Fight the good fight

Fight the good fight every moment

Every minute every day

Fight the good fight every moment

It's your only way

It was another rough afternoon and evening with Bobby, so both Mamas stayed overnight at the hospital. He was insolable for most of that time, crying, screaming, thrashing, and trying to roll over, sit up, pull off his oxygen cannula, pull at his chest tubes. The doctor on call agreed that it seemed to be pain related, and multiple drugs were tried - two doses of morphine, a dose of benedryl, and two doses of Ativan, all to no avail. It was all hands on deck, with the Mamas trying to keep Bobby from hurting himself, and the nurse administering drugs. We could not figure out the source of his discomfort, other than the obvious surgery related incisions and tubes.

In the end, they gave Bobby what the nurse referred to as, "the drug of last resort," chloryl hydrate, and finally, he was out like a light until this morning. Thank goodness, for all concerned!

In the process of all the thrashing, Bobby managed to pull out his nasal oxygen cannula, and the docs finally relented and Bobby no longer has any more junk on his face. Bobby's oxygen saturation levels without the cannula have been in the low 90s and overnight, the nurse did administer the oxygen blow mask at some point, but not for long periods of time. Yay for stubborn and yay for progress, of sorts!

Rounds this morning were uneventful. The docs aren't exactly sure what to make of his discomfort. They don't believe he is addicted to the morphine or other pain meds he's been on since the surgery. I, on the other hand, believe these episodes are a bit too reminiscent of the Amy Winehouse thrashy, fitful withdrawal stuff Bobby went through during his last surgery, February 2009, where he was ultimately put on methadone to come off the pain meds. But, what do I know?

For now, they are changing out some of his pain meds - trying IV motrin instead of g-tube motrin, and keeping in their back pocket the idea of possibly doing 1 dose of chloral hydrate during the day if things get bad, and 1 dose at night, for sleep.

Other than that, we wait for the chest tubes to stop draining. The drainage is slowing down, but not to the degree needed for their removal. Monday was mentioned as a possible day they might be removed.

This morning, the Mamas are planning to take advantage of a free seated massage courtesy of the Hospital's Brown Family Life Center. Mama A will then return home for a much needed respite, and this Mama will do her best to keep things calm and quiet for Sir Bubsalot.

Here's hoping for an uneventful weekend!

Rough Day

First the good news. In the major medical sense, Bobby is doing great. His chest tubes have almost quit draining, meaning his insides are recovering from the trauma of the surgery. We started him on his regularly scheduled feeds and he did great with his first bolus in over a week. The doctors are very pleased.

Mamas, however, are less pleased. Bobby has been crying all day. I spent the morning thinking that 'the problem' is that he's feeling better and so is rebelling at having to do all the things a medical patient has to do, like lie in a crib while being poked and prodded. But as the day wore on and he needed a dose of Benedryl on top of Ativan to fall asleep, and woke up screaming his head off, I became convinced that it's pain and not crankiness causing the crying.

Right now he is fairly content as I talked my way to half a dose of morphine for him. But I'm worried about what the night holds if we don't come up with a better plan than Tylenol-Motrin-sedate-when-hysterical. I'm currently waiting for the APN to come talk to me about said alternate plan. Hopefully I won't have to fight to get him on stronger pain medication, but I am prepared to. This stinks.

Action Shots

Wednesday baby steps... first time playing with a toy since surgery...

Tonight's video... my boy's coming back... rocking out with the Perry guitar...

Musical Video of Bobby Ripping on the Mickey Mouse Guitar....

handsome

The nurses call Bobby 'Handsome'. Its amazing they are still using a term of endearment as we finally cleared the constipation hurdle this morning and Bubs is feeling much better after putting the nurses to work on cleaning up his...uh...constipation hurdle.

Bobby is actually in a great mood. He's playing and laughing freely for the first time since his surgery. He's starting to look like himself instead of a glazed-eyed boy. And he's started to fight the cannula that's stuck in his nose - a good but difficult-for-mama milestone to reach.

His feedings on the Vivonex have been drama free. The drainage from his chest tube already looks better as a result. All in all a good report from Chidren's Memorial.

Even More Complicado

It was a cranky night with Sir Bubs. What looked like pain at various points in the night, now looks like constipation, so they are throwing an arsenal of solutions at the problem - Miralax upped to twice a day, Colace, prune juice, the old fashioned pediatric enema. It's hard to be a constipated tough guy.

