Picture Recap

Robert's stay in the RNICU at UAB (his first 10 days)...

Check out those sweet lips!

Going home!

The umbilical cord is still hanging on...

Sitting in wait in the ER at USA Children's & Women...

UAB arrives to pick-up Robert...Robert now says he only flies private. (Hahaha!)

And off he goes...

Back at UAB in RNICU...

Big sister, Emerson, and "Bobby"...Dr. Emerson came to try and fix "Bobby"...Thank goodness for insurance...!!!One last family picture before surgery...Phillip giving Robert a finger shake before surgery...Stay strong, little guy!
The nurse and respiratory therapist preparing for transport to the OR...
Robert looked back at us like this the entire walk from the RNICU to the OR...
Our drop-off at the OR. This is where we said our "see ya later's"...In the CICU, following surgery...
A day later, Robert is slowly coming off medications and various tubes being removed...

Robert was moved to the step-down pediatric cardiac unit after 3 days in the CICU...

This is puppy...Our new best friend! :) (A gift from Emerson!)

Incision 1 week later...

Update since OHS #1

I previously thought that when you were in the hospital (or sitting with a patient) that you were beyond bored...and, for the most part, just watched TV all day long. In our hospital experience within the past 5 weeks, I have hardly watched any TV and can't remember much time of just plain boredom. I usually don't know what day of the week it is...or when I ate last...or much of anything. Our hospital rooms have all been interior rooms (i.e. no windows), therefore, we can sit much of the day without realizing we missed "lunch". There have been days where we arrive before daylight and leave after the sun has set.

So that all being said, this is what has occurred since my last post...

We knew a procedure of some sort was imminent. We knew that the cardiologists and surgeons were debating a heart cath to balloon his pulmonary valve or open heart surgery to (hopefully) fully repair all of his heart defects. I had been carefully listening to the doctors and nurse practitioners each time they came in and discussed his case. I knew the pros and cons to both (or so I thought at the time). And on Tuesday, I was fully prepared to tell the cardiologists that I wanted them to at least try the heart cath because he was just too small for the full repair (i.e. open heart surgery). But, of course, the cardiologist came to do another echo and gave us some various information and answered our questions that afternoon...And I realized that he is a whole lot smarter than me and I just needed to trust him. So open heart surgery seemed the way to go. We were told that a possible angiogram would happen later in the week because the echo wasn't able to provide all the pictures they needed to locate the coronary arteries (how they laid across the heart).

On Wednesday morning, we arrived at the RNICU where his nurse told us that surgery was most likely going to happen on Friday. Open heart surgery for the full repair! I had been preparing myself for surgery to occur on the following Monday at the earliest...BUT FRIDAY?!?!?!!! I had a little bit of a cry and then pulled it back together. Friday it was. As time moved on, we heard that a last minute opening had occurred in the operating schedule and Robert would be the first case Friday morning. We spent as much of our time with him as possible. Because of pre-op tests, labs, x-rays, etc., we were asked to leave the room throughout the day only to return to find one more bandage or one more monitor. We met with Dr. Dabal, his pediatric cardiac surgeon, on Thursday afternoon. He explained the entire procedure, what they would be doing, and what the possible outcomes were. Of course, everything came with a percentage...For example, 2-5% of receiving a pacemaker. My thoughts were 2-5 out of 100...Well, it was 1 out of 4000 for TOF...Those odds just don't look so good anymore. And asked us to sign consent...

Friday came quickly and we were up at 4am for surgery to start around 9am. All the grandparents arrived before 8am. At 8:30am, we walked with him to the Cardiac Operating Area and said our "see ya later's" (NO GOODBYE'S!) and then were escorted to the CICU waiting room.

Our wait included a few visits from friends and family, including the Hathcock family! When I posted in the TOF facebook group about our upcoming surgery and needed advice, my email buddy, Stephanie, sent me a message about stopping by the CICU waiting room as they would be at a cardiology appointment that morning at UAB as well. We have never actually met the Hathcocks, but through six degrees know the same people. It's nice to know someone going through the same type of thing (Micah is 3 months old), using the same doctors, and near each other in proximity.

A few hours after surgery had actually started, we received the call from the waiting room nurse that the surgeon was ready to see us. The surgeon came in and through a lot of words told us that he was unable to do the full repair. Basically, the right coronary artery sits right over the pulmonary valve making it VERY difficult to make the cut to repair and enlarge the pulmonary valve. Therefore, Robert was given a central BT Shunt. Even that was more complicated as he was on the heart-lung bypass (usually not when just receiving the shunt), therefore, he bled more than usual. Also, Robert has a right arching aorta (versus left arching aorta like most people)...This apparently means (for Robert, at least) that he has 4 smaller branches of the aorta versus [in a left arching aorta] 1 large branch and 2 smaller branches. Originally, this is one of the reasons that we were told the BT Shunt was not an option (the larger branch was not an option)...When the shunt is sewn into one of the branches of the aorta it actually make that branch smaller (due to the stitches), therefore, sometimes worsening blood flow.

