Just after I returned to Hana’s room just after writing the last post, I learned that she had spiked a fever (102.4). Now they are culturing her PICC line for infection and collecting a urine sample to culture for a UTI. I’m hoping for a UTI or it turns out to be nothing. These things always make my heart plummet. But we have to take it as it comes. It’s a roller coaster.
Today they are continuing to wean Hana’s Precedex (dexmedetomidine) drip. Her clonidine patch should be effective so they can start to wean a little faster. Overall she is a little overly sedated. We are trying to be careful that Hana doesn’t get her days and nights mixed up! Last night she was wide awake and playful at 10pm. They are also increasing her aspirin to 3 baby aspirin a day (crushed, mixed with water and sent down her feeding tube). Since they took out her arterial line yesterday, Hana must have blood drawn peripherally- the way we all do, with a needle stick. This will still happen every day for a while until her results are stable and then she will only do it it twice a week.
The physical therapist and occupational therapists came again today but Hana was so sleepy that she didn’t do much. However, they did get her out of bed and had her sit on my leg on the floor. We did that for two hours! Hana would fall asleep sitting up (with me supporting her) and then wake. I think it was really good for her to start using her muscles more and to get out of bed!
Last night my mom made a Berlin Heart for Hana’s Christmas reindeer! Everyone loves it. Thank you all for the packages and cards and goodies! But most of all, we are so thankful for all the well-wishes and prayers. It really does help us knowing we have so much moral support. We feel very lucky.
Today Hana had more OT and PT, which they do simultaneously . She sat up with support and reached for toys. I missed it, but apparently she tried to stand up too!
They put on a 1/4 of a clonidine patch so that they can start weaning her off the precedex tomorrow. This is the last drip to wean. Hana was also switched to regular nasal cannula on 2L and she rubs it out of her nose and her O2 level stays at 100% so I think she is ready to breathe on her own. Then we can move to the step down unit. They are thinking early next week, as long as there is a bed available. Hana should get her own room, if one is available because she is active on the transplant list. Oh, they also took her arterial line out, which they tried to save so they don’t have to draw blood from her PICC line, but the art line stopped working. So now Hana no longer has an arm board on her left arm which means use of both arms and hands!
Hana is getting bored. She doesn’t want to watch tv shows or sing songs or play with toys- what she wants is to get out of bed. She also wants to drink. That should happen tomorrow!
Today is Day 2 on the transplant list. I decided to chronicle her wait time with photographs on this page.
Hana’s progress is moving along. They took off the CPAP mask and switched to high flow. Tomorrow morning she will hopefully get switched to regular nasal cannula. She is still weaning from the versed and they will continue to turn that down every six hours when she gets a dose of Ativan. They will start weaning the precedex tomorrow which will be the last drip to take off. This can cause low heart rate so they will have to watch her carefully when they start to wean her and they are starting her carvedilol today.
Hana is actually getting bored! She is using her voice a bit and even smiling! We bought a ukulele yesterday and are starting to play for her. She doesn’t seem satisfied with much – I think she wants to get out of bed! The physical therapist and occupational therapist came by today and started to do a few things with her, like get her sitting up, which is very wobbly and not yet possible without support. Hopefully soon!
Thank you for all the wonderful support! It’s a little hard to believe that Christmas is so soon!
Today Hana had a fever (38 degrees Celsius) and a high white blood cell count (70 K/uL). This makes everyone worry about INFECTION. She had finished her post-op antibiotics yesterday so they started her on 3 antibiotics today and they also cultured her PICC line and IJ (internal jugular) line and they did some other blood work. By the time they rounded on Hana the results came back and it does not look like infection but a reaction to the steroid that is used to treat high fibrinogen levels (which need to be low so clots don’t form in the Berlin Heart). For me, it feels like an internal roller coaster ride.
They are moving right along, especially to get her off her IV drips so they can take more lines out and reduce the threat of infection. They took the IJ line out (my least favorite, I’m glad it’s gone!) The fentanyl has been off since yesterday evening. They took off the Nitroprusside and are going down on the Milrinone and increased the enalapril that she gets through her feeding tube. They stopped the Heparin drip and she will now get heparin as an injection twice a day (Lovenox), everyday she has the Berlin Heart. They decreased her versed drip. She is getting alternating methadone or Ativan every three hours. Her withdrawal is somewhat borderline in my opinion, her hands often shake when she is awake. they stopped her TPN and lipids and she is now getting a “normal” volume of continuous feeds (NJ tube right now). They’ve been decreasing her CPAP pressure (6) and hope to have her on high flow nasal cannula by this evening.