On a separate and more important note, Bobby has developed a fairly serious complication from the surgery. They've been monitoring the drainage from his chest tubes, and noticed that the chest tube on his left side was draining fluid that was white and milky, unlike the clear yellow fluid draining from the right chest tube. They believe the milky drainage is a sign of chylothorax, which is the accumulation of chyle in the lung space. Chyle is usually a milky fluid comprised of lymph drainage, which carries fat, protein and white blood cells (lymphocytes). Symptoms of chylothorax are related to the amount of fluid present and the rate at which it accumulates and may include fatigue, shortness of breath at rest or on exertion, heaviness, and discomfort on the affected side. If left untreated, chylothorax is associated with considerable morbidity and mortality.

So, they are testing the level of triglycerides in the left chest tube drainage. If the labs find strikingly higher triglyceride levels and confirm the diagnosis of chylothorax, the treatment is to move Bobby to a different formula, such as Pediatric Vivonex or Tolerex, for the next 6 weeks or so. The alternate formula would contain very low levels of fat to help the malabsorption issues. Because Bobby is already on a specialized medical formula (Elecare) that is 100% amino acid based due to his inability to tolerate milk protein and his severe GERD, I'm nervous about switching to a different formula. The new formula is even more expensive than Bobby's current liquid gold (and will cost about $900 per month, versus $400), but, the alternative is much more daunting.

If he can't tolerate the specialized formula, they would move to something much more drastic - like complete bowel rest and TPN (total parenteral nutrition) - or IV nutrition. Not a very great option for an active little guy.

For now we're thinking positive thoughts, and if he does have chylothorax, hopefully either of the two medical formula options will do the trick.

The surgeon mentioned Bobby will also be in the hospital until the beginning to middle of next week, as we wait for the chest tubes to drain.

Quick Update

The music therapist just stopped by to see Bobby. She coaxed several large smiles out of him - those have been scarce since his surgery.

Pain management stopped by and coaxed several frowns out of Ma Ah (bobby's name for me) by threatening to take the morphine PCA away. She said 'you're hardly using it so we might as well get rid of it'. I said, 'since we're hardly using it why is it a big deal to keep it just in case?' Ma Ah was the eventual winner.

Bobby's doing great - his oxygen saturation is in the high 90s with no nitric oxide or high flow oxygen help. He just has a regular oxygen cannula.

Sleepy time sats are not where it's at

Mama A was on Bobby duty today, while this mama worked from home. Bobby was reintroduced to his Elecare feeds, albeit at a lower calorie, lower rate, and was completely weaned from his nitric oxide. He's now on the Sildenafil to pick up where the nitric oxide left off, and help with his pulmonary pressures. All in all it was a good beginning.

Then the medical staff noticed a trend that's problematic. When Bobby enters a deep sleep, his oxygen saturations drop down to the 80s for a few seconds. This is alarming because with the Fontan and the oxygen support he is receiving, this shouldn't be happening. So, there's some discussion about doing a sleep study on Bobby, to better understand why this is occurring. I polled my Facebook friends, and got some feedback that their little ones with cardiac issues had undergone sleep studies, and were advised to have the child's tonsils and adenoids removed, which resolved the problem for many of them. Unfortunately, Bobby has already had his T & A (as the docs in the 'biz' like to call it), so the solution for Bobby seems less clear. Typically, a CPAP mask is used when sleep apnea is diagnosed. And we all know from previous experience how successful keeping a CPAP mask on Bobby is. It's like trying to herd cats. Anways, we will know more when the docs do their rounds in the morning, and discuss the desaturations further. For now, the mamas have something extra to worry about. Oh, and the nurse just mentioned they are also concerned that his respiration rate is too slow. For a 3 year old, it should be between 10 and 30. Bobby's will occasionally go down to, oh, 6. But she said, at least his sats are good when that's happening. Oy vay.

Anyways, below are some gratuitous pictures of me, snuggling with my best boy for the first time since his surgery. It was delicious...

Big Day

Bobby has a lot of change in store for him today - all hopefully positive. The APN just came by and removed one of his chest tubes - that went relatively seamlessly. He cried for a few minutes but didn't need any morphine help to get through it.

Later this morning they are going to start him on formula feeds. It will be his first non-clear liquid since surgery. Hopefully he will tolerate the volume and not reflux, as that was a contributing factor to his saturation problems last week.