The good thing about all of this is that we have bought some time before the full repair. He has time to eat, grow, gain weight, and be stronger. Of course, Robert is still on a ticking time clock...He needs the surgery for a full repair before he is one. We don't know when his next surgery(ies) will be, but his surgeon told us that he will probably need at least 2 more open heart surgeries and possibly a procedure in between (heart cath to balloon the pulmonary valve). It seems like we have a busy year ahead, but at least now, the cardiologists and surgeon have a map of his heart. They know where everything is and how they will need to get there.

After the surgery, Robert was in CICU and stayed there until Monday. And then moved to a recovery room for pediatric heart patients. In CICU, Robert had his very own nurse, scheduled visitation hours, and doctors rounding every hour. In the step-down recovery area, the parents do all the work...We feed him, change him, bathe him, etc. plus help administer all medications. Someone had to be with him 24/7 and he could not be left alone under any circumstances. They were preparing us to go home. On Tuesday, we were told that he was doing really really well so we would most likely be discharged on Wednesday. The surgeon came by to check on him and felt that we were fully capable of taking him home that day! So it took most of the day to meet with various people (who were teaching us how to do things) and then we left. The doctors were happy to hear that we were staying only a few miles away and were staying for an additional week regardless of him being in the hospital or not (another already scheduled appointment on August 3rd that we have had for weeks). So they scheduled an appointment on August 4th as well to have a check-up before we return to Mobile. At that time, Robert's pediatrician, Dr. Weinacker, and his cardiologist, Dr. Batten, will take over his care until we are told to return to UAB for further surgeries. I only hope that the next procedures/surgeries are scheduled and it includes no emergency flights! [Selfishly because I would like to have more than a handful of mix-matched clothes with me for a 3 week stay 5 hours from home.]

So 3 days later, as Robert recovers from open heart surgery, we are taking it slow. The slightest thing causes panic. Did he eat enough? Did he eat it too slow? Too fast? Is he crying too much? Is he crying because he's uncomfortable? Is he having enough wet diapers? Is he blue and ashy in color? Is he sleeping too much? Lots of questions...

I will be adding pictures later...Check back soon!

The saga continues...

Sorry to leave anyone in the dark and not post much after the last one, BUT on Sunday afternoon, we already knew that Robert would again be staying in the hospital until Monday. Since Robert was on the Pediatric floor with no nurse by his bedside, a parent needed to be present at all times (otherwise, he would have been alone in a general hospital room and not attached to any type of alarm). So I sent Phillip on his way home to get a shower, repack a bag, eat lunch/dinner, etc. and I would go when he returned. While he was gone, I pulled a chair to Robert's bed as close as possible (the oxygen and monitor just doesn't go very far) and held him for a while. Unfortunately, due to the circumstances, he gets held very little these days. He was doing great and seemed to love being held. But after an hour or so, his oxygen stats were falling into the 60s (when it had been a general high 70s and low 80s). I gave it a few minutes, repositioned him a few times to see if that helped any, and then called the nurse. Robert had done pretty well that day so over hours of time, his oxygen had slowly been reduced from 2 liters to 1/4 liter. But the drop into the 60s changed all that and every few minutes it was being increased. When he was back at 2 liters and not showing much improvement, the nurses called the cardiologist. As this was becoming our usual battle, he decided to send him to PICU for closer monitoring. The PICU doctors came down to take a quick look at him and get him ready for transfer. Not that I should be "excited" Robert was going to PICU...BUT it did mean that he would have more attentive care. I just don't think it is right that a 3 week old infant is in the general pediatric rooms.

At transfer, I was told that the cardiologist had called UAB. And they were waiting on word about transfer there. Phillip has still not returned from home at this point. I was a little confused and heard that we would be needing to go to Birmingham soon for further consult, monitoring, possible BT Shunt surgery, etc. I apparently did not understand that UAB was looking at the current weather situation and trying to determine if they should send the jet or the helicopter. Around 6:00 p.m., we were settling into the PICU room when we received word that the air transport team would be at USA at 7:10pm exactly. Robert would be transported by jet to UAB. Myself and Phillip were not allowed on the plane, therefore, he would be going alone.

As you may assume (and I would assume myself if I wasn't actually there), I would be hysterical, but surprisingly, I wasn't. Our 3 (almost 4) week old is being airflighted to a city 5 hours away??? But although I was worried, upset, etc., I was also relieved...Robert would be in the same place as the cardiologists and surgeons that would ultimately repair his heart and save his life. It's not a bad place to go I guess...

