Visiting Dr. K

Three months have passed since Ayden's last cardiology appointment, meaning it was time to pay another visit to Dr. K today. As always, we did a diuretic wean a week beforehand and started the appointment off with an x-ray. Then came an ECHO, vital signs (including height and weight), and a check up from Dr. K. As always, Ayden was incredibly patient and well behaved throughout. I think he actually enjoyed the ECHO process, as he got to recline on a pillow for 30 minutes or so and just relax. He did get upset during the x-ray, but that's because the tech, ignoring my statements that it wasn't necessary, held him down during the first pose (she left him alone for the second one; some hospital employees just won't listen to parents).

It was no surprise to us that everything checked out. His lungs and heart looked good. The places where Dr. Bichell made "repairs" appear to be growing at an appropriate rate. The tricuspid valve leak continues to be very small. This adds up to us remaining on course for a cath in May and surgery in early to mid summer. (Based on today's results, there's no concern about his readiness for the Fontan. The cath results will either confirm what we are seeing or tell us we need to wait a while longer.)

Weight wise, he came in at just under 27 pounds. With a height of 33 inches, his measurements are, for the first time, average. This is incredibly reassuring to us. We made the decision a few months back to take steps to encourage him to eat. Prior to that time, the highest weight percentile he had reached was about 25%. Since he has been eating, he's worked his way up to over 50%. The results show we made the right decision.

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For a few reasons, cardiology visits are very interesting. Since he goes only every three months, he changes quite a bit in between visits. He's always doing things the office staff haven't seen him do before. Watching there reactions is a good experience. It's clear that so many of them - the cardiologists, especially - truly see him as something more than just a patient. Something else that adds to the interest factor is the high traffic rate. There are always doctors moving about, either because they are passing through the waiting area to get where they are going, or because they're working in the clinic. So, while only Dr. K "sees" him in the doctor/patient sense, many other doctors get to see him while he's there. The end result is Ayden has multiple opportunities to show off and be his little charming self.

Today was no different. Ayden ran into our favorite cardiac anesthesiologist, one of our favorite PICU fellows, our favorite resident from his stay in the NICU (who is now a cardiology fellow), and the attending who we'd be delighted to be Ayden's adult cardiologist when he gets to that point. Ayden made the most of these opportunities. He walked around, showed them where his baby brother is, blew them kisses, and waved and told them "bye."

Some of those things he'd been doing for a while. Others are more recently developed. While it is often hard to get him to perform his talents upon request, over the weekend he was being especially obliging, allowing me to catch these, and others, on video. Enjoy.

He's a Friendly One

Ayden enjoys being around people. Due to health safety, he unfortunately isn't able to do so very often. What we have observed about Ayden is that he feels most comfortable around adults; he gets initially overwhelmed in a crowd but overcomes his fears quickly; he will sometimes play shy to gain more attention; he loves being the focus in an elevator or at therapies or among friends and family. I look forward to the day that he can interact more with others. I think this kid is gonna especially love school and church!

Phil & Elise and Ryan & Cat

I've missed you, Uncle Phil!

Aunt Elise is super fun!
She's one of the few people who know how to take care of me!

Congratulations on your pregnancy, Cat & Ryan!

Ryan, it's about time you came to play with me instead of helping Daddy around the house!

My Buddy, Jude

We play well together.

Great Aunt Sherry

I brought Aunt Sherry all of my toys, and she played with each one!

I practiced for my baby brother by putting my WubbaNub
down for a nap and telling everyone to "Shh!"

Chick-fil-A Spirit Night
Glasser Adoption

The salt on these waffle fries is fantastic!

We need to talk about that ice cream...

Prayer Request

A very close friends of ours from college has cancer-related surgery this afternoon. Please keep him in your prayers today and over the next several weeks.

LASIX FREE!

Approximately fourteen months ago, we departed from the hospital hopeful that Ayden's plural effusion issues following the Glenn surgery were being managed. At that time, he went home on a significant amount of diuretics to minimize the wetness in and around his lungs. After the slowest wean known to the cardiac world, Ayden's final diuretic, Lasix, was removed today from his medication schedule! Ayden has so far tolerated the weans well, and we are prayerful for continued good health!

Handy Ayden

I'm behind on so many things right now, one of which being the blog. Spending a week in and out of the hospital put us all in survival mode. I am just immensely grateful for those that helped us: the Glassers, my parents, the Dowdles, my aunt Sherry. I am also thankful for our sons: Ayden was super well-behaved, happy even, and BLM managed to stay in the womb unharmed. I know that many of you were praying for us and checking the blog faithfully. Thank YOU! I have no idea if the craziness is over (at least for the next five weeks; I still have to have the 9mm!! kidney stone removed at some point), but we are blessed that nothing terribly serious occurred during that time. Praise the Lord!

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Ayden continues to bless us with his desire to help. In January, he assisted his daddy in putting together his brother's bassinet.

There are too many great pictures of Handy Ayden, so I am putting the remainder after the break...

