Thursday, August 23, 2012

"O" Thank Heavens!

Today I took Frankie to see Dr. Keller (pediatric surgery) about his O. It was so nice to zip in and out of the doctor with nothing but good news! We've just been dealing with so much because of his heart and lungs recently that I was afraid there would be just one more thing to add to the list. His O looks great! There's a lot of good skin growing up and around it. We no longer need to use silvadine unless a spot becomes raw from him scratching at it (when we unwrap it, he scratches like crazy from the gauze itching him!). Here's what the doc said:
-Once Frankie is 100% healed from his heart surgery, they will bring him in and consider his first repair surgery.
-Frankie has to have the "okay" from cardiology before any repair work can be done. Once his heart is fixed, that's out of the equation but his lungs will need to be very, very strong. When they start to put things back in, it will feel like he's had three Thanksgiving dinners and it will make him breath harder at first, until he's used to it.
-When will this be? Not until he's AT LEAST 2. We must remember, we are on Frankie time. And he needs a good amount of time to recover from his heart surgery.
-After Frankie's heart surgery, he should be able to grow much better since his heart wont be working over time. Frankie still needs to be larger to put things back in. He's still a little guy.
-It will take most likely 2 surgeries for him to be closed up. Definitely not just 1.
-Most likely have to use a "patch" to help close up his abdominal muscles.

All of this is good news. Let's get Frankie through this heart surgery, give him time to GROW LIKE A WEED! And then we can start working on his tummy! Which is knows now and will pat it when asked and it's extremely cute. That's it for now! Love you all! Here's a picture of him doing his usual.... Hamming it up!

Thursday, August 16, 2012

Welp, it's been scheduled....

I just finished speaking to the gal in Dr. Boston's (heart surgeon) office and have scheduled Frankie's ASD repair. I think I might just have a stroke now..... Sept. 25th, 2012 is going to be the most terrifying day of my life. Lots of prayers, extra strength and all that good stuff for baby Frankie. Much love!

Below is a normal heart and that Frankie has. 

Who doesn't love extra parts on their heart?!

Hey everyone!

So, Frankie did really well during his cardiac cath! They gave him some versed before they took him back into the cath lab hoping he would be all chill when they tried to start sticking him. Well, not so much. They quickly learned that Frankie is an extremely feisty SOB and we like it that way! They also learned he's STRONG! That's what they get for messin' with Frank! Anyhow, once they were in there it took about 3 hours in total for them to do everything they needed. They placed Frankie in the CICU (cardiac intensive care unit) just for the night. Not because they thought there was a problem but just because he is awfully complicated! Wouldn't have it any other way. When we got to see Frankie he was sedated. He had to stay flat on his back and his leg straight for 6 hours! Well, we all know how busy the tank is and this was almost impossible! About an hour and a half into it, someone decided to try and wake up and party! They gave him more meds to sedate him and Joe and I gently held in him place for about 45 minutes until the meds did their thing. He wasn't upset or anything, he just sleeps on his sides and kept trying to roll over.

Extra parts you say?! Yeah, we were shocked, too! In a typical heart you have ONE svc (superior vena cava). The svc is a large but short vein that carries de-oxygenated blood from the upper half of your body to the heart's right atrium. Well, Frankie has TWO! Does this cause any issues? No, not in his case. His second svc does the same thing has the first. His blood still ends up in the correct place and is correctly oxygenated it just goes a special path to get there! They both work. Thankfully they noticed this (quiet frankly, I'm not sure how no one has ever noticed previously since we have had a million echos of his heart not to mention several fetal heart echos while I was pregnant) because when they go to do his ASD repair and put him on the bypass machine he just would have been squirting blood all over until they quickly found the problem. It wouldn't be life threatening, the surgeons would just have their panties in a bunch because they didn't know about it and didn't plug it up and it made a mess. But, fortunately, we know now.

