One REALLY Long Week

Sorry for the lack of updates but I started writing this post several days ago and just as I thought things were going to settle down things got crazy again. Nora unfortunatly has not had the best week 🙁

Having Nora home was WONDERFUL and the first few days Nora was extremely happy and seemed to be doing great.

Then on Fathers Day I screwed up big time and after taking Nora for her very first walk in her stroller (a big event) around 6pm I caught Nora’s PICC line on the stroller when I was taking her out and it broke off resulting in blood shooting out of the broken line. We immediatly took her to TMH Emergency Room which is like 5 minutes away from our house and I rushed in to be met by the most idiotic medical staff I think I have ever come across. I explained our situation to the ER Triage nurse fairly calmly and I was told, with attitude, that I would need to fill out papework, bring her in and wait for them to see her. I tried explaining again that due to her fragile nature that I didnt want to bring her in the ER until there was a room available and was more or less told tough they had to see her first. At that point I didnt want to argue so I quickly filled out the required paperwork and explained my situation again to 3 other nurses who all pretty much responded with blank stares. When I gave my paperwork to the nurse to start entering so we could be admitted she started typing it in and then stopped and turned to the nurse next to her who was ordering pizza and started discussing what they were ordering. At this point I was pretty well pissed and said “lady you need to be entering my daughters information and not ordering dinner”. She looked at me like I was a total jerk and said “Oh I am not ordering any dinner, just talking to her about it.” I think she realized from my expression that she better get Nora’s info in fast and stop talking and pulled her up on the computer. At this point it is obvious, as she pulls up Nora’s history in the computer, that she realizes that we DO have a baby who needs special attention and starts moving her through a bit quicker. Then the nurse who was actually looking at incoming patients said “make sure Pedro (or something) is next” and the nurse reshuffled the papers and admitted “Pedro” a guy who looked about 25, appeared in great health, with the exception of a twisted or broken ankle he had gotten from playing soccer from what I overheard. Pedro was grinning from ear to ear as he was pushed into be admitted so he sure didnt look like he was in much pain or needed “emergency” assistance. At least not ahead of the young girl having a miscariage and Nora with blood coming from an open PICC line. So after Pedro got moved on we were brought in and the admitting nurse looked at Nora’s PICC line, with no gloves on and typing away on her keyboard in the process (we should of stopped that but it didnt even register till later that she didnt have any on, hindsight sucks!), and said “hmm not sure what to do with this. Dont know if I should clamp it or not” and just dropped the bleeding line into her carseat where it was not sanitary for sure. I grabbed it and held it up as we went through the process of her paging the IV team several times with no response so they put us in a room, still bleeding with no clamp. When we entered our room the TV was blaring the 911 call from this story. Click Here

Which made me shiver.

I turned off the TV and ask for a clamp so I could clamp off the still bleeding PICC line since Sarah and I agreed its what needed to be done since nobody else was making a decision. Someone FINALLY brought in a pair of clamps talking about how hard they were to find…..clamps, hard to find in an emergency room?!?!? We have friggin clamps at home and we are only 7 weeks into this!

Next comes the IV nurse who was a very nice woman but clearly and fully admitted to not having any experiance with the type of PICC line Nora had. She looked at it for a while and then called the NICU nurses and asked if the PICC person from NICU could come from there to remove Nora’s line. After a bit of coaxing and approval from the ER doctor (or maybe NICU charge nurse, cant remember) down came Deserai the NICU RN. Just like everyone else at the NICU she was great! She took the broken PICC line out and tried several times to get a IV going with no success (Nora has little veins) but at least at this point the PICC line was out. Deserai had to go back to NICU at this point and during all of this we had learned that there was nobody at the hospital or on call that could put the PICC line in until the morning and so they would just be hooking her up to IV fluids for the night since TPN can’t go through a regular IV line. This seemed totally crazy to me but we kept being told “PICC lines are not emergencies” so thats why none of the 3 PICC people are available. Apparently PICC line team doesnt work weekends or something…..cmon TMH!

At this point it had been a couple hours that Nora had gone without her TPN and lipids and Sarah and I were concerned. She had also lost a good amount of blood since nobody would clamp her off. Finally a doctor arrives. Great! or so we thought…. I am not going to mention any names here as he might be a great doctor and just did not know enough about Nora to make a good call but he came in and said “why dont we just feed her through the G-tube” we say “because (for the bagillionth time) she has about 4 1/2 centimeters of small intestine and that wont do her any good, she needs the TPN”. He says, “well since nobody can put in a PICC line till sometime tomorrow we will just have to put in a IV and I THINK she should do ok without the TPN”, although he obviously had no experience with this sort of thing. He called the situation”the perfect storm” and told us not to worry that “you could throw a kid out in the woods for 3 days without food and water and they would be fine usually.” Wow that made us feel better about the situation!

