Shabby Blogs

Tuesday, November 29, 2011

Surgery Thursday

So there has been a slight change in plans. There was an emergency in the PCICU and one of those babes needs operated on. So Jack is being pushed to Thursday, 7:30 am.

I was in pre-op today until after 6pm. My head has been spinning with all the details of the days ahead. The outlook is very good and there are a few things we will be looking out for. One, a fatty drainage around the heart that would be treated with a special diet. The other is part of Jack's anatomy that could cause him to have a heart attack, but they do not expect this outcome. Just like anything they have to tell you the worst scenario. Other facts I learned were he may be irritable from a headache caused by the change in the way the blood flows in his head and he will actually be bluish until he heals. Sorry I am so vague on details. There is just so much and I am still trying to put it all in order! I can answer questions, though. Please let me know any specific questions.

I could kick myself for not taking a picture of him today. He has so much personality. He only slept a max of 30 minutes the whole time we were there! He did not want to miss greeting anyone who walked by. His favorite was the attending who was barley able to wash her hands because he was saying what sounded like "hey" over and over. When she acknowledged him he would just laugh! It was absolutely precious!

Thank you all so, so much for your support and prayers. We are so lucky for each and every one of you!

Monday, November 28, 2011


Nope, I don't mean next Wednesday. I mean this one, as in day after tomorrow. November 30th. I got a phone call at about 7pm and on the other end was one of those voices you never forget. He didn't even need to tell me who he was, it was Dr. Bradley. He presented us with the date and the other option was to wait until sometime in January, he wasn't sure when he could do it. He strongly urged us to go forward with it because the shunt won't last forever. We decided if that was what was best for Jack, then we would do it. So we are headed down tomorrow for his preliminary work up and surgery will be Wednesday morning. I don't have many details yet, and about a thousand questions so I will let you all know more tomorrow.

Until then, please pray.

Wednesday, November 9, 2011

Cath and tummy results!

So after my post last week I got an email from GI at MUSC stating that they decided there were less invasive tests they could conduct before they scoped him. Jackson and I were really disappointed because we felt that is where we will ultimately end up, but maybe not.

Monday we headed to MUSC for a GI appointment. The nurse practitioner for peds cardiology asked if she could go with us to see what they had to say, and I am so happy I told her yes! We came up with the game plan that Jack would be admitted to 8D after the cath and Wednesday morning a gastric empty scan would be conducted to determine if his stomach emptied into his intestine properly. If it did they would place an impedance probe for 24 hours to see if he was refluxing above all the reflux meds.

This morning I watched the gastric empty scan. They filled his belly with only 2 ounces. I usually feed him 2.5-3. For 1 hour he laid in an MRI machine while pictures were taken as his stomach emptied. The techs couldn't tell me results but it sure looked to me like there was a lot left. About an hour later they called with the results and after the hour only 1 ounce had made it to the intestine. After all the pain I am praying this is truly the answer. It is treated with a low dose of an antibiotic whose side effect is helping the stomach empty more quickly. They said I should see significant difference in a week. The technical term is gastroparesis and after reading the symptoms it is the only thing that does fit what's going on perfectly. Hoping this is really it!

Ok now the cath. It went great which is a good thing and a sad thing. The pressures in his heart and his size is ideal for surgery. They are putting in a surgery request for 6-8 weeks and will be calling us with dates in about 2 weeks. That is so soon. Dr. Ryan Butts, also an Irmo native, drew me another one of his lovely pictures of a heart to explain exactly what happens for the Glenn procedure. I'll go into those details later.

This is Jack coming off his sedation. He was pretty funny which surprised me because I thought he would be upset.

I am so happy we got some GI answers and to know that is heart is doing so well! Thanks for all your prayers. God is listening and I know he is watching over this sweet boy! My Jack of Heart!

Location:County Road S-36-28,Peak,United States

Thursday, November 3, 2011

We need some prayer warriors

I cannot tell you how crazy life has been. We have had so much going on it hurts sometimes. I wish we could get to some sort of normalcy, and I am told it will happen, but I feel like it is never coming.

