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.

We are Out of the PICU

(This is Erika)

I just wanted to write a quick update and let everyone know that Toby has moved to a regular floor!! It is so crazy because he is in the same room as my son "lived" in for a month and a half.

The CT scan results showed that his shunt is working fine. So, thankfully, he doesn't have to go through another surgery!

He has been on his mist collar all day today and is doing well. The next time he falls asleep they will probably put him back on the ventilator so he doesn't get too tired.

Because they have to line up supplies and nursing care, it will still be a few weeks before they can go home. Moving out of the ICU is a step in the right direction!

Not What We Expected

Today Toby is going to have a CT scan. They also are planning on having Toby on a ventilator while he's sleeping, and on the mist collar when he's awake. They are going to switch him to a home vent. This doesn't mean he's going home, I just think it's one similar to what he would use at home to see how he tolerates it because can be different. After they see how he does with the vent., then they will try bolus feeds again. No results yet from the sleep study, but it seems he is going to need a vent when he sleeps as a result of the apnea. I don't know if he can grow out of this or not; I need to ask, and even then they may not know either. Bruce and I practiced changing out the trach and trach ties today on a dummy. When they switch him over to the home vent they will also begin training us on that. It will probably still be at least 2 more weeks before he can come home (it might take that long to have insurance approve and supply a home ventilator). It's not what we would have wanted, but we're okay with it. God is giving us joy, and we're enjoying our sweet baby boy.

Slow Going

Toby is doing better. So far it doesn't seem like he has a bacterial infection. All of his cultures have come back normal (no growth of bacteria after 24 hours, but something could still grow, so we're waiting). They did start him back on his milk and they are weaning him from the ventilator. Hopefully Monday we will know more from the sleep study.

Update at 6:37pm

Toby is having a good day. He's still on the ventilator, but on a very low rate of 4 breaths a minute. He is being fed the full amount, so hopefully he will grow. He's been hovering just above 7 pounds, gaining some then losing some. They're planning on doing a CT scan tomorrow to ensure that his shunt is working properly. From here we just wait.

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.

Sleep Study Today

Today is the sleep study. Toby is in the sleep lab with all of these wires glued to his head! He looks pretty funny. When I left he was actually sleeping, so thank you for praying! I came home because there isn't much for me to do except watch him sleep, and a PICU nurse that we trust very much is with him, so she told me to come home and get some rest. I pray that she doesn't go crazy in there - it smells like rubber cement, and is dark! The study lasts for 6 hours! :) We won't know any results until tomorrow afternoon. I guess there's over 900 pages of data to read and sort through. That's quite a bit, so we will wait patiently for that!

Feb 15, 2007 9:08pm

Toby had a really good day - he slept great for the study. They also took him off of oxygen and put him on room air. He dropped his oxygen one time during the study, and was put back on oxygen, but then they took him back off again, and he's been off of the O2 ever since! :) I hope this means that he is on the mend.