Glenn Head

HLHS babies often experience headache and irritability for the first few days and weeks after the second stage surgery. They call it "Glenn Head". Both the blood flow to the lungs and the blood flow to the rest of their body is significantly altered during the Glenn surgery.  Often times, this change in flow and pressures can cause massive headaches as their bodies become used to their newly plumbed heart. We think Declan has been experiencing this. Because although his oxygen saturations have settled in the upper 70's/lower 80's, he has been very irritated.  He started to cry if he lays down, but if we picked him up and cuddled him, he would settle down. Then yesterday, he had to be in a bouncy seat that had to be bounced. Now today, not even that would calm him down. When the doctors initially declined to give him anything, I wanted to say, "here, you hold him for 4 hours while he cries and let me know what you think then". I finally started leaving our door open so they could hear him scream. I thought, "if we are going to suffer, we will ALL suffer"! One nurse commented that his cry sounded like a Velociraptor. The doctors finally had pity and gave him something to calm him down and he almost immediately wen to sleep. He had not slept all day. We felt so bad for the little guy. He would only sleep for 20 minute segments and wake up and cry. This medicine finally helped him crash and fall asleep.   Let's hope this lasts for a bit.

Up and Down

Returning back to Thursday, the day of the surgery, Declan did well that afternoon and into the evening. We were exhausted from the past few days and were hoping to get a good night's sleep. The PICU has a "parent's room" you can reserve. A pair of single cots generally provides a restful night's sleep away from the beeps, alarms and nurse traffic in and out of your room.  The room was supposed to be reserved for us that night and when we asked for the key, we learned somebody missed the memo and the room was already occupied. Tired and frustrated, we returned to our all to familiar, head to toe position on our couch. 

They say the roughest night after these surgeries is usually the first night and they weren't kidding. Around 2:30/3:00 AM or so Declan took a turn for the worse, his heart rate spiked, his blood pressure began rising, and his oxygen saturation dropped to the 50's and below - not good. The next few hours our room was filled with doctors and nurses adjusting doses, trying different medications and manipulating Declan's airflow. I think I was most scared when one doctor's sole job was to call out his oxygen saturation, "53, 51, 47" I started holding my breath. "49, 52, 48" I would be lying if I didn't say that I began wondering if this could be it. Declan was clearly agitated and in pain, he was squirming and restless.  I heard so many different names of drugs tossed around that night, so I don't recall which one did the trick. But is was something for pain, anxiety and also  breathing nitrate oxide that brought him out of it. "55, 62, 69' I could breath again. The next 15 minutes or so were silent. About 15 pairs of eyes were glued to the monitor, watching to see if his numbers would stick. Nobody said a word. Neither did anybody want to make any noise that might disturb him from his comfortable rest. I believe it was around 5 or 5:30am or so when he settled in the 80's. We learned that when Declan gets anxious or irritated, he bares down and it restricts the flow of oxygen to his lungs. That in turn prevents the proper saturation of O2 in his blood. The nitrate really did the trick, he was comfortable and resting. Looking back I think I was glad we were sleeping in Declan's room that night. You not only gain an increased appreciation for the medical team, but just watching him fight-the experience- brought Tammy and I closer to each other and bonded us tighter to Declan. 

Unlike the previous night, Friday was much more calm. Declan's stats stayed where the doctors hoped. Much of the day was spent weening him off of the Nitrate Oxide. he went from 40 ppm down to 5ppm by the end of the day. The surgeons also removed the two draining tubes from his stomach/area. Thankfully, it was an uneventful day, Declan could rest and recuperate. I think the nurse wished his bowel movements weren't quite so healthy, but he was doing much better. As I thought about the contrast between Thursday night and Friday, it's amazing how different we felt. We went from feelings of sheer panic, to confidence after hearing the doctor's comment, "he's doing great, the first bit is always bumpy for these babies, but he's looking good". Our spirits were also lifted by a couple of visits by some friends. Nothing like food and friends to help lift you up!

Last night they continued to wean Declan from the nitrate, and this morning he is completely off of it! He still breaths a high concentrate of oxygen to keep the blood vessels in his lungs dilated. The nurses removed his central line from his neck today as well. The plan is to continue to try to ween him off one thing at a time to try and isolate what might (potentially) cause his O2 to drop again. So far, Declan is responding well. He has been such a little trooper. His swelling decreases, day by day, and he actually gave me a half smile. This morning as I looked into his eyes, I fought back my own tears. When you look into his eyes, really look; you can see he is back.

Declan's Glenn Surgery

Although we've been in eager anticipation of this day since Declan's first heart surgery, we were still a bit nervous going into his Glenn Surgery. We wheeled Declan down to the OR around 7:30 this morning. Although he was still pretty drugged up from his Catheter, he opened his eyes and we said our teary goodbyes. We anticipated that most likely things would go according to plan, but it's tough to get that small possibility of things going wrong out of your mind. I was trying not to let Tammy see my tears. It touches your heart to see his eyes staring at you, wondering what is going on. But we got through our goodbyes in one piece.