We stayed in PICU until the air transport team showed up to collect our baby. We signed a few consent forms and off he went. We, on the other hand, still had to find our belongings and drive to Birmingham...physically and mentally exhausted...and very sleep deprived. We stopped for gas and a 5 hour energy drink (for Phillip - the driver) and went. No stops in between there and the hospital.

Upon arrival around midnight, we found Robert all swaddled and tucked into a warming bed. He looked very peaceful and was resting. The nurse told us that his oxygen stats had dropped a few times into the 50s and 60s, but they were able to stabilize him with oxygen, meds, and an IV drip.

As of Monday, we heard that the cardiologist and surgeon are discussing what to do next...BT Shunt, heart cath to balloon his pulmonary artery, or open heart surgery for hopefully a full repair. We should know by the end of the today (Tuesday). It seems that they don't believe he is a good candidate for the shunt as it can cause the oxygen levels to go too high (in the 90s) and can lead to other serious problems before the full repair (and his oxygen levels vary so widely throughout the day now that it could push him too high). At the moment, I am praying for the heart cath. I just don't think I am ready for our 4 week old to go in for open heart surgery. We were told 3 weeks ago that he really needs to be 15 pounds before that happens. Right now, he is just 9 pounds 3 ounces.

As of this morning, we are waiting...still waiting...waiting on the cardiologist and the surgeon to discuss what they think is best.

In the hospital again...

From the beginning...On Thursday, we went to Robert's first cardiology appointment with Dr. Batten here in Mobile (would have been last week, but his doctor was on vacation during the July 4th week). He had an echo cardiogram and a few other tests including his oxygen saturation level which was at 82%. Dr. Batten really wasn't comfortable with that number, but he wasn't relying on oxygen to get there and it may have just been a low for the day. So she decided to order us a home oxygen monitor, oxygen, and portable oxygen. Basically, she wants us to put him on the monitor a few times a day and write down the number so she can see a bigger picture at our next appointment (and the oxygen is just in case). We weren't expecting to receive a monitor considering UAB had sent us home empty handed on medical equipment because "it would drive us crazy" (the monitor has this very loud and annoying beep each time the oxygen level drops below whatever is programmed as acceptable). And UAB is probably right...BUT if we need to be monitoring his oxygen level then we still need it. The home health group called Thursday afternoon to schedule coming out on Friday.

On Friday, the home health nurse came at 11am as scheduled. She brought the oxygen monitor, oxygen concentrator, and 2 portable oxygen tanks. She immediately hooked up the monitor and placed the sensor on his foot so we could take some reads on it before she left. In the meantime, she spent some time setting up the other equipment and showing us where to plug in the various cords and hoses and generally showing us how to work it. The monitor was reading low...As in the 70s low. So the nurse played with the monitor a bit and adjusted the sensor several times. It remained in the 70s even dipping into the 60s at times. As the oxygen was already plugged in and hooked up at this point, we went ahead and put Robert on oxygen to see how that would affect his levels via the monitor. He remained in the 70s. The nurse ensured that all the equipment was properly working and the monitor was reading correctly. Awesome. During all this, the nurse found that the regulator for the portable oxygen tank was leaking and needed to be replaced (the portable oxygen tank won't work without the regulator). So she was going to take the broken one and send out a new one either later that afternoon or next day. [No worries...Because we aren't going anywhere, right?]

After the home health nurse left, we called his cardiologist's office. Upon speaking with them (our actual cardiologist was off so her partner will be handling his case this weekend), we were told to put him on the portable oxygen and come in to be checked. Unfortunately, we did not have the regulator for the oxygen tank, therefore, we wouldn't be able to keep him on oxygen while we drove there. The nurse said that they would call us an ambulance [Ummm, why?] Apparently, the nurse had documented that we did not have access to portable oxygen and they could no longer advise us to drive Robert to their office. [Okay...He was not on oxygen an hour before the home health nurse delivered the equipment...And he seemed no different.] So this was our ride to the hospital (as an ambulance will only take you to an ER - not a doctor's office)...

My first ride (and hopefully only) in an ambulance was not very exciting. It took us a while to get loaded up, then we took the scenic route and seemingly took us longer to get there than it ever would if I had driven myself, and no lights. Robert sat on the bench next to me in his car seat while the EMT held oxygen up to his nose. Pitiful, right? And then they had to load him on a stretcher to take him into the ER... Hospital/ambulance policy seems a little overkill when you place an infant strapped into a car seat on a stretcher...

