RSV Day 8

Kaitlyn had another desat over night last night. She was bringing up lots of thick gunk during the 4:00am physio, as a result she gagged and spit up!! I suctioned as best I could, then coughed her to try and get all the formula out of her lungs. It was obvious that she had aspirated some despite my best efforts. She had to have 10 L of O2 added to her bi-pap just to keep her sats above high 80's!! We were able to wean her down to 6 L in only a few minutes with a few more rounds of cough-assist!

She had chest x-rays that showed she still had the infiltrates in the upper left lobe of her lungs, and a new area of what looked like either aspirant or incipient pneumonia in the upper right lobe of the lungs. X-rays are funny things as they lag behind the actual symptoms. They are also open to interpretation, but the main thin is that Kaitlyn doesn't seem to have any areas of pneumonia in her lungs. This is really good because it means that we have been successful in mobilizing whatever is in her lungs. We are not giving the mucus and secretions a chance to settle and become a full blown pneumonia!

Bloodwork still looks good. We asked again for a central line today. Nobody wants to place a central line in Kaitlyn. The surgeons are usually the ones to place the line, but they won't touch our girl, as she is too difficult a case. The Intensivist didn't want to place a central line, she wanted to see if a PICC line could be placed. A PICC line goes into a vein and is a long catheter that is threaded up into the vein until it meets the larger internal vessels. This type of line would be less likely to clot, and more likly not to blow!! There is only ONE doctor in our entire Children's Hospital that has the necessary skill to place these lines. If she's on vacation nobody gets a PICC line....seriously!! She came up to see Kaitlyn, at the request of the Intensivist. She has rendered Kaitlyn inaccessible for a PICC line. She is basically saying that there is no vein on Kaitlyn's entire body that she could access to thread a catheter to a major blood vessel. This is extremely scary!! If our child needed veinous access in an emergency...they might not be able to get it!!!!

They are of course begging us to reconsider some sort of more permanent veinous access. It seems like he older she gets the more tricky she gets to place lines, and the more fragile her veins become...so she blows the lines (this literally means that the fluid being delivered leaks out of the blood vessel into the surrounding tissues)!! This is why Kaitlyn has had two swollen feet and a swollen hand this hospital stay...from the three "blown" peripheral lines! Yes that's right Kaitlyn has blown her third peripheral line...no more TPN until tomorrow. The issue with some sort of more permanent line is that they always require care, which means that Kaitlyn requires more invasive type care! But the trade off is that she would have permanent veinous access. So...why haven't we done this??? Seems simple, place the access line..."POOF" magical veinous access!! (Sorr for the sarcasm ;oD )

There are two main forms of permanent lines, what they call a Port-a-cath or a Broviac line. The broviac line is typically the easiest to place but it is an external line. This means that wherever on Kaitlyn's body that the decided to access a vein, Kaitlyn would have extending outside of her body an external IV connection line! This line has a higher chance of being infected, and you have the worry of it getting pulled, and you have to keep it dry. This means that we would have to use a surgical dressing every time that we wanted to give our daughter a bath. To us anything we choose for Kaitlyn that further limits her "normal" activities just is NOT worth any advantage it may provide. The other option is the Port. It is like a PICC line that is inserted under the skin threaded up to a larger vessel and has a balloon that sits just under the skin. Any time we would need veinous access we just poke the balloon with a needle and BAM veinous access. The problem with a port is that it needs to be surgically placed, which in the past has never seemed worth it to put Kaitlyn through. We always had other options, but we are running out of access the older Kaitlyn gets.

The other issue is that Kaitlyn has a blood disorder and with ANY sort of permanent line she would have to go on blood thinners for the rest of her life. So now, not only are we dealing with permanent veinous access, which comes with it's own set of risks, now we have a whole new set of risks related to the blood thinners. There is relatively low risk with the heparin based drug we have had to have Kaitlyn on in the past. But with that drug it needs to be delivered via a subcutaneous injection two times a day, and the drug is not cheap. While drug costs are usually not our first concern, when we have to pay out of pocket for all of Kaitlyn's drugs that certainly has to factor into any decision we make based on whether to enter into a commitment where she needs to be placed on a preventative medication!

Since Kaitlyn has been rendered inaccessible for a PICC line the Intensivist said that she would be up to place a central line through the large blood vessel in Kaitlyn's groin. This is where she has had her central lines in the past....but it is also where she has had her blood clots (veinous and arterial!) in the past. We have had a consult with haematology and they have said that once the line is placed we will have to start a blood thinner to keep Kaitlyn's blood from forming clots around the central veinous line! The blood thinner should only need to be continued for a short time after the line is removed. The intensivist couldn't make it up today, as it turned out, but she has promised to be up tomorrow morning before noon to place the line.