Cath results: Frankie's pressures in the right side of his heart are moderately elevated. Typically the pressures are around 30 and his are 50-60. The right side is just working over time. They also tested his lungs to see if they would react to the gases they help lower the pressures in the lungs and he didn't respond at all. Not too sure what the means from here. Most likely that some of the medications they would use for pphn would not work, the inhalants. The cardiologist says that we need to schedule his ASD repair asap. I am awaiting a return phone call on the scheduled date. I asked if I could wait until after his first birthday and they said yes. So, I'm going to try and schedule it the day after his birthday, if possible. Once I have it scheduled, I will let everyone know. When speaking the the heart surgeon, he said that it is okay for them to go through with his ASD repair and that it will help his pphn, not make it any worse. Frankie's hole in his heart is approximately 8-9mm which is giant. His entire atrium wall is only roughly 11-12mm. When they close his ASD, they will be leaving a "pop off valve" (a small hole) that will be 2-3mm. The reason they do this is because his lungs are used to having that extra flow and need to relieve pressure. A lot of times in kids with pphn, they make a small hole. Currently Frankie's lungs receive 2.4 times the amount of blood that a typical child does. So, Frankie's repair will definitely have to be ohs (open heart surgery). They will put him on the bypass machine and his heart will not be beating for about 30 minutes. It's impossible for me not to tear up and get short winded while typing this or even thinking it. He will most definitely have to be intubated for this procedure but they plan to extubate while still in the OR. I pray that they can. Typically, a child is at the hospital for 3-5 days when they have an ASD repair. We were told to plan for 7-10 days. Anything sooner would be a plus! They don't anticipate his body rejecting the repair but there is always a small chance that it will and they will have to open it back up. Since they are leaving a pop off valve, I don't foresee this being a concern. During our stay, we will be in the CICU, at least for a few days and then possibly moved to 7 west (cardiac floor) until we go home. Just depends. I think that's it. If I think of anything else, I will update. Or if anyone has questions, by all means ask away. It was a lot to take in and I'm trying to explain it to the best of my ability.

The aftermath: Frankie is pretty bruised, mostly from them trying to put iv's in. He has a few small scratch looking marks where they went in to his femoral vessel in his thigh and it's also bruised there. But, he has bruises on his foot and hands, wrists from them trying to get iv's. Thankfully he was asleep when they did this, well all but one! 

I've just started rocking and rolling on Frankie's 1st birthday plans today since tomorrow he will be 11 months old! It's hard to believe!

That's all for now! I'm beyond thankful for all the prayers! LOVE YOU ALL!

Saturday, August 11, 2012

Cardiac Cath Scheduled

Hey everyone! Frankie's cath is scheduled for Tuesday at 1130am. We will be staying over night. I will be sure to keep everyone posted on how he's doing and of course the results. Keep him in your prayers. The procedure will take 2.5 hours if all goes accordingly. Unfortunately, he will have to be intubated for the procedure but they plan to extubate immediately. Thanks for all the support for our family! Much love!

Wednesday, August 8, 2012

PPHN is for the birds...

Here's what went down....

In mid June, Frankie and I both got hit with a pretty bad cold. I do not have PPHN so I bounced back from my cold and all is well. Frankie on the other hand takes a big hit. He went back on oxygen in the beginning of July. His cold seemed gone. He had no more symptoms but he needed some support because his saturation was dropping. On July 14th, we wound up in the ER because Frankie's saturation was only 89% (should be 90% or better) and he was on 2.5 liters of oxygen. When we arrived to the ER, they put him on 3 liters, gave him a massive dose of lasixs and did a chest x-ray. His chest x-ray came back fine and the lasixs seemed to help. The did lab work and his white blood cell count was elevated so they said it was due to him still fighting that cold, internally. They did give Frankie a steroid burst for 5 days and we doubled his lasixs for 5 days, too.