Speaking of saturation, he continues to be in the mid 90s with the help of oxygen support. He is completely weaned from the nitrous oxide and is doing fine. Now they start the the process of weaning him from the high-flow oxygen. This is the true test of how well he is saturating. If this goes well, we will be clear to go home in a few days. If it doesn't go well, it will be a major setback. So today is a big day.

Easter Sunday

All is relatively quiet on the Bubsy front. He woke up for a while yesterday evening and I had visions of a long, thrashy, night. But he calmed down soon enough and slept through most of the night.

Today they are going to start him on Sildenafil, which helps with his oxygenization. They are removing his foley, weaning him off of the nitric oxide, and being a little more aggressive about upping his Pedialyte feeds. We're going up 5 ml an hour every 4 hours. Provided things go OK, by this time tomorrow he should be on 50 ml of Elecare per hour.

For the most part, Bubs just continues to sleep. I don't think he'll have any real energy until he gets some Elecare into his system. Fortunately, he doesn't seem to be in much discomfort - the pain medications have been kept to a minimum and he is doing fine.

The true test will come tomorrow when they wean him off of his oxygen and we'll see how his saturation levels change. If they are strong, we'll likely go home soon.

Float like a butterfly, sting like a bee!

Well, Bobby's back (or slowly coming back).

He woke up in a fury last night, thrashing, attempting to roll over to his comfort position, on his tummy. In the process, he managed to mangle his arterial line, which is used to draw blood for blood gases and to measure his arterial blood pressure. Valiant (and annoying) efforts by several nurses and a fellow failed to repair the twisted a-line, so it was finally removed. Thank goodness! It's not really needed at this point, and it's one hunk of hard plastic that is no longer in his crib. My question, of course, is if it's not needed, why did several nurses and a doctor try to fix it, which resulted in my son screaming and crying? Grrr.

Anyways, the docs just rounded, and today's plan is to attempt to slowly wean him from oxygen, first by decreasing his nitric oxide, then by decreasing the percentage of high flow he's receiving. Yesterday, Bobby was on 8L O2 at 60%, and was doing fine. They tried to go to 7L, then back to 7.5L, and he started desatting into the 80s and had to get the oxygen blow mask. The day ended with Bobby back to 8L O2, but up to 80%.  As they wean the nitric oxide, the surgeon mentioned he might be a good candidate to go back on the Sildenafil (Viagra), to  help with his pulmonary pressures. Jokes aside, Sildenafil really is a miracle drug for heart defects. Bobby was discharged on it after his last heart surgery.

The Pedialyte feeds of 5ml per hour (1 teaspoon) will be upped to 10ml per hour, then later today, to 15ml. They proposed moving him straight to his Elecare formula, but I nixed that, since he has a long track record of having problems with his feeds - so much so, that he was refluxing badly when he was on the 2 teaspoons per hour of Pedialyte a couple of days ago. We will revisit moving to formula once we get his volume up on the Pedialyte. I'm glad the docs trust mama on this count, at least.

For now, the chest tubes are still draining, so they will remain. His morphine painkiller dose was decreased yesterday, and will remain the same today. They also agreed to remove the central venous transducer (another piece of hard plastic). Yay! The removal of each and every one of these medical devices, tubes and lines, puts us one step closer to home.

The surgeon also confirmed that we are still looking at a 7-10 day stay from the date of surgery, so possible discharge between April 27th-30th. Fingers crossed!

Starting to Wake Up

We had a fairly quiet night in Bubsland.   He is starting to wake up for longer stretches and thrashes around quite a bit.  The nurse seemed to be doing a fine job in comforting him so I let her take over and instead tried to get some sleep.  I was half successful.

Saturation wise, he's holding steady in the mid 90s with the help of oxygen and nitrous oxide support.  They are going to keep him on both for a couple of days and give him a chance to recuperate.  At least we're going to try to keep him on both.  As he wakes up he is starting to pull at the nasal cannula.  

We're trying to feed him again today.   This time we're starting on 5 ml (1 teaspoon) of pedialyte per hour.  So far it hasn't caused any reflux.   They are also going to take the foley catheter out of his g-tube incision and replace it with a proper mic*key button.  This will make both feeding and medicating easier.

The big question today is around pain management.   Right now he is on a morphine PCA (patient controlled analgesia, or in his case, nurse and mama controlled analgesia).  The problem is, every time he wakes up (which they want him to do) he is uncomfortable and thrashes.   When we administer the PCA he falls asleep.   We need to find some middle ground where he is comfortably awake.  