The doctors and nurses were kind enough to give us hourly updates: preparations for the procedure are set, he's hooked up to the machines, the repair is complete, his chest is closed, etc. The surgery makes for a long day, always looking at the time, watching and envying other families come and go, and wondering how he's doing. Around 2pm or so the surgeon returned and let us know that Declan did great. No complications, no unusual reactions. His chest was closed and we could see him in his room shortly.

Returning to our room we found Declan in a similar post-op state to his first surgery: tubes and wires coming and going from his little bod, breathing through the tube, and swollen little face and body. The room was full of nurses and doctors once again helping Declan get "settled in". One line going into his vein in his neck was in need of another stitch because it was oozing blood and they played with his breathing settings to get his O2 where they wanted it. After a few hours of nervously listening and watching the team, we had our first meal of the day: cafeteria turkey and green beans - yummy!

The final large hurdle of the day was weaning Declan off the breathing tube. Same drill: the room fills with the medical team and as the breathing tube is cautiously removed. We all held our breath as we nervously watched for Declan to take his breath. He responded well and even on room air his saturation was in the mid to high 70's. However, about 30 minutes later his O2 began dropping. They gave him the nasal cannula, with a bit of air and now he has currently settled in at about 75. We will see what the night will bring. The next few days will be spend working to get his saturations up without assistance. His lung resistance is still a bit high so we may have to do something to account for that, but time will tell. Overall a successful day! Thanks for all of your support today, we felt all of your love and prayers!

Change of Plans - continued

During Declan's catheter, we took a break from the hospital - we ate lunch and took a stroll around the lovely city of New Haven. We had to step away - just feels like we had to take a step back and see the outside world again. You get so caught up in everything in your little bubble of a room, other then venturing out to the nurse's pod.  We enjoyed the stroll and cool air on our faces. We returned to the PICU room shortly before Declan arrived. Once he was settled in the room, a dozen or so doctors, assistants, and who knows who filed in for the update. His report was good. All went well during the process of the catheter, his body handled it well. However, our eyebrows raised a bit when we heard that there was only very minor narrowing of his shunt. We were expecting that to be the primary reason that he was saturating low - and preventing the blood from returning to the lungs to pick up more oxygen. But that is not the reason that he is destating. Apparently, his lungs are themselves providing resistance and preventing more blood from reaching his lungs. This new information will not prevent him from receiving the Glenn operation. Declan still needs the procedure. His body is still outgrowing the shunt, and that should help his O2 saturations a bit. The surgery is scheduled for tomorrow around 8am or so. He should be out by 1pm or thereabouts. We will keep you posted. These surgeries are nerve-racking times. Last surgery I made a small video, but I already did that today to keep my mind busy (my IPhone does have a purpose).  But we appreciate all of your love and support!

Change of Plans

Tuesday morning we awoke feeling good. Declan was going to have his catheter and we'd finally have some answers. Then walked in a doctor around 8:30 or so, "We've had an emergency with another infant that was life threatening and needed a catheter" As a result, that baby got the catheter slot and we were in a waiting pattern to see if Declan would still get one Tuesday.  We waited and waited and a few hours later they popped in, "well, we hope to get you in today"  Meanwhile, Declan hadn't ate since midnight and we wanted to get him some food if he wasn't going to get in.

Then we received a surprise visit from the surgeon.  "Looks like you will not get the catheter today, but we'll get you in tomorrow (Wednesday) and we will do the "Glenn" surgery on Thursday." Tammy and I just looked at each other, stunned. We were completely caught off guard. By the most recent doctor accounts, it was going to be pushed down the road. But I think as they have been watching Declan desaturate so often, they new it was time. His size is also good for his condition and age as well.  At least we had a plan! That has been the hardest part about this whole thing - waiting and watching and hoping decisions can be made.

The other hard part is watching Declan's pain. He threw up his feeding tube a few more times yesterday and had to be inserted and his IV came out so they had to "probe" around to find the vein to replace it. Anytime this happens he screams at the top of his lungs, starts desaturating, and turns blue. So between his color and the noise of the monitors alarming, mixed with his blood curling screams, we can barely stay in the room as it's done. Luckily he is happy and calm otherwise - definitely a trooper!

So we'll keep you keep you updated but his catheter is scheduled for around 1pm or so. . .

A Mother's Touch

Today could probably best be described as a fountain of frustration.  This morning at "rounds" (the brief meeting where the doctors discuss the day's game plan) they discussed the probability of stinting his sano tube (to keep it open wider, longer) and thus pushing his "Glen" surgery back. Previously, they had talked about this week for the surgery, then yesterday it was next week. Now today we find out it could be further down the road. It's just tough mentally, when we had been originally been planning for a March surgery, then possibly next week, and now we aren't sure.

 

Then there is his oxygen saturation. The doctors want it at a minimum mid 70's to 80's (until his catheter) but sometimes it dips to the 60's when Declan gets agitated or excited. Typically they would add oxygen and air to his nasal cannula as needed to bring his O2 levels back up - but often times today, Declan would not respond to these efforts and he would remain in the 60 to low 70's before his O2 levels would finally rise. It is very stressful watching the monitor all day, waiting for his numbers to dip and watching how the doctors and nurses respond.

