Sorry for the late update. Just cause one is in the hospital doesn’t mean the other three are any easier to deal with.

A very busy day for Faith with some acting up.

• Infectious Disease (ID) is satisfied with her progress thus far. She still had a positive blood culture but it took much longer than the previous one to grow. This is an indication of a drop in the number of bacteria and how virulent they are. The theory is that there are some islands of colonization in her various blood clots. As the clots dissolve they release bacteria/toxins and since they are clots it’s also harder for the antibiotics to effectively work on them. The short story is she is going to be on IV antibiotics for at least 6 weeks with all the fun of the associated PICC line.
• Fever of 103.1 (Axillary) today. Treated with icy rags (yup just what it sounds like). They also ordered a cooling blanket. It’s a water filled mattress pad that has an external device that can circulate chilled/warmed water to help regulate her body temperature. More kind than icy rags but sometimes old tried and true works best. Two possible causes for the spike were 1) Her paralytic agent (Vecuronium) was just stopped which is known to sometimes cause fever 2) Because the infection is still active she might have these spikey events for some time until it’s fully controlled.
• Much more awake now. She was able to talk a very little bit even with the ET tube in. Her words “Leave”, “Stop” & “Home”. They are afraid her sedation levels are too high to extubate as she might not have the drive to breathe on her own consistently. Our concern is she isn’t sedated enough to remain intubated. She may make the ultimate decision if that tube stays or goes.
• ICU vs. ENT – Our old nemesis “the tracheotomy” entered into conversation again last night sorta out of the blue. ENT is much more confident in a patent airway than ICU. As a “bonus” our least favorite attending (Mr. sit around as she decompensates) is back next week. We are working hard to move to the other unit for that and other reasons. The ENT surgeon spoke with Sue yesterday and will strongly advocate for a non-surgical approach to getting and keeping her airway intact and functional.
• I’m spending at least Friday night and maybe Saturday night with Faith again so who knows what hijinks she will pull this weekend. Historically the kids have always had their most memorable events (code for trips to the ER) on Dad’s watch. Guess they must feel more confident in my ability to deal with their childhood folly :-).

Good day today

• Faith started on her methadone/ativan withdrawal regimen in preparation for cessation of the sedatives and extubation. It’s going to be about a month before she is once again rid of all the narcotics.
• They performed an ultrasound of the clots in her left leg again today to see if there have been any changes for the better or worse. No news yet as to the results of the test.
• She was much more awake today (still quite high on the sedatives) but responding to questions and mouthing along to some of her favorite songs (a bit) etc. Sister Jessie was there to visit her today and the two kept quite busy. It’s a good “awake” she isn’t fighting, yet, and again she needs to wake up more if we want to get off the ventilator by the end of the week.
• Infectious Disease (ID) stopped one of the antibiotics and started a new broader spectrum one as the blood cultures are still coming back positive even with double coverage.
• They have replaced the foley as she needs to get more fluid out of her system, lungs are still a little soggy. Needs to get about 1 more liter out and then they will consider extubation maybe Thursday or Friday.

Generally a good day and hope they continue to get even better.

Sorry about the website’s reliability issues. I’ve requested my hosting provider move me to another server that is stable. We will see what happens, nothing changes as far as all you are concerned.

Another good night & day with no events.

The Good

• They were able to stop one drug named Dopamine, it was used to help regulate her blood pressure. She is doing that very well on her own.
• ENT was in yesterday and feel confident about the success of extubating by the end of the week if all else goes well. End of the week is code talk for early next week.
• Clinically she looks well, all of her vitals are good and holding.
• She is tolerating the lowering of ventilator settings without any problems.
• The sedation continues to work!

The Bad

• Infectious Disease (ID) was in again today and said she will most likely require 4-6 weeks of IV antibiotics. Now this doesn’t mean she needs to be hospitalized all that time she can receive it during rehab and also home. The trick is they will need to start a PIC (Peripherally inserted central catheter) which is of course another source for infection and clots and requires nursing maintenance.
• The specific bacteria has been identified as Klebsiella, the bad is that yet another bacteria not yet identified but gram-positive (as opposed to the current gram-negative) has also shown up in cultures. She will be restarted on another anti-biotic (Vancomycin). It may be a fluke as it could have been from skin contamination or culture contamination. Better safe than sorry.
• Faith had blood cultures each day since 4/21. She went septic on 4/22 so subsequent cultures after starting antibiotics should be negative. The one from 4/23 came back positive for the bacteria they are treating her for.
  • One theory for this would be bacterial endocarditis in her case it would be a clot in the heart that is harboring bacteria and redistributing it along the bloodstream. She had a full echo cardiogram again today and cardiac has cleared her completely of any of those nasties and in fact said the heart looks really good.
  • Another might be that her IGG levels are very very low (200 when 600 is considered low). They are going to give her IV Immunoglobulin to assist her immune system in fighting the infection along with the antibiotics

Overall we are pleased with her progress to date. Lots to do and a long long road ahead.

As parents in an ICU you sometimes build relationships with other parents. The experience we have there and the things we have seen aren’t very relatable to our other friends who don’t have the same frame of reference, so we support one another. One such friend is Nina and her son Peter. They have been there for as long as we have. His course is much more difficult than Faith’s and prognosis is much worse, she gave us the news today that he is in the early stages of heart and respiratory failure. This is indeed a bad indicator for a successful recovery, please keep them your prayers as their journey may soon be coming to an end.

Another good night for Faith & Mom.

Yesterdays blood cultures came back negative which indicates that the antibiotics are working, she will need to be on them for about two weeks. She is slowly adjusting to the ventilator wean but it’s still a while off before we get away from it. She also has a lot of fluids to mobilize and get rid of. The type of bacteria she had causes the veins to get leaky and lots of fluid is lost to surrounding tissue. They infused her with Albumin on Saturday to help suck it all back into the bloodstream so the kidneys could get rid of it.

They pulled the foley today since they think it was the source of infection as her urine cultures were positive. They have also called in infectious diseases on a consult to see what can be done to prevent more infection and make sure her immune system is operating at it’s best. It’s a known fact that kids with Down’s Syndrome can have weakened immune systems.

It’s safe to say she is on the mend back from yet another complication. It is also safe to say that we are not getting out of the hospital anytime soon, which most likely will make inpatient rehab more a possibility. She was so strong after her last discharge we thought that inpatient was a bit of overkill and we might be able to do it outpatient. We will see how she does with time.

The family would again like to thank everyone for all their kindness and help over this whole ordeal, you are so appreciated. Thanks to all of you who take the time to read my rantings about our little girl and her antics.

Not superstitious or anything but glad to be beyond day 13!

Good night, actually was able to get some restful sleep. Faith behaved very well and has improved somewhat overnight. They were able to stop one of her medications to keep her blood pressure (BP) up (vasopressor) and have been able to start weaning the other (dopamine). Oxygen levels are very good will still quite a bit of support from ventilator but it is also on a very slow wean down.

Long road ahead, hopeful we are taking the first steps.