Other than that, we wait for the chest tubes to drain.  Then they will try weaning him off of the nitrous oxide and oxygen. 

Ladies Man

Nothing really new to report, but just wanted to share a few pictures of today's happenings.

Today....

Bobby had an afternoon visit from his favorite music therapist, Miss Elizabeth...

An afternoon bath...

And an afternoon weigh-in that required the assistance of 3 nurses

He's holding steady, with oxygen sats back to the low to mid 90's, thanks to the high flow oxygen canula and nitric oxide. His heart rhythm is responding well to the temporary pacemaker, but he's not yet ready to go without it.

Here's hoping for an uneventful night.



Complicado

Well, it couldn't last forever. Bobby's fever spiked to over 103 this morning and his oxygen saturation fell into the 70s. Ice packs and Tylenol/Motrin are fixing the fever but the saturation levels are more problematic. The doctors aren't sure what the problem is.

What they do know is that there's a problem with Bobby's heart rhythm. In a healthy heart, blood is squeezed first through the atria and then through the ventricles. Bobby's atria and ventricles were firing at the same time. It's a temporary and not uncommon side effect of cardiac surgery and it's not overly concerning. They just hooked him up to a temporary pacemaker so that the rhythm will be regulated until his heart starts working properly again.

So we're back to where we always end up-worried about saturation levels. Bobby is now getting high flow oxygen and that's got his saturation levels up into the 90s. The doctors think it may just be a matter of giving his lungs time to adjust to the new physiology. Prior to this surgery, only 1/3 of Bobby's blood flowed to the lungs, now all of it does. The lungs may take some time to adjust to this change. No one is panicked but they are a little concerned. So are mamas A and V.

Less is More

Bobby had a great night. The anesthesia has worn off but he is still sleeping off the effects of his surgery. He slept comfortably through the night. We're fighting off a bit of a fever - it got as high as 102 last night, then fell to normal now is back up around 99. They have him on Tylenol, but aren't concerned that its anything serious. They also started the process of weaning him off of oxygen - his saturation level fell into the high 80s/low 90s, which is still higher than they've been since he was born.

For the most part, morning rounds brought good news. They are going to wean Bobby from his IV blood pressure medicine, remove his urinary foley, and start him back on his g-tube feeds. The latter happens very slowly - we start at 10 ml of Pedialyte an hour and go from there. (10 ml is equal to 2 teaspoons). But all of these things are about getting Bobby back to normal as quickly as possible.

There are two concerns other than the fever. One is that Bobby's urine output is a little low, meaning he might be retaining fluid. However, none of the other telltale signs are there (most notably he's not puffy) so they are giving him a diuretic and adopting a wait and see approach. The second issue is that Bobby has developed three painful looking blisters on his left underarm. This is a not unusual complication from the wash used in surgery.

The keys for us now are Bobby's chest tubes. Waiting for his chest cavity to drain its blood and mucous is the thing that will keep us in the hospital the longest (assuming no other complications - and I've decided to assume this). So far they are not draining a lot, which, like the majority of the morning report, is good news.

Now we wait for him to wake up. That will bring a new set of challenges, I'm sure.

Bye, Bye Vent

The breathing tube is out and his oxygen saturation is 95%.  Bobby is doing great. Sleepy, but great. :)

Recovery

Here's our look of fatigued relief at hearing from the surgeon that Bobby's heart surgery was successful:

We finally were allowed to see Bobby at a little before 3pm. The first thing we noticed is that our boy now has oxygen saturation levels in the high 90's, thanks to his heart repair. Mind you, just two weekends ago, he was satting in the 60s and had turned blue at the cardiologist's office.

The surgeon and cardiac ICU doctor both think he's doing great. He's still on the ventilator, but they are hoping to attempt to extubate him once he wakes up a bit more, probably around 5pm.

After they gave him some meds to reverse the effects of the sedation, Bubs woke up and was agitated, so they are looking to put him on Precedex, which will serve to sedate him, but should not interfere with their timeline for removing the breathing tube.

Here are some pictures of our poor little guy. As strange as it may sound, compared to his other two heart surgeries, he looks great! No swelling and no blueness! It's interesting how the picture of success changes.

G is for Grunsted...and now, Gortex

Surgery is over and Bubs did great! We found out that they only did an atrial pacemaker wire because that is the one that helps with low heart rate (which he has). The ventricle wire does something else which I don't understand and don't care because Bubs doesn't need it :)

The surgeon gave us a piece of the Gortex that was used to make the Fontan. This is the artificial material used to divert blood from his heart and send it directly to his lungs. Some pictures are below.