She's Home

This morning, we pretty much had two choices. Either Allison would go home and hope for the best, or she would get the stent put in sometime later today. We don't know if the problem has rectified itself, so it was impossible to know what the "correct" course of action was. In the face of uncertainty, we chose to stay away from a procedure (and the accompanying anesthesia, risks, etc.) that may not actually be necessary.

It's entirely possible the pain will return , but it's absence (it's been gone for more than 24 hours, during which time Allison has taken no pain medication) and her ability to urinate at a normal level now make us hopeful the issue is gone (as opposed to going home with the goal of merely managing the pain). If not, then back to the hospital she will go for the third time and the stent will go in. As the urologist said this morning, "three strikes and you're out." (He's a big fan of analogies/metaphors.)

The Plan Continues

I will skip a recitation of yesterday's events after the last post. Instead, I'll just report on where things stand right now.

This morning we had a conversation with the urologist. There is a large kidney stone actually in her kidney. This is not the source of the problem. So, either the baby is pinching off something and causing the fluid to back up, or there is another, smaller kidney stone they cannot see that is clogging up the works. The urologist gave her three options: (1) stay in the hospital while they try to flush it out; (2) go home on pain meds; or (3) insert a stent to provide another avenue by which the fluid can drain. After some conversation, between us and with Dr. Graves, we decided we'd give option 1 another 24 hours before we resort to option 3 (option 2 has already failed once and was immediately removed from consideration).

So, she's going to be in the hospital at least another night and will possibly have the stent procedure tomorrow morning (which would probably keep her in the hospital through tomorrow night, also). Hopefully, there is a second stone in there somewhere that she will pass before then and this will all be over. Well, over for now. The stone they can see is probably way too big for her to pass, so that will be dealt with after she has the baby (they don't want to do any of those treatments while she is still pregnant).

She didn't have any major pain episodes last night, so we both got some much needed sleep (I stayed with her at the hospital last night). Please pray her pain will continue to be managed appropriately so she can rest. She is starting to urinate more than she had been yesterday, so maybe all the fluid is starting to do its job.

A Plan (Finally)

The morning's renal ultrasound revealed Allison does indeed have a kidney stone. With this diagnosis comes an actual plan, which is something the doctors had failed to give us up to this point. They are going to do everything they can to get the stone flushed out. Allison will not be coming home until this happens. In the meantime, they have made some needed changes to their approach to pain management. She now has a button she can push if she's hurting. The PO dilaudid just wasn't getting the job, even when they basically gave her a double dose.

As for the baby, everything checked out fine. Dr. Graves reviewed the ultrasound and saw nothing of interest. She actually agrees with us that he was simply reacting to Allison's body's response to the pain. It is kind of annoying that the nurses reacted the way did to this, but the baby may have ultimately done us a huge favor. His occasional higher heart rates pushed them to call Dr. Graves. She is exactly the type of doctor Allison needed right now - one who would come in, see something is clearly wrong, take charge, and be proactive in solving the problem. If only she had been around on Thursday, this might all be done with my now. Also, they took fetal measurements this time. The estimate came in at over 6 pounds. This calculates out to a 9+ pound baby at full term. If today's estimate is accurate, he's close to surpassing Ayden's birth weight. The chance of Allison having a VBAC may be officially out the window.

So, as we've said many times in relation to Ayden's hospital stays: now we wait. Speaking of Ayden, he got to hang out with Jude for a while today while I went to the hospital. He got upset when I dropped him off, but recovered quickly and had a lot of fun. Thanks for taking him for a while, Matt and Diana. And thanks again to Elise for being the middle-of-the-night hospital chauffeur.

I've been so well behaved amidst all the turmoil of the past week that Dad took me to Sweet CeCe's today for lunch. Frozen yogurt for lunch! How great is that? (I ate almost half a pound.)

More on Allison

Yesterday continued to go pretty smoothly, in relative terms, through the evening. Allison stayed in bed pretty much all day and rested. She didn't have any more pain episodes. Maybe the baby had helpfully shifted or any kidney stone had been passed.

Or not.

Right now, she's back in the hospital. The pain returned early this morning. After several hours in the OB Triage unit, the decision has been made to admit her. (I left out of yesterday's post that on Thursday, before the results from the renal ultrasound came back, one of the options being made available was keeping her in the hospital for observation while they tried to manage her pain and flush out any existing kidney stones. I was very much on board with this. After the ultrasound didn't show a stone, that went out the window and they just discharged her.)

Now, they are doing the things they should have done on Thursday. They are (as yet unsuccessfully) trying to manage her pain. They are giving her something to flush out any kidney stones. They are doing another fetal and renal ultrasound.

This time around, there is one note about the baby. A few times since she's been there today, his heart rate has been elevated. It hasn't been anywhere near where Ayden's would get, it's just been outside of the "normal" range at times. So, they have called in Dr. Graves, which is who took over Allison's pregnancy with Ayden (and delivered him) once we learned of his defect. They want her to read the fetal ultrasound, apparently. I get sense they don't really believe anything is wrong, but given the family history, they want to make sure. Allison and I suspect he is simply responding to Allison's body's response to the pain. The timing of the episodes seem to support this. Hopefully, that doesn't prove to be a rationalization.

