Returned To Boston

Gage and Kristy left Saturday morning on a medical flight to Boston. They arrived around 5pm PST.  Gage went in to the cath lab this afternoon so that his cardio team could get a better idea of what the pressures were like within his ventricles and atrium (specifically the left side). They have already scheduled his open heart surgery for tomorrow morning however we don't know exactly what they'll be doing yet.

We've been told that they are no longer considering putting the Melody Valve inside his bio prosthetic valve. They'll either replace the bio prosthetic valve with another or use a mechanical valve of some kind. Hoping to find out later tonight although things tend to happen at the last minute, so we may not know until just before surgery tomorrow.

Hard to think that he'll be going through the entire routine all over again so soon. Heart and lung bypass almost slipped my mind when I had first thought about the surgery. I'll do my best to post updates tomorrow.

Back to Boston?

We admitted Gage back to the CVICU at Rady Children's Hospital early morning on Sunday, March 20th.  That Saturday he had a really bad day. No smiles; plenty of vomit. He was also doing this thing where he wouldn't hold up his head. It was like he was tiring out and couldn't lift his chin off his chest to look around. We started to suspect that maybe he just didn't have energy as a result of all that vomiting.

Lately, vomiting has become almost normal but Saturday night his vomiting increased to about once every hour. We were worried to the max and to top it off we discovered that he was running a fever of about 101 degrees. That's when we knew he had to get back to the hospital. Up until the fever we were just planning to bring up our concerns at his next appointment. Glad we took him in early because his fever continued and he was extremely dehydrated. He'd been spitting up nearly all the nutrients he needed.

Over the course of the week, doctors began to suspect that he had a possible infection again. No blood tests or cultures have proven that he's got an infection and so it's looking more like the increased vomiting was a result of decreased mitral valve function. A weak heart causing a weak stomach and more. Cultures could still come back positive as we learned in Boston however it's probably safer to say now that it's not an infection.

The plan thus far is to send him back to Boston within the next few days and get his mitral valve corrected. It hadn't been perfect since we left and it seems to be only getting worse as each day goes by. That new valve was either a dud from the beginning or his body just didn't accept it as smoothly as we'd all hoped.

Options now seem to point to either replacing that bio prosthetic valve with another one or placing a Melody Valve (the type we thought we were getting in the first place) inside the old failed valve. I say "failed" because it certainly isn't passing the test. The team is talking about inserting the new valve via a catheter procedure however it's not set in stone yet. We could always end up with open heart surgery #4.

Really praying that Mr. Gage doesn't have to take that route. A quick catheter job and back home in a few weeks would be wonderful. Of course the valve-inside-a-valve method will likely only buy us a couple years before he'll need that first valve completely replaced again. A little at a time though. We'll worry about that later.

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At Home and Waiting

Gage was allowed to go home after one night in the hospital. The surgery wasn't until the end of the month and since he wasn't on any kind of support, the doctors let him go home. While he was in the hospital though, they gave him some additional medication to help with the reflux. It seems to have made a difference although we here that it can be pretty nasty stuff in terms of side affects.

With the help of the extra meds, Gage didn't throw but only about two times in a four day period. On the down side, Kristy recently ran out of breast milk and we had to switch Gage over to formula. Gage had a very sensitive stomach from the beginning and the fortification of his breast milk with formula used to cause him extreme pain and discomfort.  I remembered how miserable he used to be on formula and had been dreading the day that he'd have to go back on.

When he started formula again about a week ago, it took less than 24 hours before he started vomiting again. In my opinion, the new reflux meds he is on don't help at all given this new formula intake. Gage even gets the ultra sensitive stuff but he still vomits two to three times a day. Hopefully after the G-Tube surgery he can make more progress eating orally and we can ditch the formula soon. Surgery is scheduled for the 30th.

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Back at Rady Children's

Gage was admitted back to Rady Children's Hospital today.  This time it's for his stomach/reflux problem however he's in the cardiovascular unit because they want to keep an eye on his heart function as well. He has been vomiting more and more lately so much so that he's no longer gaining any weight.

He has been vomiting up to three times in one day sometimes. He completely empties his stomach each time. Last night at dinner he was so excited to have some food. He tried to suck on french fry but his stomach immediately rejected even the smallest spec swallowed.  Lately Gage has been showing more interest in what we're eating. He still has no desire to take a bottle but sit with him in front of a plate of food and he gets very excited to help you eat.

We've been letting him try some solid food in hopes that he might finally eat on his own and ditch the NJ Tube but every time he gets through even one swallow, he goes into a violent fit of vomiting. If it doesn't all come out one end, it goes out the other. Put your hand on his back while he's vomiting and you'll feel his stomach working hard to get rid of any kind of food. It's as if his stomach has a mind of it's own.

Waiting to see what's next for Gage. All we know is that something has to be done.

No G-Tube

Gage didn't end up getting the surgery for the G-Tube or his reflux. His echo last Tuesday showed that his heart valve is apparently getting worse. His scheduled procedure was put on hold for one week. Today Gage went in for another ECHO and it was confirmed that his valve continues to is getting worse.

He is now too risky to go into surgery for anything other than a new heart valve. His team of doctors will now be evaluating how soon he will need another heart surgery. The likelihood of getting his 4th open heart surgery appears to be high. His heart valve wasn't running at optimal standards when he left Boston and although we knew it wasn't perfect we thought he'd get more than just a couple months.

His doctor at Rady Children's doesn't believe that Gage is sick either. It is believed that his symptoms are actually caused be the reduce valve function. Essentially his lungs can't work to their fullest if the valve continues to weaken or struggle.