P.S. Valerie also does the pictures. Go Team Grunsted-Pugata!

Almost Done

The surgery is about 30 minutes from being done. They have done an echocardiogram to ensure that the Fontan is working correctly and are now in the process of closing up Bubs. Our only question is that they had planned to put pacemaker wires in his right atrium and ventricle, but ended up only doing an atrial wire. We'll have to talk to the surgeon to understand that.

We should be able to see our sweet boy around 3:00. He will have a breathing tube in and will be on lots of pain medication as well as medicine for his heart. Its hard to see him that way, but of course we can hardly wait.

Getting Down to Business

Bobby is doing fine. He is now on the heart/lung bypass machine as they are getting ready to do the Fontan. Essentially, they are grafting a Gortex 'vein' between his inferior vena cava and the pulmonary artery. As a result, the blood from the lower half of Bobby's body will bypass the heart and go directly to the lungs for oxygenization. He will be on Coumadin for about a year in order to prevent blood clots in his artificial vein.

Once that's done, they will put in the pacemaker wires. That can take a long time as the procedure requires much precision. So we are going to be waiting for a good while yet. Still, its good to hear that everything is going well so far.

They will update us again at 1:00 pm.

P.S. Bobby undergoes the procedures. I write the blogs. Valerie edits my mistakes. We're Team Pugata.

Nota Bene: Years ago, V and I decided on an alternate family name. At the time we had 6 cats (or 'gatas'). We were thinking of getting a Pug. Hence we became the Pugatas. We never got the pug because we found out that they have a lot of medical issues. There's an irony there somewhere.

lines and tubes, oh my

We just received our first update from the cardiovascular surgery nurse practitioner. Bobby is doing fine. To this point they have mostly just done prep work - putting in a central IV line, replacing his g-tube mic*key button with a foley catheter, etc. Bubs is a tough stick so all that takes some time.

Now they have started the process of opening him up. Its a difficult process that becomes more difficult with each surgery. The scar tissue from previous work bleeds a lot and is difficult to work with. Poor Bubs. Thank goodness he'll be asleep for the rest of the day.

Tired Little Tiger

Bobby went in for heart surgery at 7:30am. He woke up in a great mood, but that quickly faded once we got to the hospital and he realized what was happening. Still he was a brave guy during his pre-surgery work up. He's such a sweet, strong little boy.

The surgery will last 5-6 hours. Our first update will be around 9:30am.

You know you've been to Children's Memorial Hospital too many times when the ENT doctor greets you warmly in the waiting room as if you are "Norm" on the cast of Cheers.

Two day delay

Bobby had his pre-surgery tests today - 2 chest x-rays and a whole lot of blood work. The chest x-ray came back pristine but his white blood cells are a little low. The doctor believes he is at the tail end of a virus and wants to give him a couple more days to recover. So, surgery is pushed from Monday to Wednesday.

Bobby had a rough go during his tests. The x-ray involves him being strapped into a little chair with his arms strapped above his head. Naturally, he gets very upset. The blood draw was even worse - it took 3 sticks and 5 people to hold Bobby down long enough to find a vein and extract the blood. The poor thing was so tired afterwards that he fell asleep through his cardiology exam. That gave me a chance to talk to the nurse doing the exam.

This is the third in a series of three heart surgeries needed to compensate for a single ventricle heart. The nurse told me that this one tends to have the fewest complications (although with Bobby no one ever counts on a dearth of complications). The hospital stay, assuming his recovery path is clear, is about 7 days. The first day he will be kept sedated and on a breathing tube. On day 2 they will wake him up and try to get his heart working a little more. This is the fastest way to recovery.

For 3-4 days Bobby will have chest tubes in to drain the blood and mucous out of his chest cavity. The mucous and blood are residuals of the surgery and are to be expected. What's also to be expected is that Bobby will try to pull out the chest tubes. They are slipped under his skin and not attached to anything so pulling them out should be relatively easy and extremely painful. He will likely have restraints on both his arms to limit his movement.

They have decided not to put in a pacemaker for now, although that can always change if there are issues during surgery. They do not think that his low heart rate is sufficiently concerning to require a pacemaker at this time. What they will do is put in the wires for pacemaker so that, if he needs one down the road, the required surgery will be relatively simple.

