Robyn, Kyle, and Jack will be headed to Boston Sunday. Robyn and Jack via a medical jet and Kyle by commercial plane or car. Once there he will have a cath done, where he will be sedated and intubated. The cath will search for anything that could be causing his low sats such as a vessel that is a little collapsed, and during the cath if that is the case they can balloon the vessel back open. The other reason they want to do the cath in Boston is because they were going to do it there next month anyway. Instead of having him put under and intubated twice they would like to just have him go through that once. So the cath will also show us if his heart is ready for the Glenn Procedure. While he is knocked out he will also have an MRI done to see if he qualifies for cardiac rehab, which is a series of surgeries/procedures to enlarge the left ventricle so that he could perhaps have a normal functioning heart one day. If he is a candidate for this cardiac rehab he will need the Glenn Procedure regardless. Two things could happen in Boston next week. He could have the cath and the MRI done and if it shows his heart isnt ready for the Glenn yet but if there is an issue with a vessel that needs to be ballooned open then theyll just do that and send Robyn and Kyle back home until his heart is ready for the Glenn next month. The other thing that could happen is the cath and MRI will be done, and they may or may not find something that needs to be ballooned open and/or they may see his heart is ready for the Glenn, and thats whats causing his low sats. If this is the case than he will have the Glenn procedure there in Boston now instead of delaying it til the end of the July. The Glenn is another open heart surgery that Jack will have to go onto bypass for. However, it is a simpler surgery, and the recovery time is far quicker than the recovery time after the Norwood. He will most likely get to go home much sooner after the Glenn, and then Jack will be able to roll in the dirt, have people fawn over him all day long, and Robyn and Kyle will get to take him shopping, to dinner, and have people over again. So although this is all unexpected and may seem like a set back, we are hoping that it may actually end up with the Glenn procedure happening so that Jack can have a normal little baby life sooner, and Robyn and Kyle can worry that much less. The time they are going through now, the time between the Norwood and the Glenn, is called the Interstage. This stage is very difficult, and many babies have complications, which results is much emotional and mental stress for the parents. So if the Glenn were to happen sooner, and Robyn and Kyle could get to the stage between Glenn and Fontan, which is a couple to several years, it would be a relief. It would still be worrisome and stressful for them but after the Glenn they could start to live a more normal life again without constant weight checks and oxygen checks and doctors appointments (he will still have them but far less frequently). Our family believes that Jack has done extremely well for having HLHS. He has grown so quickly, and he is such a strong baby that we think he has just reached the time for him to have his Glenn a little sooner. Hes surpassed the weight he should be at for it, and this may be his body saying hes ready for it. So we see this as a good thing that he could be ready for his Glenn early. That being said, we wont know what will happen in Boston. He may not be ready for the Glenn just yet. So although its unexpected and very stressful, it shows how strong that little chunk is and what hes ready for. And he gets jet ride number #2 and a visit to Harvard :)
Posted on: Thu, 05 Jun 2014 02:23:16 +0000
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