At this point the Dr. KnowsNothing leaves and so feeling like we are not being cared for properly we call our home health care nurse Virginia (who is great) for some advice. We had already called her on the way to the hospital so she knew the situation already and was concerned that nobody was concerned about getting Nora back on TPN or fluids quickly. She told us if we did not start getting something done we should call Shands and try to just go there. FIVE hours later, a very nice, and concerned, RN came and took us upstairs to the pediatric ICU. At this point Sarah was crying and I was pissed and wanted answers. One of the RN’s on duty was a male RN who we had before in the NICU once. He was a nice guy but I was mad at that point and he did not respond to me in the most professional way and we came close to blows. I think he was used to dealing with upset moms and when he said “I have told you 3 times!” to me with an attitude and I looked at him like I was going to to rip his head off I think he realized he might of crossed the line with this dad. Thankfully he took the high road and left the room and went and called the doctor on call who we knew from the NICU who was able to assure me that now, finally, they would be hooking Nora up to fluids and getting her what she needed. Still no PICC team available for a new PICC line till the morning but at least we could relax knowing that Nora would be fine until the morning without the TPN. Ben, the male RN, then came back in and we made up. He really is a nice guy and seems to be a great RN, I felt bad for getting so mad at him but unfortunatly he got what carried over from the ER’s horrible care.

So we spent an uncomfortable night in chairs in Nora’s ICU room (while she slept peacfully all night comfortably in a big comfy bed, she is one good baby!) and in the morning Dr. Dalrymple came in and told us that a PICC line would be put in soon and we were out of the hospital by about noon with a new PICC line in Nora’s ankle instead of her wrist which makes having both her arms free which is nice. It is also a bit bigger line so it should not be so fragile, although I will be SOOOOOO careful not to ever do that again. I am not letting it eat me up as everyone keeps saying it was due to happen at some point but I am kicking myself for doing it just the same. At least Nora seems to be recovering just fine and we are getting close to getting past the 24-48 hour watching period so I think she is safe from infection.

Now back home for a day we are now due to go to Shands tomorrow and will be hoping to get more information on the Omegaven process, Nora’s latest blood test results, and whether we will be going to a BROVIAC or IV Port in the near future instead of the fragile PICC line. I think she is still too young for an IV Port but it makes us feel good that there is an option in her future that will allow her to swim 🙂

We planned on going to Shands Tuesday but Sarah woke up with a touch of a stomach bug and so we rescheduled for Wednesday. We loaded Nora up Wednesday and drove her down to Shands where we had a very positive experience with the doctors and staff there. They even have 2 patients already on Omegaven. They dont get the Omegaven at Shands but they were aware of it and seem very open to helping get it for Nora which should help expediate the process of getting it for her here. All in all the Shands visit was a good experience and I think they will be able to help Nora from a distance with minimal consultations which is great.

So now comes the real bad stuff, if the ER wasnt enough.

On Wednesday night Nora started acting a bit fussy. We thought it was just all the traveling and that she was just tired but we monitored her fever just to be safe. Thursday morning Nora woke up with a fever of a little over 99. Within a couple hours she her fever was up to 101.4 and so we took her to Dr. Dalrymple’s office where her temperature elevated to almost 103 and so they did an x-ray of her chest and then admitted us into TMC Pediatrics floor, ran some blood tests and a spinal fluid test to find out why she had the fever and started giving her antibiotics. Today (Friday) some of the results have come back. Spinal fluid was clear but they found a Gram negative bacteria in her blood stream 🙁 Her G-tube also came out today for the first time (twice), we replaced it with no problem both times. I think the second one was a defective tube. Funny it was the thing we were the scared the most about originally and now it seems so easy compared to the rest.

They have now admitted Nora back into Pediactric Intensive Care, removed her PICC line (assuming it’s the sourse of infection) and are giving her a good dose of antibiotics in hopes to kill out the bacteria. At this point it is just a waiting game to see how it all plays out. The doctors say that 95% of the time removing the PICC line and giving her antibiotics usually clears things up within 24-48 hours.

We sure hope so……