This past week has been quite interesting. The good news is that Savannah is doing quite well. The bad news is that Savannah has another surgical procedure scheduled in May.
Our first appointment on Thursday was with an ears, nose, and throat (ENT) doctor – it’s easier to write than Otolaryngologist. When Savannah was intubated for her heart catheterization back in January, the anesthesiologist had to use a smaller than expected tube to get the tube in past her vocal cords. With Savannah’s many birth defects, it’s possible that she has a potentially fatal narrowing of her trachea. While she’s breathing just fine now, this could change if there’s complete tracheal rings or significant tracheal stenosis. The procedure scheduled for May will be a short scope to take a look down her throat to see what is or isn’t there. Please join us in praying that they find nothing!
The second appointment of the day was with Savannah’s immunologist. Outside of a short physical examination of sissy, this was a nice long Q & A session. She had a lot of questions for us, and we had a lot of questions for her. Most notable, she is developing a fever plan for Savannah. This will be a written letter that instructs us and any physician as to what to do if Savannah spikes of fever. She also ordered several blood tests to evaluate Savannah’s spleen function and overall immune system. They will do the blood draw when we take her back in May.
Our final appointment was with cardiology. We met her cardiologist and the home monitoring program nurse. They had not seen her since she was just 2 weeks old. They were extremely pleased with the way she looked and how well she was doing over all. We asked a lot of questions and got validation that we are on the right path towards Boston. They did go ahead and order an echo while Savannah will be sedated for the other procedure. This will let her team get much better and clearer images. Lastly, we were also able see the nutritionist in the Heart Center to talk about some of her feeding issues. They gave us some pointers and ideas.
Overall, all three appointments went extremely well. It was also extremely nice to see the Dishions again. You are our Cincinnati home away from home, and we love you so much! All in all, we simply wish that Savannah didn’t need to have another surgical procedure. Your thoughts and prayers for her upcoming surgery are greatly appreciated.
In the coming weeks, her cardiology team will be making the decision about our trip to Boston in June. There’s a good possibility that the trip will be delayed, but we don’t want to postpone the trip if she really needs to be there. Please pray that the right decision is made.
Thursday we will be going to Cincinnati Children’s for a day full of appointments for Savannah. While we don’t expect any surprises, I am still nervous!
We will be seeing ENT to double check her airway issues, but we honestly don’t expect there to be any major problems. Both her pediatrician and her home health nurse have said they have never noticed any signs of airway difficult or breathing difficulties. As the pediatrician put it, this should just be something to “check off the list” and move on. Prayers that it goes that way would be much appreciated!
We will also be seeing immunology. This is to discuss Savannah’s vaccinations and immunity testing, as well as finding out what kind of contact we can have with the outside world.
We will also see cardiology and they will give Savannah a good cardiac once-over. We are going to be discussing Boston’s proposed surgical plan with them and getting the cardiologist’s input on the situation. I love Savannah’s cardio in Cinci. She is upfront and honest and 100% not afraid to tell us what she thinks is in Savannah’s best interest, even if it takes us away from Cincinnati Children’s for surgery. She is the one who encouraged us to get Savannah’s records in the hands of Boston in the first place. I am anxious to see what she thinks. We will also be talking to them about her reflux and if they think it’s affecting anything enough right now to see a GI or if we should keep doing what we’re doing.
Finally, we will see Nutrition. We will be discussing Savannah’s formula concentration, introducing food, changing formula to help the reflux, and how to get more calories in to her. It will be interesting to see how we move forward with her feeding to support continued growth.
Please pray continually for Savannah. We want her to grow and remain stable so she can be as big as possible before her heart surgery. We need her to remain stable in a cardiac sense, as well. Function needs to remain good, her pulmonary stenosis needs to not get worse, and her oxygenation need to remain high. There is so much ahead of us that is so incredibly scary. We need the Lord to keep His hand on our sweet girl.
I’m up late making some copies of Savannah’s heart cath and recent echo so they can be mailed to her Cardiologist in Cincinnati. I wanted to verify that the disc copied properly, so I launched the program and started to look at some of the cath images. They are simply astounding. It’s a miracle that she’s alive at all, but then to watch that little heart beat, despite its many imperfections, is incredible. Ultimately, that little heart will need to be fixed. Without surgical intervention, Savannah would outgrow the capabilities of her heart and go into heart failure, or her oxygen saturation levels would get so far out of whack that she’d get too much or too little blood going to her lungs. But for now, her pressures are in perfect balance. See, she’s supposed to be a blue baby with a condition called cyanosis, but the only blue we see on a routine basis is in her beautiful eyes, not her skin. It’s such a joy to see the surprise on the faces of her doctors and nurses when they look at Savannah. We know the road ahead will still be quite long; but if you don’t believe that God still does miracles, just look at Savannah! We see God’s handiwork everyday.
I know it’s been some time since we’ve posted an update, but I guess in some way that’s a good thing. Overall, Savannah and family are doing okay. Savannah is battling thrush, a fungal infection in the mouth. This is fairly common in babies, but it makes for a difficult time when eating. The good news is that Savannah is over 10 pounds and growing. Her oxygen saturations are still good, and her heart is still strong.
Coming up next week, we have another echo to check on her heart – growth, rhythm, function, etc. Then in a few weeks, we will head to Cincinnati for another round of testing and follow ups with her team there.
Then later this summer, we will be traveling to Boston. Boston Children’s Hospital is where Savannah will have her heart repaired. This journey is far from over.
The physical, emotional, and even financial tolls of having a healthy child are overwhelming. But when you multiply it by several orders of magnitude with a baby like Savannah, we spend much of our time feeling exhausted, helpless, and alone. We appreciate all your prayers and support. Please keep them coming, especially for Lori. I thankfully have the distraction of work. I get to leave the house and spend time away from the daily grind at home. Lori doesn’t get to do that.
Savannah has come so far, but has so very far to go. There are no set medical guidelines or plans for how to treat and manage Heteortaxy Syndrome. It’s all a case by case basis, leaving each family to ultimately decide on their child’s course of treatment. This is probably the hardest part of it all. The decisions that Lori and I make now will ultimately impact Savannah’s survival. I don’t think you can ever carry any greater burden than that.