Cardiology Checkup

Ryan had a check up with Dr. D, his cardiologist on Thursday of last week.  Everything looked great!  He had an ECG and an echocardiogram and held reasonably still for both.  I was really worried about him holding still for the echo, but he was mesmerized by the light up spinning toys they had in the echo room and only got fussy towards the end when he realized I was making them spin and wanted to do it himself but couldn't get his little finger on the little button.  After both tests, Dr. D came in and said everything looked great.  He said that they couldn't really visualize his branch pulmonary arteries, which is where narrowing could happen but that he wasn't worried about it.  He said he could tell us much by listening, which he did and said he heard now evidence of a problem.  If narrowing were to occur, it would occur over a series of years, so again he reiterated that he was not worried.  I believe him, but I think I will still request a copy of the echo report, just because I am curious about what is in it.  He gave us a little speech about treating Ryan like a normal kid, letting him run and play and fall down and I actually feel like I am finally at a point where I can and am doing that.  I told Dr. D that Ryan is the third of three boys and if he could look in our house at the things Ryan does/have his brothers do to him, he would not be worried about us treating him like he is fragile.  The other night he wanted in the bounce house with his brothers, so I let him and he loved it.  Kyle would bounce him up and down and he would just laugh and laugh.  When I tried to get him out, he just crawled away from me.  He wants to see him in a year, so this time next spring, when he is almost 2.

 

The picture is unrelated to the checkup, but shows his first experience with spaghetti.  He loved it, which is good, given that we eat spaghetti a minimum of once a week around here.

6 Month Check Up and Pictures

Ryan had his 6 month checkup this week and as you can tell by the pic, he was a very healthy 17 lbs 9 oz (50%) and was 27.5 inches long (85%). His lungs were clear despite a little congestion and his noisy breathing has almost completely resolved. As expected, the doctor was very unconcerned about my concern for his low appetite and complete rejection of any and all solid food. The medical student making rounds with him that day who appeared to me to be about 12 suggested I create a more positive atmosphere when introducing solids. Ok, thanks, I'm sure that's it. I don't even want them to "do" anything about his appetite, just humor me and say that it could be related to his surgery and like everything else, just needs time. Also, when I asked about getting a flu shot since he was officially 6 months old, he said he wasn't that concerned because the rest of us did get the shot and he was already getting 3 pokes. Ok, to a heart mom, 4 pokes is nothing and you were very concerned when we opted to follow our cardiologist's advice to forgo the RSV shots, but a $30 flu shot isn't "worth it"? Needless to say, a new ped is in our future, I have a couple of great recommendations from a friend whose baby has a "complicated" history as well. I am just so not the type to go around changing doctors and I really have no complaints about the care he has received. I believe his is a really good doctor, but this is obviously not working for me. Ugh.

Since Ryan's 6 month birthday fell during December, I didn't want to take him to a busy, germy portrait studio, so I tried to set up a little studio in my hallway, next to the front door for light, which I would have liked to have had a little more of. I was in the office taking pictures and the FedEx guy delivered a package and I'm sure he thought, "What is this naked baby doing setting by himself in the hallway". I had a little heater out so he didn't cold and he loves it when I get out the camera. He smiles so easily. He is probably like, hey, mom is actually looking at me and paying attention to me instead of just schlepping me around on her hip.

Cardiology Followup Appointment

Ryan's follow up appointment with Dr. Drake was last Thursday.  I now know that he was really just checking (via a chest x-ray) to see if his diaphragm had started function again and .... IT HAS!  We are so excited and relieved to see the normal x-ray.  We had heard many times that it would, but never got any exact odds or a timeframe or explanation in general other then it can take a long time, so we had gotten discouraged, but it is all in the past now.  His lungs are clear and he no longer needs to take Lasix, a diuretic that was keeping his lungs from accumulating to much fluid which would have made his heart work harder.  When I was cleaning the kitchen, I saw the bottle and all of the syringe dispensers and thought about throwing them away, but waited for Jason to get home, so we could do it together.  He will not need to see his cardiologist again until April, 6 months from now, when he will have an echo (ultrasound of the heart) to make sure that his heart is continuing to function as it should and that there is no excessive narrowing of the pulmonary branches.  During his first follow up at 2 months, he had an echo that looked great according to Dr. Drake.  There was a small amount of narrowing, but according to Dr. Drake, that is really inevitable in Transposition because of the manner in which the arteries originally formed.  He says that he will watch pretty closely for the first year or so because growth is so rapid.  Eventually, he will need an echo just once a year.  I read the blog of a mom to a five year old boy who was born with Transposition and she was talking about that now his yearly checkup is about the only time she thinks about his heart and how that was a slow transitions.  Like anything, first she would go a day, then maybe a week and eventually think of it only rarely.   That's still hard to imagine, but I can at least imagine it now that his diaphragm is working. 

