Collaterals.

So after a few episodes of very heavy strained breathing and a few weeks of a lot of fussiness, Scott and I decided to buy a Pulse Ox machine for our home.  I thought that if I could just see that his oxygen levels were OK, I could relax a little bit about whatever was going on with Logan.  The Pulse Ox device  is just a device that measures ones oxygen saturation (for adults it’s the little thing they put on your finger in the hospital.)  Well, instead of making me feel better the pulse ox machine registered that Logan had oxygen saturations of 65 (FOR DAYS),  we obviously got nervous and moved his cardiologist appointment up by one week. 

So inevitably,  I was very nervous about our appointment and expecting the worse and for Dr. Patel to find something really wrong with Logan during the echo. 

Well it turned out Logan (as Dr. Patel put it) was trying to prove me wrong because not only was Logan NOT FUSSY AT ALL, during our apt.  his O2 levels WERE 75.  I couldn’t believe it.  Now 75 is fantastic but it isn’t 65 either.  The ideal oxygen saturation after a Bi-Directional Glenn Shunt would be 85, so there is something that is causing the O2 levels to be less than that.  In Logan’s case it is because he is growing collaterals (tiny little veins) that are rerouting some oxygenated blood away from his lungs.  If you think of a hose with holes in it, and trying to fill up a pool with that hose.  That is sort of what is happening.  The blood is coming out the holes/veins and taking a different path instead of going to his lungs.  Since Logan’s oxygen is 75 we aren’t going to worry about trying to, plug those holes (coil those collaterals in the cath lab)  right now, but just give his body longer to adjust.  The reason he is growing the collaterals is because there is still some high pressure in his pulmonary artery so the blood is flowing down other smaller veins (because it is easier) and the very nature of this causes they veins to get bigger and then more blood flows thru them (you get the cycle here.) 

So we just have to wait and see if these collaterals are really going desaturate him A Lot (like into the 60s) or if he will continue to hang out in the 70s.  If he stays in the 70s we will wait until his next open heart surgery to deal with collaterals.

 

Logan is still a tiny little guy.  He is weighing only 11 pounds at 7 months old.  I think that officially has him completely fallen off the charts.  He has grown in length though and is now 24 inches long (although, this is only the 2-3%) for length as well.  He is still not able to hold his head up for more than a few seconds at a time and there is no sign of any sitting up or rolling over either.  Now, cognitively he seems right on track.  He is playing with toys, trying to drink out a cup, chewing on pieces of fruit, and he has Mommy completely wrapped around his finger.  Whenever I walk in the room, people tell me he starts behaving very differently (as to get my attention.) 

I do however, worry about him getting bored having to just lay there all the time, but at this point I am not sure about physical therapy.  I don’t really want to stress him out, and part of me feels that whatever he is doing right now is what his heart can support, and that he will catch up when he is ready.  Him staying on track cognitively is more important to me anyway, so if that is where all the energy is going right now, I am happy with that. 

HAPPY NEW YEAR TO EVERYONE!!!

19 thoughts on “Collaterals.”

    1. I think he sounds like he is doing GREAT!! My daughter was so behind on everything……and at 16 months old she only weighted in at a whopping 15 lbs. You have a great attitude towards it though because they do hit those milestones just a little slower. Also my daughters O2 after the bi-directional was never higher than about 75-78 until the fontan(at age 4)now it is in the 90’s!! Watch out cuz he will definitely make up for all his “laying around”. Those first few years are some tough ones….always wishing your family the best.

      1. Christi, I was just curious if the doctors had a reason for your daughter’s O2 levels being in the 70s. After his Glenn the doctors at Boston weren’t very happy with 70s. I am just curious to hear if your doctors were Ok with that number. Does your daughter have Heterotaxy???

        1. They never had a problem with it, but if I remember right, at first they may have been 80 right after surgery , but could not have stay there to long because I always remember her 02 in the upper 70’s. She did very well until the time was close to her fontan and you could really start to see her having issues(she was older than most kids at 4 1/2) After her bi-directional is when she finally starting eating and seeing some real improvement with her. Yes, she has heterotaxy with asplenia (along with several other defects-right aortic arch, TGA, tricuspid atresia, pulmonary valve atresia)

          1. Sorry to reply again but I had to actually look back to see what her 02 was–the first year after surgery it was in the lower 80’s and after that it slowly creeped down into the upper 70’s and stayed there for about her last year up until the fontan.Sorry, some of those years are a little fuzzy to me!!

            1. This is the story I always hear about the Glenn, that the babies did so good afterwood. Ate a lot oxygen was good. This is why I am worried about Logan. He still eats VERY little 3oz at a time and is still very sleepy. But Dr. Patel says it is OK, and I trust him. I think Logan just always has to be differnt 🙂 Do you by chance live in Canada?

              1. That’s great that he eats that much for you-my daughter came home with her feeding tube still taking nothing my mouth. Took her a few months to slowly start just drinking her bottle. Eating was such a HUGE hurdle with her as it seems to be with most heart babies. From Michigan actually–go to University of Michigan for her surgeries and love it!!