Since then we had his oxygen down to .5 liters but over the last few days to a week we have increased his oxygen thinking it would help him since he was breathing so hard. His saturation hadn't dropped but he was breathing very hard. Head bobbing, chest pulling. On Monday night I went to put him to sleep and he started crying very hard (not typical for Frankie). He was screaming like he was in pain, his face turned grey and his lips turned blue. I scooped him up out of bed instantly and he started to calm down. That's when we decided it was time to go to the ER.

We arrived to the ER at 8pm. It was an absolute zoo in there! I've never seen it like that before. People everywhere. It drives me crazy that people don't take their kids to urgent care for things. You don't need to be in the ER because your baby has a diaper rash! Seriously?! Anyhow, after calls to the cardiologist on call and some Nicu friends, we got into an ER room at 1015pm. They took a chest x-ray, things looked like Frankie's normal. The did lab work, all was well there. They decided to keep Frankie for observation because he was breathing very hard and they wanted to do an echo in the morning. at 330am.... yes, 330am! We got up to our room on the 7th floor (cardiac floor where we typically stay), did all the getting set up and went to sleep. Frankie slept off and on for a bit throughout all of this but not much. At 4am, I closed my eyes to attempt and I mean attempt to sleep. Sharing a room isn't exactly the most fun, but hey! What can you do? With frequent wake ups we were finally woken up for the day at 7am. Frankie slept solid the three hours, thankfully. By the time 8am rolled around there were a million damn people in and out of our room it was insane. Sleeping was no longer an option. The attending doctor came in (or it could have been a cardiologist fellow, not sure honestly) and said that Frankie looked good and that he didn't need an echo and we could go home that day. I immediately said that we weren't leaving without an echo. It was the whole reason we stayed over night plus observation. She said okay. The echo was done and Frankie was very upset. He was exhausted because of course, he falls asleep like a half hour before being called down for the echo and didn't stay asleep on the way down.   Echo results: PPHN seemed to have worsened. The right side of his heart was more enlarged, his septum more pancaked. They asked us to stay another night so that they could observe him again and so that the next morning Dr. Grady (cardiologist) and Dr. Boston (cardiac surgeon) could meet and discuss changing his medicine, doing another echo and the next steps in general.

This morning Dr. Grady came in and agreed that the echo showed worsening and that he wanted Frankie to be on a steroid taper for a month starting today. Dr. Grady also suggested that Frankie get a cardiac cath done so that they could accurately measure the pressures in the heart and lungs and to give him medicine and see how he would react to it. We had an appointment to meet with Dr. Boston today at 10am but since we were already there he was going to come up to our room and chat with us about his heart surgery, cath procedure and such. We were informed around 915am that Dr. Boston had an emergency case he was dealing with but we were assured that he would be up to our room at 10am. At 2pm, still no doctor. Another doctor said they paged him and hadn't heard back so she went to check on it to come to tell us that he was heading in to a scheduled surgery. Joe and I were a little annoyed with this. We are now scheduled to meet with him on the 15th at 1230pm.

We were discharged early today on the steroid taper and Frankie is to have his cath procedure within the next 2 weeks. They will be in contact with me soon to put him on the schedule.

Frankie is doing well. He's happy, crawling as he pleases! We just need to get that ASD repaired so that we can aggressively treat the PPHN. PPHN and the ASD counteract each other. What's good for the PPHN isn't for the ASD and vice versa. Once the ASD is repaired we can remove it from the situation and that way we know for sure it's the PPHN causing the breathing issues and not the ASD.

The last 2 days have been exhausting and I'm thankful that we are home. We love Children's Hospital but this visit was not the best visit we've had. It was just very unorganized and all over the place. Not the typical Children's Hospital that we are used to.

I think that's all for now. If anyone has questions, feel free to ask away. Thanks for all the continuous love, prayers and support. Much needed and we are so thankful for it! Love to you all!

The video at the bottom is Frankie sleeping in the ER waiting area. His breathing was awful.
Taking a much needed nap yesterday.
Kisses from daddy.