At any rate, please keep Allison in your prayers. They will be moving her out of OB Triage soon (patients are only supposed to stay there for a certain number of hours). I will do my best to provide updates via the blog (I'm accustomed to doing this with Ayden, but not with Allison).

Update on Allison

Some of you are aware Allison has had a bit of a rough week (for those who aren't, don't worry, I'll get you caught up). I wanted to take a few minutes to let you know how's she doing right now.

Last Saturday got started a little earlier than usual, as Allison woke me up at 3:45 a.m. with the news she had been having strong, regular timed contractions for about 45 minutes. So, we threw some stuff in a bag, put in calls to the doctor's office and Aunt Elise (more on her in a bit), and off to the hospital we went. The hospital confirmed she was having contractions. However, she was not at all dilated and a negative result from the fetal fibronectin test indicated is was highly unlikely she would go into labor within the upcoming two weeks. So, after about 4.5 hours, they sent her home with a diagnosis of a bad case of Braxton Hicks. She had a second round of them later that day, but she eventually had recovered enough that we made our scheduled dinner date with friends that evening.

Fast forward to yesterday (Thursday). Again, she woke me up in the middle of the night and told me she was in severe pain. This time, she was feeling it on the right side of her back, only (thus almost certainly ruling out Braxton Hicks). After some time and some Tylenol, the pain subsided and we both went back to sleep. Around 7 or 7:30, it came back. So, once again, we called the doctor and Aunt Elise and off to the hospital Allison went. There were several initial theories. Eventually, a renal ultrasound (sounds worse than it is; renal = kidneys) put one of those theories at the forefront. Basically, something (either a kidney stone or the baby) was causing a blockage, leading to fluid backing up, leading to swelling and excruciating pain. The doctor eventually settled on the baby being the culprit (I interpret this to mean they didn't see a kidney stone on the ultrasound, though that doesn't automatically mean there isn't one there) and sent her home with a prescription for dilaudid and instructions to drink a lot of fluid (in case there actually is a kidney stone). She was at the hospital for about eight hours.

Unfortunately, the dilaudid hasn't really done much, to the point she's stopped taking it (what it seemed best at was making her more nauseous than she already was). So, several times last night and into this morning, she woke up writhing in pain. As of now, we are waiting on a phone call from her OB. Part of what we expect to here about is the results of some lab tests for infections (on top of everything else, it looks like she picked up an infection during last weekend's hospital adventure). Since about 8 this morning, the pain has not been anywhere near as bad, which has allowed to her to get some of the sleep she didn't last night. Hopefully we'll hear from the doctor soon and she will have some type of plan (though, regardless of whether it's a kidney stone or the baby, she'll probably say there isn't much to do other than try to manage the pain). All I know is she can't continue like this indefinitely. Something has to give at some point, which is a dangerous game to play with a pregnant lady, I think.

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Through all of this, there have been no indications there are any issues with the baby. When he was on the fetal monitor last Saturday and yesterday, they saw no issues. (He beat the hell out of the monitor the first trip, which is to say he beat the hell out of Allison's insides. Yesterday, he was apparently so uncooperative they eventually just turned it off.) Yesterday's fetal ultrasound raised no alarms. In fact, the technician used some type of device I'd never heard of (I didn't see it either, I was home with Ayden all day) to test the baby's ability to breath. He responded to it immediately.

In fact, in some ways he may be doing too well. In my (highly trained, obviously) opinion, he's starting to outgrow his space. Both Allison and I think he's tracking well ahead of Ayden in weight. In addition, he tends to stick to one side of her belly, thus further limiting the available room. Add all of this up and I believe you get a baby that's putting some serious pressure on his host's insides, probably even to the extent of becoming the equivalent of a kidney stone.

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As for Ayden, he has been incredible. We are both so proud of him. He was not at all phased when it was Aunt Elise greeting him when he woke up last Saturday morning. G-Daddy and Grancee were coming in town that day to get TCoA (Taking Care of Ayden) training for when the baby arrives (Saturday ultimately turned into a dry run for that day). He did great with them, too. He's known Allison hasn't been feeling well and has tried to love on her, in his own way. He's a big fan of routines. Very little has been routine lately, but he's handled it quite well. This makes both of us feel good about how he will fair when we're both at the hospital for the delivery.

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One final note. Our close friend (Aunt) Elise has gone above and beyond the call of duty this week. As I said, she came over in the middle of the night on Saturday so we could go to the hospital. She stayed to help take care of Ayden even after G-Daddy and Grancee showed up. Then, yesterday, she took Allison to the hospital, stayed with her all day, kept me updated, brought Allison home, then even went and picked up her prescription. Having friends like this is such a blessing. Thanks, E.