Fumbling Towards Ecstasy (er, Surgery)

Bobby continues to do well at school, and this Mama had a nice long chat with his new occupational therapist. She was very enthusiastic about Bobby and his interactions in the class, and she's actually been the one working on oral feeding practice with him this week. She showed me a gait trainer they have at the school, and wants to try it with Bobby to help him practice walking. I am all about this OT today.

In other not so great news, we received a call from the surgery scheduler that Bobby's heart surgery date got bumped out to next Monday, 4/18. Apparently, there's another newborn baby girl that's having an emergency Norwood procedure. Our prayers go out to this family.

They are also concerned that since he has cold/upper respiratory symptoms, they may want to move the date out even further. They will re-assess when Bobby has his presurgery labs, xrays and physical with the APN (advanced practical nurse) this Friday.

Tonight, Mama A was playing with Bubs (rough-housing a bit), and she noticed that his lips started to look blue. We debated calling 911 or taking him to the emergency room, but we learned from his last admission a week ago, that they won't do anything more for him on an inpatient basis than help us kill time until the surgery date. So, yes, they know during periods of physical exertion, Bobby experiences a lack of oxygen in the blood, which can cause his lips or skin to turn bluish in color. It's terrible, and we particularly loathe this latest symptom of congestive heart failure. However, we know from his cardiologist that one of the reasons why they discharged him last week, was to avoid him becoming ill from the germs and iatrogenic conditions inherent in that setting, while we wait for the surgery date.

Still, nobody wants to see their child turn blue. Not even just a little bit.

First Day of School!

Today was Bobby's first day at school. There was a hiccup with his bus transportation, so our little prince received a royal escort to and from school from his favorite Mamas.

We were the first ones to arrive in his classroom - the other children are bussed. We had a chance to talk with his teachers, Miss Katie and Miss Sherry, who greeted us warmly, yet knowingly.. as in, ah, yes, new CPS parents dropping their child off for the first time. Miss Katie showed us today's schedule, which included computer time and gym. I knew he would go ape with computer time - he practically mauls us or any innocent bystanders with an electronic device in their possession.

We also spoke with the school nurse, who very efficiently had already submitted the paperwork for Bobby to begin the "Home and Hospital Instruction Program", so that CPS will continue providing educational services while he is out of commission after the heart surgery and before he can return to school. Yay! We also met the LPN who was going to administer the gtube feeding at noon.

Now, don't get this Mama wrong, I really appreciate the care and concern the school nursing staff has for the whole feeding tube situation but the way they approach it makes it seem like its some serious medical procedure. Trust me, if these Mamas can learn to do it, not to mention, also teach multiple babysitters and daycare staff how to do it, it's really not a big deal. That said, it is a huge relief to have SOMEONE who is willing to feed Bobby via the gtube, since we still a have a big vacancy in that department it comes to Chicago area daycares.

Here are some gratuitous photos of my big boy at his new school:

Sitting at the big kid table

Mugging for the Mama Cam!



Yeah, I'm getting rid of all my furniture. All of it. And I'm going to build these different levels, with steps, and it'll all be carpeted with a lot of pillows. You know, like ancient Egypt...

As you can see, the separation from Mamas was heart-wrenching...

Adios, Mamas!

While Bobby was getting happily acquainted with his new friends and teachers, the two Mamas were at Urgent Care, waiting to get antibiotics to stamp out inconveniently timed sinus infections.

We received a call in the late morning from the school nurse, asking us for a letter saying that we give the school permission to feed him yogurt and ice cream, given that he has a milk protein allergy and only takes $100 per can Elecare formula for nutrition. OK, so it's not $100 per can, but it's close - a month's supply of the liquid gold costs $500. Thank goodness we have good health insurance.

But I digress. So the school nurse wants permission in writing, and all I can think of is, "Lady, if you can get my son to eat anything by mouth on a regular basis, you can feed him yogurt, ice cream, chicken mcnuggets, filet mignon, or anything else!" I learned later that they already had given him (gasp) one tablespoon of strawberry yogurt at breakfast, and she probably didn't want to get caught with her t's not crossed. Yes, this one is a bit of a stickler - for now, it's in a good way.

At the end of the school day, Sir Bubs was collected, and his teacher said things had gone well, and her notes were in his spanking new green family communication folder. Again, emphasis mine. Being the proud mama, I've scanned a copy of the report of Bobby's first day at school. All I can say is it looks like a lot of fun to me! :)

Sunday Funday

Team Grunsted has a big week ahead.

