Home Sweet Home

We made it back home and boy does it feel good! It usually takes me a few days to realize how good home feels. While we're in the hospital my brain flips a switch and doesn't crave or 'long' to be back home. I guess my body focuses on the task at hand and adapts to whatever situation we are put in.

Hospital discharge was much more smooth this go 'round. A persistent issue is not being able to get the meds we need from the pharmacy. Thankfully the hospital called in advance for the antibiotics, however NO ONE has Vitamin K around here! It took me from Friday until Tuesday to get it. So Ty missed his Friday and Monday dose. This is definitely one to remember the next time we're released.

Ty is doing an AWESOME job with doing his meds and treatments this time! Wow!! I could not ask for anything more! It makes it so much easier when he does what he is supposed to do. I could get used to this!

PICC Line Issues

Today the home health nurse attempted to draw blood from Ty's PICC line for levels related to the Tobramycin with no avail. She tried flushing it with Heparin several times but nothing worked. She ended up having to stick him for the blood work. 

The 1st stick didn't take so he opted to have his finger pricked.

The finger prick worked well but didn't produce enough blood.

Ty agreed to another needle stick and this time: SUCCESS!!

Tomorrow we're headed back to UNC to have the PICC team clear the line.

Hospital Days 1-4

Thursday (Day 1)

We were admitted after our clinic visit. We went up on Vancomycin from 440mg to 600mg. So far the red man syndrome has not come back and we're not even doing benadryl! Thumbs up!  We've added intravenous tobramycin and he is on oxygen while he sleeps.

Friday (Day 2)

Today we had Ty's hearing tested. He's never been tested so we needed to get a baseline on him, especially since he is on both the intravenous and inhaled tobramycin. The test came back normal, his hearing is fine! I think it only took about 15 minutes and we received the results immediately. Ty's oxygen levels kept dropping so he remained on O2 until lunchtime. After that he maintained levels of 96/97 on his own. Today Ty had to have blood draws because of the change in dosage levels for the vancomycin and the addition of the intravenous tobramycin.

Saturday (Day 3)

Tyler was quiet all day today. He hardly spoke a word to anyone. Bran, Me-maw and Papa came to visit so Bran and Ty played on the laptops all day. It was pretty odd to not hear Ty talk and shocking not to see that infamous attitude of his for an entire day. ☺ Oxygen levels stayed low all day so we kept the O2 running. We had another blood draw to monitor kidney levels.

Sunday (Day 4)

This morning we were awoken to the nurse freaking out over Ty's PICC line. Undoubtedly he had completely wrapped himself up in the cords and had pulled his PICC line out a little bit. I think she drenched and scrubbed his arm in alcohol for fear of infection. I got kinda tickled at her because she panicked but it was comforting to see that she cared and took extra precautions to try and 'save' the PICC line. The doctor was paged and an x-ray was done to see where the line was. The line is no longer "central" but it is still okay to use to administer the IVs. The IV dosages remain constant, however the concentration has been changed to accomodate the misplaced line.  Tomorrow a team will come in and will either push the line back up or will thread a new line inside the existing line.  I had no clue they could do that so it will be interesting to see! O2 levels are still low so we're still wearing the O2 nose piece. 

Today the doctor asked if Tyler ever talked to me about his CF, how it makes him feel, his fears, if anything worries or bothers him, etc.  I've asked Ty about his feelings but he didn't voice much. Our conversations usually come up when I prepare him for a scheduled procedure or when we need to talk about compliance with his medicine and treatments. The doctor is going to have one of the psychologists come and talk to him to make sure there are no unmet needs.

Another blood draw a few minutes ago. When the lady stuck him I could tell she wasn't good at what she does. She stuck him and went WAY into the vein. I could see the tip of the needle trying to stick out of the skin on the other side. She then proceeded to move the needle around in the vein while Tyler cried in pain. She did this 2 times. Her time and opportunity is up. She'll not stick him again. The next one better get it right or this Mama is going to get mean.

Clinic Visit

Our clinic visit was yesterday, we were excited to see how high Ty's PFTs (lung function) were. We were also going to get his PICC line removed since the doctor allowed us to keep it for an extra week. Ty did his lung function test and could only get up to 44%.  He struggled with pushing air out and would start coughing pretty quickly. He turned around and looked at me and said he didn't have any air in his chest and that it was hard to breathe.   That hurt.

From that point until the doctor walked in I knew that we were in big trouble. I could hear the doctor talking about Ty in the hallway, saying he had never seen anyone drop half their lung function in just 1 week. He even went and talked to the PFT guy to make sure he had done the test right. Ty was given 4 puffs of Albuterol and the test was repeated. His 1st blow was his best @ 51% and he went downhill from there.

We were immediately admitted into the hospital and a few things were added to our treatment schedule. We're now doing oxygen, prednisone and tobramycin.


Confession time:  I've always seen our CFers with oxygen on but let me tell ya, it takes on a whole new meaning when you see your own son with it. It hurts, it ties my stomach in knots and it gives me a much deeper appreciation for fellow CF families and patients.

Overnight Ty's oxygen level dipped to 88 and 89. With the oxygen he's back up to 97.

That's all for now.