Tuesday, March 30, 2010

It has been almost a week since we have been admitted to PCMC. A lot has happened over the past few days. Saturday Harmonee received her PICC line so she could start her TPN feedings and hopefully gain some weight. Unfortunately she has continued to lose weight. Thursday when we were admitted she weighed 6.5 kilograms, now after 5 days Harmonee weighs 5.4 kilograms, which is a difference of 2 lbs. With the TPN Harmonee is only allowed to eat 7 oz in a 24 hour period. Surprisingly this is the right amount for her. Saturday her temperature also kept jumping. This has lasted until today. Her tempurature, when last checked, was 38.3 c. She hasn't been able to keep any food or medicine down since last night. We also found out last night her blood had come back to show a staff infection in her central line (PICC) that today they are starting more antibiotics for. We also found out through this hospital stay that Harmonee has developed a heart murmur, more then likely from her acidies.

Harmonee's tummy is actually smaller then it has been, it looks so good on her! The doctors told us this morning that if everything goes good, and her blood cultures come back negative tomorrow that we will be able to leave on Thursday. Layla is getting anxious to see her little Marnee! She has been staying with grandpa's and grandma's the past few days and she has been asking for her. When I called her last night instead of saying anything to me she asked how Marnee was. Layla is a lot smarter then her age, she understands that Harmonee needs to be here in order for her to be able to play later on. Easter will also be the first holiday Harmonee has been able to spend at home since Thanksgiving, which makes this Sunday an even better day!

Thursday, March 25, 2010

We are back again... to our home away from home PCMC. It's not so bad anymore. They drained her tummy this morning just minutes after being admitted and getting to her room. The nurses were even rushed to get her vitals, height, weight, etc... the usually when being admitted, and get her to x-ray as fast as they could. It would so nice not having to starve her, then wait on typical delays of everyday hospital problems. This time they drained 240 ml from her poor tummy, which has now dropped to 46.5 cm from a 51 cm when measured in liver clinic this morning. I wasn't able to be a match for Harmonee, which has added more stress. But to help, Amy, Harm's transplant coordinator said they have received liver offers specifically for Harmonee. Unfortunately, these offers had to be declined because of problems with the liver. One liver was actually excepted but given to another baby because Harmonee was the "runner up". I know it sounds like bad news, but its easier to look at the brighter side then get overly jealous of the baby who received the liver instead Harmonee. Now I can say that Harmonee is on the top of the transplant list and the wait is going to be much shorter then the 7 months wait I was at first expecting. I am so happy that it is going to be sooner. Dr. Book said she is very sick now and needs one as soon as one becomes available it is Harmonee's. This news came at the right time! The stress was getting to be to much and all to often were the walls closing in with no way out, and tears start runny with out even a second thought of emotions going through my head. I have the optimism that this is going to end soon! No more waiting. No more painful nights. No more admits to drain a tummy that will be just as big in a week. No more waiting next to the phone with crushed hopes when its not the hospital calling. It will soon all be better! Although lets hope that it isn't for a few more days! Harmonee was also admitted because of a little fever she has been running. They did tests to see what it was today, we found out that it was a respiratory infection. If a liver did come in at the moment, she wouldn't be able to receive it due to her fever.
Harmonee now has an at home PT as well who has been working with her. She is getting better at balancing her tummy on top of her little legs and letting the rest of the strength in her back help her to sit up. She is learning to reach out for stuff in front of her and using her little fingers. Her PT, Anna, said that she was on schedule for her age, except because of not being able to do tummy time, we have to do a few different exercises to keep her on that schedule. Mentally she is caught up... plus some! Since it is really the only thing she has been allowed to work on because her physical attire doesn't allow much, mentally she has gotten very strong and getting stronger!

Wednesday, March 17, 2010

Harmonee is back home! We are all a little surprised that she came home on a holiday instead of spending the full day with the nurses down at PCMC as she has with every other Holiday. She is tucked in bed with her new pump working its wonders, doing great! Hopefully getting ready to have a FULL nights sleep since formula is being constantly ran into her little tummy. Her at home care nurse just left after giving Brandon and I the education how to work her new NG tube and pumps and everything else that she came home with from this hospital stay. Layla is staying at Grandpa Phillips house with Brandons sister who just flew in from Michigan, Harmonee is anxiously awaiting to see her tomorrow. But, as for this quick up date, I am off to bed to hopefully catch up on the lost sleep we had at the hospital. Today is a good day and we all have our fingers crossed that this day turns into a good week with maybe some good news!

Tuesday, March 16, 2010

Harmonee's hospital stay wont be very long, she gets to go home to her sister tomorrow! I have sadly started to love these random hospital stays for the simple reason that even though Harmonee hates her stays, she goes home feeling better then when she first was admitted. Today her little tummy was drained, and while I was finishing being tested for live donor, Harmonee was loving' life being the nurses little helper. Harmonee had a fun day and is now sleeping it off happy and comfortable!

