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.

Eight Pounds and Conor's Eye Surgery

Toby had a good day. They threaded the smaller tube into his jejunum (small intestine), through the g-tube (larger tube in his stomach). He seems very content on the ventilator. He's sleeping well, and I believe weighs about 8 pounds. He even had a massage today from a therapist. She even taught me some things to do to soothe him. We're learning more and more about his care, and it's going well. I feel very comfortable suctioning out his trach, and Bruce and I have both been practicing quite a bit. They continue to work on coordinating his care at home. So, we wait! :) The boys come home on Saturday, which we can't wait. We miss them very much. Conor also has eye surgery to move the muscles outwards, since he crosses them even with his glasses. It's at Children's - outpatient, but pray for him. This is my child that can't stand to have his blood pressure taken!! :) I don't think he's going to do well with no food after midnight until surgery. I know God will help all of us through that also. Have a good night!

Long Talk With Pulmonary

The pulmonologists did a comprehensive review of Toby's history today. They feel that he should be on the ventilator at all times. Their concern is that he isn't stable enough to maintain his breathing, and then just normal things like growth while switching back and forth between the ventilator and the mist collar. The one doctor mentioned that he has really sporadic breathing and sometimes is only taking shallow breaths. A chest x-ray today showed that his lungs aren't getting a full volume of air, which can put him at risk for pneumonia. She asked what would happen if he got a cold. They don't want him so close to the edge that a cold would put his health at great risk. They believe full time ventilator support is the best option. They also decided to put his food into his intestine to further take away the risk of aspirating into his lungs. The sleep study results came back and basically didn't explain anything we didn't already know. It was difficult to hear this from the doctors, but I understand and am confident this is the right thing. We don't want to bring Toby home and end up right back in the hospital. Honestly I was there all day and switching back and forth from mist collar to vent and back again was annoying. I would rock him to sleep and then have to put him right back into bed to get the ventilator hooked up again. Having some consistency will be good for him and for us as we make plans to bring him home. I don't want to be on edge constantly to see if he's breathing. That would be very stressful. God is good, and will continue to provide all we need to take care of him.

Nursing Care and Surgery Update

He came out of surgery just fine, and is having a restful afternoon. Please pray that they will decide to feed him into his stomach, it will make life so much easier, and better for his comfort level. Also, the sleep study begins Thursday morning at 8:00 a.m. So far, Toby hasn't been great at sleeping, so pray that he will sleep well that day and be comfortable (without drugs to help), so they don't have to perform it again and prolong our hospital stay. Also, we're working with our case worker (we have one through the spina bifida/myelo clinic) to arrange nursing care of some type and the ordering of the supplies we will need. Pray that this goes smoothly, and that we will be able to have nursing help. Not only that, but we want qualified nurses that we will feel comfortable with. They will be working in our home. This is going to be very difficult for me, I'm a control freak! :) God is teaching me to let go, but I also want to have a balance.

Feeding Tube Surgery

Toby is in surgery right now to get his feeding tube directly into this stomach. Hopefully this will be his last surgery for awhile! I'm also praying that they will allow him to get his milk directly into his stomach and not into his intestine. The feeding tube is large enough, they can slide a smaller tube through it and into his intestine, so he can eat that way. I think he would be a much happier baby if he felt like he had some satisfaction from feeling full. It would also allow him to get a larger amount of food at one time instead of just a little bit continuously over 24 hours. We will see what the doctors say.

Feeding Tube Change

Feb 1, 2007 4:03pm

Toby had a pretty good night last night, he slept from about 11-7:30 a.m with just a few times when he became restless and needed his pacifier. I was thankful he rested so well, he's been needing some uninterrupted sleep. They're weaning him off of C-PAP today, and he seems to be doing well with it. We continue to wait.

Oh yes, I forgot to mention that his CT scan came back normal, his ventricles were completely collapsed, which means his shunt is working properly. Yeah! :)

Feb 2, 2007 11:11am

Toby had an okay evening with daddy. They ended up having to change his feeding tube because upon x-ray they found his feeding tube was actually in his esophagus, instead of the valve that goes from his stomach to his intestine. They did take him off of C-PAP last night, and he seems to be faring well, he's on 0.5 liters of oxygen now. He only weighs 7 lbs. 2 oz., so he hasn't been growing much, pray he will continue to get stronger and gain weight. The ENT doctors are talking about doing a scope of his throat and vocal cords on Monday; he will probably be in the ICU through the weekend, so they can continue to monitor what he does without the C-PAP. Oh yes, something I hadn't mentioned is that his bladder is working great. He's out-putting the same amount he's in-putting, and when they cath him once a day they're getting less than 5 ml. Yeah! We hope this continues.

Oxygen Levels

They tried to take Toby off of the oxygen today, and his oxygen levels dropped down, so he's back on. We're asking the questions about what needs to be done for him to come home. First of all, they want to find out why his sodium and potassium levels have been fluctuating or at least see the levels stay within a normal range. The last few days his potassium was lower than normal, but not enough to alarm doctors, and today it was back in the low end of the normal range. He's on an apnea monitor right now, and they're recording what he does and how he pauses in his breathing. From this they will decide how severe it is, and may even do a sleep study on him. After that they want to get him off of the oxygen and see if his feeding issues resolve. Not all of these things have to completely be "normal" for Toby to go home. He could go home on an apnea monitor, oxygen, and/or a feeding tube, so we wait and see what happens. We're praying all these things become normal, but if not we will be trained on how to take care of him. So we wait and pray.

CPAP - A Good Day!

Good evening. - Toby's had a good day, he continues to seem more like himself. He's been trying to lift his head up, and he gets ornery when the nurses change his diaper or give him a bath. He's been more awake and wide-eyed, especially when someone talks to him. They're trying to wean him off of the forced air pressure into his nose/airway, and his sats dropped a few times, so they bumped it back up. This is difficult for us because we just want him to be able to breathe without this extra help and come home. His sodium levels continue to be stable. They stopped giving him IV fluids, and he's now getting all of his nutrition through a continuous supply of milk! :) Tomorrow they should do the MRI. Our prayers for today are for Toby to be able breathe completely on his own, for the MRI to happen tomorrow as well as for its accuracy. They're probably going to have to put him under general anesthesia for the MRI, so pray that he tolerates that well also. One last request is for Bruce's parents, especially his mom. Bruce's grandmother (his mom's mom) is not doing well, and she was called to Texas to say her last goodbyes. This was expected, but it's obviously still difficult to say goodbye, and also to be torn in two directions (wanting to be here with Toby and then in Texas with her family). Thank you for lifting us up - God continues to give amazing peace and love. Goodnight.