Well Nora continued to do great and so we were discharged from the hospital yesterday afternoon and have our little angel back home with us again. YAY!

I will post some new “at home” pics and a better update on her current situation later today.  For now time to do a little 2 month birthday celebration with my girls.

We meant to make this post almost two weeks ago when Nora first came home from the NICU but it took us a bit to get our pics organized and as you all know we’ve been a little busy. So THANK YOU, THANK YOU, THANK YOU to the great Dr. Patterson and all of the wonderful NICU nurses. Having Nora in the Newborn ICU for the first six and a half weeks of her life wasn’t fun but knowing that she was cared for by such wonderful people made it easier to deal with. We didn’t get pictures of all of the nurses but here are a few. From left to right we have Dr. Patterson, Jill, Ashley, Petrea, Beverly, Alicia, Stacey and Mary, and Amber. (please forgive us if we spelled any of your names wrong) Nora has made more nice nurse friends in the PICU but still misses her NICU buddies. Once we get her home again we wont want to see the inside of the hospital for a while but we still promise to bring her back at some point for a visit.

Just a quick update that Nora is still doing great, no sign of bacteria in her blood, and so she got her IV Port today

The great Dr. Crooms did the surgery this morning and everything went well. We expected her to get a BROVIAC due to her small size but Dr. Crooms found a Port that was small enough to fit in her. This is great because it will have less chance of infection, be much easier to manage and will allow her to get wet! We will still need to be very careful with her because it is still a central line and since it is under the skin it will be a bigger issue if it gets infected than the PICC line. The good sides of it outweigh the bad though so we are excited to have it done. We expect to get her back home either Tuesday or Wednesday and get back to life at home with out little girl

Today was a good day! Nora has had NO fever all day long and is back looking and acting like our little angel

The last 2 days have been really hard on her and she was looking terrible so we are so happy to see the return of her bright eyes and smiles. They figured out the bacteria is Klebsiella. Not something you want but since it seems we caught it right from the start and started getting the antibiotics in her so fast that she is going to recover very quickly. We are hoping she will have no trace of the bacteria by the end of the weekend and the great surgeon Dr. Crooms will do her BROVIAC surgery and give her a button for her G-tube Monday or Tuesday and then we we hope we will have her back home by Wednesday or Thursday. I think we will keep her home a bit this time. Sorry TMH RN’s we know you love her but we are getting a bit tired of Hotel TMH.

Also for those of you concerned with our ER visit, we were too. We have already spoken with several people at TMH including the head of the ER who was very nice and concerned and seemed like she would be taking action. We hope that some of the things that happened to us will help TMH make adjustments to their ER system to provide better care in the future for all patients. Things like being able to flag people like Nora who may need special care so TMH staff can instantly be aware of the patients condition would make a lot of sense in my opinion. We hope they see this as well and take action.

Thank you ALL for the love and support you have continued to show us and send Nora’s way It is what has helped us get through it all and stay so strong. We will post some newer pics of Nora soon. She is getting bigger all the time and is cute as can be, if I dont say so myself

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……

Well we made it through a great day with Nora on her first full day home. She seems to love it being home and we have had lots of fun. As I am writing she is dancing on the bed with Sarah and smiling away. If we put her down she screams little fake screams. Pick her up, happy as can be. I think she has been a bit spoiled by all the great NICU nurses so I guess we will just have to keep it up, which I dont think is going to be a problem

I thought since were home now and setup with our new home system with portable pumps and everything I would take some pics of all her “accessories” and give a little explanation to give everyone an idea of what taking care of Nora is all about. Along with a slew of medications we give her throughout the day below is the bulk of Nora’s medical equipment.

Nora’s G-Tube (feeding tube):

Ok so the G-Tube looks worse than it is, although its nothing fun. The redness is normal the doctors say and should lessen as her skin begins to become more used to the rubber tube sticking out of it. The basic way it works is there is a open hole in her belly that goes directly to her stomach. The G-tube is just a rubber hose with a small balloon on the end that you fill up with air or water after inserting it into her which keeps the tube from coming out, although Nora has pulled it out couple times already at the hospital so we expect the day will come we will be replacing it. Since the stomach has so much acid they dont worry to much with infection so more or less its hook her up to the feeding pump, fill the bag and hit go and Nora’s tummy is satisfied for 3 hours.

We are currently feeding Nora through her G-tube only. We hope to go back to bottle feeds soon but are taking it slow to find exactly what she can tolerate in terms of amounts of formula at this point. Right now we are feeding her a continuous 11ml of Elecare formula every hour, for 3 hours, with a 1 hour break. This means some long nights for Sarah and I so we hope to get her on a longer feeding schedule at night soon.

