So yesterday....... Ah, yes, yesterday. We got home at 12:15 actually THIS morning I guess. The whole family. Sweet little Josiah helped the family to bond in the ER again.
It all kind of started on Sunday, but more specifically last week.
Josiah is on Pediaure for his daily food intake and he has been for over a year. Once we got through the trauma of his gtube and fundoplication surgeries, as well as his hip abduction surgeries, I was able to start thinking through smaller everyday things. So, naturally as a granola geeky mom who has always loved nutrition, I start looking at his diet.
Now before I give Pediasure negative press I need to say this. It has been working. Josiah is growing. It can be in his food bag without me worrying about it going bad over 24 hours. But I am struggling with giving him just Pediasure for growth. Here is why. Take a look at these ingredients and see if there is anything that concerns you. (My first though honestly was that if the second ingredient is sugar does that raise blood sugar levels too high.?....., I start thinking diabetes.... , I start dreaming of healthier carb choices.)
ingredients:
WATER, SUGAR (SUCROSE), CORN MALTODEXTRIN, MILK PROTEIN CONCENTRATE, HIGH OLEIC SAFFLOWER OIL, SOY OIL, COCOA POWDER (PROCESSED WITH ALKALI), SOY PROTEIN ISOLATE, MEDIUM-CHAIN TRIGLYCERIDES; LESS THAN 0.5% OF: SHORT-CHAIN FRUCTOOLIGOSACCHARIDES, POTASSIUM CHLORIDE, MAGNESIUM PHOSPHATE, CELLULOSE GEL, CALCIUM PHOSPHATE, CALCIUM CARBONATE, NATURAL AND ARTIFICIAL FLAVOR, POTASSIUM PHOSPHATE, POTASSIUM CITRATE, SALT (SODIUM CHLORIDE), CHOLINE CHLORIDE, SOY LECITHIN, MONOGLYCERIDES, C. COHNII OIL, ASCORBIC ACID, CELLULOSE GUM, CARRAGEENAN, m-INOSITOL, TURMERIC, POTASSIUM HYDROXIDE, TAURINE, FERROUS SULFATE, dl-ALPHA-TOCOPHERYL ACETATE, L-CARNITINE, ZINC SULFATE, CALCIUM PANTOTHENATE, NIACINAMIDE, FD&C RED#3, MANGANESE SULFATE, THIAMINE CHLORIDE HYDROCHLORIDE, PYRIDOXINE HYDROCHLORIDE, RIBOFLAVIN, CUPRIC SULFATE, VITAMIN A PALMITATE, FOLIC ACID, CHROMIUM CHLORIDE, BIOTIN, SODIUM SELENATE, SODIUM MOLYBDATE, POTASSIUM IODIDE, PHYLLOQUINONE, CYANOCOBALAMIN, AND VITAMIN D3.
CONTAINS SOY AND MILK INGREDIENTS.
These ingredients are...., well...., not what I would feed my other children. (Ummmm., ever!!) But you know what. I need Josiah to grow. The doctors need to know Josiah is going to grow and this is easy and simple for them. They know that PediaSure is clinically proven. It is scientifically proven.
But I still requested to see a dietician...., I am grateful they obliged. We worked out a very loose plan.....
Over the weeks I have a really hard time getting it started. It is so easy to just put food in a bag and on continuous feed. Giving him real food means I can't leave it out for 12-24 hours which means that there are food safety issues.
And food in large amounts seems to make him gag and choke. Sometimes this gagging and choking is very mild and find and he can get himself out of it. Sometimes like yesterday it crosses the line into dangerous. Very dangerous.
It was at the point where they think they put him into seizures. Sunday they were very mild and there were only 1-2. Yesterday there were 10-12 in one day to where he stopped breathing and choked on his own saliva and changed colors for 30-60 seconds. My neighbor saw it and was as terrified as I was.
Off to the ER we went.... my sweet neighbor driving so I could sit in the back if Josiah had another seizure and had a hard time breathing again.
After being for 7 hours their basic thoughts were that these were seizure episodes and he had mild dehydration. So he was put on a basic rehydration formula. And they want to up his seizure meds slightly (which always makes it so hard.... upping any med is really hard on me), and put him back on Pediasure until we can see the GastroIntestinal doctor in a week (which coincidentally happens to be Elijahs's birthday, poor little guy).
It will be simpler, but I still don't like the ingredients in what I give him daily. But we need to see if we can get him to a normal baseline again and than maybe they will let me try and tweak things again?
But maybe they will be too nervous to do that. And I completely understand. And than I will get frustrated and nervous.
So I am praying that the doctor and I can work together really well. And that I can understand their concerns. And that they can understand mine. And if mind changes and understanding needs to happen that that can happen smoothly and peacefully.
And that sweet Josiah can thrive. And that my family can thrive under all the pressure they are under now. And that we would all love one another. Because really, that is the most important thing right? And it has been shown that it is one of the best medicines.
Off to the ER we went.... my sweet neighbor driving so I could sit in the back if Josiah had another seizure and had a hard time breathing again.
After being for 7 hours their basic thoughts were that these were seizure episodes and he had mild dehydration. So he was put on a basic rehydration formula. And they want to up his seizure meds slightly (which always makes it so hard.... upping any med is really hard on me), and put him back on Pediasure until we can see the GastroIntestinal doctor in a week (which coincidentally happens to be Elijahs's birthday, poor little guy).
It will be simpler, but I still don't like the ingredients in what I give him daily. But we need to see if we can get him to a normal baseline again and than maybe they will let me try and tweak things again?
But maybe they will be too nervous to do that. And I completely understand. And than I will get frustrated and nervous.
So I am praying that the doctor and I can work together really well. And that I can understand their concerns. And that they can understand mine. And if mind changes and understanding needs to happen that that can happen smoothly and peacefully.
And that sweet Josiah can thrive. And that my family can thrive under all the pressure they are under now. And that we would all love one another. Because really, that is the most important thing right? And it has been shown that it is one of the best medicines.
So, these are my struggles. And these are poor Josiahs struggles.
And I'd appreciate prayer.
I have more research to do. I need to see if he has food allergies or sensitivies because he did ok with certain foods for quite a while. I need to see if feeding him meal like amounts causes problems. I tried some supplements to try to give him better nutrition and I need to see if those caused problems. One did say use with caution if there is a history of epilepsy.
So, I need to do research. Along with all the other caregiving responsibilities. And taking care of my sweet other children. And my hardworking husband who this puts stress on. And trying to move. And being pregnant. And going to doctors appointments for OTHER things. And getting Elijah through oral surgery this Thursday.
Oh my.
I'd appreciate any and all prayers.
But I know all of you have things going on in your life as well. Please feel free to leave any prayer requests and I will try and pray as I am able.
God bless anyone who actually takes the time to read this. And have a really good day.