I did not get to hold her yesterday purely because of logistical reasons but hopefully that will happen today. The great surprise yesterday was that Infection Control took her off isolation- so no more gowns, masks and gloves! It makes it so much nicer to touch skin to skin (but I also realize how much the masks and gloves were helping to keep my nasal passage and hands moisturized, the hospital air is very dry and can make my nose bleed)!
Despite the infection scare, which was a big deal for a few hours this morning, this is not the biggest news of the day. The big news is that today Hana has officially been listed as status 1a for transplant. Today is Day 0 and the average wait time in our region for her age range is 6-8 months but it could be any time.
Today is Day 27 in the CVICU. I asked how much longer Hana may be here before moving into the floor and they said the soonest she would move is 48-72 hours, if things move as they have and she really doesn’t have an infection. I was just hoping to be out of intensive care before Christmas!
Hana had a quiet night and slept well. Today she is agitated but it hasn’t been too bad. Her heart rate and respiration rate have been normal. She has been tolerating being extubated very well. They will come down on her CPAP from 10 to 8. Her chest X-ray continues to look better and they can hear more aeration from her left lung. They have been managing her withdrawal quite well. Today they will turn off her fentanyl. They will creep down on her versed. Yesterday they started methadone and they will increase her Ativan both for withdrawal.
As for other things, Hana is still on a post-op antibiotic. She is getting a steroid to treat high fibrinogen levels. She is getting IV heparin therapy and yesterday they started aspirin to thin her blood. They are going to try to get her back on her oral meds for her heart failure- enalapril and carvedilol and they will start reducing her Nitroprusside (eventually she should be off milrinone but that will probably be the last to go). They stopped her diuril and will continue with IV Lasix. Things are moving along.
Today we get to hold her!
They took Hana’s breathing tube out around 11:45 this morning. So far it’s going well. The doctors keep walking by the door to check (and coming in too). I also feel like they are very serious about carefully managing her withdrawal from sedation, so that’s reassuring. We’ll see how it goes from here!
Last night Paul and I were surprised to hear them talking about extubating today. I guess with a positive bronchoscopy there is no need to keep Hana intubated. What concerns all of us (me, Paul and my parents) is their lack of a plan. The last two extubations obviously did not go well and afterward there was lots of talk of “next time we will do this”.
One time Hana failed extubation primarily because of upper airway the edema – which can be treated with steroids if you give them about 10 hours beforehand. But the attending physician on this weekend doesn’t believe she had upper airway edema which would be the opposite conclusion of the doctors who were present at that time including the one who had to reintubate her. This sounds shortsighted to me and it worries me that some precautions will not be taken. In general I refrain from saying anything negative on this blog about any of the medical professionals.
The second time Hana failed extubation she was going through intense withdrawal and she was having to deal with breathing with one lung and reduced cardiac output. This time her cardiac function will be supported by the Berlin Heart and she should have more use of her left lung. But she will still have to go through withdrawal and their “plan” to manage that hasn’t impressed me. I guess there aren’t too many good options especially since Hana has had to have such high doses of sedatives. So, we start to take away sedatives today to start the withdrawal and we (me, Paul and my parents) will have to be ready at bedside to console her. The nurse and NP and attending physician will just have to manage her sedation very carefully. Hopefully they are playing close attention. It has never been more obvious to me than now at how much personality plays a role in practicing medicine.
The plan is to extubate tomorrow as long as Hana’s chest X-ray in the morning looks okay and she is tolerating the ventilator changes. It will be a very busy few days where someone may need to be at Hana’s bedside around the clock. My dad even delayed leaving so that he could help. For the next several days we will be in all hands on deck mode.
After Hana’s bronchoscopy this afternoon, everyone was happy. Her left bronchus is now open as is her left upper lobe. So, the chest X-ray has not been giving a complete enough picture. This is encouraging because it means that Hana’s lung is starting to inflate again. It just may take some time. They’ve even talked about extubating as early as Monday!
Many people have asked where they can send mail. I created a page for that but here it is as well:
725 Welch Rd
Palo Alto, CA 94304
Today Hana will get another echocardiogram and a bronchoscopy. Hopefully we will get some info from both on what the status is for her left lung. If the heart is still pushing too much on that lung, they may not be able to get it to fill again. Let’s really hope this does not happen.
Otherwise, Hana continues to do very well!