Nora sleeps great through the night though, never made a peep

Nora’s PICC line:

The PICC line is how Nora is currently getting the TPN and Lipids (hopefully shortly replaced with Omegaven). It is similar to an IV except that they thread the plastic tube from Nora’s wrist to her chest where it is hooked to the Superior Venacava, right outside her heart.

The PICC line pretty much sucks. It has to be kept very clean and makes Nora very susceptible to infection since she more or less has a open line right to her blood stream. It can also clot very fast and stop working so we have to keep some sort of fluid running through it all the time. The pumps for the TPN and Lipids are made to be portable and are fairly small, run on batteries, and come in nifty black fanny packs. I think we will find a good backpack to keep the pumps and all of Nora’s supplies in to make her as portable as possible and avoid the fanny pack look

Nora has already had 3 different PICC lines and putting them in is not a very fun experience for her so we hope to keep this one for a while. The ultimate goal I think will be to go to a port or something more permanent that is not quite as fragile and a bit less susceptible to infection.

The TPN (yellow), the Lipids (white), the Feeding Bag (orange cap), the Pumps, and the Pole:

Pretty simply the pole that holds everything while we are home. Its not to big so pushing it around the house with Nora is not to bad although I think I am going to try and find something better, especially if we will be traveling as the pole does not break down very small.

The Feeding Pump:

The feeding pump is pretty easy to use we. We fill the bag with Nora’s huge amount of formula (kidding), hang it, prime the line, connect it to Nora’s G-Tube, turn the pump on, listen to 3 VERY loud beeps (wheres the volume on this thing!), set the feeding amount (currently 11ml/hour) and click the knob to start.

Thats it, Nora’s fed for 3 hours as long as the pump keeps doing its job. MMMMM Nora loves her food so go pump go!

TPN and Lipid Pumps:

We have 2 of these but they are the same, and work the same. A bit more complex but still pretty easy we just reset these every morning when we change her TPN and Lipids out. Its more or less a series of prompts we walk through answering “Yes” each time. Nothing we cant do.

The home health care nurse is also teaching us how to mix the TPN ourselves too but for now she is doing it until we feel comfortable. Thank God too cause this is a lot to take in at once but for a computer nerd and a bookkeeper I think we are making the transition into nurses fairly good.

Tomorrow we take Nora for her first appointment with her new Doctor, Dr. Dalrymple, since Dr. Patterson will no longer be taking care of her now that she has left the NICU. We have already met with Dr. Dalrymple and he seems like a very nice and smart man and Dr. Patterson assured us he would be following our case. We will then be taking her to Shands Childrens Hospital in Gainsville for an evaluation next week with their GI specialist. The next step after Shands will be to see if we are going to be able to get the Omegaven here or if going to Boston for treatment is our only option. I spent the day on the phone with the FDA, our insurance company and our doctors trying to work it out so we can stay here but at the moment we are not sure how things will play out. Stupid system makes everything hard

And lastly our little monkey all ready for bed tonight:

This is what makes it all worth it!

Well it took a great doctor, some speedy (and great) nurses, a blood transfusion and a couple new home health care friends but we were able to smuggle Nora out of TMH tonight finally!! YAY!!!

We had a bit of a snag when we got home with the new IV and feeding tube pumps when 2 of the 3 pumps stopped working right within an hour or so of getting home. The feeding pump refused to stay on longer than 7 minutes and one of the IV pumps started beeping “air in line” and sure enough there was about 12 inches of air creeping up the line. We called the home health care folks and a very nice RN was here within 15 minutes and fixed us all up with new pumps and gave Nora a quick checkup and was on his way. What a way to start the homecoming but hey at least we know how to handle an emergency and the response time of our new home care nurses

We will be sure to keep the blog up to date with updates and really appreciate all the sweet comments many of you have posted. To all the doctors, nurses, and staff at TMH we want to say a BIG thank you!! You have all been great to us and made this experience way easier for Sarah and I than it could of been had we not had such CARING care givers. We are truly grateful.

As I write this Nora is snuggled between Sarah and I laying sound asleep in our bed (dont worry Nurse Ashley she will be in the crib before we crash) and I must say its a relief to get her home even though I know we have a long road ahead of us. Abby (Ellie Brogans mom) posted a comment today saying “It can be very tiring the first month that you are home but it gets better. Now all the pumps and tubes just seem normal to me, I sometimes forget that not all kids come with “accessories.”” Thanks for that Abby, being home is a bit scary and those simple words made things feel better. For now I am just forgetting about the pumps, tubes and everything else and just enjoying my daughter, my wife and our life together as a family.

Some quick pics of the first night at home. I will post some more tomorrow.