July- we finally started receiving our Private Duty Nursing hours with PSA- the home health agency. We had qualified for over 100+ hours. We now have nurses M-F from 7a-7p and night nurses on M, W, and Th from 9p-7a. Now we can somewhat sleep. Having nurses is a blessing indeed. Without them, I don't know how Paul and I will be able to function. Of course, we still do everything for Caleb. It's just nice to have assistance.
In July, Caleb also had another Modified Barium Swallow Test and it revealed he still had silent aspiration.
The picture above is the MBS test. He is starved first, then fed formula with varying consistencies. A live x-ray then follows where the food goes. In his case, some food went to his lungs. Not a good thing.
We also started OT/PT with ECI. The therapists continues to work with his motor skills. I think Caleb is doing really well. He can sit up for hours! He still can't roll over and crawl. This delay is correlated mainly because of his trach and his g-tube being in the way, in my opinion.
Above picture shows he can sit up unsupported. So proud of him!
The same month, we started his twice/week Speech Therapy. She works closely with Caleb with his Passy Muir valve and his swallowing. So far, he hasn't really taken anything by mouth yet. We're still with the formula via g-tube.
We also found out that it's doctor's orders to always have at least 2 adults when transporting or traveling with Caleb. If we are not in compliance, CPS can get involved. Good information to know.
August- we had a very big scare. Neurosurgeon thought that Caleb may have to undergo brain surgery. This was very concerning. I couldn't fathom yet another surgery. So we went to day surgery for an MRI. Through prayers, the doctor decided against it...for now. He scheduled us for an MRI in March to reevaluate his cerebral cysts. God is good. I have faith in Him.
September- Caleb got really sick with a bronchial infection. This required him to be on O2 for two weeks. My DME company decided to give us a concentrator. That way, we always have access to oxygen.
The same month, we met with the Metabolic Geneticist. He stated that all genetic tests he had ordered turned out to be negative. This was a relief. However, to the doctor, that meant two things: Caleb's condition is rare or unknown or technology isn't available yet. Doctor seemed frustrated about not knowing Caleb's diagnoses. It appeared he was challenged. He recommended we not have anymore children until they can determine his diagnosis and they can be sure that what ever it is... isn't hereditary. I had mixed emotions.
On September 30, Caleb cried for the first time since he was trached. For most, a crying baby is normal. Some may even find it annoying. To Paul and I, it was music. Our baby boy can cry. Of course, only with his Passy-Muir valve. But regardless, it was a huge milestone. I cried tears of joy.
Caleb is 8 months now. Yesterday, Oct. 1, we met with his pulmonologist and his ENT doc. They are talking about a possible decanulization (sp). It means trach removal. Yesterday was a happy day. Then it hit me, without the trach, we won't have nursing, without the trach, we may lose Medicaid. He's near his lifetime maximum for our private insurance. What are we to do? I kept stressing about it. Just because he doesn't have a trach doesn't mean all his other medical issues will go away. We still need insurance. I pray that somehow everything will be alright. All I can do is pray.
On a personal note, I'm really beginning to feel alone here in Texas. It's just Paul, me and Caleb. Some friends and our nurses-whom we've grown to love and consider as family. We really need to be with family.
I asked his doctors if we can travel to Vegas during the Thanksgiving Holiday. It seems just getting there is a process. Have to get clearance from all doctors, then the plane has accommodate us-since we have so many medical equipments.
I'm optimistic we'll be able to travel. I need a dose of family right about now. I'd love for all to see my Caleb.
I love this pic.