 

Another heart related tidbit, I finally got to met the heart mom that made the blanket that was in the care package we received from the CHD family support group while we were in the hospital (actually while we were waiting during surgery).  I knew the family went to our church because there was an article about them in the church newspaper and I had seen them a couple of times, but just never made it over to say hi after mass.  Today, I was at a skating party with Kyle and I saw who I thought was the same mom, so I asked and it was.  The story is kind of hard to explain and no where to start, so I am sure she thought I was a complete lunatic or stalker, but eventually I explained it and it was a great small world story.  I really want to get my act together and make a blanket or two for a care package to go to another family.

 

Milk News

I got my package from the milk bank in Denver with shipping instructions.  I am so excited.  A really ironic thing happened tonight as well, in the milk bank's newsletter it said that some preemie's born with underdeveloped eyes that are feed donor milk are able to develop vision and I just met the most adorable little boy who was a 23 week preemie and is blind in his right eye.  I just thought that was really strange and makes me so grateful that there is a mechanism for me to donate all of that milk in the freezer.

 

Hospital Memories

It seems like I have been thinking alot this week about the time we spent in the hospital. There are probably a couple of reasons. I had thank you cards with Ryan's picture printed to send to the different places in the hospital he received care. The card for CV Surgery and the PICU I was able to give to our neighbor. He is a pharmacist in the PICU and was such a blessing during that difficult time. We knew he worked at Children's, but weren't sure where until Jason ran into him on the day of the surgery completely by accident. He said he had seen a Stratman on the board that morning and started to connect the dots. He came to room where we were waiting at the end of his shift and told us Ryan's room was ready and that he really liked the doctor that was on call the next day. We saw him every day that Ryan was in the PICU and he always came to Ryan's room and told us we had the best nurse in the unit. It was just so nice to have a familiar face in all of the chaos that was the PICU. The other cards to the NICU, 4S, Cardiology and Lactation teams I just mailed and hope that they will find the right places. I don't know that anyone will remember us, but I thought they might like to see pictures of a baby doing so much better then what the see day in and day out. Another reason for my thoughts of the hospital is a post I received from a mom in Utah whose son was also born with TGA and is about a year older then Ryan. She has a founded a support group in Utah and her blog has lots of good information and links to other blogs about heart kids. I have probably spent way to much time reading these, but it is interesting to see the journey others have been through. Everyone is a little different and I was wanting to find someone who had also dealt with diaphragm paralysis, but haven't. Maybe it won't even be an issue for us anymore. When I was in for Ryan's last weight check, I asked if we could check his sats and they were in the high 90's as opposed to the low 90's where they generally stayed while we still had the monitor. That lead me to hope that maybe his diaphragm is working, but I guess it could also mean he is just compensating better. His breathing rate is still on the high side of normal and he still sleeps more then my two older boys combined ever did, so we will see. He sees the cardiologist again a week from Thursday. I am still hoping he got approved for the RSV shots, some part of the insurance company called late Friday to ask when the shot was scheduled, which I didn't know had been scheduled. They said they received the prescription, but it just said October and they needed the date and a recorded weight within 30days. I said that I would find out on Monday and I was so happy that he had been approved and she said that this was just the first step and she didn't know if he was actually approved. I will keep my fingers crossed. I'm going to try to focus more on being present this week and not thinking so much about the hospital and reliving all of the details, especially since I may start working again next week. I said that I would be available if they needed help and my boss said that everyone was busy. It's time, I think and maybe working will keep me spending to much time reading about CHD and obsessing over the past and worrying about the future.