When we arrived to the ER at USA Children & Women's, they gave Robert a quick check (temp, weight, etc.) and then hooked him to their oxygen monitor. Just to check, they kept our monitor hooked to his other foot and compared the levels (to ensure our monitor was reading correctly). The numbers matched. Our home monitor was unhooked and they continued hooking him to various other things. He was left off oxygen for a while to see where his true level sat. It was in the 70s. Back on oxygen.

The cardiologist came in and looked over his stats and current oxygen level...and decided that Robert needed to be admitted for observation. So at least one night in the hospital it seemed. The orders are to stabilize his oxygen levels between 80 and 90 preferably in the mid-80 range. If oxygen is needed then keep the level at the lowest possible, but under 2 liters. If his oxygen level cannot be stabilized within a 30 minute time frame, then Robert needs to be sent to Pediatric ICU (PICU). And if it cannot be stabilized within a 1 hour time frame, then Robert needs to be transferred to UAB.

After a wait for a room cleaning, we were sent to Room 425. As I write this blog entry on Saturday morning, we still sit in Room 425. I am a little confused as to why...We definitely hit the 30 minute mark to go to PICU before midnight last night. And I would say, we also hit the 1 hour mark as well. But the residents/doctors working last night didn't feel that he warranted a trip upstairs. It was almost as if they were scared to send him upstairs to PICU because they might be reprimanded if the PICU doctors decided he didn't really need to be there. Each resident/doctor would find a resident/doctor higher on the food chain to come check him out and ensure he was still "okay" and back up their decision to keep him on the pediatric care floor. The lesser doctor would bow out at that point and allow the newer doctor to take over. I just couldn't figure out what was going on...Were they unsure why he still looked "pink" and didn't seem to be distressed beyond the numbers on the monitor??? I am confused...They trust the monitor when its reading a "good" number (i.e. 80+), but when it reads low then it must be something else (i.e. monitor is bad, sensor is in wrong place, its not picking up correctly, etc.).

On a funny note (not that much is actually funny right now), Robert gets his meals delivered 3 times a day because he is on the pediatric floor...? This was his welcome to the hospital dinner. Ummm, gross. Plus, he is THREE WEEKS OLD!

Throughout the night and the incessant beeping of the alarm, Phillip and I were left on nurse duty. The monitor does not connect to anything outside of this hospital room. Therefore, it is left up to us to notify the nurse if anything needs to be done (i.e. just generally check on our child). We were constantly checking the monitor and letting someone know that he wasn't stable. It doesn't help that the way the room is organized, we have a really uncomfortable couch to sit on that is on one side of the bed, the monitor is on the other, and you can't see the monitor from the couch. So it was just constant up and down to see the monitor. Around 1am, I pulled a horribly uncomfortable wooden chair to the end of the bed, placed a plastic pillow on the food tray, and slept there for an hour or so. At one point, a nurse came in and asked where the recliner was. [Recliner??? You mean we get more than a mini-couch and 2 wooden chairs???] Apparently, when a room goes vacant, the other "tenants" on the floor steal furniture out of the room for use in their rooms. It would be really nice to have a place to sit next to our baby rather than standing there at all times of the day. This morning has been better though...A little less beeping (the alarm level was turned to 75 versus 80 so that helps) and we seem to be a little more rested (how in the world that happened...I will never know). But his stats still aren't great. They sit in the lower 80s and have been in the high 70s for a while now.

The cardiologist came in a few minutes ago to check in. Basically, he listened to his heart rate, checked the sensor and the monitor, and said he wants Robert to be off oxygen completely and have a stable oxygen level in the 80's before we go home. That means at least one more night in the hospital. They have put him on medication as of midnight. He is taking Propranolol four times per day. We were prescribed that at our cardiology appointment on Thursday, but the pharmacy was unable to fill it until 3pm on Friday (after he was already in the hospital). So the doctor put an order in for the nurses to give it to him while here (not really sure why it took till midnight for them to start giving it though...???). The medication should help in bringing up his oxygen levels and lessening his need for oxygen to maintain those levels. According to the doctor, Propranolol is "voodoo medicine"...meaning that no one really understands how it works, but it works. The doctors at UAB warned us that Robert may be prescribed this medication at some point even though they believed that it didn't work, but also believed that it didn't hurt anything either. I guess we will just see how it goes over time...At this time, Robert is sitting at the low 80 range when sleeping and no activity (in the 70s when active) and is on 3/4 liters of oxygen. If Robert is unable to keep his oxygen in the 80s range without oxygen (regardless of medication), then the cardiologist will contact UAB to go forward with the shunt surgery. I assume that means we will be traveling the first part of next week...?

So in the meantime, we wait. We wait for more doctors to give us their opinions. We wait for the nurses to actually check on him. And we wait for results.