GJ-Tube Replacement and UTI

Today was even crazier than yesterday with Toby. This morning his GJ-tube (feeding tube) came out. The nurse and I put it back in, but then we went to the hospital to have it replaced. Since the J-tube goes through the larger G-tube and has to curve into his small intestine, they have to do it in fluroscopy (a live x-ray)...to make sure it's in the right place.

Toby does have high amounts of pseudomonas in his urine (a bacteria), so they are treating him again for that. It means he has a bladder infection. This is the second time in the last 3 weeks that they have found this bacteria. The problem with the antibiotic is that it's really thick and you have to crush a pill and mix it with water then put it into his feeding tube. The radiologist that replaced his feeding tube told us today to plan on being back in there on Sunday with a clogged tube if we put it into his J-tube so we called the Pulmonary doctors to see if we could have special permission to give the medicine into his g-tube and therefore his stomach. They were okay with it. The problem with Toby having anything in his stomach is he has reflux and then he could reflux up the medicine and because he can't swallow well he could aspirate it into his lungs. We don't think it will be an issue though because it's not a large amount of liquid.

The urologist also wants us to straight cath him every 4 hours to keep his bladder free any residual urine that might stay in there and then be a breeding ground for bacteria to grow. After he's done with the medication to get rid of the bacteria, they are starting him on a low dose of another antibiotic as a preventative measure for keeping his bladder "bacteria free".

I'm tired, it's been a long day, but hopefully Toby will be on the mend now. His lungs are still not sounding real great, so we will continue to work with that to make sure they are clear.

CMG & EMG

Toby had CMG & EMG tests yesterday. They test his bladder and how high the pressures get before he would void urine on his own. His pressures were a little bit higher than they would like, but overall it went pretty well. We still have to straight cath him once a day, and just watch his volumes. The urologist wanted to put him on preventative antibiotics, and I asked that we wait on this until it's absolutely necessary since he doesn't have reflux up to his kidneys. He is okay with this, but they will test his urine monthly for bacteria to make sure he doesn't get infection. He continues to smile, kick, and move his legs quite frequently. 

Riding the Rollercoaster

Well, we certainly are riding a rollercoaster with this precious baby of ours. Toby seemed to be doing great, and then today he had a few episodes of apnea and de-statting , so they put him back on the ventilator. They tried a bolis of milk (which means a large amount in his stomach at once), and they're not sure if he refluxed this and aspirated it to cause the breathing problems or if it's his brain not telling him to breathe. We still don't have the results from the sleep study yet. He just didn't seem like himself today, more lethargic. They are checking for bacterial infections by taking cultures of his blood, urine, and mucus from his trach. We should have those results on Monday. They are also going to go ahead and start a range of antibiotics through a central line. They tried 5 times to get an I.V. in today, and his veins blow every time. They finally got a tiny one in his head, but it won't be able to handle IV fluids and antibiotics, so that's why they are putting in a central line (a larger catheter IV through a vein in his thigh). Today I read his verse from Psalm 40:17 "But I am poor and needy; Yet the LORD thinks upon me. Your are my help and my deliverer; Do not delay, O my God." We certainly continue to pray for God to deliver our son through this.

Believe Me Now

This is Carrie just wanting to write a quick update - I'm home, going to get some rest tonight. Toby has reflux and probably because of the spina bifida has trouble coordinating his sucking/swallowing reflex. When he eats he aspirates the milk into his lungs, which puts him at risk for infection. We have many questions for the doctor tomorrow about what this means, but so far they're treating it with the feeding tube through his nose. The good news, his oxygen level finally went up to 100%, and they were going to take him off of the extra oxygen tonight. They also think that his weak cry and loss of voice is due to the reflux affecting his vocal chords, causing them to be inflamed, etc.

Thank you for praying; it's been a rough day - feeling torn between home and the hospital. It's so hard not being able to feed Toby myself, he cries because he wants to eat and can't. Pray that he will either outgrow this problem, or be able to learn to eat by mouth again. God gave me some reassurance tonight through a song by Stephen Curtis Chapman called Believe Me Now. Here's a portion of the words.

I am the One who waved my hand and split the ocean I am the One who spoke the words and raised the dead And I've loved you long before I set the world in motion I know all the fears you're feeling now But do you remember who I am? Do you? So believe Me now; Believe it's true/I never have, I never will abandon you. And the God that I have always been, I will forever be, So believe me now I am the God Who never wastes a single hurt, that you endure; My words are true and all my promises are sure, So believe me now!

We continue to trust God! Good night.