Tonight I returned to the hospital from work and found his ng tube had come out. Tammy and I cringed as we listened to Declan's high-pitched scream and we nervously watched the nurses replace his tube. We repeatedly looked at each other and thought the same thing, "we could probably do it better".  An x-ray was then taken to check the placement but the tube was not visible in the image - the best they could surmise is that the tube had coiled in his throat. So once again, we listened to his scream and watched the nurses attempt to insert the tube. After a few unsuccessful tries, Tammy stepped in and began inserting the tube but came up to some resistance so passed it off to me I got it in a few more centimeters but after hitting more resistance we saw the marker tape had slipped so we had hit the bottom of his stomach which was why it was no longer inserting very easily. It was in! Next we had to wait for another x-ray. But just in case Declan wasn't traumatized enough, the nurses returned to draw some blood. (They had tried a few times today, all unsuccessfully.)  But this time they brought the "heavy hitters" in to draw the blood. Declan began wailing again, and a few minutes later, blue faced and sweaty, his donation was complete. But before he could fall asleep, the x-ray technicians returned, removed him from his comfortable position, and took a picture of his stomach. Luckily, the feeding tube was in the right spot. The poor guy was exhausted, traumatized, and as angry as you have ever seen any 3 month old.  Tammy nestled him in her arms and he began falling asleep.

We should know more about the game plan tomorrow after his catheter.  Depending on what they see they will most likely either stint the sano, or bump his surgery up. We shall see. . . .

Back Again!

Well, here we are back at the hospital. Not exactly how I envisioned my Valentines' Day. What started as a "routine" visit yesterday ended with an unplanned stay here at Yale. I should have realized it was Friday the 13th and we were in room 13. We originally had a visit scheduled Friday that included a checkup, a visit to discuss his upcoming catheter, and inserting a "g-tube". The visit started well - initial vitals were taken and we were talking to the Doctor about his upcoming heart catheter. During the discussion, they noticed the initial nurse had not recorded his oxygen saturation so they hooked him up later in the visit and noticed it was in the "60's".  We thought it odd, since the initial nurse saw it was in the 80's (but hadn't recorded it) We checked and rechecked - the 65 was right. The Cardiologist was not comfortable with that number and wanted to admit Declan. We can be thankful that the first nurse failed to enter the first readout. Otherwise the second test would not have been performed. After discussion with the doctors and monitoring we discovered that when at rest his saturation levels were such higher, such as when we take them at home.  Similarly, he was resting when the first nurse took the reading. But when he is more alert, it is much lower. So we are grateful the first recording of his level was not charted by the nurse and had to be measured again; otherwise it could have been days or longer before we caught it.

Immediately, they performed an echo test and discovered that his shunt is narrowing; which is causing the lower saturation readings. The narrowing tends to happen as babies "outgrow" the initial shunt placed from the first operation. So in a way, we knew this would happen, but just not this quickly. Our plan going into our Friday visit was to schedule the catheter at the end of February with the second stage heart surgery (The Glenn) to follow about mid-March or so. However, with the narrowing of the shunt early, it pushes our time table forward.  Based on observation today (with has sats ranging from 60 to high 80's ) as long as they don't tank, we would be looking at the catheter on Tuesday, with surgery possible on Thursday.  From what we have gleaned from doctor discussion and observation, his weight is technically large enough for the Glenn- they just like them to be 4 to 6 months, versus Declan's 3 months.  I'm not sure how to feel about this change of timetable. On one hand I am glad the surgery will be over with sooner, but I'm also a bit nervous, as mentally I was not ready for this point and a bit apprehensive because his is only 3 months old.

So today was spent watching Declan's oxygen saturation rates and cleaning up his frequent vomiting. Usually when he's sleeping it's around 80 but when he's awake, it is much lower. So the doctors and nurses kept adjusting his nasal cannula (oxygen tube) moving the oxygen rate up and down, trying to get him steady in the 80's. It's a bit nerve-racking, with the machine's alarm ringing once his "sat rate" drops, following by doctors and nurses coming into his room to adjust things, and watching the screen, waiting or the number to rise and the alarm to stop ringing So far, it's been good enough to hold off the catheter until Tuesday, but they are keeping a close watch on his numbers. The other unfortunate part of this change of schedule is that we were hoping to address his frequent vomiting by having a "g-tube" surgically put into his stomach. We had met with the doctor who performs the procedure yesterday, with the hopes to have the tube placed prior to his second surgery, the Glenn. Now, with the second surgery so close - possibly within the week-  they can't do it until some time after the Glen is done. Thus, we are in for the long haul in changing his clothes after all his vomiting. In fact, I think we single handedly used up all the infant hospital shirts on this floor of the hospital today. From mid afternoon or so, and forward the nurses were unable to locate any more of the baby gown shirts. He's going to make his mark on this world any way he can!