So to start his third month we ended up in the ER. Fortunately it had nothing to do with his heart but of course, that stupid g tube. I seriously thought it was infected. It was so red and unfortunately still is. I have no idea what changed but it will not go back to being flesh colored. So anyways, we were sent to the ER to get IV antibiotics. Well after all the ER docs treated us like we had "done something to it" they finally called the pediatric surgeon who agreed it was NOT normal for it to look the way it did and he agreed we had not tampered with it, prescribed some antibiotics and wanted us to follow up with him or the ped surgeon at MUSC. I chose to go to MUSC and I am sooo happy I did. The visit spawned all kinds of things. First we went and saw one of our favorite OTs. She worked with Jack for a bit and we told her what had been going on with Jack's g tube, his constant screaming while eating and the white tongue he had for so long. She immediately began calling people to come and look at him. I was so happy. I really feel that everyone at MUSC is so helpful. So we started to get on the right track for some answers. Peds surgery came down and looked at the g tube. They decided to go ahead and do a g tube study just to make sure it was in the right place and not blocking the the intestine. Everything looked great so that was cleared from the eating issues. The following week we had a follow up with peds surgery. They thought, just as I had, that the white tongue could possibly be thrush. So we treated it. Unfortunately I knew after 7 days of treatment it was not thrush. So I called his pediatrician and asked if he would refer him to a GI at MUSC because in Columbia they were not helpful with entertaining my ideas to discover what the eating issue was. In addition, no matter how many times I explained it they were so dense on his heart. They aren't the only ones though. I am so shocked sometimes how people in the medical profession know so little about the heart. I know more than most!

So, MUSC GI was the best place we could have gone. When the doctor came in the room I didn't have to tell the whole story again. They had read his chart and told me what had been going on! I think my chin was on the floor. They first checked his stool for blood and sure enough! So they switched him to Neocate. I was so happy thinking "Finally THE answer." I typically try not to get too excited because most things work for a few days then quit. Well I have seen some changes. The white on his tongue is almost gone! He is recovering sooner after eating but it can still be an hour before he is up to anything, which is delaying some of his therapy. And he is not throwing up as much throwing up but it can be an hour later which makes me thing something is wrong with his intestine. Sigh.

So the prayers we need. He is having a heart cath Tuesday, November 8th. I am a little nervous about what they may find but it will tell us how his heart is doing. They will base the next surgery date from this cath. We may or may not have an overnight stay depending if they have to make any repairs. The letter they sent me also said they may have to stay "depending on the severity of the heart defect" and I would say Jack qualifies in that category. We are also working to coordinate scoping him that day while he is under the cardiac anesthesia. Please pray that his heart is ok and that we find some answers to his tummy issues!

Thank you so much for all your support! I am going to try to update more frequently. I am so happy that many of you have been asking me about the next update! Keep on me!

Happy 5 Months Jack!

November 1 this guy was 5 months old!

Weighing in at a whopping 14 pounds 10 ounces! He really starts to feel heavier after about 5 minutes of holding. He is a happy little boy despite all his tummy troubles and has started mocking our sounds and facial expressions. My favorites, one is we pucker our lips at one another and say "hmmm" then I start laughing and he laughs too. The other is I ask if he is huuuuuungry, and he will growl it back to me. He sure thinks his dad is especially funny. Their latest thing is Jackson says "Say Cheeese!" and Jack starts rolling! He is ticklish almost everywhere and I am sure he get tired of us tickling him all the time just to hear him laugh.

We've been trying out sippy cups which he seems to like and if you attempt with one don't try to give him the bottle after. He will just get mad at you. Speech therapy has us working with something called a Z Vibe and he hates it! It is to strengthen his oral muscles. I haven't even made it vibrate yet and he cries. We have to do it three times a day so I am sure he will eventually get used to it, I hope. Everything in his hands goes straight to the mouth and his lower gums look white on certain days so I am thinking teething is not too far.

Physical therapy is going great! He hates it but works so hard! We are working on tummy time still, which he despises. I make him do it anyways. The PT and I both agree that once he strengthens that chest he will be crawling. He's got the legs but that big scar is holding him back. So when you do put him down for tummy time he ends up making himself into a tent on his neck. If he could figure out how to get his arm in the right position he would roll over to his back. Rolling back to sides or tummy is no problem, he just gets mad once he gets to his tummy. He will sit for about a second on his own so I am hoping he will be sitting well in about a month.

His favorite toy is his Scout, a green stuffed dog that sings songs using his name and his favorite things. When he is upset all we have to do is let Scout start singing and he stops crying. Needless to say, I know all the songs by heart after all the times I feed him everyday!

He still sleeps in our room. Until we get his tummy issues figured out I am not comfortable with him in the crib. He loves his sleeper though. I clipped some toys on the sides for him and he happily plays until he falls asleep. He has started sucking his thumb too which I think is really sweet. Someone said to me " Oh no, you need to stop that!" I have no intention to. If he is still doing it in a year we will address it then, but for now it is sweet.