Tomorrow our big boy is going to early childhood education (preschool) for the first time. The week ends with him having open heart surgery. It's going to be a wild ride here on Magnolia Avenue.

In preparation for the events of the week, we all got sensible haircuts, and caught up on laundry. In typical Bobby fashion, the haircut was traumatic for all involved, and the front of his hair is uneven. But, he's still our sparkling Bubs and it's a dramatic improvement over the surfer dude hair style he's been sporting of late. The "after" picture is shown here. Note also the gash on Bobby's forehead - sustained when he hit his head on one of the crib slats. I wouldn't have believed it if I hadn't seen it myself. We'll see if the start of school tomorrow brings a visit from DCFS, checking on Bobby's safety at home.

Bobby continues to have an upper respiratory infection, so he started a course of antibiotics yesterday, as we race the clock to get him well by Friday. Mama V is also under the weather, and dually loaded up on Vitamin C, Zinc, and chicken soup.

Today was an unusually warm day (80s), so we violated house arrest and ventured out to the back porch for some rollicking good fun on Bobby's favorite swing. The boy loves a good swing!

Bobby's Heart Defect (An FAQ and Prayer Request)

To answer a question many people have asked - Bobby was diagnosed with a heart defect during my level II ultrasound when I was 20 weeks pregnant with him. We were also told that this type of heart defect is most common in children with Down Syndrome. We chose not to do further genetic testing, since Bobby was meant to be our child, regardless of congenital heart defect or intellectual disability. Over half of children with Down Syndrome are born with congenital heart defects.

Bobby's congenital heart defect is called an Atrioventricular Canal Defect (AV Canal Defect, for short), or Endocardial Cushion Defect. Bobby's full diagnosis is "Atrioventricular Canal Defect, - complete, unbalanced".   You can read more about the physiology of this congenital heart defect here.

Because of Bobby's particular anatomy, he is not eligible for the standard one-time surgical repair for this kind of heart defect. Instead, the cardiovascular surgeons opted for an approach that involved 3 cardiac surgeries:

1. Pulmonary Artery Band (July 2008, when Bobby was 3 months old)
2. Bidirectional Glenn Shunt (February 2009, at 10 months of age)
3. Fontan Procedure (April 15, 2011, at age 3)

So, as you can see from the dates above, we will soon be at what we hope is Bobby's last heart surgery. We are extremely anxious, due to his recent hospitalization and discussions with his doctors, that he may one day require a pacemaker or even a heart transplant. One thing we've learned is that there are no guarantees with any of these procedures. Bobby was supposed to be in the hospital for 5-7 days for the Bidirectional Glenn Shunt, and he ended up in the pediatric intensive care unit for a month, due to problems maintaining his blood oxygen levels.

We are hopeful that the Fontan will be successful. We pray that Bobby will be able to move ahead without the burden of dealing with cardiac symptoms - symptoms that have resulted in problems with feeding that have required tube feeds since one month of age, laboured breathing and poor stamina that have adversely impacted his progress towards learning to walk, not to mention the toll of countless hospitalizations (14 to date), procedures, and emergency room visits, that have contributed to his delays in gross and fine motor skills, intellectual abilities, and his overall well being.

We hope and pray, and hope you will pray with us.

Surgery Date!

Bobby will be discharged from the hospital today, and is now scheduled for open heart surgery (the Fontan) on 4/15/11. Glad he'll have the surgery soon, but scared too, since the last heart surgery involved a month in the PICU, recovering.

Happy Birthday, dear boy! -- A Picture Tribute

A look back at Bobby's first few months of life...

Note: If the photo slideshow below doesn't load, you can always click this link:
http://s449.photobucket.com/albums/qq212/valerieandanne/?action=view&current=e352677a.pbw
 

Part 2 is a success!

The electrophysiology study was a success! The cardiologist could not induce a repeatable irregular heart beat. This means Bubs gets discharged tomorrow and will have a non-emergent Fontan surgery in the next few weeks. The cardiologist still isn't sure if he needs a pacemaker or not. They will at least put in the wiring in the heart and if they have to put in the pacemaker down the line it will just be an outpatient surgery. Thanks to everyone for the support! Today went as well as we could have hoped!

My sweet Bobby in the recovery room...

A Happy Birthday sign one of the nurses in the recovery room made for Bobby...