  1. Just wanted you 2 know that Jake just turned 7 months old and he is just now starting to hold his head up good and other things. I feel sometimes that he gets bored to , but im like you i just want him to be on track with his heart. Jake and Logan are so much a like. Jake will be going in on Feb. 3rd for his bi glenn. If you could tell me any thing about your experience with Logans Bi Glenn , i would be so grateful. I so hate having to go through surgery again. Keep doing what your doing with Logan cause mom knows best. Sending heart hugs!!!!

    1. Jennifer, Hey thanks for leaving a comment. Which surgery did he have first? A shunt or band? The Glenn sucks because it changes there blood flow so much that they are pretty miserable for a couple weeks. Logan was an extreme case too. His oxygen was so low and then he got SO MUCH blood flow to his upper half that he got bad headaches and was very fussy. I think in general though that the Glenn is an easier surgery than the the fontan. Is that all they are doing? Just the Glenn? What are Jake’s O2 levels right now? Where are you having surgery?

      1. The first surgery that Jake had was pulmanary vein repair. His 02 levels now are pretty good. his average is 85 and sometimes it is as high as 92. Every one says that thats amazing. I was kind of confused when i found out he was going to have the glenn because last we were told he would be having the series of 3 surgeries now they say he will have the glenn and then the fontan. We live right outside of atlanta so that is where he will be having surgery. They are really great there.

  2. Hi Kristen! Has anyone locally talked to you about BCMH? It won’t help you pay your Boston bills, but it will help with all of Logan’s Ohio bills, including dr appts and prescriptions. It will also put you in touch with all of the social service agencies that offer various forms of assistance. Logan should qualify for Early Intervention services through your local/county Family Services. It isn’t physical therapy, but they give you a lot of helpful information on different things you can do to help bring Logan up to speed physically.

    1. Yeah, we tried that, we didn’t qualify. We do have early intervention come out and like you said she just watches. I just think Logan has WAY bigger issues than if he sits at the right time. I honestly just don’t care about that all. And with his oxygen levels being where they are I just don’t want to push anything. Thanks though, its a great suggestion.

  3. Glad to see him in the 70’s. His pictures are so cute especially the one at the top of the blog! He obviously does not have the benson hair gene. Thanks for the update. I’ve had a crazy busy week but have been wondering how he did at the doc etc. Thanks for all the hospitality over the holidays. It was great to see you all especially little Logan who has been so closely in our thoughts. Hi to Ethan from Emily. They were cute together. love,Bill

  4. Hello Kristen. I recently had a child with heterotaxy on Dec 29th. I am very touched by Logan’s journey through life. My child Brooklyn was born with aspleenia, Common av valve, partial annomolous venous return, ductus dependent pulmonary flow, double outlet right ventricle, common ventricle and atrium, bilateral superior vena cava. She recently had the BT shunt placement and had some complications but now is doing some better. I have read Logan’s story and found inspiration by doing so. I would like to keep in touch if at all possible. I tried looking you up on facebook and was unable to find you. If you would like to keep in touch look me up Anthony Mills and i am from Alabama. I will keep Logan in my thoughts and prayers.

  5. I am so glad I found your site!!! I have been searching for a “heterotaxy community” for almost 3 years. My son is 2 and has heterotaxy, AV canal, TAPVR, Transposition, asplenia, and malrotation of the bowel. He is treated at Children’s Medical Center of Dallas and has done amazing!! I’ve been trying to get more information about heterotaxy and connect with other parents of children with heterotaxy. Thank you for creating this site!!!!

  6. Hi my name is Cassandra. I have a little girl named Cassandra, she was born July 26th 2012. I was 19weeks when they told me at my ultrasound that my child’s heart was on the right along with her stomach. That they weren’t sure if they saw a spleen n to this day they still don’t know. She has the blue tint like your son, i was informed that her heart has a murmer along with a hole that would need repair between a year to a year in half unless they felt otherwise. I really feel alone she is 13 months now hasn’t seen a cardiologist’s since birth due to having a hard time finding a good one. She weighs about 17 pounds and wears 12-18month shirts,sometimes 6 months, bottoms sizes are about 6 months and they seem to fall off. Her diapers are a size 3. She sleeps alot and i mean alot, she doesn’t eat much and tends to throw her food. Shes been really clinging to me and cries alot around others.Her arms n legs are so skinny, she always looks pale with blue tint running threw her. She seems to hold her right arm against the right side of her body when she walks as if shes holding her stomach, she has problems pooping sometimes. When i saw your sons pictures I felt like I was looking at my cassandra but only in boy form. Their facial features n long skinny fingers and they way he sleeps holding his bottle is alot like my daughter. Please any info on doctors you could provide me I would be great. Cassandra also has another condition they said its where the arteries for the bottom half of your body don’t directly connect the the heart. In their terms they said they stopped growing then decided to reroute themselves up the back of the body then around to the front of the heart.I’m not sure what that’s called.Thank you for listening to my story and I look forward to hearing from you.

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