Pulmonologist

Today Logan saw a pulmonologist (lung doctor). We were recommended to go see the pulmonologist by Dr. Tanaguchi last week. We got in quickly due to a cancellation. I couldn't believe we were seen so quickly. Things seem to work out that way for Logan. He just seems to be able to slide right in! One of Dr. Kurachek's first questions was, is he always this noisy of a breather.

We were at the clinic from 12:30 to 2:30. We had a chest xray and then Dr. Kuracheck spent a lot of time with Logan and I. He came up with a plan for Logan at home. We are now going to give him a nebulizer that includes a steroid medication. We are going to stop the albuterol because it really wasn't helping. We are going to get a pulse oximeter (a machine that reads pulse and oxygen saturation). We will monitor this at night and periodically during the day as needed. They also ordered a suction machine. He wants us to suction his mouth as needed throughout the day and he gave me the okay to perform deep suction only when sick and to use the need for that as an indicator to go to the hospital.

We also have a plan for when he gets sick. We will increase his medication doses, do continuous oxygen saturation readings, call or get seen for antibiotics, increase suctioning, use albuterol and then if his oxygen is below 88% were are supposed to take him in.

He did discuss using two medications in the future if the first home regimen is not making enough improvements. The first is called Robinul. It is a medication that will help dry up some of his secretions (saliva). The other is low dose azithromycin (this is an antibiotic) but when used a few days a week at low dose can help improve Logan's symptoms. It would not be used as an antibiotic traditionally is used.

We discussed a couple of options in the future that may help Logan if his aspiration continues to worsen. He talked about having some of his salivary glands removed to lessen the secretions. He also talked about a very invasive procedure related to his trachea. I can't remember for the life of me what it was called but it would mean taking his trachea and removing it from it's connection to the upper airway and routing it out through the skin of his throat creating a new airway. But it is not a tracheotomy. This would then prevent aspiration because there would be no connection between the mouth and the trachea. This probably does not make any sense when I try and describe it and it sounds pretty crazy. The Dr. agreed and really only shared this option to make sure I knew what options we have.

He was very thorough with Logan's history and physical exam. My impression of the visit was that he is pretty concerned about Logan. He listened to everything I said. He was very slow to speak at times. It reminded me of the visit to Dr. Moore, the developmental pediatrician. Dr. Moore was the first doctor that we saw that said something is wrong with Logan and that he suspected it was a metabolic disorder. During that visit Dr. Moore was very thorough, slow to speak, and deliberate in what he said. It was like I was at that visit all over again. A lot of emotions came rushing back during and after the visit.

Tonight Joel and I are overwhelmed. We are trying to process the new changes in our routine. When changes like this come up it always throws you for a loop. You start questioning what it means. When I was talking with Joel tonight I said that I feel like I was trying to make myself believe that things were not as concerning as they are. Then you are quickly thrown back to reality! The doctor talked about how hard it is for him to know how far to go with Logan because we don't have a diagnosis that can provide some expectations for Logan's future. That was really hard to hear.

I talked with Logan's speech therapist tonight and they want to keep moving forward with therapy. She is going to change her focus from feeding to communication and play. The physical and occupational therapists are working to get a hold of a therapist that held a conference a couple of months ago related to kids with respiratory problems and how to optimize therapy. They are thinking about video taping Logan during therapy and sending it to this woman for ideas. It was so great to hear their excitement and commitment to Logan.

We are also working on putting together a plan for his grant money. We have money to be able to use toward equipment, patient care attendant (sort of like a babysitter but more skilled), and some other items. If anyone knows of a good PCA or someone that would be trainable like a nanny or nursing student please let me know. Obviously they would need to live toward the Elk River area or be willing to commute. This person also needs to be over the age of 18.

So all in all another whirlwind day. Logan slept through most of it! Thank you for reading. I know these posts get long. It is very therapeutic!! Please call or email us if you have any questions.

Gillette Appointment

Logan had his appointment with Dr. Tanaguchi (physiatrist). He had a fellow with him (a doctor in training). Both of them did their assessment of Logan. They agree with everything that has been done for Logan thus far. He wants us to see a pulmonologist to address the problems with aspiration and breathing. He gave us names and numbers to specialists at Children's Hospital in Minneapolis since that is where Logan has been getting all his care.

They did an xray of his pelvis/hips. He wanted to see Logan's hips to make sure there were no problems. He explained that since Logan is not weight bearing as of yet that he wants to keep an eye on the development of the hips to prevent subluxation.

He also wanted to make sure we had the proper equipment for Logan. He said that he would be our contact when we were in need of orders for equipment. He also commented on how great it is that we are well connected with the various specialists, the Birth to 3 program, etc.

He did not have anything to add related to our search for a diagosis. He did agree that Dr. Renaud at Mayo Clinic is the specialist to be seeing for a diagosis. He also addressed that a diagnosis could be found but that it may take time and there is still a possiblity that we may not get one.

He wants to see Logan in six months for follow up to monitor his development. All in all, Dr. Tanaguchi and his staff were great. They addressed all of our questions. I am glad to hear doctors that are honest. We heard multiple times from the staff that it is hard to not know what to expect. I was glad to hear that they understood the frustration.

I am excited to get Logan in to see a pulmonologist. I am hoping they can help us develop a plan for his aspiration and help me know what to do when Logan gets respiratory infections. Being a nurse can sometimes be problematic when I am sitting at home in the middle of the night trying to decide wether to take Logan to the hospital. He compensates so well and when he is being hydrated 24/7 with the feeding tube I don't have some of the normal indicators that my child is sick. I have a hard time knowing when to be mom and have him seen vs being the nurse and trying to manage the situation myself! I know it is a little crazy! Sometimes I feel like I have two personalities when it comes to taking care of Logan!

On a fun note, Logan has a new favorite activity. He loves to sit in his exersaucer and bat at toys. Our physical therapist through the school brought over a new device that looks like a big diaper that we strap around Logan. When we put him in the exersaucer he is well supported and is able to play. Thanks Sara!! I will put up a picture or some video of him in it soon. Gotta run. Kids to play with!

Mayo Clinic Update

I am a little late to post this update but better than never! The nurse for Logan's doctor at Mayo Clinic called the first week of January and left a message that the skin biopsy results are not back and won't be back until the beginning of February. She said the doctor would call us at that time. I assume that the doctor that looked at Logans records when I called in December must have looked at the first round of skin biopsies. So we are still on the hunt and waiting for answers. At least we know they are still working on it!

Joel and I are very excited... Logan sees a new doctor at Gillette Children's tomorrow. His name is Dr. Tanaguchi. He is a physiatrist. I was talking to our speech and physical therapists yesterday and they said to think of him as a gatekeeper. We are hoping that he can help us look into Logans swallow difficulties, see if there is anything more we can do related to his abnormal movements, and look into his leg tremors. His legs tremor quite often, mostly the right one. This has been new since we saw the neurologist last summer. He doesn't seem uncomfortable when it happens and often it goes away when we reposition his leg.

I've gotta run but will keep the blog updated after we see Dr. Tanaguchi!

Happy New Year!