Part 1 is a success

The cardiac catheterization went perfectly, meaning he doesn't have any collateral veins or arteries and did not need a balloon procedure to widen his pulmonary arteries. Bottom line, his anatomy makes him a perfect candidate for the next stage of surgery and they didn't find anything that would make the surgery an emergency. Now they are doing the electrophysiology study where they look for irregular heart beats. This is the part where they'll decide for sure if Bubs needs a pacemaker. This is also the part where they might have to shock him if they are successful in inducing an irregular heart beat. So good news but we still are on the edge of our seats.

Tough Kids (disclaimer: this post was stolen from a FB friend)

I've been thinking how a lot lately how tough kids with DS are. Not only do they struggle with things that come so easily to other kids but many of them have serious health issues. Like my little M. who has had three major bowel surgeries, open heart surgery and spinal fusion, not to mention the countless number of outpatient ear and eye surgeries (of which we have another this Friday and I've literally lost count to what number this is but am pretty certain we get a set of steak knives.). And we are not the only ones.  So many of our friends have had heart issues, bowel issues, sinus, ear, eye, reflux, oral aversions, leukemia, you name it.  I've been thinking particularly of our friend Bobby who is three today and in the hospital for the umpteenth time with heart issues. He's already had two open heart surgeries and faces another not to mention, a G-tube, and other issues. So next time you see someone with Down Syndrome, remember they not only have developmental and physiological delays that make it difficult for them to do certain things, but many of them have had numerous hospitalizations and/or medical issues. And ask yourself if you could endure all that they have; I know I couldn't. So Happy 3rd Birthday Bobby. You are an amazingly tough little boy who is full of joy and love and has two amazing mamas.  We love you. 

Update

      We've had a good day today. We had our favorite nurse!

      Bobby continues to have low oxygen but the cardiologist is not overly concerned. We're having a cardiac catheterization and electrophysiology test tomorrow. Essentially, they are going to measure his pulmonary pressures, look for collateral arteries and veins, potentially do a balloon procedure if his pulmonary arteries are too narrow, and test for abnormal rhythms in his heart.

      The lung pressure is important because he needs low pressure in order to have a successful next surgery. If his pressures are high, he will go on Viagara for a few weeks. One of the side effects of that particular drug is that it lowers pulmonary pressure.

      Collateral arteries and veins are 'extra' vessels that grow in the body. Normally they don't hurt anything, but since Bobby's surgery is about restricting his blood flow, collateral veins can cause problems. Simply, after his surgery, the blood coming from Bobby's body will bypass his heart and go directly to his pulmonary system. We want to make sure there is no collateral vein that is redirecting his blood to his heart and thwarting the goal of the surgery. So, the cardiologist will block off any collateral veins tomorrow.

       Bobby has narrow pulmonary arteries.   The cardiologist will make a decision about expanding them with a balloon procedure.   This will help make sure he gets a good flow of oxygen rich blood.
       Lastly, they will be checking his heart rhythm. We already know that his heart rate is low when he's resting. Now they will test to see if his heart sometimes misses a beat. This is the final test to see if he needs a pacemaker when they do the next surgery. This is also one of the scarier tests because if they induce an abnormal rhythm they may have to shock him out of it.
      The tests will be sometime after noon tomorrow.

Bobby Grunsted: Cardiac Patient Extraordinaire

Saturday with the Bubs

Bobby had an afternoon of low oxygen sats (60s again), low heart rates (53), and lots of hospital alarms. The docs are waiting and watching for now. The cardiac cath on Monday should provide more of a roadmap in terms of next steps. On a brighter note, Bubs had several playful moments of standing up in bed, banging on the roof of his crib (a.k.a. baby jail), and scooting around enthusiastically. He also had 4 lady callers today - visits from friends Lori, Karen and Shannon, and his speech therapist Kathleen. Thanks, everyone, for the DVDs, books, toy guitar, magazines, puffy ball, and assorted goodies for the boy, not to mention chocolate based yummies for the Mamas. We are lucky to have a wonderful network of friends!

Lockup: Baby Jail...

Not loving the telemetry monitors...

Bobby Update

Bobby was admitted to the hospital today after turning blue during a cardiologist visit. So far, all tests have come back with a good result. The only concern is that his sleeping heart rate is low - meaning he may get a pacemaker during his next heart surgery. We'll know more tomorrow. In the meantime, we're here until at least Tuesday when they will do a cardiac catheterization to check his pulmonary pressures. He needs low pressure before they do the next surgery.

Today's Cardiology Visit with Dr Tsao

My sweet boy, before the fateful cardiologist appt today where he turned blue and desatted into the mid 60s...