. I couldn't believe it, they monitor everything so closely, I never imagined that would be ok with just recording that he nursed for so many minutes, but they were so we gave it a shot. The first time didn't go so well, he got frustrated that the milk wasn't right there like it was in the botttle, so we went back to the bottle, but he did great the second time and I was so excited. We tried at 3 and I think he was just to tired. His breathing rate elevated so we went back to the tube and the back to bottles where I think we will stay for awhile.

We also talked to one of the cardiologists about his condition and the catheterization he will be having performed on Tuesday. His condition is called Transposition of the Great Arteries or TGA for short. A good explanation can be found at the following website: http://www.americanheart.org/presenter.jhtml?identifier=1682
The catheterizationwill help the cardiologist and the surgeons determine exactly what needs to be done during surgery. Sometimes other anomalies are present and this will give them a "roadmap" to follow. I am not sure how soon after the procedure they will schedule the surgery or even when we will get to talk to them about results, but will post more when I have a chance. There is a computer here in the NICU for families to use, which is nice. I will try to post a few pictures from home when I have a chance as well.