This hospital stay has reassured me that nothing is a for sure go until Harmonee has her new liver in its place in her body and she is getting ready to be taken to the PICU. I was able to finish my 'live liver donor' testing today, and have been given the go ahead, although following has also been the agonizing delay of 'NO' and 'Maybe'. This morning I was able to start the day with a positive attitude since the first thing I was told was everything was a go and there would be no more delays. They were going to set the transplant up for May, I was even letting my excitement get the best of me by seeing wishful visions of Harmonee walking along the furniture and crawling after Layla. Unfortunately due to Harmonee losing weight and not growing, a maybe came into the equation on if she would be big enough to receive my liver. After a few hours of waiting while the doctors had meetings and calculated weight by size, they came to the conclusion that she would have to gain her another 6 pounds before my liver would acceptable. Harmonee doesn't have that long. A cadaver would become available before the live donor transplant could take place. But that was no problem, I would still be able to be her donor in the case that a cadaver does not become available before time. So to end the night we are again at the worry of waiting for 'the call', either to tell me that everything will be okay for the live donor, or the call that Harmonee has a cadaver waiting for her. At least we get to look forward to going home tomorrow and being with Layla and Daddy. Right?

Monday, March 15, 2010

I haven't updated in a while and since we are back in the hospital and I am having troubles sleeping, I feel a need to be on my lap top to pass time. What better way to pass time on my lap top then to blog about updates and such for those of you who follow Miss Harmonee throughout her sickness. Last Monday at liver clinic daddy got to go with us. Since it was his first time being able to come the transplant team was more then welcoming keeping him up to date and filling him in on the missing/forgotten words I had not relayed to him. Of course it was rather nice having him at the appointment, doing all of the talking and filling the team in on Harmonee's latest. Unfortunately they set a goal for Harm to be eating at least 24 ounces out of 28 ounces a day with micro lipids. Telling a baby with no appetite and no will to eat more then maybe 15 a day after being pushed too... it just doesn't go well. Harmonee ate okay for the first few days, but soon started to vomit everything back up and once again dropped her eating habit to about 7 ounces in a 24 hour period.
Today we came to the ER, where they did some lab work and waiting for a room, while daddy and grandparents got education on the transplant surgery by our lovely coordinator Amy. Finally back in our room we got a lot of breaking news.

News #1: We were given the news that her ultrasound (which they had done while she was in the ER) showed a lot of fluid build up in her little tummy. The doctors decided to drain it in the morning, (which brings us to why we are having to spend the night) Fortunately, Harmonee gets the be the first one to get her little tummy drained right at 8:00 a.m.! No delays. But once again Harmonee will be NPO until after her procedure.

News #2: Harmonee had to have an NG placed. Which for those who don't no it is a feeding tube that goes down through her nose into her tummy. They have been dripping formula since we got to her room. Harmonee looks like she is already starting to feel better getting a little something her tummy along with the formula she does manage to eat by mouth. Which has only been about an ounce so far but with constant formula going into her tummy that is pretty good. This will also help her not being able to eat since she will have gotten plenty to hold her.

News #3: I am a match! I still have a few more tests to go through before we are able to actually do the transplant, but at least there wont be any more waiting! The scare that Dr. Book gave us by telling us that by how sick Harmonee is she would need a transplant within 3 months to prevent a constant stay until a liver became available is over! I am a match and hopefully soon Miss Harmonee wont be just watching Big Sissy Layla play and run around but will soon be crawling after her as fast as she can! The two besties will finally be able to play!

Since my time is running short of sleep and Harmonee will soon be awaken and hungry I should probably try to manage a few minutes of sleep before then. Thank you all so much for your prayers and for following Harmonee and taking the time to learn about her disease and others like hers. God has truly been with us.

Monday, March 01, 2010

Sitting with Daddy 1 day before getting admitted to drain my tummy.

The works...

Playing with my rattle in the hospital, passing time...

Sleeping off the anesthesia

After having my tummy drained


Before going to get my tummy drained...



My crib... Can you tell mommy has a lot of extra time on her hands???
Not that much...

My cute butterfly wand from London!

The past week has certainly been eventful. Last Monday during liver clinic Harmonee was admitted during her first appointment. Her belly was very tight, the doctors didn't have to think twice about admitting her. Monday we spent waiting in her room relaxing preparing for Tuesday morning where Harmonee was not allowed to eat any formula after 3 a.m. and no clears after 6 a.m. Her belly was scheduled to be drained at 12, noon. At 12 noon ultrasound called her nurses and told us it would be delayed a few more hours because of a stubborn case. As we tried to entertain Harmonee as to help her not to think about her tummy growling she was finally taken to ultrasound and put to sleep. After finally getting her to fall asleep, the doctor drained 500 ml from her poor tummy putting 300 ml into infection tests. Harmonee slept the rest of the night. Wednesday brought a big surprise to all of us! Harmonee was doing so much better! Her poor tummy was so much smaller, she was able to move and be comfortable and was happy to feel a little more normal! On Friday we went to Ogden Regional to have some more labs done which also came back good! Today, was another liver clinic. After a close call of almost being admitted for the 3rd week in a row, we were allowed to come home on the condition we come back next Monday to check on her little tummy and make sure the fluid hadn't built up again.
Today at liver clinic we saw another liver mom, Liz, whose daughter, London (lulu) had just received her transplant in January. It was so nice to see her and such a reassurance that this might be a long road that we are on, but there is a goal. I asked her how she did it, and I really look up to her for how much she has been through. Sometimes it feels that I don't know how much more I can see Harmonee go through but seeing Liz and London gave me hope. London gave Harmonee a little butterfly wand which we found out today is the symbol for organ donation.